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Lessons learned: My 2nd opinion in Iowa (Part Four)

Home/About Pat, Diagnostics, Transplants/Lessons learned: My 2nd opinion in Iowa (Part Four)

Lessons learned: My 2nd opinion in Iowa (Part Four)

I rarely get writer’s block.  A reporter from the Jacksonville newspaper just emailed me a list of questions about our beach party event next week.  I answered them without giving it a second thought.  But writing today’s post has me stumped.  This is real life or death stuff.

I’ve heard from several good friends over the last 24 hours.  I appreciate their input and support.  Friends and family have chimed in.  But in the end, I’m the one who’s going to have to make the decision.  Do I travel far from home and try to “nuke” my myeloma into submission, or do I stay the course, experimenting with different therapy combinations, hoping to drag things out for a number of more years?

I see distinct pros and cons for both approach.  There is no right or wrong here.  Many of us know patients that failed a first transplant, only to try again and have things turn out much better the second time.  I’ve also heard from a number of patients (and heartbroken caregivers) that tried an aggressive approach, only to end up bruised and battered, never to recover.

Dr. LukeYesterday I wrote that, “I did get a chance to visit with my medical oncologist, Dr. Mathew Luke, for about 30 minutes this afternoon.  He was both insightful and candid.  But its late and I need to rest.  I’ll share more test results–and Dr. Luke’s interpretation of Dr. Tricot’s therapy recommendations–tomorrow morning.”

Dr. Luke was kind enough to help me identify where new myeloma activity had developed since my last PET scan 8 months ago.  We could see where pomalidomide/dex had reduced the size and intensity of some lesions at first, but now new lesions had begun to form; some along side older, less active ones, others in different areas.

Of course I could have told him where they were based on the pain; I can feel pain at all of the new lesion sites–except the one in my skull.  Who needs high tech diagnostic equipment, right?  I know my body pretty well by now.  I can feel where the new holes are!

Dr. Luke normally defers to one of the specialists I’m working with.  What did he think of Dr. Tricot’s plan?

“It could work.”  He said, surprising me.  “But there’s so much bone damage…”  He kept repeating, shaking his head from side to side.  “So much in your bones.”

Thanks a lot, Doc!  That’s encouraging.

“Kyprolis and Cytoxan is the most effective combination I’m seeing now.”  Dr. Luke said.  “If you can stop the new lesions, a transplant might have a chance.  But there’s so much cancer in your bones…”

I know, I know; I get it!

To review, Dr. Tricot at the University of Iowa recommended I stop taking pomalidomide while it still had some efficacy, saving it for later.  He felt I should switch to a combination of Kyprolis, Cytoxan and dex for three or for months, then try and harvest more stem cells.  Another reason for stopping POM now; the IMiD could make it tougher to harvest.

I have 5 million stem cells on ice.  Dr. Tricot wants to collect 5 million more.

He would then use a combination of high dose melphalan, along with thalidomide, Velcade and dexamethasone before, during and after re-infusing all 10 million of my stem cells.  Based on how well I was responding, he would then use a variable combination of drugs for several months as consolidation, followed by some pretty heavy duty maintenance on the back side.

Why so many stem cells?  So he can hit me with more chemotherapy, sooner.  Sounds like a cakewalk to me!

Honestly, I can endure most everything–as long as it works.  But like my first transplant, it would break my heart if it didn’t work–and it might even kill me.  Hammer my already fragile immune system that hard and I might never get back to “normal,” especially if my myeloma got pissed off (like it did the first time I transplanted) and ramped up along the way.

The upside?  I could be stable–or even myeloma free–for several years to come.  And resensitization could allow drugs to work better later then they do now.  Dr. Tricot did promise he could keep me alive for five more years; a disarmingly bold statement for a myeloma specialist to make.

And if I don’t transplant?  What if Dr. Roy at Mayo adds a proteasome inhibitor like Kyprolis or ixazomib to pomalidomide and it works?  I could get up to a year reprieve before scrambling for a new combination that might work for a while more.

If you ask me, both options leave a lot to be desired.   Maybe if I go to bed early there will be a third, better option tomorrow morning.  A guy can dream, right?

Let’s see if it works!  I’ll let you know tomorrow.

Feel good and keep smiling!  Pat