[LibbyC]

An update on my allo (donor) stem cell transplant

by LibbyC on Tue Apr 01, 2014 8:33 pm

At the end of April it will be three years since my allo . I had some pretty hefty graft vs host disease (GVHD), but I am able to live with it. My paraprotein (M spike) after the chronic GVHD decreased from trace to not detected.

However to keep my chronic GVHD at bay I have been on immunosuppressors for quite some time. Essentially, my new immune system won't be working as well as it could on it's anti-myeloma capabilities. It has taken 1 1/2 years for the paraprotein to be not detected to increase to a measurable amount (2 g/L or 0.2 g/dL) . The doctors don't know if this is the original myeloma or something new.

Over the last ~ 3 months my dose of immunosuppressors has been decreased & the paraprotein is back down to trace . But I can feel my chronic GVHD coming back! So I will have to increase the levels of the immunosuppressors again & so the cycle continues.

Life is a balancing act.

When I had my allo 3 years ago it wasn't seen as standard treatment. Now at the myeloma clinic I attend they offer them to patients with high risk myeloma or young patients. The treatment regimen is induction, auto & then allo SCT.

[Guest1]

Re: An update on my allo (donor) stem cell transplant

by Guest1 on Wed Apr 02, 2014 10:33 am

Glad to hear that you are doing well. As I have previously mentioned, my doctors have been toying with the Allo idea for me over the last year. The good news is yesterday, I was told a unrelated 10/10 match was found in the registry, along with 3 9/10s.

[Nancy Shamanna]

Re: An update on my allo (donor) stem cell transplant

by Nancy Shamanna on Wed Apr 02, 2014 11:57 am

hI Libby, thanks for providing the update on your health. i am sure it is of a lot of interest to others contemplating having an 'allo' transplant, or those who have already had them. Sorry to hear of the ongoing GVHD problems, the low immunities and back pain though (from another post). Have you tried physiotherapy or other treatments to help with the back pain? My back pain slowly decreased and now I am back to quite a routine life, and can stand for periods of time (such as in all day choir workshops!), and can walk long distances again. It took several years though, to reach this stage of activity, without pain.

I just have one friend who had an 'alllo'. I think she had a donor from a sibling. She is a long term survivor! Good to know that the methods of doing allos are improving all the time and that in some cases they are offered to myeloma patients. When I was up at the hospital getting blood tests, etc., for my 'auto' transplant, I met a younger woman with leukaemia. She was on a wait list to get an allo....but there was no 'match' available for her. I felt very sorry for her since she was very ill. It made me realize that as far as getting a replacement of stem cells goes, I was lucky that I could use my own cells.

[lys2012]

Re: An update on my allo (donor) stem cell transplant

by lys2012 on Wed Apr 02, 2014 10:09 pm

Hi Libby I'm happy to read its now three years since allo. Yes, you've had to deal with more then average multiple myeloma patients with the GVHD, but I'm happy to read your m-spike is low and the allo immune system is working hard to keep it in check!

Oddly enough after my auto my immune system seemed to kick in to overdrive and I've been diagnosed with a few autoimmune issues. Have done a few rounds of prednisone to quiet it down. Feeling good though, I've 4 years since my diagnosis now.

[Mark]

Re: An update on my allo (donor) stem cell transplant

by Mark on Fri Apr 04, 2014 12:28 pm

Hi Libby,

Sorry to hear about the on-going GVHD issues. It is great that your donor immune system can handle you myeloma cells so well. Immunotherapy is far more powerful than any drug is, that is for sure. It is great that your clinic offers allos as part of upfront therapy to younger and/or high risk patients. Few clinics here in the US offer their younger patients an immunotherapy option. I feel very fortunate that the one I go to offers all options to their patients. All good vibes being sent your way that the donor immune system continues to keep the myeloma at bay!

Mark

[LibbyC]

Re: An update on my allo (donor) stem cell transplant

by LibbyC on Sat Apr 05, 2014 8:04 am

Hi Mark, Lys2012 & Nancy S,

What are a few minor GVHD issues when compared with the alternative. Happy 3rd anniversary to you Mark for May. No doubt like me you are thanking your lucky stars for your donor.

Lys2012 - Most of the time I view my GVHD as an autoimmune disease, basically it's how it is treated. I am trying to work out an optimal dose of prednisolone at the moment. One that keeps me happy (my GVHD in check, minimal myeloma growth) & the doctors happy with the long-term use at that dose. I hope your autoimmune issues settle down & if you have to take prednisone it is only a small dose.

Nancy - The back pain I experience now is nothing compared with the broken bone back pain I had at diagnosis. Most of the back pain is muscular and in reality I probably push myself a little bit more than is good for me. Prior to diagnosis I did a basic Pilates routine daily. I do see a physio and exercise physiologist & masseuse (not as frequently as I should) - basically we are working out what I can do to help my muscles when I am on different prednisolone doses. To keep moving I've got to keep moving & stretching. BTW there was wallaby poo on our verandah at the front of the house today - it obviously called in when we weren't at home.

Take care,
Libby