[Alice]

Should I have an SCT?

by Alice on Sun Sep 16, 2012 10:32 am

Hi All

I was diagnosed with IGA lambda light chain myeloma in February 2011, together with Amyloidosis in my kidneys, liver and spleen. My bone marrow biopsy showed 20-30% plasma cells. My serum free light chains at diagnosis showed lambda at 152 mg/l with a ratio of 0.05. My serum PP was 6 g/l.

I live in the UK and was started on 6 cycles of Cyclophosphamide, Dexamethasone and thalidiomide. I was very fortunate to achieve a complete response after 2 cycles. I remain in complete response. My serum free light chains are tested every month and they remain in normal range with a normal ratio. A bone marrow biopsy in April 2012 showed a normal result. As such, a cytogenetic test was unable to yield any information about chromosomal abnormalities. Such testing was not carried out at diagnosis as this is not routinely done in the UK.

An SCT was delayed because the amyloid situation put me at a higher risk. I suffer from proteinuria, but my kidney function is normal. I had a stem cell harvest in June, which yielded enough stem cells for just one transplant. I did not have chemo priming for the harvest (my request), just GCSF injections and then one shot of mobozil(?), when the first day's harvest yielded a rather pathetic amount! Two sessions on the apheresis machine was just enough for one transplant's worth. I have been pencilled in for transplant in November

Here's the thing - I really don't want a transplant and although I know that nobody is forcing me to do it, I feel pressured by my doctors that this is the right course of action to achieve a lasting remission. However, a STC isn't a cure and there's no guarantee that it would prolong my remission and I may feel Ill for months afterwards. What I would like to do, is delay transplant for as long as possible, until I relapse. However, my doctor isn't keen on this idea as he says my frontline treatment has an average remission of 12 months and that my myeloma clone should be making a reappearance 'about now'.

Here's the other thing - I assumed that my hospital would try me with another harvest so I would have enough stem cells on ice for 2 transplants. However, my doctor has said he won't be recommending another harvest. Firstly, newer drugs may actually be better than a second transplant. And secondly, it was implied that because of the amyloid, I was at higher risk and unlikely to be around for a second transplant!

I feel that if I have a transplant now, I'm using up all my options. I have no bone problems but do have monthly zometa. Im feeling pretty good at the moment. I am 43 year old mum with a 6 year old daughter. I think also by delaying transplant, I can delay having to tell my daughter too much who is completely unaware of my illness. Sorry for the long essay. I would really appreciate your views.

[Snip]

Re: Should I have an SCT?

by Snip on Sun Sep 16, 2012 7:53 pm

I'm no doctor, so take this as a general opinion, but I agree with you.

Given that you've had CR on the therapy to-date, that you are doing well, and that there may be outside risks involved due to your Amylidosis (sic?), compounded by the reality of only one transplant opportunity... what's the hurry?

And you are quite right: an ASCT is definitely debilitating. I am approaching the first anniversary of mine (Sept.22) and I am still in recovery.

Go with your guts on this... I think you have it right. Also, you might want to consider a second opinion (tho, being Canadian myself, I understand the difficulty of getting one in our medicare systems)

[GeorgeLJurak]

Re: Should I have an SCT?

by GeorgeLJurak on Mon Sep 17, 2012 12:59 pm

Alice, all Im can say is that, according to everything Im have read on the subject, Getting a ASCT what you shoulld do now to prolong your life. You may go into bad relapse and be unable to get it and again according to what I have read, if you wait until relapse the Progressive Free Survival declines.
I had a ASCT and it is not fun and I am still in recovery after 9 months, but I think thta was the way to go. I agree with your doctor.
Best of Luck and God Bless

[janner]

Re: Should I have an SCT?

by janner on Mon Sep 17, 2012 7:14 pm

Hi Alice,
I was diagnosed at age 47 with IGA Myeloma and Amyloid kidney (with 30% kidney function left ) , in January 2000. At that time SCT was the way to go. I had 6 months of one week each month in the hospital for chemo (Cytoxan, Vincrisitne, Adriamycin, and Dexamethasone), then 3 weeks in hospital for the harvest, then another 3 weeks in Sept. 2000 in the hospital for the transplant. Recovery took many months, and I did have to leave work and go on disability. I had a good complete remission for 4 years, until the amyloid started acting up in 2004. The treatment for that is also SCT, so that year, I had my second transplant (minus the many month chemo prep). I have been in remission ever since.......it's been 12 years now since diagnosis and I am doing well. My kidney function has improved to 45%. I am still unable to work as fatigue has been a long-lasting side effect, but I generally feel well and can manage my life as long as I don't overdo.
The novel drugs were not available at that time, so I can't speak to that issue, but I wanted you to know a story of successful SCT, especially involving the amyloid, since that is not very common. I had 2 successful transplants, and my dr. told me it was possible to have a third if I ever needed to.

Best of luck to you - stay positive, gather all of the available info, and make the best possible decision for your specific circumstance. There are a lot of us out here rooting for you !!!

[Peta Pan]

Re: Should I have an SCT?

by Peta Pan on Tue Sep 18, 2012 10:52 am

Hi there.

I had a transplant 14 months ago (I am now 69 plus) and from a few weeks after I was able to do most things - such as walk 5 to 6 miles with a group most weeks, drive 500 miles to Scotland, sail when the weather and other commitments allow and generally have a pretty active life. I would say that my energy is pretty well what it used to be most of the time. I just have to try not to over do it as it then takes a couple of days to recover.

I wish you all the very best. Sadly we aren't told enough when growing up that life can be tough!

Anna

[Alice]

Re: Should I have an SCT?

by Alice on Tue Sep 18, 2012 12:00 pm

Hi Snip, George, Janner and Anna, many thanks for all your replies - an even spread of opinions! Janner - I was amazed and heartened to read your story - wow! That gives me great hope, although I won't have enough stem cells to do a second or third transplant George, some days, I do feel like I should just go ahead with it and get it over with, but Snip, I'm so glad you agreed with me. Anna - thanks for your suggestion - I think I may well do this.

I'm due at the National Amyloidosis Centre at the Royal Free Hospital in London in October so i'll see what happens then. I have a scan every six months to assess the amyloid load. When I was first diagnosed, I had a 'large' total amyloid load. Six months later, just as I finished CTD, there was no change. At my next appointment, which was in March of this year, the scan showed some regression and I was told I was almost at the level of a ''moderate' total load. if I am fortunate to be in remission still by October, I might ask the Amyloid Centre what their view is on delaying the transplant for a few more months until after Christmas. They do tend to be rather more upbeat and positive than my myeloma doctor although I appreciate that my myeloma doctor is probably guided by his experience of the many myeloma patients that walk through his door.

Thanks again everyone!
Alice x

[Soeren, DK]

Re: Should I have an SCT?

by Soeren, DK on Fri Sep 21, 2012 6:27 am

Hi Alice,
a difficult decision to make. I was 71 years when diagnosed with IgA multiple myeloma and 80% bonemarrow involvment. First cure was MPT (thalidomide) and no succes, so after one month I turned over to Velcade/Dex. and after 14 times of infusions I was in CR and it is still the situation after 16 months. I thanked: No! to ASCT and I do not regret, but my is very much connected to my age. This just to state that the new drugs, ending with "-ib" are very effective and may outdate the ASCT one day. I hope you will make the right choise and have a long time in the "club".
Yours Soeren

[mso]

Re: Should I have an SCT?

by mso on Fri Sep 21, 2012 4:33 pm

I was discharged from the hospital on Wednesday, day +11 following my SCT. For me i found being in the hospital for 14 days may have been the worst part of the experience. Overall I had maybe 3 days of intense diarrieha. The nurses controled the nausea really well with different meds. I now have some bone pain from the Nueprogen shots, that I'm hoping goes away soon. I have to drive to the Infusion Center for hopefully just the next week for micafungion infusion. I feel pretty good walking up to 3 miles a day already. I have slight nausea but feel better when I eat. I lost 8 lbs which is alot for me as I weigh 110. My numbers are recovering won't know M count etc for awhile. I went into this in good physical condition as I'm a swimmer and cyclist which I believe did help me through the process and now the recovery. Only you can make the decision, talk to your doctor and family.