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Showing posts from September 24, 2017

Timeline ▶ Canswerist

http://canswersite.com  ▶  http://canswerist.com
When you change the way you look at things, the things you look at change The #CANSWERIST moniker in #SocialCurrentSee storytelling and archiving comments, links, and content related to cancer survivors and caregivers for same is constant and continuous throughout the family of #ALTACITIESsites, blogs, and web locations.
2006 - 2017Eleven years of cancer survival (mantle cell lymphoma, blastoid type)Ten years since allogeneic stem cell transplantEight years since single tumor relapse DX treated with TomotherapyContinuous remission approaching eight-year markNow a #CANSWERIST messenger through the sites, blogs, and locations of #ALTACITIES
http://canswersite.com  ▶  http://canswerist.com


Today's Tweets are Tomorrow's Posts

'Decision Time' ▶ Canswerist

'DecisionTime' ▶ Canswerist
Facebook and most every other social media site has a variety of member-only and public message board for cancer survivors and caregivers, the population that I like to refer to as #CANSWERISTS.

To one of those sites (a closed group), I offered a comment and tried to give some encouragement to a new cancer patient, a transplant candidate, facing some critical decisions.


When you change the way you look at things, the things you look at change

Today's Tweets are Tomorrow's Posts

'Portless' ▶ Canswerist

#CANSWERIST on Facebook The above comment made on Facebook is a reminder that #CANSWERISTS everywhere share the common experience of frequent needle sticks for blood tests, treatments, and the like.  That has been my story since the 2006 diagnosis (DX) with mantle cell lymphoma.

Not joking at all when I tell phlebotomists at most of my blood draws that these veins tend to run and hide when they see the City of Hope sign at the entrance to the campus.

My comment above remains relevant to the story: "I totally support you on the desire to keep the port as long as possible, but sometimes matters are beyond our control. In 2007, when I was 99 days post-transplant and still had a Hickman, I came down with extreme chills (not a fever) that was due to infection at the site of the port. The proximity of that entry near the heart is not to be taken lightly, so the port was removed and I have not had another since. However, the frequent blood tests and IVIGs remain, so the port would be a h…

BMT ▶ Medicare?

Other than the stem cell transplant itself, for me, the most beneficial aspect of my transplant story was the financial outcome.  Yes, we ended up with out-of-pocket costs somewhere in the range of $50,000, most that due to our status on Cobra insurance right after I took early retirement while waiting for Medicare eligibility at age 65.  However, that expense was but a small fraction of the overall cost of a stem cell transplant for lymphoma.  See my Facebook stream in #CANSWERISTS.

Remission ▶ Still Confirmed

About three weeks ago (Sept. 5 to be exact), I was back at City of Hope (COH) for tests and a follow-up visit with my oncologist. It was a routine visit for sure and the clinical reports for my case all came out negative with full REMISSION at the 7-year mark CONFIRMED.

We have been granted a six-month window for the next oncologist visit where it had been a quarterly visit. At this time, the only maintenance therapy I am receiving is bimonthly immunoglobulin infusions (IVIGs). That is remarkable, for sure, given the 11-year path we have followed. More on my new site: http://canswersite.com

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Canswers ▶ Immunotherapy

At this time, the only maintenance therapy I am receiving is bimonthly immunoglobulin infusions (IVIGs). That is remarkable, for sure, given the 11-year path we have followed. More on my new site: http://canswersite.com ​ CAR T-Cell Superior to Standard Therapy in Patients With NHL + Flipit ▶ https://goo.gl/smajo8​

The subscript link above for this post was attached because of its current relevance to my cancer diagnosis (DX) in 2006. The CAR T-Cell breakthrough was not a treatment modality available at my DX nor at COH circa 2006-07, nor during the some 11 years since. However, this therapy now holds promise as the most hopeful cure for NHL and all of the associated forms of that cancer DX, including mantle cell lymphoma (MCL).  ​ This was confirmed on our Sept. 5 City of Hope visit when the PA for our oncologist explained that immunotherapy is rising as the priority treatment, as opposed to standard treatment and bone marrow (stem cell) transplants which was the course that I follo…