Need some advice. We are starting to run out of options.
Ian had so far 2 induction therapies. No breaks at all. CTD (cyclophosphamide + thalidomide + dexamethasone) & VCD (Velcade + cyclophosphamide + dexamethasone) and autologous stem cell transplant (ASCT) at the start of January, which resulted in normalised light chains (kappa) (Ian has light chain multiple myeloma) only for a few weeks. Now the count, the second reading after transplant, is already climbing. Around 50 kappa ml/L.
Nothing so far was sustainable. Not the treatment, not even a SCT. We have collected enough in December 2013 for 2 transplants and have some stem cells stored. We are getting desperate as time is running out, and we are running out of options.
Please help.
Is an allo a good idea for Ian? Or RIC (reduced intensity conditioning)?
Though FISH test didn't show massive genetic changes (only IGH rearranged), this disease never stops growing, always on the move even when he was on chemo, after few months kappa was climbing.
Any advice is welcomed (excellent clinics specialising in allo or immunotherapy treatments?).
Thanking you kindly. Joanna. Me and Ian live in the UK but looking at U.S. treatment.
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Relapse 4 weeks after stem cell transplant - what to do?
Hi Johanna, Hopefully someone more knowledgeable will post to you, but I wondered if your husband has a chance to try Revlimid, Pomalyst, or any of the other new treatments. Some might be on a clinical trial basis. Can't comment on 'allos' though.
Pomalyst has been approved in the European Union, and I presume that Revlimid might be an option. Are you consulting with a multiple myeloma specialist?
I know that others on this forum are from the UK, and maybe they would have some ideas for you.
Best wishes!
Pomalyst has been approved in the European Union, and I presume that Revlimid might be an option. Are you consulting with a multiple myeloma specialist?
I know that others on this forum are from the UK, and maybe they would have some ideas for you.
Best wishes!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Relapse 4 weeks after stem cell transplant - what to do?
Hi- It sounds as if you still have some drugs to try yet that have shown good results. Look into Revlimid (lenalidamide); Kyprolis (carfilzomib); and Pomalyst (pomalidomide) all in combinations with dexamethasone and each other.
Also, I'd be sure to get second opinions from myeloma specialists ... ask for a "hematologist/oncologist" to get a guy who understands not only cancer generally, but blood cancers in particular.
My ASCT did not reduce my myeloma, but maintenance with Revlimid only dropped it 90% and I have been at a low, stable level for over a year so far.
Good luck!
Eric
Also, I'd be sure to get second opinions from myeloma specialists ... ask for a "hematologist/oncologist" to get a guy who understands not only cancer generally, but blood cancers in particular.
My ASCT did not reduce my myeloma, but maintenance with Revlimid only dropped it 90% and I have been at a low, stable level for over a year so far.
Good luck!
Eric
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Juneau Boy
Re: Relapse 4 weeks after stem cell transplant - what to do?
Hi Joanna,
Ask about an allo for Ian - it is another option. At the myeloma clinic I attend in Melbourne they are now offering patients who are high risk or young - induction therapy, auto SCT, followed by an allo SCT.
Hope you can find a suitable treatment,
Libby
Ask about an allo for Ian - it is another option. At the myeloma clinic I attend in Melbourne they are now offering patients who are high risk or young - induction therapy, auto SCT, followed by an allo SCT.
Hope you can find a suitable treatment,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Relapse 4 weeks after stem cell transplant - what to do?
Thank you for your comments...
Unfortunately only lenalidomide is available here, as far as we know, in trial form as well. Not very keen on trial usage of the drug, no control of the dosage, computer decides the amount for you.
Don't think Pomalyst or Kyprolis are used.
Libby, thank you for you post about allo. Can you send me a link with the clinic you go to in Melbourne? Would like to do some background research on it.
It's very hard for us to leave at the moment, especially when we haven't decided yet which is the best direction to take. Plenty work to come yet. So much to do, so little time to do it.
Johanna
Unfortunately only lenalidomide is available here, as far as we know, in trial form as well. Not very keen on trial usage of the drug, no control of the dosage, computer decides the amount for you.
Don't think Pomalyst or Kyprolis are used.
Libby, thank you for you post about allo. Can you send me a link with the clinic you go to in Melbourne? Would like to do some background research on it.
It's very hard for us to leave at the moment, especially when we haven't decided yet which is the best direction to take. Plenty work to come yet. So much to do, so little time to do it.
Johanna
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Relapse 4 weeks after stem cell transplant - what to do?
Hi Johanna,
Here is a link to the clinic at the Alfred Hospital in Melbourne (I think there is an Alfred hospital in Sydney): http://www.alfredhealth.org.au/haematology/
The head of the Department is Prof. Andrew Spencer. I originally saw him & for the past 2 1/2 years have seen Trish Walker.
Have you read Pat's new column? It's worth a read.
All the best,
Libby
Here is a link to the clinic at the Alfred Hospital in Melbourne (I think there is an Alfred hospital in Sydney): http://www.alfredhealth.org.au/haematology/
The head of the Department is Prof. Andrew Spencer. I originally saw him & for the past 2 1/2 years have seen Trish Walker.
Have you read Pat's new column? It's worth a read.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Relapse 4 weeks after stem cell transplant - what to do?
Libby, thank you so much on your input ! Great to hear from people who have had allos, and are doing well. I hope your new immune system is still doing its job, keeping you myeloma under control.
We are trying at the moment to decide between allo & Total Therapy (Bart Barlogie methods). Given that his therapies are quite radical, with excessive toxicity attached to the treatments he gives, I tend to go with the allo treatment.
Libby, If you don't mind I have a few more questions for you:
How many HLA proteins you had matched with the donor ? I read 6 is ok, but some doctors would rather have 10 out of 10.
Will you be on immunosuppressors for life ?
How was your journey in general ? Any life threatening situations at any point ? Or just minor incidents?
Though I can only imagine it, an allo is not a walk in the park, but it gives us a chance to a new life, disease free hopefully for as long as possible.
Will check the hospital out !
We are trying at the moment to decide between allo & Total Therapy (Bart Barlogie methods). Given that his therapies are quite radical, with excessive toxicity attached to the treatments he gives, I tend to go with the allo treatment.
Libby, If you don't mind I have a few more questions for you:
How many HLA proteins you had matched with the donor ? I read 6 is ok, but some doctors would rather have 10 out of 10.
Will you be on immunosuppressors for life ?
How was your journey in general ? Any life threatening situations at any point ? Or just minor incidents?
Though I can only imagine it, an allo is not a walk in the park, but it gives us a chance to a new life, disease free hopefully for as long as possible.
Will check the hospital out !
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Relapse 4 weeks after stem cell transplant - what to do?
Hello Johanna,
I am a little surprised that Ian is considered to be relapsing based on the testing you have presented. It sounds like his serum kappa free light chains are 50mg/L. This is not a markedly high level. Generally, assessment of the effect of a stem cell transplant is done 90-100 days after a transplant. Have his myeloma doctors declared the transplant a failure ? I would think they would recommend waiting and checking his status with a bone marrow biopsy and labs at the 3 month post-transplant point.
You have an excellent medical system in the UK. The team that leads all of the myeloma research studies in the UK (the Myeloma Research Council, or MRC) is highly regarded. I would strongly consider participating in the Revlimid study there. Revlimid is very expensive. In the US the drug is (roughly) $100,000 per year. This is not an expense that many can afford. I would take advantage of the research trials available in the UK. These may give Ian access to many new drugs.
As far as an allogeneic stem cell transplant goes ... It is an important option to consider. Allo transplantation is not a standard of care treatment for multiple myeloma patients. It is generally offered only in the setting of a research trial. There are some indications that allo transplantation can offer long disease-free remissions for some patients, and perhaps even a cure. The major downside of allo transplantation is graft versus host disease and a high early transplant-related death rate that is much higher than for autologous stem cell transplantation.
There is a nice discussion about allogeneic transplantation at the following link to a 2011 newsletter from the International Myeloma Foundation (see page 12).
http://myeloma.org/pdfs/MT808_d2web.pdf
Thank you for reaching out to the Myeloma Beacon and sharing your questions with our readers.
I am a little surprised that Ian is considered to be relapsing based on the testing you have presented. It sounds like his serum kappa free light chains are 50mg/L. This is not a markedly high level. Generally, assessment of the effect of a stem cell transplant is done 90-100 days after a transplant. Have his myeloma doctors declared the transplant a failure ? I would think they would recommend waiting and checking his status with a bone marrow biopsy and labs at the 3 month post-transplant point.
You have an excellent medical system in the UK. The team that leads all of the myeloma research studies in the UK (the Myeloma Research Council, or MRC) is highly regarded. I would strongly consider participating in the Revlimid study there. Revlimid is very expensive. In the US the drug is (roughly) $100,000 per year. This is not an expense that many can afford. I would take advantage of the research trials available in the UK. These may give Ian access to many new drugs.
As far as an allogeneic stem cell transplant goes ... It is an important option to consider. Allo transplantation is not a standard of care treatment for multiple myeloma patients. It is generally offered only in the setting of a research trial. There are some indications that allo transplantation can offer long disease-free remissions for some patients, and perhaps even a cure. The major downside of allo transplantation is graft versus host disease and a high early transplant-related death rate that is much higher than for autologous stem cell transplantation.
There is a nice discussion about allogeneic transplantation at the following link to a 2011 newsletter from the International Myeloma Foundation (see page 12).
http://myeloma.org/pdfs/MT808_d2web.pdf
Thank you for reaching out to the Myeloma Beacon and sharing your questions with our readers.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
8 posts
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