Tom Paul

First post: Oct 11, 2016 Latest post: Jan 10, 2020
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  (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   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.  I went to Mayo and had a few million stem cells harvested and stored in case I needed them someday for a transplant (sometimes still referred to as a bone marrow transplant).

Three months later, 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 couldn't go back to the dosages that were working, unless insurance covered it, which it didn't.  In early October, I began a regimen of  carfilzomib (Kyprolis), lenolidamide (Revlimid) and dexamethazone.   And lots of it.  That was completely ineffective, I felt awful, and didn't know if it was because of the disease or the treatment.  A stem cell transplant scheduled for early November was postponed, and I was admitted for 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).  This got me in a position to get a stem cell transplant.  And gave me my first taste of the side effects of old-school chemotherapy.  

I spent the month of January, 2017 at Mayo Clinic getting, and recovering from, 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 got to think about doing it again.  I had developed cataracts from the steroids I was taking, so I got one eye "done" in hopes that I would be slightly less miserable in my recovery from the second transplant.

 In a nutshell, the first transplant was effective; no cancer cells were detected in my bone marrow 2 months post=transplant.  And a second transplant (see the Day 60 & 88 updates) was still on the table, because we've been here before (i.e., remission).  However, the 2nd transplant was cancelled after pre-transplant testing, 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).  I immediately scheduled a second cataract surgery (I don't know how people can live without being able to see well).
That's the short version.  So far.  

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Tom’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register