[anayansi]

Life after an autologous stem cell transplant

by anayansi on Thu Oct 23, 2014 3:48 pm

Hello,

My mother underwent an autologous stem cell transplant in May. It was a dramatic recovery but by mid-June, she was feeling like her pre-cancer self.

In the following months, she continued with a pre-cancer lifestyle. She didn't change a thing. To the point that she took a two week trip to Mexico in September and followed it by another two week cruise ship trip with my father this month.

She began a dose of 5mg of Revlimid in September (21 days / 7 days off). On the second round, she began to feel the extreme fatigue she felt before her stem cell transplant. Her doctors say her numbers are perfect, that she is perfect. But the fatigue has increased along with leg cramps that wake her up multiple times a night.

She is currently on a cruise, which I feel is like a death sentence to a person dealing with a compromised immune system. She felt ok the first week, but the past week has been hell for her. My father has told me that she hasn't been able to make it out of bed for a few days, and that she has little or no appetite. I have already made appointments with her doctor the day after her return.

At the moment, I feel like the parent in the situation. For me, it is completely irresponsible to take this sorts of trips months after such a procedure. At the same time, I am not living with the disease and I understand the need to go back to life being normal.

My questions are these:

1. What specific changes have you made in your life after a myeloma diagnosis and stem cell transplant that have helped you maintain energy and lead a "normal" life?
   
2. How do you deal with the side effects of Revlimid and in what ways do help counter the effects of fatigue, cramps?
   
3. Has exercise been important in your new lives?
   
4. Have you joined support groups? Have they helped? I tend to feel like her doctors are truly amazing, but are not living with the disease. I want to get her around people that are dealing with this everyday, but she resists. She says it's depressing. To me it's more depressing to not have the day-to-day tools necessary to deal with life and multiple myeloma.

Apologies for being so long-winded. I appreciate any insight, tips or just perspective on how to care for someone living with multiple myeloma.

[kullybunnny1]

Re: Life after an autologous stem cell transplant

by kullybunnny1 on Thu Oct 23, 2014 9:03 pm

Anayansi, first thank you for supporting your mother and for your interest in learning more about this disease. I am a autologous transplant recipient with a similar treatment timeline as your mother. Here are my thoughts.

Perhaps your mother, in her remarkable post-transplant recovery, did more than her body was able to.

I know that at day 100 I felt great. I had kyphoplasty to correct some back issues and then my mind said "let's go". I knew I wasn't able to do a 3 mile run but thought, hey, let's do some yard / house work. I'm on a 10 mg Revlimid daily maintenance and this fatigues me. I would try to work through, but felt terrible at the end of the day.

In finding the Myeloma Beacon you've found a great forum for support. Encourage your mother to also read the MB and she'll see it's far from depressing. I read the Myeloma Bbeacon and it helps me by seeing others who either seek assistance for themselves or loved ones in living a new "normal" life with multiple myeloma.

Finally, some thoughts on your questions. Hydration is always key to avoiding leg cramps. If Revlimid is causing fatigue or other issues, let the doctors know and only exercise as much as your body will allow. An apple tastes just as good with little bites too!

Hope this helped.

Kully

[mikeb]

Re: Life after an autologous stem cell transplant

by mikeb on Fri Oct 24, 2014 1:29 pm

Hi anayansi,
Kully gave you a good reply, so I'll just add some answers specific to my case to your questions. First, though, my wife and I were considering taking a cruise this summer (approximately a year after my auto SCT), and we asked my myeloma specialist whether it would be ok. He said sure, go for it. In the end, we didn't do it for reasons unrelated to multiple myeloma. So it's wrong to consider a cruise as a "death sentence" for your mother.

I am also on Revlimid maintenance, taking 10 or 15 mg per day everyday. I've bounced around between 10 or 15 depending on my platelets and WBC numbers.

1. I can't think of any major changes I've made in my day-to-day life because of multiple myeloma, the SCT, or the Revlimid maintenance. I retired (in March), but probably would have done that independent of the myeloma. One change I can think of is that I wash my hands a lot more frequently than I used to, but I'm not a germ-phobic or anything like that.

2. Side effects of Revlimid for me have been lowered platelets and WBC, which we've dealt with by lowering my dose from 15 to 10 mg. Also some fatigue, but usually not horrible. I'll take a short nap in the afternoon if I need to. I push myself less when doing outdoor chores around the house, doing them more slowly, but still doing them. For example, I spent most of the day Monday splitting logs and chainsawing the trunk of a large tree on our property that fell during Superstorm Sandy. I also get cramps sometimes, in my hands and sometimes in my legs. Drinking pickle juice or cider vinegar diluted 1/2 with water helps "unlock" things. But it's no fun. That's probably the most annoying Revlimid side effect for me.

3. Yes, exercise is really important. One thing your Mom might look into is the 3-month Livestrong exercise program for cancer survivors offered at many YMCAs. You don't have to be a YMCA member, and it's free. I highly recommend it. But I have one other comment on this question - I don't agree with your phrasing "new life" in this question. I don't think of what I'm living now as a "new life" at all. It is the same old life that I had before, but just dealing with some different circumstances. And I think that's a really important distinction. I think you'll be able to help your mother more if you don't consider what she's going through as such a dramatic change from before. Yes, it's different, but it's not a whole new life.

4. Yes, I go to some meetings of a local support group (in Philadelphia). I think they have been helpful to me in two ways. First, it's encouraging to see and talk with people who have been living with multiple myeloma for 10, 15, or 20 years. Second, it makes me feel good to be able to offer suggestions and advice to people who have been recently diagnosed with multiple myeloma. As Kully said, you get a lot of the same sort of thing from The Myeloma Beacon, so it would be great to get your Mom to read it regularly. But there's something nice about seeing people face-to-face that you get with a support group. Plus a side benefit of the Philly group for me is that it gives me an opportunity to see an old friend in Philly before or after each meeting.

I hope these answers are a help to you and your Mom. She's lucky to have you caring about her the way you do. I do think she's doing the right thing in continuing to be active and to do the things that she enjoys and keeping up her pre-myeloma lifestyle as much as possible, even doing the cruise. We all have to learn what our new limits are by bouncing up against them, and those limits change. So it's like a continuous experiment. If you overdo things, you learn to dial it back a bit. That might be a lesson from this cruise for your mother, but I admire her for giving it a go. I like her spunk!

Best of luck to your Mom and to you. I hope she has a quick recovery from whatever is ailing her on the cruise.

[JimNY]

Re: Life after an autologous stem cell transplant

by JimNY on Fri Oct 24, 2014 1:47 pm

Hello anayansi,

One place you may want to check here in the forum for additional information is this posting:

"Useful links to existing forum discussions (about treatments & side effects"

It has links to forum discussions on different treatments and different treatment side effects. There is a link, for example, that will take you to all transplant-related discussions, some of which I think you'll find useful, and also links to discussions about cramps and fatigue.