Diagnosed in June 2014.
FISH testing done in June was polluted and could not be used.
FISH testing done again on September 22nd.
Finished three series of initial CyBorD / VCD [cyclophosphamide, Velcade, dexamethasone] (3x3 weeks) two weeks ago. On October 24, I will get high-dose cyclophosphamide followed by stem cell harvest.
I will not get the result from the FISH test before the 24th, and thereby I will start the high-dose cyclophosphamide without answers and category/risk group from the FISH test.
My question is: Could the result of the FISH test give me indications to consider not to go through with ASCT? And should I therefore insist to get the FISH result before going on with high-dose cyclophosphamide?
I am generally confident that the physicians and myeloma specialists I am seeing at the hospital and who are responsible for my treatment know what they are doing, and in general I feel that I am being treated very well at the hospital.
My only problem is that the physicians are very busy and that it is difficult to get explanations and answers to your questions.
Best regards to everybody here.
Forums
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: OK to start ASCT without knowing FISH test results?
Lev,
FIrst, I assume that you have the other test results from your BMB, right? You are only waiting on the FISH portion of the report, right?
If you are only waiting on the FISH section, I think it may be an academic question for you at this point given you already have gone through your initial therapy. The Mayo has developed their mSMART guidelines that suggest different initial therapies based on one's risk classification, which is largely based on cytogenetics.
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
But you've already gone down the initial treatment path.
If you put stock in the Mayo's approach, they also have different recommendations for different consolidation/maintenance therapies, also depending on one's risk classification. So, that might be something to consider coming out of the transplant.
But I have no idea if the Denmark medical system even considers these kinds of factors when selecting initial and consolidation/maintenance drug therapies.
As far as whether to proceed with the high dose chemo and ASCT, I don't believe there is anything that might come out of a FISH report that would suggest that you not proceed with one. But I don't know that for sure and others more qualified than me would need to comment.
FIrst, I assume that you have the other test results from your BMB, right? You are only waiting on the FISH portion of the report, right?
If you are only waiting on the FISH section, I think it may be an academic question for you at this point given you already have gone through your initial therapy. The Mayo has developed their mSMART guidelines that suggest different initial therapies based on one's risk classification, which is largely based on cytogenetics.
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
But you've already gone down the initial treatment path.
If you put stock in the Mayo's approach, they also have different recommendations for different consolidation/maintenance therapies, also depending on one's risk classification. So, that might be something to consider coming out of the transplant.
But I have no idea if the Denmark medical system even considers these kinds of factors when selecting initial and consolidation/maintenance drug therapies.
As far as whether to proceed with the high dose chemo and ASCT, I don't believe there is anything that might come out of a FISH report that would suggest that you not proceed with one. But I don't know that for sure and others more qualified than me would need to comment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: OK to start ASCT without knowing FISH test results?
Lev,
Just one thing to add to multibilly's reply. If you think of what you are considering as two distinct steps - stem cell harvesting and then stem cell transplant - I think there's no reason to postpone the stem cell collection until you get the FISH results. It's good to have the stem cells collected and ready if/when you decide to do the transplant.
In a best case scenario, you want to do the stem cell collection when you have seen progress against the myeloma during your initial (induction) therapy, but before you have gone through lots of cycles of therapy because too much chemotherapy can reduce your ability to generate the necessary stem cells during the collection phase. Three cycles of CyBorD should not put you in the "too much" category.
Just one thing to add to multibilly's reply. If you think of what you are considering as two distinct steps - stem cell harvesting and then stem cell transplant - I think there's no reason to postpone the stem cell collection until you get the FISH results. It's good to have the stem cells collected and ready if/when you decide to do the transplant.
In a best case scenario, you want to do the stem cell collection when you have seen progress against the myeloma during your initial (induction) therapy, but before you have gone through lots of cycles of therapy because too much chemotherapy can reduce your ability to generate the necessary stem cells during the collection phase. Three cycles of CyBorD should not put you in the "too much" category.
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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: OK to start ASCT without knowing FISH test results?
If you're in a remission or close to it, I wouldn't think you would want to delay the harvest.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: OK to start ASCT without knowing FISH test results?
When I had my first BMB, which was used to make the diagnosis, a FISH was not done. At that point in time, it was not known if it was myeloma so they did not order the test.
Later for my second BMB before my auto SCT, a FISH was ordered but I had completed a number of cycles on Velcade and dexamethasone, which worked really well and put me in a VGPR. The lab report came back saying there were not enough cells to do the FISH test, which I guess was a high-quality problem.
Earlier this year, I had BMB where a FISH was ordered, and this time I got results (no deficiencies found).
I cannot see any reason to delay or stop a SCT because of no FISH test results. But your doctor should be able to explain all this to you.
Later for my second BMB before my auto SCT, a FISH was ordered but I had completed a number of cycles on Velcade and dexamethasone, which worked really well and put me in a VGPR. The lab report came back saying there were not enough cells to do the FISH test, which I guess was a high-quality problem.
Earlier this year, I had BMB where a FISH was ordered, and this time I got results (no deficiencies found).
I cannot see any reason to delay or stop a SCT because of no FISH test results. But your doctor should be able to explain all this to you.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: OK to start ASCT without knowing FISH test results?
Dear Lev,
There are differences in outcome after transplant, specifically regarding the remission duration, that can be in part guided by abnormalities seen on FISH. For example, if you had high risk features like del 17p or chromosome 1q changes, than one may worry that there will be a shortening of the remission time from 2-3 years to 9-12 months. In that setting, we still recommend transplant followed by a more aggressive maintenance therapy.
So it would not change our recommendation for ASCT. However, we do discuss the relative potential decrease in benefit with patients so they are fully aware of what may happen post transplant, and some patients may not opt for a transplant in that setting.
All the best.
There are differences in outcome after transplant, specifically regarding the remission duration, that can be in part guided by abnormalities seen on FISH. For example, if you had high risk features like del 17p or chromosome 1q changes, than one may worry that there will be a shortening of the remission time from 2-3 years to 9-12 months. In that setting, we still recommend transplant followed by a more aggressive maintenance therapy.
So it would not change our recommendation for ASCT. However, we do discuss the relative potential decrease in benefit with patients so they are fully aware of what may happen post transplant, and some patients may not opt for a transplant in that setting.
All the best.
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
6 posts
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