Decision time: modified auto, allo or drug roulette? (Part One)

I ended Saturday’s post this way:  “I’ve had an epiphany.  I like the sound of  ‘in my future.’  This has been a game changing week for me, full of amazing coincidences, reaffirming phone calls–and signs.  Some ‘signs’ are too improbably to ignore.”

I’ve spend the last several months focused on which late stage myeloma therapy to try next.  I’ve sought the counsel of seven different, well respected myeloma specialists; four of them examined me.

My obsessive quest for the next, best therapy took on a sense of urgency after pomalidomide (POM) started losing effectiveness in January.  The doublet of POM/dex started slowly, but after three months, bone pain from new lesions began to subside.   A subsequent PET scan five months later showed that POM had worked for four months or so.  But even newer lesions had begun to appear after that, including an extramedullary tumor (outside the bone marrow) in the lymph nodes in my groin; never a good sign.

What about my M-spike?  It continued to drop; now a practically immeasurable 0.1.  Unfortunately, recent PET scans have proved that my myeloma has slowly become more and more non-secretory.  Light chain ratios can’t measure it, either, making it difficult to follow a new drug or drug combination’s progress.

Making matters worse, after reminding my Mayo Clinic specialist at the time, Dr. Roy, that I hadn’t used a number of other available anti-myeloma drugs, he reminded me that “the next drugs I try are less likely to work for very long.”  I still hadn’t tried Kyprolis, Cytoxan, Bendamustine, Thalomid (thalidomide) or others.  Dr. Roy wasn’t very optimistic.

“Pat, they may help for a few months…”

And difficulty getting into clinical trials wasn’t helping.  As a non-secretor, I wasn’t eligible for a single clinical trial at Mayo Clinic that might help me.

Dr. Roy suggested I try something more aggressive.

At ASH in San Francisco, I met Total Therapy specialist, Dr. Guido Tricot.  Dr. Tricot had worked with Dr. Barlogie in Arkansas for over a decade, eventually taking what he’d learned and helping to build the successful myeloma treatment program at Huntsman Cancer Center in Salt Lake City.

Along with dozen other myeloma specialists and patient activists, Dr. Tricot and I were members of an advisory board to a  small, innovative fundraising group, CrowdCare Foundation.  At the inaugural meeting of the group at ASH, Dr. Tricot and I had a chance to discuss my darkening situation at length.  Dr. Tricot insisted I come see him in Iowa City right away.  “Pat, I can help you.” he said, confidently; apparently Dr. Tricot had left Huntsman to build a better, even bigger program at the University of Iowa Cancer Center.

After stalling for a few months,  I traveled to Iowa City to undergo a series of tests at his clinic.  Knowing that I still had 5 million stem cells on ice–leftovers from a failed auto SCT back in the summer of 2011–Dr. Tricot recommended I harvest an additional 5 million cells so he could infuse all 10 million back after a double shot of high dose melphalan.

I wasn’t surprised that Dr. Tricot would recommend I undergo a second SCT.  What did surprise me was I was openly listening to the option.

I swore after my ineffective first attempt in July, 2011, that I would never undergo another SCT unless it was modified some way.  What do they say about people that repeat the same thing, expecting a different results?

Dr. Tricot wasn’t suggesting this out of the kindness of his heart. Dr. Tricot proposed starting me on a regimen of thalidomide/Velcade/dex a week before, during and a week after zapping me with melphalan.  He would then continue as soon as the supercharged infusion of my 10 million stem cells engrafted a few weeks later.

Definitely an old school approach.  Carpet bomb (my new myeloma specialist, Head of Hematology at Mayo Clinic, Jacksonville, Dr. Chanan Khan, calls it the “nuclear option.”) my myeloma into submission.  The goal?  Buying myself an extra year or two.

If you’re interested in a more detailed timeline, I wrote a series of five posts about my trip to Iowa, along with another describing how I felt before and after my trip:

I want more days to walk along the beach


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


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


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


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


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



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


I was suprised when,”Dr. Roy suggested I try something more aggressive.”  My Mayo Clinic specialist, Dr. Roy, and my well versed medical oncologist, Dr. Luke, encouraged me to take Dr. Tricot’s advice: undergo a modified, autologous (using my own stem cells) stem cell transplant in Iowa City.  Here’s a post I wrote about that, read by almost 1800 people:

Bad news from my Mayo Clinic specialist


OK.  It was clear that Pattie and I had a series decision to make.  Except for Dr. Tricot, Dr. Roy and Dr. Luke, every other myeloma specialist I spoke with was strongly discouraging me from transplanting again: Dr. Alsina, my former myeoma specialist and head of the BMT Unit at Moffitt Cancer Center, Dr. William Bensinger, head of the busiest transplant center in the United States, Hutchinson Cancer Center in Seattle, Dr. Noopur Raje, a myeloma researcher and clinician at Mass General in Boston, along with Mayo Clinic’s Dr. Asher Chanan Khan.

Then things got complicated.  As a member of CrowdCare Foundation’s advisory board, we are in the process of reviewing a vetted group of ten clinical trials that need funding.  These aren’t just any clinical trials.  There are the most likely to help high risk and late stage multiple myeloma patients live longer; trials that could help us sooner, rather than later.

The board–and patients and caregivers that have been listening to representatives for all then possibilities on Myeloma Crowd Radio broadcasts–identified several clinical trials of the ten (whittled down from an original 36 submissions) the stood out.  One of them was headed up by Dr. Koehne at Sloan-Kettering in New York City.

A modified allogeneic (donor) stem cell transplant, Dr. Koehne discovered a way to avoid graft versus host disease (GVHD), making the process safer.  But what makes Dr. Koehne’s program exceptional?  He takes T cells from the donor and modifies them to attack the patient recipient’s myeloma, hopefully helping to train the brand new immune system to do the same.

Amazing!  And after speaking several times with Dr. Koehne, he kindly agreed to review my medical records and accept me into his latest trial–the same trial CrowdCare may fund.  Dr. Koehne asked me to fly up to Sloan-Kettering to meet with him; the appointment is scheduled for June 3rd.

What an opportunity!  To help CrowdCare from the inside; a real patient’s perspective.  But there is a downside: too many questions and not enough answers.

Complicated?  After sharing the feeling that several myeloma docs I spoke with weren’t comfortable helping me squeeze every extra month I could out of a variety of therapies (I call it the “Throw it all at the wall and see what sticks” theory), I was fortunate that Dr. Chanan Khan agreed to help me do just that.

Dr. Tricot advised that I dump my doublet of POM/dex–which was starting to slip anyway–and switch to a triplet of Cytozan, Kyprolis and dex (CCd; the second “C” stands for the common name for Kyprolis, carfilzomib).  Since it’s tougher to harvest stem cells when a patient is using an IMiD (Thalomid, Revlimid, Pomalyst), I would drop POM from treatment.  A bit unusual; most docs would have simply added Kyprolis to POM and dex.

Dr. Chanan Khan was fine with that.  After two cycles of the new therapy, Dr. Chanan Khan dropped a blockbuster, suggesting that he would have FDA Compassionate Use of the exciting new immunotherapy drug, daratumumab, in a month or two.  His idea: If CCd is working, keep it up.  If it starts to weaken, try daratumumab next.  If that doesn’t work, by all means head up to Iowa and “nuke” allow Dr. Tricot to “nuke” my myeloma.

Here’s a link to a post I wrote about it:

CCd hot new therapy for relapsed patients


At  this point I became paralyzed.  Too many options, none of them very good.  It had become to easy to kick-the-can- down-the-road and stall heading up to Iowa or New York.

Try a modified auto (option A) and make myself sick for three months?  Or go cutting edge and try the modified allo (option B), enduring the long lasting effects of an allo.   The third option (C), using a variety of remaining drugs and drug combinations, helping to patch-me-up and keep me going as long as possible sounds great, but may not give me more than a year and a half or so.

Dr.-Gunther-Koehne-200x200Analysis paralysis.  I just wanted it all to go away!  Wednesday was a tipping point.  Dr. Koehne’s assistant called to make an appointment for me to fly up to New York and see him June 3rd.  And the swab kit to help the team in NY find me a donor match arrived Wednesday, making option C feel real.  I laid out all of the pros and cons of each of the three options.  It didn’t help.

Last week I was distraught.  I was running a fever from my undiagnosed urinary tract infection (UTI).   And I had no idea which therapy direction to take.  All had real pros and cons.  Pattie was getting frustrated.  “You make a decision, then the next day you change your mind.”

I tried explaining that figuring this out was like playing three dimensional chess–too many moving parts, too many things that could go wrong–with no clear upside.  Just a lot of toxicity and wasted time.  Knowing how hard CCd had been for me to handle for the first two cycles, even option three–experimenting with a number of different drug combinations to see what works, rinse, repeat–was starting to sound unappealing.  Talk about an ever changing, long list of potential side effects!

Then something changed; something that broke me out of my funk.   Unfortunately, I need to stop here and get ready to start my next cycle of CCd.  Kyprolis IV (along with benadryl and anti nausea meds) in less than an hour.

Tomorrow I’ll share what changed my thinking, leading to a decision that I’m not going to flip-flop about.  For now I’m off.  Better hydrate to help nurses get a better “stick.”

Feel good and keep smiling!  Pat

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