[JanBeth]

Jan, 60, training for a stem cell transplant

by JanBeth on Mon Jan 16, 2017 4:20 pm

Hello all,

I have been sporadically checking out this site for the last few months since my diagnosis, I have finally decided to join the group. A little background, about 10 years ago I was diagnosed with Mycobacterium avium complex (MAC), which is a lung disease, I was on heavy antibiotics for about 7 years and my doctor in Ohio sent me to National Jewish Hospital in Denver (the experts in the field). I should also let you all know that I am "that healthy person" – I've been a vegetarian for 25 years and a personal trainer for about 20 years. My doctors have always called me the "healthiest sick person!"

In Denver, the doctors decided to remove a portion of my lung that had the infection, 3 years ago. I go out to Denver once a year for a check-up and have tested negative since the surgery. The disease never goes away, it just lays dormant. I had my check up the end of August 2016, and a few weeks after I got home, my doctor called me to tell me that she noticed a high protein level in my blood, ran another test and wanted to let me know and suggested that I see a hematologist / oncologist.

When my husband and I met with the doctor, he was very positive, said the numbers from Denver were very low, and that it would most likely be years before I needed any treatment. He said I would probably have to get checked every 6 months, but he wanted to run his own tests and to come back the following week. When I went back, he was shocked (me too) the numbers had gone up quite a bit and referred me to the myeloma clinic at the University of Michigan. I had a PET scan, which showed a lytic lesion on my hip, and a bone marrow biopsy showed 60-70% plasma cells. So treatment begins!

I have already completed radiation on my hip. I had to wait a bit on beginning chemo because I had to get a shingles shot because of my lung problem. I now am beginning the second round of Revlimid. The plan is that after 4 rounds I will have the stem cell transplant. There may be complications because of my lung issue. My breathing capacity has to be at least 50% for them to do the transplant. Last I was tested, and I was at 52%, I've been training for the transplant! I have the breathing test this week.

The most difficult thing of this whole process has been sharing my diagnosis with family and friends. My husband is having a hard time, the worst was telling my 2 sons, both who just got married in the past year. We spent Thanksgiving celebrating them and the news that my older son and his wife are expecting a baby boy in May! Yay! Then I had to break their hearts and tell them about me. We have chosen not tell my father (89) yet, as my mom passed away 6 months ago and he is still grieving. I am a Jewish mother, I take care of everyone. I am very positive and trying to have the best attitude.

Anyways, glad for this website, as it can really be helpful. Wishing everyone the best!

[Jcleg2016]

Re: Jan, 60, training for a stem cell transplant

by Jcleg2016 on Mon Jan 16, 2017 6:54 pm

JanBeth you are a very positive person, just continue to let it shine through. I'm very touched reading your story, it motivates me to pull on the highlights in my life when the going gets tough. I lost my mom too in May of 2016 and in August found out dad's myeloma had relapsed. It's been a rough road since, but your story has made it a little lighter tonight. Thank you.

[cdnirene]

Re: Jan, 60, training for a stem cell transplant

by cdnirene on Mon Jan 16, 2017 7:10 pm

I went into remission part way through my 9 months of treatment. Treatment was continued to deepen the response. I didn't have a stem cell transplant. Now, 19 months post-treatment, I am still in remission.

Would I have fared better with a transplant? I'll never know. Experiences with transplants vary widely from no effect to many years of remission. The same can be said for the path I'm following.