[Msmulberry]

Treatment options for relapse

by Msmulberry on Mon Nov 17, 2014 12:40 pm

I’m looking for all the information and help I can get about treatment for relapse after my auto stem cell transplant. I’m 71, strong and healthy. Doctors tell me I’m younger than my age. In March 2010, I was diagnosed with locally advanced breast cancer and smoldering myeloma. The breast cancer was taken care of by Jan 2011 (heavy chemo, surgery, heavy radiation, preceded by lung surgery to rule out spread to my lungs which it hadn’t).

I bounced back immediately and took a 3-week trip to India. In April 2011 I went to Little Rock and was told the breast cancer chemo had knocked the smoldering myeloma back to MGUS but I had high-risk chromosomes. We watched and waited until July 2012 (except for Zometa), when I became anemic, the only CRAB feature I’ve ever had. An auto TVD PACE stem cell transplant was scheduled to begin in September, and I received my cells on 11/2/12 and returned for consolidation in December. During all this I had a very easy time and recovered in the least possible time and began maintenance of RVD and Zometa in Jan 2013. I had a quick complete response to this treatment.

My problem with maintenance was that I had felt very well before treatment and had no symptoms, no pain from bones, no illness, no kidney problem, only less energy. Now I was tired all the time, had all the dex results, some gastric issues. I was tied to my weekly Velcade treatments. I couldn’t lead the life I had before and despite yoga and walking and meditation, life no longer seemed worth living. My brain was fuzzy, and I could no longer concentrate to read or write.

In October 2013, I was changed to pomalidomide, dex and Velcade due to the side effects of Revlimid. It didn’t change anything, and in Jan 2014 I was told I was out of remission, which had lasted only 12 or 13 months. I was switched to carfilzomib, Revlimid, and dex. By now I was tired of traveling to Little Rock and decided to remain at home in New Orleans and received treatment from my oncologist and a transplant specialist. I had made clear to them both that quality of life is much more important then quantity. After 2 rounds of carfilzomib, I had a very good response and the bone marrow biopsy showed less than 0.5% and all other indicators were good. The dex and carfilzomib were dropped, and I started Rev 10 mg, 21 on 7 off.

In September, my indicators had gone up almost geometrically. I had another bone marrow biopsy at the end of October that showed 37 % plasma cells, the high-risk chromosomes and some new variations.

  Jun 16, 2014 Sep 23, 2014

Serum protein 6.6% (6.0-8.4) 8.9%
Paraprotein band 0.95 2.59
B2M 1.7 (0-2.5) 4.1
K/L ratio 1.73 (0.26-1.6) 5.90
IGG 1243 (650-1600) 3462

My oncologist sent me to the transplant specialist. We had an hour-long discussion about options. I can go back to carfizomib that worked well before; have chemo in the hospital (DCEP); and because I am such a young 71 year old, have an allo if one of my sisters is a match. He pretty much dismissed a second auto as less effective than the first. I have said all through this experience that I would not have a second transplant or ever have an allo. By the time I left this appointment, I found I was seriously considering an allo. I came home and went to the Beacon forums on allo and found that they seem to be very “unpopular.”

After 4 ½ years of pretty heavy cancer treatments, I am tired. I am 71, retired, have only an adult son, no grandchildren, and live alone. I have lots of very good friends and family (but far away). I have never understood the “battle with cancer,” the “fight it as an evil enemy” outlook. I don’t look at as an evil invader but as part of my body that is breaking down. Although the women in my family usually live well into their 90’s, I have never wanted that. I stopped taking any Revlimid about 2 weeks ago and have started feeling so much more energy and life has started feeling worth living again for the first time since maintenance began. Ironically this was the same time I received the biopsy results and was told if I do nothing I will soon start feeling the results of anemia and probably bone lesions and can expect death in a year or so.

So, I can stop treatment and soon feel tired, weak and a lower quality of life and die. Or I can start treatment and experience a poor quality of life but maybe not so bad and not die as soon. Or gamble on an allo stem cell transplant and and have great results or graft-versus-host-disease (GVHD) or die. So it’s clear I will die and I’m probably more OK with this than many people. But when told the difficulties will start so soon, it gets my attention. I’ve always said I don’t mind dying, but my son and family and friends seem to want me around.

I would appreciate any thought or advice. Quality of life is very very important to me.

[Lev]

Re: Treatment options for relapse

by Lev on Mon Nov 17, 2014 6:01 pm

Dear Msmulberry,

No answer from me ... but I am just as interested in this as you, and it seems that newer studies show that allo transplants may be a better and safer path ... and not as bad as many believe, I found the study discussed in the forum thread below to be very interesting:

"Results of allo transplant study at John Theurer Center" (started Oct 23, 2014)

[Msmulberry]

Re: Treatment options for relapse

by Msmulberry on Mon Nov 17, 2014 8:02 pm

Thanks. Very interesting and useful info.

[mikeb]

Re: Treatment options for relapse

by mikeb on Tue Nov 18, 2014 4:41 pm

Hi Msmulberry,

Like Lev, I don't have any answers. I wish I did. But I just want to let you know I read your post and I'll be thinking of you. You have some difficult choices to make.

Just a couple suggestions that come to my mind. You've probably already thought of these and maybe have done them already, but I'll mention them anyway.

First, I'd suggest having a frank heart-to-heart discussion with your son about how you feel (mentally and physically) and what you see the choices as (like you laid them out in your post).

Second, if your local oncology team includes a social worker or psychologist, it might be worth talking with them. I've often found that the more I talk with other people about choices I need to make, the more things get clarified in my own mind.

By the way, I'm completely with you on your thoughts about the phrase "battling cancer" and the like.

You've been through a lot. Hang in there and please let us know how you decide to proceed.

Mike

[SamM]

Re: Treatment options for relapse

by SamM on Sun Nov 23, 2014 4:19 am

Msmulberry,

Doing nothing is not an option.

Seek another treatment regimen – melphalan instead of Revlimid, for example.

When your back is against the wall and you have no treatment options, go for the allogeneic transplant.

Regards,
Sam