Tom Paul

First post: 10/11/2016 Latest post: 6/28/2017
Thanks for visiting.

In the spring of 2015 I felt that, physically, I was beginning to "slow down."  I knew I needed to exercise more, eat better, etc., etc.  I observed people 20 years older than I continuing an active lifestyle and I began to wonder if I'd ever get "back in shape."  

By May (2015) my Fitbit was telling me that after walking two blocks, my heart rate was 147.   I'd hope for a red light so that I could stop, rest,  and not cross to the next block.  Something was clearly not right.  I went to my doctor and told him I thought there was something wrong with my heart.  Did a few tests.  My hemoglobin was 6.8 grams per deciliter ("low" is less than 13.5).  Colonoscopy, endoscopy, pill significant bleeding.

I was diagnosed with high-risk IgG kappa multiple myeloma with 17p deletion (bone marrow cancer) in July of 2015.  After doing a little homework, I applied for and was assigned to a clinical trial studying the efficacy of elotuzumab (defined below)  in newly diagnosed, previously untreated patients.  My chemotherapy consisted of elotuzumab, along with the standard RVD (Revlimid, Velcade and Dexamethasone).      After six months of heavy chemo, I took a six-week break, and began maintenance doses of the same drugs, which would theoretically continue for the rest of my life (myeloma has no cure).  As of July, 2016 I had achieved a "complete response;"  in remission from cancer.

In September, it became clear that the maintenance dosages were not quite doing the trick, and my immunoglobulin IgG and kappa free light chains were ramping up again.  Since the dosages in the clinical trial are prescribed, I can't go back to the dosages that were working, unless insurance covers it, which it didn't.  In early October, I began a regimen of  carfilzomib, Revlimid and dexamethazone.   And lots of it.  That was completely ineffective.  A stem cell transplant scheduled for early November was postponed, and I was admitted to inpatient chemotherapy on 10/28 for a 96 hour infusion of  Cisplatin, Doxorubicin,Cyclophosphamide, and Etoposide, with (evil) Velcade, Revlimed and Dexamethazone.  The side effects (finally lost my hair) were significant, and a month later, I did it again (but at home -- kind of a challenge, but better than a hospital stay).  

I spent the month of January at Mayo Clinic getting a stem cell transplant.  My oncologists recommended another, because of the aggressive nature of "my myeloma."  So as I'm sick and tired, and 20 pounds lighter, I get to think about doing it again.

 In a nutshell, the transplant was effective; no cancer cells were detected in my bone marrow 2 months post=transplant.  And a second transplant (see the Day 88 update) was still on the table, because we've been here before (i.e., remission).  However, the transplant was cancelled because the cancer had returned rather than go through a second transplant just to end up where I am now, we're going to do something different (see day 110 update).
That's the short version.  So far.  

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