[Erik]

My post-stem cell transplant experience

by Erik on Fri Sep 19, 2014 5:08 am

My first experience with this forum and site. Great!

I had my autologous stem cell transplant (ASCT) in October last year after 6 months of Velcade and a Cytoxan (cyclophosphamide) + dex. Was tough, but I would definitely do it again. There are a lot of things you can learn if you get in touch with someone who has had an SCT, and I would advise anyone going into this treatment to find someone or a group (support groups consisting of patients having gone through are available at most centers) who has experience.

Outcome is variable but I have met people who have survived in full remission for more than 10 years. I am still in remission but am not making any big plans. I am trying as much as possible to feel joy every day now. Smelling flowers, really enjoying every change in weather, all little aspects of life I didn´t pay so much attention to before.

One experience I had was a lot of muscle loss and some signs from my heart as well (it is a muscle) which I blame on the combination of Cytoxan and Velcade. 6 months after the treatment the heart problems went away, and muscles started returning. You could say the body starts responding to using the muscles once you have the fatigue go away and you start working with your body.

I probably should have exercised more, but if you are caught with the disease in a very active life, you don´t seem to set aside enough time for that. Should have done so, and now have the ambition to really take care of my body with jogging and some moderate fitness program.

One thing I did after my ASCT – as soon as my guts weren´t revolting every hour – was to take the car and drive to a nearby park and go for a walk, making it longer and longer every day. First day was only 50-100 yards and back. After another 2 weeks, I could walk a mile, and I think this very mild exercise helped me back to health much quicker.

I was back at work after 2 months, before that I worked from home, via the Internet, already after 3 weeks. I believe the walks and working from home was very good for my mental health. I think one has to accept feelings of insufficiency and stress, and that you have to deal with it by trying to perform in one way or the other, both physically and by performing some type of "brain work", accepting that you don´t perform as well as before but that you are on your way back.

Of course, one is sensitive to infections after the ASCT but, in my mind, taking the car alone and walking in solitude, seeing the wonders of nature, incurs no increased risk of infection and you should really take that opportunity as one part of coming back. Worked great for me.

[Ian]

Re: My post-stem cell transplant experience

by Ian on Sat Sep 20, 2014 3:09 am

Thanks for sharing your experience Erik.

Did you do your stem cell transplant in hospital or outpatient? Would you do it differently now, if you had the choice?

Welcome to the forum, by the way. I think you'll find it valuable. I certainly have.