Dear all.
My father was diagnosed a primary plasma cell leukemia in november last year.
We live in France. So I guess there might be some differences in treatment protocols and availibility of therapeutics compared to what you guys have in the US.
However this forum is one of the best I could find and it would be fantastic for me to get whatsoever feedback from your community.
My dad went through 4 cycles of Velcade in the scope of what is called induction chemo, I guess. The therapy produced good results and the side effects were limited (some kind of hypersensitivity at the top of his fingers and feet though)
Next step according to the protocol was SCT. On march 13, after given endoxan, he started daily neupogen injections. objective was to proceed with SCT around march 20.
We were told on the 20 that the level of circulating stem cells was too low to proceed as planned. Moreover they told us also that the level was too low to consider mozobil injection.
Given that none of my father sibling is HLA compatible, treatment with melphalan folowed by autologous transplant was a key therapeutic option to help my father (at least in my understanding). So I am obviously worried now.
The doc told us that we will now stop treatment for 2 weeks to give time to the bone marrow to 'recouver' somehow after an agressive treatment. The doc said that we should try again with neupogen injections in 2 weeks from now and that we might then have a chance to see more stem cells then.
Just wondering if some of you have had kind of similar experience, or just an opinion to shore.
Many thanks.
Forums
6 posts
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Re: Plasma cell leukaemia ahead of SCT
Hi Ed-33,
Sorry to hear about the problems your father has been having. Here are a few quick thoughts.
First, some patients here in the U.S. have reported success which what is known as "hyperbaric oxygen therapy" to help with stem cell mobilization. Here is an article about it:
https://myelomabeacon.org/opinion/2011/01/11/stem-cell-collection-and-hyperbaric-oxygen-treatment/
I would imagine there are hyperbaric oxygen treatment centers in France (or other countries nearby) where your father could go.
Also, I found that there is a drug different from Mozobil that is being tested for stem cell mobilization. Here is an article about it:
https://myelomabeacon.org/news/2009/09/30/new-drug-enters-phase-2-clinical-trial-for-stem-cell-collection-for-blood-cancer-patients/
I have not checked, however, to see whether the drug is still being developed. The trial that was testing it may not have been successful. I don't know.
There are also several older drugs, such as etoposide and cyclophosphamide (I believe) which can be used for stem cell mobilization. You should check on that. In fact, there is quite a bit of research I think that has been done on different, more effective, ways to mobilize stem cells.
You discussed your father having a sibling who is HLA compatible. Does that mean that an allogeneic transplant is being consider as an alternative to an autologous transplant?
Good luck to you and your father.
Sorry to hear about the problems your father has been having. Here are a few quick thoughts.
First, some patients here in the U.S. have reported success which what is known as "hyperbaric oxygen therapy" to help with stem cell mobilization. Here is an article about it:
https://myelomabeacon.org/opinion/2011/01/11/stem-cell-collection-and-hyperbaric-oxygen-treatment/
I would imagine there are hyperbaric oxygen treatment centers in France (or other countries nearby) where your father could go.
Also, I found that there is a drug different from Mozobil that is being tested for stem cell mobilization. Here is an article about it:
https://myelomabeacon.org/news/2009/09/30/new-drug-enters-phase-2-clinical-trial-for-stem-cell-collection-for-blood-cancer-patients/
I have not checked, however, to see whether the drug is still being developed. The trial that was testing it may not have been successful. I don't know.
There are also several older drugs, such as etoposide and cyclophosphamide (I believe) which can be used for stem cell mobilization. You should check on that. In fact, there is quite a bit of research I think that has been done on different, more effective, ways to mobilize stem cells.
You discussed your father having a sibling who is HLA compatible. Does that mean that an allogeneic transplant is being consider as an alternative to an autologous transplant?
Good luck to you and your father.
-
JimNY
Re: Plasma cell leukaemia ahead of SCT
Dear JimNY,
Many thanks for your answer.
I'll definitely dig into the information you were kind enough to provide me with.
To answer to your question, unfortunately no siblings is HLA compatible. The doc think about an allogenic transplant as an alternative to autologous transplant (in case the second attempt in 2 weeks does not work - on that point I got the feeling that the doc was not that optimistic but still think there is a chance) because it seems that there is a donor who has been identified in the data base. But the doc must check if this person is still available.
Quite Franky I am a little anxious about my dad staying without therapy in the next two weeks. On one side I understand the need to 'give his bone marrow a break', on the other side I fear the return of the ilness. I guess that it is worth taking the risk at this stage in order to give the autologous T a second chance.
Very gratefull to you JimNY for your answer earlier today.
Many thanks for your answer.
I'll definitely dig into the information you were kind enough to provide me with.
To answer to your question, unfortunately no siblings is HLA compatible. The doc think about an allogenic transplant as an alternative to autologous transplant (in case the second attempt in 2 weeks does not work - on that point I got the feeling that the doc was not that optimistic but still think there is a chance) because it seems that there is a donor who has been identified in the data base. But the doc must check if this person is still available.
Quite Franky I am a little anxious about my dad staying without therapy in the next two weeks. On one side I understand the need to 'give his bone marrow a break', on the other side I fear the return of the ilness. I guess that it is worth taking the risk at this stage in order to give the autologous T a second chance.
Very gratefull to you JimNY for your answer earlier today.
Re: Plasma cell leukaemia ahead of SCT
In the US (and I think in Europe), mozobil (Plerixafor) is approved for increasing stem cell yield prior to autologous transplant in multiple myeloma patients. This is a good option to ensure adequate numbers of stem cells are collected.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Plasma cell leukaemia ahead of SCT
Dear Dr Valent,
First, there are probbaly a lot of misunderstandings in my posts. Bear with me I am no MD. It is helping me a lot to get clarifications from insiders like you.
You are right to indicate that mozobil is approved in US and in EU. It was also an option for my father (We are based in France). However, as I indicated in my first post, the doc told us (at least that is what I understood) that the level of stem cells circulating in the blood after 1 week of daily neupogen injections was too low even to consider injection of mozobil.
What I got from the mechanism of actions of both neupogen and mozobil is: #1/ Neupogen as growth factor stimulates the production of stem cells. #2/ a lot of newly produced stem cells stay attached to the bone marrow and therefore do not show up in the blood stream. #3/ mozobil unbind the stem cells from the bone marrow, that’s why they show up in blood.
therefore If the bone marrow is producing very little quantity of stem cells, there will also be very little that mozobil can unbind, and very little stem cell available for collection
I think I understand that unfortunately, in the case of PCL, the bone marrow is more altered than in case of multiple myeloma, and therefore some PCL people cannot produce as much stem cells as multiple myeloma people.
Coming back to the post of JimNY,
#1/ I was very happy to read the post of Lori, especially given the stunning positive results that Hyperbaric Oxygen therapy showed on her husband's ability to produce stem cells. Unfortunately as I mention that therapy option to the doc in charge of my father, he answered that such option was not appropriate, certainly useless and that nobody was doing that here (in France). So I had to give up on that one despite the hope that I had when I first read about it.
#2/ regarding the other drug (different from Mozobil): TG-0054, which is being developed in phase II by TaiGen Biotechnology, there has been two phase II one started in Feb 2010 and was completed in Oct. 2011 another one started in Dec. 2011 and was completed in Dec. 2012. Both studies were run on a small number of patients: 19 and 12, respectively. What I don t understand is why clinicaltrials.gov still indicates that the second phase II is recruiting? Beside it seems that this drug has a the same mechanism of action as mozobil (CXCR4/SDF1 receptor complex), so why should it bring such an improvement vs. Mozobil?
I am still looking for ways to boost my dad’s ability to produce stem cells which could make him benefit from SCT. I have read that folic acid and vitamin B12 might help. I have noticed the article on meloxicam published on the myeloma beacon yesterday http://www.nature.com/nature/journal/v495/n7441/full/nature11929.html I was wondering if meloxicam is hard to get for PCL patient ? I ll try to ask doc tomorrow.
Just want to thank the Myeloma beacon team. This website is of great help.
First, there are probbaly a lot of misunderstandings in my posts. Bear with me I am no MD. It is helping me a lot to get clarifications from insiders like you.
You are right to indicate that mozobil is approved in US and in EU. It was also an option for my father (We are based in France). However, as I indicated in my first post, the doc told us (at least that is what I understood) that the level of stem cells circulating in the blood after 1 week of daily neupogen injections was too low even to consider injection of mozobil.
What I got from the mechanism of actions of both neupogen and mozobil is: #1/ Neupogen as growth factor stimulates the production of stem cells. #2/ a lot of newly produced stem cells stay attached to the bone marrow and therefore do not show up in the blood stream. #3/ mozobil unbind the stem cells from the bone marrow, that’s why they show up in blood.
therefore If the bone marrow is producing very little quantity of stem cells, there will also be very little that mozobil can unbind, and very little stem cell available for collection
I think I understand that unfortunately, in the case of PCL, the bone marrow is more altered than in case of multiple myeloma, and therefore some PCL people cannot produce as much stem cells as multiple myeloma people.
Coming back to the post of JimNY,
#1/ I was very happy to read the post of Lori, especially given the stunning positive results that Hyperbaric Oxygen therapy showed on her husband's ability to produce stem cells. Unfortunately as I mention that therapy option to the doc in charge of my father, he answered that such option was not appropriate, certainly useless and that nobody was doing that here (in France). So I had to give up on that one despite the hope that I had when I first read about it.
#2/ regarding the other drug (different from Mozobil): TG-0054, which is being developed in phase II by TaiGen Biotechnology, there has been two phase II one started in Feb 2010 and was completed in Oct. 2011 another one started in Dec. 2011 and was completed in Dec. 2012. Both studies were run on a small number of patients: 19 and 12, respectively. What I don t understand is why clinicaltrials.gov still indicates that the second phase II is recruiting? Beside it seems that this drug has a the same mechanism of action as mozobil (CXCR4/SDF1 receptor complex), so why should it bring such an improvement vs. Mozobil?
I am still looking for ways to boost my dad’s ability to produce stem cells which could make him benefit from SCT. I have read that folic acid and vitamin B12 might help. I have noticed the article on meloxicam published on the myeloma beacon yesterday http://www.nature.com/nature/journal/v495/n7441/full/nature11929.html I was wondering if meloxicam is hard to get for PCL patient ? I ll try to ask doc tomorrow.
Just want to thank the Myeloma beacon team. This website is of great help.
Re: Plasma cell leukaemia ahead of SCT
Dear all,
After a two Weeks break, the docs have Tried again the neupogen injections To get the SC.
Following the neupogen injections, they Could Collect enough for 0.5 SC transplantation.
Hence, the docs were optimistic that with a mozobil injection the folowing day, they Could get enough SC for one transplantation.
Indeed, the folowing Day the docs said they got enough for 2 transplantations!
We were all quite happy, Especially as the First attempt To Collect the SC (2weeks ago) was Totally unsuccessful.
The docs Still need to conduct some further analysis to see of the SC which have been collected are really ok for the transplantation.
In about 8 days, ic the SC are declared good, my dad will go To the Hospital To get a SCT.That should last about 3 weeks
2 to 3 months after that, if things work well, he will get an allogenic transplantation (as luckily, a donnor was found).
I have read the risks assiciated with the allogenic transplantation (in the case of my dad, the donnor is not comming from the family) and i am just wondering if potentially, performing 2SCT instead of 1 SCT + 1 Allogenic transplantation would not be better as SCT is less risky than Allo T.
Any testamony or opinion would be very much appreciated.
Good luck to every one.
After a two Weeks break, the docs have Tried again the neupogen injections To get the SC.
Following the neupogen injections, they Could Collect enough for 0.5 SC transplantation.
Hence, the docs were optimistic that with a mozobil injection the folowing day, they Could get enough SC for one transplantation.
Indeed, the folowing Day the docs said they got enough for 2 transplantations!
We were all quite happy, Especially as the First attempt To Collect the SC (2weeks ago) was Totally unsuccessful.
The docs Still need to conduct some further analysis to see of the SC which have been collected are really ok for the transplantation.
In about 8 days, ic the SC are declared good, my dad will go To the Hospital To get a SCT.That should last about 3 weeks
2 to 3 months after that, if things work well, he will get an allogenic transplantation (as luckily, a donnor was found).
I have read the risks assiciated with the allogenic transplantation (in the case of my dad, the donnor is not comming from the family) and i am just wondering if potentially, performing 2SCT instead of 1 SCT + 1 Allogenic transplantation would not be better as SCT is less risky than Allo T.
Any testamony or opinion would be very much appreciated.
Good luck to every one.
6 posts
• Page 1 of 1
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