Hi,
This may have been covered before, but can anyone tell me how long after the stem cell transplant did they receive the follow up / maintenance treatment?
I had my stem cell transplant in mid February, came out of hospital mid March, had the next 2 consultant apps with the same hospital and now have been referred back to the original hospital of diagnosis.
As I had a huge peripheral neuropathy problem prior to the transplant due to Velcade / dex, the consultant has recommended Interferon for my follow up, but stated that the ongoing consultant does not have to use it.
I have had to wait until July 31 for my next appointment and, in the last 3 weeks, I have had a urine infection, a cold, a sore throat and my vision (coupled with the PN I am still battling with in my feet) is getting worse.
Have I had to wait too long?
Thanks.
Forums
Re: How long after your SCT did you start maintenance?
Hi,
At SCCA they checked my M-spike, etc. at 100 days post transplant, and since I had no decrease in the myeloma, my doc started Revlimid maintenance immediately. It may depend on where your numbers are now. You should be able to get an earlier appointment, I would think, especially with the problems you describe. 'Be your own advocate' is our mantra. And if you don't feel you are in the care of a myeloma expert at a cancer center, then you would probably do well to find one.
All the best to you,
E
At SCCA they checked my M-spike, etc. at 100 days post transplant, and since I had no decrease in the myeloma, my doc started Revlimid maintenance immediately. It may depend on where your numbers are now. You should be able to get an earlier appointment, I would think, especially with the problems you describe. 'Be your own advocate' is our mantra. And if you don't feel you are in the care of a myeloma expert at a cancer center, then you would probably do well to find one.
All the best to you,
E
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alaska49
Re: How long after your SCT did you start maintenance?
I started 10 mg of Revlimid after my auto SCT. As far as I know, Revlimid is recommended as maintenance therapy 4-6 months after transplant. Clinical trials that I have seen shows that maintenance therapy after auto SCT doubles progression free survival and overall survival as compared to a placebo. Also, the dosage should be either 10 or 15 or 25 mg because 5 mg or less showed no better results than a placebo.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: How long after your SCT did you start maintenance?
I started on Revlimid (10mg/day) and dexamethasone (8mg/week) maintenance 126 days after my SCT. I was in complete remission before and after the transplant.
My transplant doctor wanted me to take a wait and see approach and not do maintenance, but my oncologist said that he usually treats most of his SCT patients with maintenance treatments. So the decision was up to me, whether to do maintenance or not.
About that time there were a couple of articles about studies showing a benefit (longer progression free survival and longer overall survival) in doing maintenance treatments, so that's what I based my decision on (to go ahead and do the maintenance treatments).
As to the number of days after my SCT when I started the maintenance treatments, that seemed to be more of a function of when I saw my oncologist for the first time after my transplant. In other words, there was no previous plan as to when I would start. It just sort of worked out that way.
My transplant doctor wanted me to take a wait and see approach and not do maintenance, but my oncologist said that he usually treats most of his SCT patients with maintenance treatments. So the decision was up to me, whether to do maintenance or not.
About that time there were a couple of articles about studies showing a benefit (longer progression free survival and longer overall survival) in doing maintenance treatments, so that's what I based my decision on (to go ahead and do the maintenance treatments).
As to the number of days after my SCT when I started the maintenance treatments, that seemed to be more of a function of when I saw my oncologist for the first time after my transplant. In other words, there was no previous plan as to when I would start. It just sort of worked out that way.
Last edited by DallasGG on Sun Jul 20, 2014 6:31 pm, edited 1 time in total.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: How long after your SCT did you start maintenance?
6 months after my ASCT.
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lattecat - When were you/they diagnosed?: 2010
- Age at diagnosis: 54
Re: How long after your SCT did you start maintenance?
I had 2 stem cell transplants in 2010. Did 2 years of Zometa every 3 months, 15 minute infusion at local hospital
Started Cymbalta 18 months ago for peripheral nueropathy. It works great. No other meds other than Valtrex (valacyclovir), cause I got shingles 7 months after second transplant.
Stay strong.
Started Cymbalta 18 months ago for peripheral nueropathy. It works great. No other meds other than Valtrex (valacyclovir), cause I got shingles 7 months after second transplant.
Stay strong.
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Gilbert Siegel
Re: How long after your SCT did you start maintenance?
Started 10 mg. Revlimid maintenance 2 months after transplant.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: How long after your SCT did you start maintenance?
Many thanks to everyone for replying. At least I don't feel I have waited too long now.
I live in Europe so we are a little different from you. I am not sure if I have the right to move to another consultant. They are all haematologists, not oncologists. So far I have been completely satisfied with my treatment, but I am not sure if the ongoing maintenance lady is the right one for me. My translator will put that right and take no prisoners, believe me.
I will post more when I have next seen her.
Thanks again, take care people
I live in Europe so we are a little different from you. I am not sure if I have the right to move to another consultant. They are all haematologists, not oncologists. So far I have been completely satisfied with my treatment, but I am not sure if the ongoing maintenance lady is the right one for me. My translator will put that right and take no prisoners, believe me.
I will post more when I have next seen her.
Thanks again, take care people
Re: How long after your SCT did you start maintenance?
I started consolidation therapy (2 cycles of RVD) at Day +90. Then Revimid maintenance therapy immediately after the consolidation therapy. Started with 10mg for 3 months and then 15mg since then. Also doing monthly Zometa, which re-started at Day +90, and monthly pentamidine (to prevent a strain of pneumonia), which started at Day +60 if I recall correctly. I'm now into my 11th 4-week cycle of the maintenance therapy.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How long after your SCT did you start maintenance?
It was between 2 and 3 months for me.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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