[StandingTall]

Multiple myeloma strikes back

by StandingTall on Thu Sep 15, 2016 11:16 pm

Hi.

It's been several years since I posted here in the forum. I first introduced myself back in October of 2013 in the thread, "My multiple myeloma curveball".

I was diagnosed 3 years ago. I had an autologous stem cell transplant (ASCT) in early 2014. Remission for a good year. Early this year, I had shoulder pain just after finally returning to work (I thought at first it was a rotator cuff issue). Blood labs showed that multiple myeloma was significantly beginning to declare itself again, but a bone marrow biopsy showed much lower. My specialist said the discrepancy could signify a plasmacytoma and of course that's when I knew it was my shoulder.

I had radiation to deal with the plasmacytoma in my shoulder and I was then put on Kyprolis / Revlimid / dexamethasone (KRD) regimen. Results showed instant favorable response, leav­ing only elevated Bence Jones monoclonal protein markers. Went to Seattle Cancer Care Alliance for a second autologous transplant. While I certainly was not eager to go through this again, I handled it well, and members of the care team were beside themselves with how quickly I recovered. I remember my first transplant being far more harsh.

I recently had Day +100 follow up diagnostics. Bence Jones proteins are still present. Bummer.

Next plan is to join a Fred Hutchinson clinical study headed by my specialist investigating alter­nating treatments of ixazomib (Ninlaro) and Revlimid. Two months of ixazomib maintenance doses followed by two months of Revlimid maintenance, and following this pattern for two years of study. The Ninlaro is provided at no cost. The study is to determine the efficacy of alternating drugs in regards to staving off resistance and lessening chances of secondary cancer from Revlimid. I start this next week.

Those are the facts, but my personal life has certainly been a rollercoaster in between. I don't think I'm really the same person I was three years ago. Cancer is a gauntlet that isn't for the faint of heart. Those who are patients and those who care for them. It's a crucible that determines the strength of your spirit and the bonds of your relationships. Some spirits / bonds are broken and some are strengthened.

[Multibilly]

Re: Multiple myeloma strikes back

by Multibilly on Fri Sep 16, 2016 5:19 am

Standing Tall,

Sorry to hear that your myeloma had struck back. I hope that the Jedi returns as you go into the trial and I applaud you for participating in that trial.

I will also be very curious to know how how your effects of the alternating ixazomib (Ninlaro) / lenalidomide (Revlimid) protocol. Do you know what dosages you will be on for each drug at this point?

For those not familiar with this trial, see:

"Alternating Ixazomib Citrate and Lenalidomide as Maintenance Therapy After Stem Cell Transplant in Treating Patients With Multiple Myeloma" (information at clinicaltrials.gov)

Description:

This phase II trial studies the safety of alternating ixazomib citrate and lenalido­mide as treat­ment to help keep cancer from coming back after stem cell transplant (mainte­nance therapy) in treating patients with multiple myeloma. Ixazomib citrate may stop the growth of cancer cells by blocking some of the enzymes needed for cell growth. Lena­lido­mide may stimulate the immune system to attack cancer cells. Giving ixazomib citrate and lena­lido­mide as mainte­nance therapy after trans­plant may prolong the length of time until the cancer returns.

[StandingTall]

Re: Multiple myeloma strikes back

by StandingTall on Wed Sep 21, 2016 1:09 am

Thanks Multibilly! I wanted to get more information before I responded.

For Ninlaro, I will start at a full dosage (4 mg) taken on Day 1, 8, and 15 with a week off. It's possible to dose reduce if necessary, but it's not preferable because lack of data concerning reduced dosing for this trial.

Revlimid will be at 10mg for me. Anything less than 5mg is considered ineffective, according to my specialist.

My post transplant recovery has been optimal and my labs show good renal function, so we can start on the higher end of dosages and see what happens.

[Dean UK]

Re: Multiple myeloma strikes back

by Dean UK on Mon Sep 26, 2016 5:43 am

Hi

Sorry to hear your myeloma has struck back.

A very interesting thread.

I'm new to all this, just starting to get ready for my stem cell transplant in next month or so. Still trying to get my head around it all, dealing with multiple myeloma.

I really hope you get a good run of remission after this stem cell transplant. Good luck.

Dean