[Unclemike1]

Mike, 43, newly diagnosed September 2016

by Unclemike1 on Tue Jan 17, 2017 8:08 pm

Hello to everyone, my name is Mike,

I was diagnosed with IgG kappa multiple myeloma in September of last year. I wasn't showing any signs until August, when I had my first case of pneumonia ever in my life. I was treated for it at an urgent care center and recovered fine.

After being back at work for a week, I came down with another case of pneumonia that hospitalized me. When I was in the hospital, I was visited and tested by a team of doctors and students for various possible reasons why I had back-to-back cases of pneumonia. The doctors couldn't figure out why I was anemic and chalked it up to a possible fluke. I was released from the hospital after 2 days and stayed out of work for the next 2 weeks just to make sure I wouldn't catch anything else too soon.

A week after returning to work, I developed a skin infection in my hand and had a red line running up my arm all the way up to my arm pit. I was hospitalized for it and luckily avoided having my hand cut open to relieve the pressure from the swelling. Again, I was visited by tons of doctors and told that an appointment was made for me at the hematology department a week later and I should not miss it no matter what.

I was released from the hospital and went to the appointment, where they did a bone marrow test and a full skeletal xray. They gave me another appointment 2 days later and that was the day that I was diagnosed with having multiple myeloma.

The x-rays didn't show any lesions at all, and testing for the liver and kidneys came back good. My bone marrow, however, had 35% malignant plasma cells, and the biopsy showed a number of translocations that put me at a high prognosis but, a couple of trisomies that knocked me back down to a standard prognosis.

I've been on treatment for the past 4 month with Ninlaro (ixazomib), Cytoxan (cyclo­phos­phamide), and dexamethasone. My numbers are all going in the direction they should be, and I'm getting my stem cells harvested soon, then back on to treatment for another 2 months.

My decision about having an autologous stem cell transplant is NOT to have it done now and wait (the whole quality vs quantity thing) . My doctor keeps pushing for me to have it done now but, my gut is telling me to wait. All of the research that I have been doing points to it being an older standard of care, pre-proteasome inhibitors. From what I have been reading, more and more newly diagnosed people are postponing the transplant in favor of maintenance after the first rounds of chemo are done.

[elizabethmwm]

Re: Mike, 43, newly diagnosed September 2016

by elizabethmwm on Fri Jan 20, 2017 12:23 am

Hi Mike. Welcome.

I was diagnosed August 2012 and had a stem cell transplant February 2013. A stem cell transplant is not an easy procedure to go through, and from reading other patient's posts, we all tend to have different experiences both in the transplant process and in our outcomes.

I do believe from what I've read recently that induction therapy, a stem cell transplant, and maintenance therapy is still the standard (if the patient is healthy enough to manage the transplant).

That being said, it certainly is an individual decision. Try to figure out why your "gut" in saying no, and ask your doctor why he is recommending a stem cell transplant. Regardless of what you decide, harvesting the stem cells now is a good idea so that they will be on hand for a current or later transplant. If possible, get a second opinion at a major cancer center with a myeloma specialist (if you're not doing that already).

The Myeloma Beacon has a wealth of information and some threads on when and if to do a stem cell transplant among the many threads about transplantation (that link is from this helpful post).

Best wishes on your treatment.

[Hopeful1]

Re: Mike, 43, newly diagnosed September 2016

by Hopeful1 on Fri Jan 20, 2017 8:01 am

Hi Uncle Mike. I admire your decision, it's YOUR decision.

My understanding is after a good response to the first round of treatment, then transplant, allows the opportunity to use the maintenance drugs should the transplant fail. If you use the maintenance drugs now and they fail, options quickly become limited?

Transplant scares the heck out of me for many reasons. Exhausting chemo that will help me scares me too. I'm not sure how one knows the best decision.

[Unclemike1]

Re: Mike, 43, newly diagnosed September 2016

by Unclemike1 on Fri Jan 27, 2017 8:15 am

Thank you for the response, hopeful1.