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Thursday, July 26, 2007

7/26/2007: Back for Another Round

Just two weeks since the latest round of chemotherapy, we returned to City of Hope (COH) for a "booster" round due to the not-so-unexpected return of the tumors in what have been the standard locations: under the right arm, the left rear jaw, and top of the right collar bone. The chemo session on Wednesday lasted about five hours.
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My medical team continues to monitor the situation since we all desire that there be the "least" evidence possible of the tumors when I am admitteed to COH for stem cell transplant August 13. The doctors call it control of the cancer. I am not sure if there will be another round of the chemo before August 13, but it is now evident that chemo alone is not the long-term solution.
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During the next two-plus weeks, we have a myriad of tests and procedures to be done in preparation for the SCT. Our nurse coordinator for the transplant assures us that all events are in line for the transplant, including the readiness of our donor who, as I have shared before, is a 24-year old male living outside of the USA.
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Note: Regarding MyJournal site: Perhaps you have noticed some changes. Yes, I have moved the site to a new publisher and host because of some technical difficulties with the prior location. Please continue to visit and continue to provide your comments, messages, thoughts, and prayers. Thank you!

Wednesday, July 25, 2007

7/19/2007: The Moment of HOPE Comes Near


We want each of you to show this same diligence to the very end, in order to make your hope sure. Hebrews 6:11 (NIV)
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After the “rough patch” of the last two weeks, it has been good to have a “normal” week. As of this last Monday, when I had routine blood tests and a physician visit, we found that the blood counts had not dropped; hence, no transfusion needed. We go back to City of Hope July 20 for more blood tests, but we expect that the counts are still in acceptable ranges.
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July 20 also marks the start of my medical leave. For the most part, work assignments and details have been delegated to an interim director and my Foothill Foundation staff of two, as well as others who are associated with Citrus Valley Health Partners. Dee Dee has given me decided assurances that now is the time to “release” the duties and stresses of the job and to concentrate on matters of treatment and recovery from the mantle cell lymphoma. Still, the ability to continue to function and be engaged in my work during the last 16 months has been a type of therapy and a blessing, in my view.
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Here is the timetable for the next few months:
July 20 through August 12:
Various tests and procedures, as well as physician and medical team consultations take place in preparation for the stem cell transplant.
August 13 through August 21:
Residence in the City of Hope Transplant Unit (6th floor of the Helford Clinical Research Hospital). During this time, I am due to receive 9 days of chemotherapy that will oblate my stem cells and immune system.
August 22: Transplant day.
What I have been told about my donor is limited, but he is 24, lives outside of the USA, and has a blood type O+ (which will become my blood type as I am now A+). The donor’s contribution will either be stem cells (obtained from blood drawn from an arm) or bone marrow (drawn from the hip). The policies and procedures of the collection center where the donor appears will dictate the type of donation I am to receive. City of Hope is prepared to handle either, but because the donation is coming from outside the USA, the cells and or marrow will be frozen for shipping. The cells are unfrozen during the transfusion process.August 23 through October 11: The critical period of recovery when my medical team constantly monitors my blood counts to determine the restoration of my immune system. I am told to plan on about six weeks hospitalization after the transplant and to allow for a 100-day period for initial "recovery."
October 12 through December 31:
Assuming that the recovery markers have been met, Dee Dee and I will take up temporary residence for an undetermined time in a patient/family cottage on the City of Hope campus. This allows for daily outpatient visits and monitoring by the medical team.
Then, perhaps by the end of the year or the first of the new year we will be released for several months of home confinement, the duration of which is still to be determined, but we are hopeful that life will return to normal within six months of the August 22 transplant. We can’t predict a date for the event, but we are hopeful that our “coming out” party can take place in late February or March of 2008, about two years after the first discovery of this disease.

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What about visitors while I am at COH? For the most part, visitors are allowed, but it may be well to check with Dee Dee, my office, or call the hospital [ 626-256-HOPE (4673) ] before you plan to come.
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Consult this source provided by The Leukemia & Lymphoma Society for more information about SCT.

7/14/2007: Hope is a 4-Letter Word


But as for me, I will always have hope; I will praise you more and more. Psalm 71:14 (NIV)
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Seldom do we know the value of something until that value is tested. So it is with HOPE.
No professional group may rely more on hope than those fund-raisers who work for nonprofit organizations.
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They ...
... HOPE that their organizations will be effective, worthy stewards of the funds entrusted to them.
... HOPE that they can create and manage effective appeals that will garner the support needed by their causes.
... HOPE that some donors will give at levels exceeding their expectations and that many will give at the "best possible" level.
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Over time, all fund-raisers deal with the reality of HOPE fulfilled and sometimes with HOPES dashed or delayed. No effort is conducted in a straight line. There are twists and bends in the road to any goal.
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As anyone knows who has followed this journal and read my e-mail or CarePage updates, we are now in the preparation phase for the matched unrelated donor (MUD) stem cell transplant (SCT) that is due to happen August 13. This is a few weeks behind the original schedule due to the fact that Dr. Nakamura and the rest of his team wanted to observe my most recent response to the latest round of chemotherapy that ended last Wednesday.
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Again, the good news is that the last 5-day round of chemo has successfully diminished the tumor sites, but the question remains: Will these sites remain “in control” up until the August 13 date for the SCT? That is our hope; that is our prayer.
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Meanwhile, the next significant personal step in this saga is the start of my medical leave on July 20. Because we have so many tests and procedures to be done before the SCT, my medical team believes it best that the work routine be suspended at this time. My leave may last for six months or longer.
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When the SCT begins, we are told to prepare for an initial six weeks of recovery in the hospital, the sixth-floor transplant unit at City of Hope (COH). That “watch” will be extended up to 100 days with residency for Dee Dee and me in one of the outpatient cottages on the COH campus. After that, we will be confined to home for the duration of recovery (the remainder of the six months or longer, as needed).
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Frankly, because of our hope in finding the lasting cure for this mantle cell lymphoma, we are prepared to do whatever it takes to reach that destination. There is much about my care that is out of our control, but being ready and willing to undergo the procedures, tests, and hospital stays are welcomed as necessary intrusions because they have HOPE of leading to full recovery. Despite the ups and downs of the journey, we remain hopeful that these ordeals will be behind us in the not too-distant future.

7/5/2007: A 'Frigid Breeze' in July


"If you can'?" said Jesus. "Everything is possible for him who believes." -- Mark 9:23(NIV)
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For Southern California or almost anywhere north of the equator in July, it is rare to face a frigid breeze. But that seems to be what we faced today with a call from our COH physician, Dr. R. Nakamura.
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As you know, we have been preparing for the allogeneic stem cell transplant (SCT) on July 20. Consult this source provided by The Leukemia & Lymphoma Society for more information about SCT.
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Now, due to the fact that the lymphoma has returned in less than three weeks since the last chemo (and this has been the pattern for the last several chemo sessions), Dr. Nakamura is hesitant to keep July 23 as the transplant date. In fact he is posing the suggestion that the transplant will not be successful due to the aggressive nature of my lymphoma. He is not ruling out the transplant and has rescheduled the procedure for August 13, pending future developments.
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We are set for a consultation at City of Hope tomorrow and the possibility of a different round of chemo this coming week. Again, the transplant date and reality will depend upon how long the new drugs are able to contol the presence of the lymphoma.
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Otherwise, we will simply go into a maintenance mode for as long as that can last and not seek the "cure option" that the transplant may provide.
Our hope and prayer is that these new drugs will present "remission" or control of the lymphona for the period of time that suggests the transplant is an acceptable risk. Without that evidence, it is probably not prudent to proceed on this track.
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Meanwhile, this has been the most difficult week of my 15 months of care. We had to be admitted to COH last Saturday for four days due to a bad reaction from the spinal tap done a week prior. Severe headaches came on and the only relief was found in continuously lying flat and taking prescribed narcotics.
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We found temporary relief on Tuesday when a COH radiologist performed a "blood patch" procedure to plug the hole created by the spinal tap, but the headaches returned Wednesday and continue today. This may be something that only time will heal. However, the "good news" of the week was found in the results of the spinal tap: negative! No sign of the lymphoma in the spinal fluid. The physician assistant who perfored the procedure injected chemo at that time as a preventive step, but this may be another reason for the prolonged headaches.

6/20/2007: 30 Days and Counting


"What strength do I have, that I should still hope?
What prospects, that I should be patient?”
-- Job 6:11 (NIV)
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June 23 Update: Another small change of planson Friday. Dr. Nakamura decided not to give the second round of chemo, but to reserve that for another week due to the fact that there are no visible signs of return of the lymphoma at this time.
Also, we found that the "primary" donor prospectfor my SCT is not available until August, so we are switching to alternate #1, a 35-year-old male.The date of the SCT remains July 23 for now.
June 20 marked the 30th day before my scheduled admission to City of Hope (COH) for the start of the allogeneic stem cell transplant (SCT) with the actual procedure set to occur on Monday, July 23, if all goes according to plan. Please consult this source provided by The Leukemia & Lymphoma Society for more information about SCT.

While spending several months contemplating this next BIG step, we know the event is now only a month away thanks to the work of the many fine physicians and the care giving team at COH. Out of a possible pool of some 475 potential matched donors, one has been identified as the ideal donor. All that I know is that he is 23 and that his blood type is the universal O+, which will become my new blood type following the procedure.

Perhaps I will get to meet the donor someday since COH has periodic reunions with patients and donors. Dee Dee and I are looking forward to that event as well.Meanwhile, we go ahead in the coming days with the next round of outpatient chemotherapy Friday with Vinorelbine and Gemcitabine which have worked, as expected, to reduce the tumors in the two visible sites. As I have said before, Dr. Nakamura is not now seeking "full" remission of the cancer before the transplant date, only stability and control, which means no visible evidence of the tumors. In fact, for now, that is the only unforeseen consequence that will delay the transplant beyond the scheduled date.

One of the most remarkable things to ponder is how/why a 23-year old is primed to be a stem cell or bone marrow donor. Perhaps he is a medical student or has had a family member need such a donation. We don’t know, but this is more than a simple medical procedure. The form of the donation is determined by the host medical facility where he shows: That is, not all facilities are equipped to prepare or process either type of procedure (stem cell and/or bone marrow).
Sometimes there is a personal or medical reason for the donor that dictates the procedure type. Either way, COH is preparing me for both possibilities.
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What's in store? We know that the first 100 days post the transplant is the most critical with regard to possible complications like graft to host disease, which Dr. Nakamura says is unlikely due to the quality of my donor match. Still, those first 100 days will see me hospitalized or housed in a location on the COH campus. This will be followed by three to six months of in-home recuperation before life, hopefully, returns as it was prior to the trial with mantle cell lymphoma that began in March 2006. We are expecting full recovery and a disease-free state at that time for a long time.

6/14/2007: Almost Perfect Match


"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." -- Psalm 139:14 (NIV)
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A call Thursday from Dr. R. Nakamura, my attending physician at City of Hope, brought the good news we had hoped soon to hear:
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The donor match is all but assured with 9 of 9 DNA variables matching! A 10th test is being conducted and, if that is also a match, we will have found the best possible donor match for my allogeneic stem cell transplant (SCT) from an unrelated donor.
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For a complete view of SCT, consult this source provided by The Leukemia & Lymphoma Society:"One of the early steps for SCT patients involves high-dose chemotherapy and radiation thatdestroys existing bone marrow and stem cells.
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That's why the SCT is required: To bringhealthy cells from a donor to the patient for the purpose of rebuilding the immune system.
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"The source for the earliest transplants was the marrow of a healthy donor who had the same tissue type (HLA type) as the patient. Usually, the source was a brother or sister. Donor programs have been established to identify an unrelated donor who has a tissue type that matches that of a patient. This approach requires screening tens of thousands of unrelated individuals of similar ethnicity to the patient."
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[I am the beneficiary of that HLA typing because an almost perfect match (9 of 10 variables confirmed to match with the 10th variable still in testing as of this date).]
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The transplant is achieved by infusing a very small fraction of the marrow cells called “stem cells.” Stem cells not only reside in the marrow but a small number also circulate in the blood. They can be harvested from the blood by treating the donor with agents that cause a release of larger numbers of stem cells into the blood and collecting them by a process called hemapheresis.
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"Since blood and marrow are both good sources of stem cells for transplantation, the term “stem cell transplantation” has replaced bone marrow transplantation as the general term for this procedure."

6/11/2007: Overcoming Worry

"Do not be anxious about your life, whatyou shall eat, or what you shall drink, nor about your body, what you shall put on." (Matthew 6:25)
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Like all of you reading this blog, I havedealt with occasional anxieties. This is the normal stuff of life. But there is probably no one thing that brings anxiety like dealing with a serious, even life-threatening health issue.

Such an issue entered the world of theFoxworths in March 2006 in the form of mantle cell lymphoma (MCL). While we have been blessed with an array of caregivers and effective treatments to help control the cancer, the condition remains without a cure.

The best possible hope for a cure, medically speaking, is an allogeneic stem cell transplant. CLICK HERE to read my May 23 message aboutallogeneic transplants.We are now a little more than five orsix weeks away from that procedure at City of Hope.

Meanwhile, we deal with the ongoing process of chemotherapy, perhaps due to have one or two more chemo sessions before the transplant date arrives. One of the currentcomplications of this therapy is that these new drugs are playing havoc with my blood counts, mainly the plateletsand red cells. I can't have furtherchemo unless the blood countsimprove.

This development has caused me toneed two units of platelets and threeunits of whole blood in the last week. My blood type is A+, but donors of platelets may be any blood type. If you would like more information about blooddonations at City of Hope, CLICK HERE.

As we continue on this journey toward a cure, we are striving to make Matthew 6:25 a daily pledge without hesitation or wavering.Certainly, the message is clear: nothingabout "worry" will change a thing. We humans put our thoughts and priorities in uncertain places at times instead of trusing God. He will provide!

6/08/2007: Discover The Best of Friends

"A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxietiesbut frees your spirit; recognizes your disabilities but emphasizes yourpossibilities." -- William Arthur Ward (1921-1994)
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Have you ever had the experience with a certain relationship where you can never get beyond friendship to experience true fellowship?

Last evening, Dee Dee and I hosted more than 30 friends and family members for a "small" celebration of my 59th birthday. Considering that we began to plan the party at the beginning of the week and Dee Dee made only phone call invitations Tuesday (two days prior), we were astonished and pleased about the turnout.

In every way, I can say that this was a special evening of fellowship. The whole event reminded me that true fellowship happens when people of similar faith and experience spend time together encouraging each other from theperspective of their common beliefs and their uncommon strength.

The evening was about being together, bearing one another’s burdens, encouraging one another to do good works and keeping each other focused on what truly counts. All of the party guests (and many others not in attendance) have done these deeds for me and Dee Dee during the last 15-month trial with mantle cell lymphoma. When trouble comes and you need someone you can trust with the core issues of your heart, there’sno one like another "true friend" who can pray with you and help you carry the cross.

6/05/2007: The Best Hope Possible

"Hope against hope, and ask till ye receive." -- James Montgomery
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A great deal of intentioned good advice comes your way when one is dealing with a life-threatening disease.

And no matter how much you wish to listento every word of advice, you ultimately cometo the decision that your hope and trust mustreside in the source of hope while you submitto the best that your physicians and care giverscan provide.

What my mantle cell lymphoma is presentingnow is a cat and mouse game that has mycare givers scrambling to keep my blood cellcounts in acceptable ranges so that I canundergo the next round of the Hyper-C Vadregimen on or around June 15. Twice in the last week, blood and/or platelet transfusionshave been necessary.More than likely, this will be the story until Ihave the allogeneic stem cell transplantplanned for around the end of July.

6/03/2007: Another Small Bump in the Road

"Difficulties are God's errands; and when we are sent upon them we should esteem it a proof of God's confidence—as a compliment from God." -- Henry Ward Beecher
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Appearing Friday for our regularly scheduled labtests and visit with Dr. Nakamura at City of Hope, we were told that my platelets count required a blood transfusion, so that was scheduled and accomplished with a 5-hour outpatient visit at COH yesterday.

I noticed an immediate difference in my energy level, so the blood must have come from a teenager or I needed the three hour nap that I took during the transfusion. Perhaps both are true.

We are due back this week at COH for more lab work and follow up visits and then a June 15 consultation to determine whether to proceed with the second round of the Hyper-C Vad therapy, again, a 3-4 day stay in the hospital for the chemotherapy.
For those of you who do not know, my middle brother, Bob, proved not to be a match for the alloegneic stem cell transplant, so attention now turns to the some 400 non-related donors in the national database. We are fortunate that there are so many possibilities, a pool that will be winnowed down to some 10 or 12 candidates. The procedure is now due to start sometime before the end of July when I can anticipate a 6-week stay in the hospital followed by six months or longer of home recuperation.

6/01/2007: A Day to Remember


For those of you who are interested, Dee Dee and Iwould invite you to look at the memories of ourdaughter's wedding to Johan Karlstrom on May 19.


Click on this LINK

5/29/2007: The Anatomy of Hope


This past Thursday through Monday evening, I was treated at City of Hope (COH) with the chemotherapy regimen hyper C-VAD (cyclophosphamide, vincristine, dexamethasone, doxorubicin) a common main line treatment for mantle cell lymphoma. Based on the VAD (vincristine, dexamethasone, doxorubicin) regimen frequently used in both myeloma and acute leukemia, this regimen incorporates cyclophosphamide at 300 mg/m² every 12 hours for six doses; vincristine 2 mg on days 4 and 11 of each treatment cycle; Adriamycin 50 mg/m² by continuous infusion over 2 days beginning day 4; and dexamethasone 40 mg daily from days 1 to 4 and days 11 to 14 of each treatment cycle.
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As before, the therapy included Rituxan. Patients receive hematopoietic growth factors until recovery. These drugs are alternated with cycles of high dose methotrexate (Folex, Rheumatrex), and high dose cytarabine (Cytosar). This is a very intensive regimen that is difficult to administer and is associated with considerable toxicity.

However, the initial results included a complete response rate of 63% in contrast to 21% in the authors’ previous experience utilizing a CHOP-like regimen which I had at the beginning of my therapy last summer.
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While in the treatment these last 5 days, I had chance to read "The Anatomy of Hope" by Dr. Jerome Groopman and would recommend the book for anyone dealing with life-threatening disease. It is all about his personal awakening from the beginning of his medical training about the role of hope in the treatment and recovery from disease.

Listen to and NPR interview with Dr. Groopman HERE.

On a personal note, Dee Dee and I remain most impressed by the people and the facilities at City of Hope and we are so grateful to now have this referral for the next phase of my treatment, include the allogeneic stem cell transplant that may start at the end of July. I should have at lease one more (maybe two) sessions with the Hyper C-Vad, the next in about three weeks. Because of the stem cell transplant, it is not necessary to obtain full remission, just control of the disease and that appears to be happening. At this writing, I cannot detect a lump in the primary site (under my left ear) that caused this latest round of treatment to be started.

5/23/2007: "Finding a Cure" in M.U.D.?


My physicians at City of Hope (COH) have now determined that I am not a candidate for the autologous transplant (my own stem cells harvested and reinserted) due to the aggressivenature of my mantle cell lymphoma (MCL).

We are now turning to the allogeneic transplantmethod from an outside donor. The good news is that an initial search of the national database of donors turned up nealry 400 potential matchesfor my basic blood type and antigens. This meansthere is an ample pool from which to find a close match. This is most fortunate and promising for what could prove to be the eventual cure.

From my internet research, I found this about Allogeneic Stem Cell Transplant (allo SCT): READ MORE HERE
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Defined as any transplant of stem cells between two individuals, whether they are related or unrelated. The sample the patient receives can come from the bone marrow through a surgical procedure or from the peripheral blood (peripheral blood stem cell transplant, PBSCT).

1) Either the bone marrow transplant or the PBSCT can be done in both auto and allogeneic transplants.

2) Typically allogeneic transplants have three phases:

A. Donor matching phase - cells from potential donors are tested for compatibility. MUD is a common abbreviation used. It means Matched UnrelatedDonor.

The donor experience? Potential donors are asked a series of questions to make sure they are healthy enough to donate and don’t pose an unacceptable risk of infection to the recipient. Risks for donors are minimal, and serious complications are rare. Problems such as sore throat or nausea may be caused by anesthesia.

B. Conditioning phase - use of high dose therapies to eradicate the disease. Myeloablative means that the treatment kills (ablates) the myeloid stem cells in the bone marrow - the cells that produce new blood cells.

Once ready to begin the transplant protocol,you are admitted to the hospital for high doses of chemotherapy and/or radiation therapy for what is called “conditioning.” This conditioning phase can take five to 10 days and is completed a day or two before the infusion of the stem cell product. The purpose of conditioning is to give high enough doses of chemotherapy and/or radiation to eliminate any cancerous cells that are present, to make room for the new cells, and to destroy your immune system. This is done to prevent rejection of the new donor cells.

C. Engraftment phase - the stem cells from a donor are given back to the patient to reconstitute the immune system. Sometimes purging techniques are used to clean the stem cells of residual tumor cells prior to engraftment, or shortly after.

Approximately two to four weeks after the transplant the patient can expect to see signs of the bone marrow “engrafting” or beginning to grow. The first sign of this is the production of white blood cells. Platelets often take a little longer to begin developing. Once "engrafted” and the patient condition is stable, discharge from the hospital is possible assuming the patient has no major side effects from the treatment.

Potential Advantages of Allo Transplants:

1. Tumor free graft
2. Undamaged stem cells
3. Avoidance of MDS/secondary AML
4. Graft versus lymphoma effect (the cure!) -- see note belowPotential Problems with Allo

Transplants:

1. Lack of suitable donors (not true in my case)
2. High treatment related mortality (see GVHD)
3. Regimen related toxicity
4. Infection
5. Time for treatment & recovery (6 months to one year)

Graft versus Host Disease (See GVHD for details)
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Graft versus cancer effect With an allogeneic stem cell transplant, donor stem cells go from the patient's blood to his or her marrow. The new cells grow and provide a supply of red cells, white cells (including immune cells), and platelets. The donated stem cells make immune cells that are not totally "matched" with the patient's cells. (Patients and donors are matched to major tissue types but not minor tissue types.) For this reason, the donor immune cells may recognize the patient's cancer cells' minor tissue types as foreign and kill the cancer cells. This is called "graft versus cancer effect."

5/17/2007: The Gift of a Cure


Donating a newborn's umbilical cord
might someday save a life
By Deborah Kotz
Posted 5/13/07 [From U.S. News & World Report]
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As we move forward to the autologous stem stell transplant for my mantle cell lymphoma (MCL), we know that this procedure is a temporary fix, that the effect may last for months or several years to sustain remission.

What we also know is that the only real cure now known is the allogeneic transplant (external donor), but since a donor match has not been found, we don't know when or if that option is available for my case.

The following report gives us hope that there may be another option: stem cells from umbilical cords, a donation for life from a newborn and his/her parents. Sounds like science fiction? Read on ...
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"When 6-year-old Hayden Zavareei developed anaggressive form of leukemia, the odds were stacked against her. She desperately needed a bone marrow transplant to replace her cancerous blood cells, but neither her sisters nor the worldwide registry of willing donors could provide a match. Her frantic parents searched for other answers-and found one, to their relief, in a vial at a public blood bank at Duke University Medical Center .

Today, 2 1/2 years after receiving an infusion of stem cells at Duke from a donated umbilical cord, Hayden is a cancer-free third grader. 'Every day is such a blessing,' says her father, Hassan, 38, a Bethesda , Md. , attorney. 'I can't help thinking how this baby saved her life.'
SEE FULL STORY in U.S. News & World Report (click here)

5/13/2007: More About Stem Cell Transplants


Many of my friends and family have asked about stem cell transplant procedures, so here is some information gathered from THE LEUKEMIA & LYMPHOMA SOCIETY website:
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"Obtaining marrow stem cells for transplantation requires that an appropriate donor receives a thorough health examination, which includes an electrocardiogram, chest x-ray, blood chemistry evaluation, and confirmation that blood cell counts are normal.

The donor is tested to insure that hepatitis viruses and human immunodeficiency virus (HIV) are not present in the blood. The presence of a positive test for cytomegalovirus (CMV) does not necessarily prevent a person frombeing a donor."

Marrow donation is a surgical procedure. The donor is given anesthesia in an operating room suite. The transplant physicians use a special hollow needle attached to a large syringe to withdraw samples of marrow from the top edge of the pelvic bones. This area can be easily felt under the skin of the sides and back just below the waist. The insertion of the needle through the skin and into the rim of the pelvic bone is repeated until several pints of marrow are removed. The donor usually remains in the hospital for about 12 hours before going home. During this time, the donor recovers from both the anesthesia and the pain at the needle insertion sites.

The donor can expect to feel some soreness in the lower back for a few days or longer. Most donors are back to their normal routine in a few days. Marrow is completely replaced within 4to 6 weeks following donation."
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A few other facts that I have gathered include:
Transplant physicians can test to determine the degree of compatibility before a decision is made to use the donor. Compatibility is assessed by laboratory tests that identify the tissue type of donor and recipient. There are two types of allogeneic donors:

• Related allogeneic donors, usually sibling donors

• Unrelated allogeneic donors, usually found within very large pools of volunteers, and matched to a tissue type that is the same as the patient’s.

Transplantation from a matched unrelated donor is sometimes referred to as “MUD” transplant.

Both related and unrelated allogeneic transplantation differs from either syngeneic or autologous transplantation in that the following may occur:

• The immune rejection of the donated stem cells by the recipient (host versus graft effect).

• The immune reaction by the donor’s cells against the tissues of the recipient (graft versus host disease)
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If I am to obtain a transplant from an unrelated donor, then ...A) The donor will likely be youngerB) Same genderC) Have my same blood type, A+

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TESTING TO IDENTIFY DONORS
"When a transplant is under consideration, the patient and his or her siblings will be tested to determine their tissue type or human leukocyte antigen (HLA) type.


"The tissue type of an individual is determined by proteins on the surface of cells.
"Like other tissue cells, the leukocytes (white cells) contain these surface proteins. By testing the leukocytes obtained from a blood sample, transplant physicians can determine the HLA type of the patient and potential donors. The immune reactions that occur when nonidentical individuals receive a transplant are governed largely by these cell surface proteins. The lymphocytes of the recipient can sense that the donor’s cells are “foreign” and attempt to kill (reject) them. The donor’s immune cells can sense that the patient’s cells are “foreign” and attack them.

"The degree of difference in tissue type between donor and recipient is the main determinant of the intensity of:

• Host versus graft effect (the patient’s cells reject the transplanted donor marrow or blood stem cells), or
• Graft versus host disease (the transplanted donor immune cells attack the patient’s body).

These two reactions do not happen if the recipient and donor are identical twins.
"However, the fact that these reactions do happen in nonidentical siblings, even if they are matched by tissue typing, shows that HLA testing does not examine all relevant tissue type factors. In light of this fact, two processes are necessary to permit a successful transplant: suppression of the recipient’s immune system before transplant and suppression of the donor’s immune cells in the recipient after transplant."Reference:"Blood and Marrow Stem Cell Transplantation"The Leukemia & Lymphoma Society

5/11/2007: We Have This Hope!


"Now, brothers, about times and dates we do not need to write to you, for you know very well that the day of the Lord will come like a thief in the night. While people are saying, 'Peace and safety,' destruction will come on them suddenly, as labor pains on a pregnant woman, and they will not escape.


"But you, brothers, are not in darkness so that this day shouldsurprise you like a thief. You are all sons of the light and sons of the day. We do not belong to the night or to the darkness. "So then, let us not be like others, who are asleep, but let us be alert and self-controlled. For those who sleep, sleep at night, and those who get drunk, get drunk at night. But since we belong to the day, let us be self-controlled, putting on faith and love as a breastplate, and the hope of salvation as a helmet.


"For God did not appoint us to suffer wrath but to receive salvation through our Lord Jesus Christ. He died for us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact you are doing."

-- 1 Thessalonians 5: 1-11

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Sometimes, I think of this trial with mantle cell lymphoma (MCL) as a type of "thief in the night" experience.


However, to take to heart the words of Paul to the Thessalonians, a thief may take your possessions, even your life, but he shouldnot take your HOPE.


Dee Dee and I are about to embark on the most serious phase of our 14-month journey with this disease. Next up: a stem cell transplant. Still to be determined: which type?


The autologous transplant involves the harvesting of my own stem cells followed by high-dose chemotherapy and radiation to wipe out my immune system. Then, my harvested stem cells are transfused to help rebuild the immune system. In the process, the cancer is all but eradicated and my body returns to a disease-free state.


Unfortunately, even with this involved procedure that may take 3-6 months, the cancer may return in months or years to come. It is not known to provide a cure.


The other option? The allogeneic transplant where the stem cell donation comes from someone else, usually a sibling. My younger brother, Dennis, 52, is being tested now about his availability as a "match." If so, his stem cells will be harvested via a simple blood draw, the cells frozen, and then I still undergo the high-dose chemo and radiation treatment, but his cells are transplanted instead of my own. The major potential complication of the allogeneic transplant: graft to host disease, which can be fatal. The payoff: this procedure offers the only real hope of a permanent cure.


And unlike the 4-6 months for the autologous transplant, the allogeneic procedure may take a year for treatment and recovery. Wow!


All of this decision making and the direction we are taking will be determined in the next few weeks because all of thepre-procedure testing and work-up routines must be completed within 30 days of the actual transplant which follows soon after my next “routine” chemotherapy on May 25-27. This means that before the end of June, I will likely be admitted to The City of Hope for one form of stem cell transplant. Thus, the adventure begins a new chapter, one with the promise of hope for a cure.

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"We have this hope that burns within our hearts,

Hope in the coming of the Lord.We have this faith that Christ alone imparts,

Faith in the promise of His Word.We believe the time is here,

When the nations far and nearShall awake, and shout and sing

Hallelujah! Christ is King!

We have this hope that burns within our hearts,

Hope in the coming of the Lord.
"We are united in Jesus Christ our Lord.

We are united in His love.

Love for the waiting people of the world,

People who need our Savior’s love.


Soon the heav’ns will open wide,

Christ will come to claim His bride,

All the universe will sing

Hallelujah! Christ is King!

We have this hope, this faith, and God’s great love,

We are united in Christ."
-- WAYNE HOOPER (1962)

5/06/2007: Who is My Neighbor?

“On one occasion an expert in the law stood up to test Jesus. Teacher, he asked, what must I do to inherit eternal life?"What is written in the Law? he replied. How do you read it?“


He answered: Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind; and, Love your neighbor as yourself."


You have answered correctly, Jesus replied. Do this and you will live.


“But he wanted to justify himself, so he asked Jesus, And who is my neighbor?"

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Every time I read this Margaret Mead quotation, I am reminded of two events, not necessarily in this order:


Back in the early 70s, I had opportunity to meet the world-renown anthropologist Mead when she was a guest speaker at a Denver IABC meeting.


Secondly, her quotation reminds me of one of the most-quoted parables of Christ: The Story of The Good Samaritan, and how Christ defined the two greatest commandments.


No matter how many "rules" and "laws" we humans create, none of our guildelines speaks more to the point than these words of Christ. As humans, we can and we have written libraries full of codes and requlations, but nothing can summarize a better code for living daily than Luke 10:25-37.Something that comes close:


THE ROTARY 4-WAY TEST … concerning those things that we think, say, do:

1. Is it the truth?

2. Is it fair to all concerned?

3. Will it build good will and better friendships?

4. Will it be beneficial to all concerned?

5/03/2007: Discoveries Far & Away

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"One doesn't discover new lands without consenting to lose sight of the shore for a very long time." -- ANDRE GIDE [CLICK on photo for larger view]
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If there was one word to describe the journey of this last year with mantle cell lymphoma (MCL) it is: DISCOVERY!Each step of our journey has come with the revelation of information and details which were known to others, but not to us. Now, we are about to move into a new phase of treatment at The City of Hope Comprehensive Cance Center in Duarte, CA, which is a world-renown cancer treatment center located about 25 miles from our home in Alta Loma and about 40 miles east of Los Angeles.

Our new discovery is about stem cell transplants. For a comprehensive view of that topic you can check out this website.While we (Dee Dee and I) are all but certain that the next phase of my care will include an autologous stem cell transplant (one where I am my own donor), our physicians are still evaluating that choice, meaning there may be other discoveries before the next phase of my care.

Mainly, the physicians want a brief observation period (3-4 weeks) to see if the lymphoma, which appears now to be in remission, continues in that dormant state for this period. That would be a good sign and an indication that the autologous transplant could be beneficial for long-term remission. Long-term, for me, is defined as 2-3 years, while we await more discoveries that may offer a cure of the disease in the future. For now, the autologous stem cell transplant procedure involves a 4-6 week stay in the hospital and a total recovery time of 8-10 weeks.

On the other hand, if the lymphoma returns quickly while we are in this brief "holding" period, the doctors may recommend another course; hence, other discovery.One only has to deal with the reality of a life-threatening condition to appreciate the daily opportunity for discovery. And like Glide says, the journey may be long, even if "long" has never appeared so "short."

4/28/2007: Make a Difference to One


The story is told of a man walking along a beach the morning after a storm had passed through. The sand was littered with starfish that had been washed ashore. Down the beach he noticed a young boy picking up starfish and throwing them into the water. As he approached, he asked what he was doing. The boy didn’t hesitate as he explained that the sun was coming up and it would kill the starfish if they didn’t get back into the ocean. The man laughed and said, “There are thousands of starfish on miles of beach, you can’t possibly make a difference.” As the boy picked up another starfish and threw it back into the ocean he said, “Made a difference to that one.” -- Adapted from “The Star Thrower” by Loren Eiseley

Non-profit and cause-driven organizations operate under a type of starfish principle. They know they can’t fix all the problems in the world, but most do their best, with what they have, to help as many people as they can. Are starfish left on the beach?

Certainly.

Regrettably.

Charitable organizations have three main objectives, raising money for their causes, telling their stories, and recognizing their donors and sponsors. Management and operations for nonprofits today is made more complex because of the sheer competition for the philanthropic dollar. More than ever, focus and adherence to the core mission is demanded. Following that principle: staying connected to and cultivation of the "base" or "core" donors is paramount. While some organizational donors (like foundations and corporations) are shared by neighboring nonprofits, every charity has a population that is unique to its cause. For hospitals, that population has become known as the "grateful patients." Today, it is possible that patients need and utilize more than one hospital in the course of their care. However, for a variety of reasons there is probably one hospital that is top of mind: possibly the hospital closest to home.

This explains why community is so important. Nothing that a nonprofit accomplishes can be possible without a connection to community.

"America is great because she is good. If America ceases to be good, America will cease to be great." Alexis de Tocqueville

4/21/2007: Moving Toward The Next Phase of Care

WASHINGTON (Reuters) - One gene directs both embryonic and adult stem cells to perform the self-renewal function that is crucial in their potential broad use in medical treatments, researchers said on Thursday.While the biology of these types of stem cells is very different, a study published in the journal Cell showed that they share at least this one key feature -- a gene called Zfx that controls their ability to self-renew.READ MORE

Biology and chemistry were two of my toughest courses in college. It’s a small wonder that I concentrated on the language arts, earning a communications degree before my adult pursuit in nonprofit organizational and hospital philanthropy. See more about my daytime activity at the website of THE FOOTHILL FOUNDATION.

But now, my interest in science, biology, medicine, even chemistry is top of mind as I battle with mantle cell lymphoma. Perhaps equaled only by the volume of drugs I am given to fight this disease is my current appetite for information, notably about stem cell research.

This May or June may find me at The City of Hope (Duarte, CA) to undergo a 3-6 week stay for an AUTOLOGOUS stem cell transplant. Here, they harvest my own stem cells, administer high dose chemo therapy to eliminate every trace of the lymphoma possible (essentially wiping out my immune system), and then they transplant my own stem cells to rebuild my immunity to infection. The procedure is becoming very common as a disease fighter for more than cancer. It is an example of a modern medical miracle.

It is amazing how medical miracles keep occurring in my life, starting with birth when I was nearly three months premature and spent months in the hospital to gain weight and strength that my small (2 lb. 11 oz.) frame needed to survive.

Then, I was nearly electrocuted during a camping accident at age 2, saved only by the quick action of my father as he literally kicked me away from a live, hot electrical wire which I had explored too thoroughly. My left index finger is the only sign of that event today.

Most of my other medical rebounds are common in the population, including eye muscle surgery (twice) stemming from my premature birth; a tonsillectomy around age 10, and then plastic surgery in the early 1970s to help correct that deformed left index finger from the 1950 electrical mishap.

Also, just after both of our daughters were born in the 70s (medical miracles of their own), I was diagnosed with “sarcoidosis” (also called sarcoid or Besnier-Boeck disease), an immune system disorder characterized by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected; however, granulomas most often appear in the lungs (D86.0) or the lymph nodes (D86.1). Symptoms can occasionally appear suddenly but usually appear gradually. When viewing X-rays of the lungs, sarcoidosis can have the appearance of tuberculosis or lymphoma. But there have been no known ill-effects of this condition throughout my adult life and I have not required any treatment for the rare condition.

So, as you can see, my career around health care has been personal. I would not be here today without that care. I once had a hospital foundation board chairman give his reason to support and lead hospital philanthropy efforts: “I want to know my care givers before I need their care.” Sometimes that is possible; always wise.

4/17/2007: Much to Talk About

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Cancer Deaths Reported to Decline
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ATLANTA - For the first time in more than 70 years, annual cancer deaths in the United States have fallen, a turning point in the war on cancer likely achieved by declines in smoking and better tumor detection and treatment.

The number of cancer deaths dropped to 556,902 in 2003, down from 557,271 the year before, according to a recently completed review of U.S. death certificates by the National Center for Health Statistics.

“Even though it’s a small amount, it’s an important milestone,” said Dr. Michael Thun, who directs epidemiological research for the American Cancer Society. MORE

Once you or a loved one is diagnosed with cancer, stories like this one aren't just news any longer, these are personal, like a letter from home.And while cancer is a long way from a universal cure for every type, any news of progress is good news to survivors and their families.For us, we are moving into another decision phase (a status that has been frequent during the last 12 months). For now, we and our doctors have the decision to seek one of two different, but similar treatment paths, both involving stem cell transplants.

First option: AUTOLOGOUS transplant which involves the harvesting of my own stem cells followed by high dose chemo therapy and then the transfusion of my own stem cells. Key advantage: May only take two or three months; high degree of success without the risk of rejection. Key disadvantage: Treatment is not a permanent cure. The lymphoma may return, requiring subsequent chemo treatment and transplants. As I get older, the tolerance level for both could become an issue. READ MORE about this procedure here.

Second option: ALLOGENIC transplant involves an outside donor, usually a sibling. Key advantage: Offers the best chance of long-term remission, but only a 40 per cent chance of that happening. Key disadvantage: This will involve up to one year of treatment in virtual isolation. There is at least a 30 percent chance of graft to host disease, some consequences of which can be fatal.

MORE about this procedure here.What we learned this week from Dr. Ryotaro Nakamura, the hematology and bone marrow transplant specialist we visited at City of Hope (COH), is that the autologous transplant option is still open to us and that should we need another transplant later, we can have the allogenic transplant done at that time.You may offer your impressions and thoughts on this topic by sending an email message HERE

When I shared these options with a friend today, she inquired as to how we make so many major choices. My response: On our knees! While all of this is monumental and consequential for our lives today and beyond, there is no other option than to yield to an all-knowing power.

This rationale was confirmed as we watched the Sunday night, April 15 edition of EXTREME MAKE0VER: HOME EDITION where the words of one of the recipients (who suffered with but succumbed to cancer) depict a winning philosophy: "There is much to talk about, but NOTHING to worry about."In other words: "If you have something to worry about, PRAY. If you pray, DON'T WORRY!"

Indeed, some would refer to this creed as a paraphrase of the GOLDEN RULE, the basis of most of the world's religious faiths, as you can see from the graphic below. Click on the graphic for a screen-size version of the image.


As a member of Rotary International for 21 years, I think the ROTARY 4-WAY TEST best summarizes all of our personal relationships, including how we treat others:
  • Is it the TRUTH?
  • Is it FAIR to all concerned?
  • Will it build GOODWILL and BETTER FRIENDSHIPS?
  • Will it be BENEFICIAL to all concerned?

Indeed, some would refer to this creed as a paraphrase of the GOLDEN RULE, the basis of most of the world's religious faiths, as you can see from the graphic below. Click on the graphic for a screen-size version of the image.

4/11/2007: Good Words are Worth Much!


One of the greatest blessings coming out of our fight with MCL is the way that news of my disease and the following of MyJournal and CarePage has prompted so much outpouring of support and encouragement.During the week in which a national radio personality and the objects of his remarks found that "bad" or negative words are not worth much at all, such may even create dispair and discord, my experience of the last 12-plus months is in the exactly opposite direction.

The words, thoughts, prayers given to me show ephatically that there is much "good" in people and most are likely to choose the words that bring hope, life, and encouragement. You may visit my CarePage and read some of the letters. More than these, I have had countless private e-mails in the same vein. I can't express how important these thoughts and messages have been to Dee Dee and our family for the purpose of facing each phase of this cancer.While we wonder why some never or seldom write, we have more than ample evidence that good words are worth much!

Now, an update on my care: Monday, April 17, we have a scheduled consultation at the world-renowned CITY OF HOPE Medical Center where we will see a stem cell transplant specialist and have some preliminary work done for that procedure. Also, on Friday, April 20, we return to Dr. Martel for more outpatient chemo and then another 2-day stay at Huntington Hospital for the the second inpatient phase of the ICE treatment previously described at this site.

The GREAT news is that there has been remarkable shrinkage and softening of the visible tumor sites that had previously not responded to any treatment for more than five months. Although we still have to do more research, this development leads us to the conclusion: the stem cell transplant offers the best possible chance for long-term remission, for a near-normal life span. Again, there is hope, if not a cure.

4/09/2007: Reflections of The Last Three Days


This last weekend was Easter, the most holy day for Christianity.

For the last three days (since Friday), I received the latest round of chemotherapy at Huntington Hospital, Pasadena, for my mantle cell lymphoma which occurred a year ago and then reoccurred last Thanksgiving week after ten weeks of remission. My oncologists have been searching for the right combination of drugs to achieve a second remission. Thankfully, the search may be over.

Under the acronym, ICE, the new drugs are ifosamide, carboplatinum, and vp-16 (etopicide). But there were a number of other drugs administered to help alleviate possible side effects. Indeed, I am a beneficiary of so much advanced research in chemotherapy during the last decade. We are thankful for that. All things considered, my side-effect problems with chemo have been minimal.

Yes, the new drugs have caused shrinkage and softening of the three primary tumor sites in just the first few hours. Still, we probably will return to Huntington in 2-3 weeks for a second round of the same, then, possibly followed by a third round until remission is confirmed by my oncologist, Dr. Cynthia Martel of The City of Hope Medical Group, Pasadena.

While Dee Dee and I were elated to get back into a chemotherapy that shows promise of working, we were disappointed to miss the various Easter weekend activities, although Dee Dee did make the 8am service at our church, Hillside Community in Alta Loma. But we both missed the Easter gathering with friends and family in that we planned to attend in Dana Point.

But what we did not miss was the significance of Easter in relation to my medical ordeal. Jesus Christ lived and died, and rose from the dead so that we may have life eternal. All we have to do is claim his promise: "For God so loved the world that he gave his only begotten son, that whosoever believes in him should not perish but have everlasting life. For God sent the Son into the world, not to condemn the world, but that the world might be saved through him. He who believes in him is not condemned; he who does not believe is condemned already because he has not believed in the name of the only Son of God."--John 3:16-18

4/04/07: Pressing On Another Year


"Not knowing when the dawn will come,I open every door." -- Emily Dickinson

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This last weekend was Easter, the most holy day for Christianity.

For the last three days (since Friday), I received the latest round of chemotherapy at Huntington Hospital, Pasadena, for my mantle cell lymphoma which occurred a year ago and then reoccurred last Thanksgiving week after ten weeks of remission. My oncologists have been searching for the right combination of drugs to achieve a second remission. Thankfully, the search may be over.

Under the acronym, ICE, the new drugs are ifosamide, carboplatinum, and vp-16 (etopicide). But there were a number of other drugs administered to help alleviate possible side effects. Indeed, I am a beneficiary of so much advanced research in chemotherapy during the last decade. We are thankful for that. All things considered, my side-effect problems with chemo have been minimal.

Yes, the new drugs have caused shrinkage and softening of the three primary tumor sites in just the first few hours. Still, we probably will return to Huntington in 2-3 weeks for a second round of the same, then, possibly followed by a third round until remission is confirmed by my oncologist, Dr. Cynthia Martel of The City of Hope Medical Group, Pasadena.

While Dee Dee and I were elated to get back into a chemotherapy that shows promise of working, we were disappointed to miss the various Easter weekend activities, although Dee Dee did make the 8am service at our church, Hillside Community in Alta Loma. But we both missed the Easter gathering with friends and family in that we planned to attend in Dana Point.

But what we did not miss was the significance of Easter in relation to my medical ordeal. Jesus Christ lived and died, and rose from the dead so that we may have life eternal. All we have to do is claim his promise: "For God so loved the world that he gave his only begotten son, that whosoever believes in him should not perish but have everlasting life. For God sent the Son into the world, not to condemn the world, but that the world might bsaved through him. He who believes in him is not condemned; he who does not bee lieve is condemned already because he has not believed in the name of the only Son of God."--John 3:16-18

Tuesday, July 24, 2007

3/30/2007: Hope for a Vaccine


WASHINGTON, DC Thursday, March 29 -- Federal health advisers have endorsed an experimental vaccine to treat advanced prostate cancer as safe and effective. The Food and Drug Administration advisers voted unanimously Thursday to say Provenge is safe. They then voted 13-4 to say there is substantial evidence that it works in treating advanced prostate cancer that no longer responds to hormone treatment.

The FDA isn't required to follow the advice of its advisory committees, but it usually does. A final FDA decision on whether to approve Provenge, also called sipuleucel-T, is expected May 15. The vaccine is made by Seattle-based Dendreon Corp. MORE

This was a major week for cancer headline news with reports about President Bush's press secretary Tony Snow having a recurrence of his colon cancer and Elizabeth Edwards reporting on the relapse of her cancer. High profile celebrities are doing a good job of creating attention for a dreadful condition that now affects and will affect one in three families in this generation.

The promise of a vaccine for ALL cancers is really the only hope for a cure for most cancers. Of course, the major attention in all cancer research is on lung, colon, breast, and other sites that dominate the occurence of this disease. Lymphoma, particularly mantle cell, is far down the list and the prospects of a vaccine for this malady depend upon a long and unlikely chain of breaks and developments in the vast world of cancer research.

Still, we are not without hope or optimism.

3/11/2007: Make a Difference Today!



Have you noticed how often the word "TRUST" is used in association withthe world of "CHARITY"?

Anyone who makes a gift for charitable reasons has to have cause totrust the recipient, the principals who operate and direct the charity thatthese gifts support.

Without such trust, such gifts may well be foolish investments of resources.But having trust means that the donors have prior evidence and proof thattheir funds (which are really no longer theirs) are helping to accompisha work only the charity can possibly do, to which the donor is a benefactor.

Those of us who work in the realm of charity and philanthropy learn thislesson every day. We know that our mission rises and falls on the abilityto find, cultivate, and enlist those we trust who, in turn, trust us. Whilewe have a myriad of goals and tasks, this is TASK #1.It should be remembered that when there is a TRUSTEE (the cause), thereis also a TRUSTOR (a donor).
This mutual relationship calls for the samelevel of trust from both parties. If one rates higher on the trust scalethan the other, how secure is the trust relationship? That's why both areguardians of the relationship, co-equals charged to make the relationshiplasting and beneficial.As a member of Rotary International for 21 years, I think the ROTARY4-WAY TEST best summarizes this relationship:

  • Is it the TRUTH?

  • Is it FAIR to all concerned?

  • Will it build GOODWILL and BETTER FRIENDSHIPS?

  • Will it be BENEFICIAL to all concerned?"
For more information, download Applying the Four-Way Test from the Quick Downloads box in the menu to the left. -->If all of our relationships, charitable and otherwise, were so guided,what could possibly go wrong?

3/03/2007: New Treatments Fight GVHD In Bone Marrow Cases

Now that our primary oncology care is with Cynthia Matel, MD PhD, at the City of Hope Medical Group in Pasadena, we are facing another round of decision making. In fact, our enitre last year (the onset of MCL occurred in March 2006) of living with this disease and treatment has been an endless round of decision making.

One of the key decisions looming: what (if anything) to do about having a stem cell transplant done at the time of next remission, which hopefully will come later this year.Granted, if I were ten years younger, that decision would be a no-brainer: We would have the transplant done without hesitation. But the stem cell transplant record for men in their late 50s and beyond is not encouraging due to the serious, life-threatening potential of graft versus host disease (GVHD).

At least, not until I read the following blog maintained by the University of Michigan Health System. Coincidentally, I was referred to this source, if not this specific research, by the HELP DESK at my health plan, Blue Shield of California.

It's hard to imagine your body being attacked by foreign blood cells while your own immune system is unable to defend you. Unfortunately, for many bone marrow transplant patients, graft versus host disease (GVHD) is a common and often deadly complication of this life-saving procedure.

However, research by the University of Michigan Comprehensive Cancer Center has revealed a new way to fight back against these attacks.

"When graft versus host disease occurs, it can be fatal in about 50 percent of the cases," says James Ferrara, M.D., director of the Blood & Marrow Transplantation Program at the U-M Comprehensive Cancer Center. "Through our research, we've found some of the reasons behind graft versus host involve an inflammatory reaction, and treating the inflammatory reaction may curb graft versus host."

More than 5,000 Americans receive allogeneic bone marrow transplants annually, meaning the bone marrow donor is someone other than the patient or his identical twin.

GVHD occurs when cells from the donated bone marrow attack the body of the transplant patient, whose own immune system has been repressed in order to allow the new bone marrow to grow. Most often, it is the skin, eyes, stomach, and intestines that are affected.

Ferrara and his colleagues have found that as this immune system reaction progresses, it mimics a very large inflammation in the body, and that specific proteins are directly responsible for this inflammation.

"There are certain antidotes to these proteins. Knowing that, we have developed new trials both to treat GVHD, as well as to prevent it," Ferarra explains.

Graft versus host disease is normally treated using high dose steroids, but only about a third of the patients respond to this treatment. However, using anti-inflammatory proteins in combination with steroids has yielded a response rate of over two-thirds, twice the traditional rate of complete response.

The researchers are particularly excited about the use of etanercept, a drug that is commonly used to reduce the inflammation of rheumatoid arthritis, to treat GVHD. "The treatment is very simple. It's a shot, similar to an insulin injection, that is given twice a week," says Ferarra.

The new treatments reduce the risk of death, hospitalization and serious side effects associated with bone marrow transplants and GVHD. This means that patients who get transplants will have a much higher chance of being cured without the debilitating effects of GVHD, and also that bone marrow transplant is likely to become more available to patients who need it.
GVHD is much more intense in older patients, which has been a problem since most of the people who need bone marrow transplants are over the age of 50. "With this new approach we are now likely to be able to offer bone marrow transplants to the very people who need them, the more elderly populations who are at risk and who could benefit from transplants as a therapy," Dr. Ferarra says.

There are currently two to three times as many patients who need bone marrow transplants than those who actually receive them, mostly due to the intense risks of GVHD. In addition to older populations, now patients who have non-malignant diseases such as scleroderma, an auto immune disease, or other toxic but not necessarily life threatening diseases can have the option of a transplant.

A bone marrow transplant occurs when defective or cancerous bone marrow is replaced with healthy marrow, either from the patient or a donor. Transplants are used most commonly for cancers of the blood, such as lymphomas and leukemia, or to correct certain genetic diseases, defects in the immune system, or other problems in the blood cells.

It is still important that the donor and the transplant recipient have as close a match as possible, and Ferarra encourages everyone to do his or her part by becoming a donor. Today, new advances have made bone marrow donation similar to donating a pint of blood.
"It is very easy for anonymous donors to provide their stem cells. We now have millions of patients in registries, and we are looking for even more so that we can have perfect matches for everyone who might need a bone marrow transplant," he says.

For more information, visit these Web sites:
U-M Comprehensive Cancer Center: BMT patient guide
http://www.cancer.med.umich.edu/cancertreat/treatment/bmt/complications.shtml

U-M Blood & Marrow Transplantation Program http://www.cancer.med.umich.edu/cancertreat/treatment/bmt/about_the_program.shtml

National Marrow Donor Programhttp://www.marrow.org

University of Michigan Health System2901 Hubbard St., Ste. 2400Ann Arbor, MI 48109-2435United Stateshttp://www.med.umich.edu/

2/28/2007: Prayer Warriors

A friend e-mailed this to me, a message that had been circulating through the internet for a month. I thought it was worth re-publishing on my blog.

This prayer time, led by the coach, took place in the Indianapolis Colts locker room after they won the Super Bowl. What a blessing to have a godly group in the winner's circle for a change! It's a shame that the major news media doesn't consider this newsworthy! But they will cover the other players who are busted for drugs, shootings, etc.

PRAY FOR AMERICA!!!
TWENTY THINGS TO REMEMBER

1. Faith is the ability to not panic.

2. If you worry, you didn't pray. If you prayed, don't worry.

3. As a child of God, prayer is kinda like calling home every day.

4. Blessed are the flexible, for they shall not be bent out of shape.

5. When we get tangled up in our problems, be still. God wants us to be still so He can untangle the knot.

6. Do the math. Count your blessings.

7. God wants spiritual fruit, not religious nuts.

8. Dear God: I have a problem. It's me.

9. Silence is often misinterpreted, but never misquoted.

10. Laugh every day -- it's like inner jogging.

11. The most important things in your home are the people.

12. Growing old is inevitable, growing up is optional.

13. There is no key to happiness. The door is always open. Come on in.

14. A grudge is a heavy thing to carry.

15. He who dies with the most toys is still dead.

16. We do not remember days, but moments. Life moves too fast, so enjoy your precious moments.

17. Nothing is real to you until you experience it; otherwise it's just hearsay.

18. Its all right to sit on your pity pot every now and again. Just be sure to flush when you are done.

19. Surviving and living your life successfully requires courage. The goals and dreams you're seeking require courage and risk-taking. Learn from the turtle, it only makes progress when it sticks out it's neck.

20. Be more concerned with your character than your reputation. Your character is what you really are, while your reputation is merely what others think you are.

No matter the storm, when you are with God, there's always a rainbow waiting. Leave gentle fingerprints on the soul of another for the angels to read. I don't want to get to the end of my life and find that I lived just the length of it. I want to have lived the width of it as well.

2/20/2007: What a View!
















What a great time we had on our visit to Long Beach yesterday and to the Rancho Palos Verdes peninsula!

We decided to take my visiting family members to see the location where our youngest daughter, Andrea, is to be married on May 19: The Wayfarer's Chapel near Portuguese Bend. If you have not been there, you have missed what is probably the single greatest ocean vista along the entire Southern California coast!

Despite the cloudy, gloomy weather that greeted the early morning, the sun came out and we had a fabulous day for sightseeing. After touring the Queen Mary in Long Beach and lunch at Ports O'Call in San Pedro, we headed to the chapel which is a most inspiring structure by itself, made almost entirely of glass, sponsored by the Swedenborgian Church as a national memorial to Emanuel Swedenborg.

Lloyd Wright, son of the famed architect Frank Lloyd Wright, was asked to design a chapel that would give expression to the unique philosophy and theology of The Swedenborgian Church. Lloyd Wright found himself in complete accord with the positive outlook of the Church and its emphasis on harmony between God's natural world and the inner world of mind and spirit. His vision of Wayfarers Chapel was a sacred site within a redwood forest.

2/17/2007: Managed Care Fun on the Run




One of the realities for many of us with health insurance these days (particularly if you work in health care, as I do) is that your care is dictated by policies and operatives who are so-called managed care coordinators or managers. Their job can't be easy. They may have gained all the popularity of used care salesmen and IRS agents.

If you haven't had much experience in this world, your time may be coming.So just for fun, I found this site that puts this business in a humorous, if not accurate light. Click here on this "doctor" link. Enjoy.


Here is one excerpt ...What do managed care workers do for fun?

  • Custodial staff play basketball
  • Clerical staff play football
  • Case reviewers play tennis
  • Supervisors play softball
  • Medical directors play golf

Conclusion: The higher you rise in managed care, the smaller your balls.

2/13/2007: Myriad of Decisions

One of the most difficult things about dealing with cancer treatment is sorting through the many options for care and care givers. You learn to trust experience, but then you realize that experience with your particular disease is thin on experience.

We are at such a moment: a crossroad. We are considering the recommendation of a clinical trial with a therapy that few have been given, but one that holds the promise of a new remission of the cancer. No guarantee. Risks, yes.

The possibility of remission.At no other time in history have so many options existed for the cancer patient and, hence, the possibility of confusion, indecision, and the possibility of making a wrong choice (or the right one). Chemotherapy, radiotherapy, herbal medicines, surgery, or doing nothing at all. The mind is awhirl with considerations.

Everything requires consent and disclosure. Not one form, but multiple forms and lengthy disclosures that are full of medical terminology and detail. Because of the liability and legality that surrounds today's practice of medicine, disclosure detail is extensive.

"This probably won't happen, but it could!"Untimately, when life is in the balance, regardless of what you read or hear, you rely more on the advice of those you trust and you hope and pray for the best possible outcome. When no sure cure is available and none is on the horizon, you look for anything that prolongs the course while you wait for the development of a cure that may or may not arrive in time.

2/04/2007: Cancer Information is Plentiful


Type a GOOGLE search for "cancer" and you will find some 208 million "hits." Type a search for "mantle cell lymphoma'?

The result: 554,000 hits.
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Obviously, this news is both a blessing and a curse. A cancer patient has almost unlimited access to information on the internet ... more information than one can possibly digest. At the same time, the ease of accessing information has never been so possible.

I am sharing some of the links that I find most helpful shown on the left. With many of these sites, it is possible to set up e-mail alerts and with Google, the web user may set up any number of alerts for a variety of topics. Such research tools really make it easier to find and receive timely information.

1/27/2007: Cancer Survivor Numbers Are Astounding!


What if you knew that virtually every resident of the metropolitan area of Los Angeles was a cancer survivor?Not possible? Think again.

According to this chart of 2003 cancer survivor data for the U.S., the number of survivors four years ago had surpassed 10.2 million, a phenomenal 25 percent increase from a decade ago.If you apply the growth rate of survivorship from the last decade to the current, then more than 12 million cancer survivors live in the U.S. in the year 2007.And, yes, that is roughly the same population for the Greater Los Angeles metropolitan area.

Then, when you look at this data further, you find that not only are many more survivors around, but the longevity for survivors is increasing as well. This chart shows that more than 8 percent (over 1 million) of survivors are living more than 25 years since their diagnosis. Looking at this data again, the statistics reveal that 30 percent of all cancer survivors have exceeded 10 years since their diagnosis.

The most unfortunate aspect of this data is the wide disparity of survival rates for men from cancer beyond year 15, where it is shown that longevity for women is about twice that of men beyond the 15th year. But then, the average longevity rate for women in the general, healthy population also exceeds that for men.

1/21/2007: MEF, MCL


2 Chronicles 7:14 -- "If my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land."
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Twenty-five years of working the health care industry brings considerable exposure to clinicians who use abbreviations for communication, although, officially, the practice is actually frowned upon within the hospital industry today.But little did I realize this life-stage would come when my health status would be labeled with three simple letters: MCL.

In April 2006, those initials became part of my identity and we began our journey to seek treatment, if not a cure. These past ten months have been full of emotions and experience along with an awareness that as long as we have breath and life, and a will, we can seek healing.

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"Praise the LORD, O my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases"-- Psalm 130:2-3


Lymphoma is a serious affection which affects different parts of the body and usually occurs in many forms. One of the most severe form of lymphoma is known as mantle cell lymphoma (MCL). In addition to this, mantle cell lymphoma is a rare form of Non-Hodgkin lymphoma which tends to develop and spread very fast to other organs of the body.


Due to the fact that mantle cell lymphoma spreads very fast to different parts of the body, treatments of this type of affection should be good enough to reach to all the infected cells. Unlike chemotherapy which is the main form of treatment, bringing successfully results, other treatments, such as surgery or radiation therapy are not enough useful to reduce the cancer.


To begin with, chemotherapy has proved to be the most efficient treatment to treat mantle cell lymphoma. Chemotherapy can be administrated in the form of injections, drips in the veins or even tablets. Much more, a treatment for this affection may include different types of drugs and the doses depend on the patient condition.


In most cases, the treatments prescribed include the CHOP regimen, a combination of four drugs which is taken in a single day and repeated every three weeks for six ot eight cycles. Even though, chemotherapy brings important results, the disease may occur again. In order to prevent a recidivism of mantle cell lymphoma, specialists use to prescribe chemotherapy combinations, such as treatments for leukemias.


On the other hand, these combinations of chemotherapy might be very toxic for some patients who suffer from Mantle cell lymphoma. Secondly, another efficient treatment includes monoclonal antibodies such as Rituximab, usually used to treat Non-Hodgkin lymphoma and mantle cell lymphoma as well.


Another way to treat mantle cell lymphoma which tends to be a hard procedure and not widely practiced is the bone marrow or stem-cell transplant. Radiation is another procedure which is usually used when the disease is not very severe. Much more as it is known that this disease affects many areas of the body, radiation is not the best choice.


In conclusion, even though mantle cell lymphoma tends to be an incurable disease, treatments for this affection have the role in prolonging and improving the life of the patients. Nowadays many new treatments are being tested and much more clinical trials may help the patient considerably.

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