Hello everyone. I am looking for any information or advice that anyone can offer, so please fire away. My Mom is terribly ill from multiple myeloma. She was diagnosed 3 years ago, and has been through various regimens, including:
Velcade
Stem cell transplant (failed)
Revlimid
Velcade again
pomalidomide
Mom has been getting sicker lately, and we learned today that she is no longer responding to the pomalidomide. She was told that she could try a drug called bendamustine, at a cost of about $4000 a month, and which is not covered where we live in B.C. Canada. So, this will be out of pocket, and I don't know how long we can afford to pay for it.
As you can see, we are desperate here. Is there anything more than this, or are we at the end times? I have read about some private clinical trials of "killer cells" at various multiple myeloma institutes, but am not sure what to make of this.
Naturally, we don't want our Mom to die, and it is tough to watch her deteriorate. Any thoughts, advice, or suggestions are appreciated. Dan.
Forums
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Danilko - Name: Dan
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 2011
- Age at diagnosis: 66
Re: Advanced myeloma patient looking for treatment options
Danilko,
So sorry to hear about your Mom.
It wasn't clear from you summary of treatments if she did any of these in combination (e.g. Velcade + Revlimid + Dex), or if she just did (Velcade + Dex) or (Revlimid + Dex) separately or ??
Also, have you looked into Kyprolis (carfilzomib)?
There are also trials in the USA the could be considered that could involved some of the new approaches with some of the new monoclonal antibody approaches, other drugs, as well as the combination of Bendamustine + Pomalyst in relapsed patients. While travel would be involved with such a trial, the cost of the drugs would be free under a trial setting.
Depending on your Mom's financial situation, she may also qualify for financial assistance from the drug manufacturers themselves. In the case Bendamustine (Treanda), you would need to contact Teva.
So sorry to hear about your Mom.
It wasn't clear from you summary of treatments if she did any of these in combination (e.g. Velcade + Revlimid + Dex), or if she just did (Velcade + Dex) or (Revlimid + Dex) separately or ??
Also, have you looked into Kyprolis (carfilzomib)?
There are also trials in the USA the could be considered that could involved some of the new approaches with some of the new monoclonal antibody approaches, other drugs, as well as the combination of Bendamustine + Pomalyst in relapsed patients. While travel would be involved with such a trial, the cost of the drugs would be free under a trial setting.
Depending on your Mom's financial situation, she may also qualify for financial assistance from the drug manufacturers themselves. In the case Bendamustine (Treanda), you would need to contact Teva.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Advanced myeloma patient looking for treatment options
Thank-you for your reply. Every drug that she has been on, has been taken in concert with Dex. There have been no "cocktail" approaches used, as our system will only pay for one at a time.
Would you have any idea why my thread got moved, when there are so many similar ones in the multiple myeloma thread that weren't shuffled off? I suspect this thread will get little notice here.
I will start some reading about the drugs you referred to, unless you can offer any more here. Thank-you again.
Would you have any idea why my thread got moved, when there are so many similar ones in the multiple myeloma thread that weren't shuffled off? I suspect this thread will get little notice here.
I will start some reading about the drugs you referred to, unless you can offer any more here. Thank-you again.
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Danilko - Name: Dan
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 2011
- Age at diagnosis: 66
Re: Advanced myeloma patient looking for treatment options
Hi Dan,
We're sorry to hear about your mother. We hope she and her doctors are able to find a suitable treatment option for her.
Since your question is about treatment options, it was moved to that part of the forum. The topic description was also edited to help people scanning through the discussion topics -- either in the Recent Topics area, or in the Treatments & Side Effects part of the forum itself -- better understand what the question is about.
Best wishes to you and your family.
We're sorry to hear about your mother. We hope she and her doctors are able to find a suitable treatment option for her.
Since your question is about treatment options, it was moved to that part of the forum. The topic description was also edited to help people scanning through the discussion topics -- either in the Recent Topics area, or in the Treatments & Side Effects part of the forum itself -- better understand what the question is about.
Best wishes to you and your family.
Re: Advanced myeloma patient looking for treatment options
Dan, please contact Myeloma Canada with your concerns about your mother's treatments. They work on these issues on a national issues. I sent them a 'cut and paste' of your forum questions and replies. Take good care of yourself and your mother too. I hope you can turn this situation around...best wishes, Nancy Shamanna
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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: Advanced myeloma patient looking for treatment options
Thank you everyone for your thoughts and replies.
The update is this: We are in a holding pattern, while my Mom's doctor looks for options. He is trying to see if he can get her on paid Velcade for a third time to mix as a cocktail with her pomalidomide (Pomalyst), but that does not look promising.
The other option mentioned is to increase the amount of dex with the pomalidomide, but Mom reacts badly to dex. She is expected to be cut off of pomalidomide in the next month if there is no improvement.
Other than that, it looks like she may need to make an appeal on compassionate grounds to the maker of bendamustine [Treanda] to buy it at $8000 to $10,000 per month and pay out of pocket. At that rate, she will only be able to afford about 2 months worth.
It sounds like we are at the end of the road, and she has been suffering terribly with the uncertainty.
Nancy, thank you for your comments above. Thoughts anyone? Does this make sense at all?
Dan.
The update is this: We are in a holding pattern, while my Mom's doctor looks for options. He is trying to see if he can get her on paid Velcade for a third time to mix as a cocktail with her pomalidomide (Pomalyst), but that does not look promising.
The other option mentioned is to increase the amount of dex with the pomalidomide, but Mom reacts badly to dex. She is expected to be cut off of pomalidomide in the next month if there is no improvement.
Other than that, it looks like she may need to make an appeal on compassionate grounds to the maker of bendamustine [Treanda] to buy it at $8000 to $10,000 per month and pay out of pocket. At that rate, she will only be able to afford about 2 months worth.
It sounds like we are at the end of the road, and she has been suffering terribly with the uncertainty.
Nancy, thank you for your comments above. Thoughts anyone? Does this make sense at all?
Dan.
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Danilko - Name: Dan
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 2011
- Age at diagnosis: 66
Re: Advanced myeloma patient looking for treatment options
Since your Mom doesn't react well to dex, have you considered looking into prednisone as an alternative steroid? Many older multiple myeloma patients are put on prednisone since they tend to tolerate it better than dex.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Advanced myeloma patient looking for treatment options
Hi Dan,
Have you looked on clinicaltrials.gov for clinical trial options? You are in BC and Vancouver General does a lot of clinical trials so this might be a good place to ask about studies. I know there is a clinical trial starting soon for patients who did not respond to pomalidomide [Pomalyst], so that might be an option for your mother.
Bob
Have you looked on clinicaltrials.gov for clinical trial options? You are in BC and Vancouver General does a lot of clinical trials so this might be a good place to ask about studies. I know there is a clinical trial starting soon for patients who did not respond to pomalidomide [Pomalyst], so that might be an option for your mother.
Bob
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WashigtonBob
Re: Advanced myeloma patient looking for treatment options
Hi everybody, I join to this topic as I have a similar problem as Danilko.
My dad (67 years old) is affected by multiple myeloma since 1999 and he is now in a very advanced phase and I'm terrible worried and distressed for his life. I specify that we live in Italy.
Something about his history. After an autologous stem cell transplant in 2000 he only went in partial remission. He got cell for 2 transplants but he is not candidate for a second transplant because of a lung (pulmonary) fibrosis. Two years later transplant, in 2002 myeloma appeared again and since there he was treated with the following therapies:
- Interferon for a short period as he was not tolerant to interferon.
- Thalidomide in association with dexamethasone from 2002 since 2009
- 2009 he started with bortezomib (Velcade®) in association with dexamethasone until 2011.
- From September 2011 to January 2014 he was treated with lenalidomide (Revlimid) in association with dexamethasone.
Since February 2014 he started a one cycle of melphalan (Alkeran®) in association with dexamethasone but with no results, soon after he was treated with bendamustine [Treanda] in association with dexamethasone, but also this therapy just failed and total protein a raise of also 6% arriving at a value of 44%.
Just few days ago he did a new therapy with Caelyx [Doxil] in association with endoxan and dexamethasone and we are waiting for results on 6th May.
If also this therapy would fail, are there any other therapy available or he is arrived at the end of his life as he doesn't answer to treatment?
I heard about some therapies with filanesib [ARRY-520] and Kyprolis (carfilzomib), but I'm not sure if they are available in Italy at the moment. Does anybody knows their effectiveness in relapsed and not responding multiple myeloma (not candidate for cell transplant). If in Italy is not available, do you know a way to get these medicine from abroad (US or Canada or somewhere else)?
Thanks for your answer and help
Carmen
My dad (67 years old) is affected by multiple myeloma since 1999 and he is now in a very advanced phase and I'm terrible worried and distressed for his life. I specify that we live in Italy.
Something about his history. After an autologous stem cell transplant in 2000 he only went in partial remission. He got cell for 2 transplants but he is not candidate for a second transplant because of a lung (pulmonary) fibrosis. Two years later transplant, in 2002 myeloma appeared again and since there he was treated with the following therapies:
- Interferon for a short period as he was not tolerant to interferon.
- Thalidomide in association with dexamethasone from 2002 since 2009
- 2009 he started with bortezomib (Velcade®) in association with dexamethasone until 2011.
- From September 2011 to January 2014 he was treated with lenalidomide (Revlimid) in association with dexamethasone.
Since February 2014 he started a one cycle of melphalan (Alkeran®) in association with dexamethasone but with no results, soon after he was treated with bendamustine [Treanda] in association with dexamethasone, but also this therapy just failed and total protein a raise of also 6% arriving at a value of 44%.
Just few days ago he did a new therapy with Caelyx [Doxil] in association with endoxan and dexamethasone and we are waiting for results on 6th May.
If also this therapy would fail, are there any other therapy available or he is arrived at the end of his life as he doesn't answer to treatment?
I heard about some therapies with filanesib [ARRY-520] and Kyprolis (carfilzomib), but I'm not sure if they are available in Italy at the moment. Does anybody knows their effectiveness in relapsed and not responding multiple myeloma (not candidate for cell transplant). If in Italy is not available, do you know a way to get these medicine from abroad (US or Canada or somewhere else)?
Thanks for your answer and help
Carmen
Re: Advanced myeloma patient looking for treatment options
Hello Carmen,
We are sorry to hear about the challenging situation your father is in.
Kyprolis is not yet approved in Europe, nor is filanesib (ARRY-520). However, a drug similar to thalidomide and Revlimid (lenalidomide) -- Pomalyst (Imnovid in Europe, generic name: pomalidomide) -- is now approved in Europe, although it may not be widely available in Italy due to pricing and reimbursement issues.
You can find a list of potential new therapies for myeloma that are currently under investigation at the top of the Myeloma Beacon's news page,
https://myelomabeacon.org/news/
If you click on the name of any of the drugs, you will be taken to articles in which they are discussed.
One of the best options for your father may be a clinical trial testing one of the drugs being developed for myeloma. You can find a list of open clinical trials for myeloma in Italy at this link:
http://clinicaltrials.gov/ct2/results?recr=Open&intr=myeloma&cntry1=EU%3AIT
(You will have to read the descriptions carefully to see which are for relapsed patients.)
We'll let others here in the forum chime in with recommendations for potential new therapies that you may particularly want to consider.
We are sorry to hear about the challenging situation your father is in.
Kyprolis is not yet approved in Europe, nor is filanesib (ARRY-520). However, a drug similar to thalidomide and Revlimid (lenalidomide) -- Pomalyst (Imnovid in Europe, generic name: pomalidomide) -- is now approved in Europe, although it may not be widely available in Italy due to pricing and reimbursement issues.
You can find a list of potential new therapies for myeloma that are currently under investigation at the top of the Myeloma Beacon's news page,
https://myelomabeacon.org/news/
If you click on the name of any of the drugs, you will be taken to articles in which they are discussed.
One of the best options for your father may be a clinical trial testing one of the drugs being developed for myeloma. You can find a list of open clinical trials for myeloma in Italy at this link:
http://clinicaltrials.gov/ct2/results?recr=Open&intr=myeloma&cntry1=EU%3AIT
(You will have to read the descriptions carefully to see which are for relapsed patients.)
We'll let others here in the forum chime in with recommendations for potential new therapies that you may particularly want to consider.
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