Hello multiple myeloma community,
I have a bone marrow failure disease called red cell aplasia, as well as multiple myeloma. I do not make red cells, and therefore have been told a stem cell transplant is not an option. I'm just wondering what a person's prognosis might be just relying on chemo alone and not having a stem cell transplant?
I have been reading about immunotherapy, and am very interested in that, although it sounds as if that is only for patients with failed stem cell transplants, etc., at this time. Have any of you received immunotherapy without having a stem cell transplant?
Any info on this would be greatly appreciated,
Roxie
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Roxie - Name: Lynn S.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/13/2016
- Age at diagnosis: 58
Re: When a stem cell transplant is not an option
Hi Roxie
Many people do quite well with drug therapy and chemotherapy alone, especially given the advent of the so-called "novel agents" over the last ten years.
There has been a lot lately in myeloma news about immunotherapy. For example, Darzalex (daratumumab), was approved in the US late last year for patients who have received three previous lines of drug treatment. There is no requirement for having had a failed stem cell transplant.
But, apart from immunotherapy, there are also quite a few combinations of novel agents and novel agents combined with older chemotherapeutic agents, that many people with multiple myeloma have chosen over stem cell transplants as a treatment.
I don't think there is yet a solid consensus on which path enjoys a better prognosis -- stem cell transplants or drug therapy including novel agents -- although there have been results from some European studies that favor stem cell transplants, although the difference in overall survival is not great,
So I would say -- and please understand that my personal knowledge is limited to my own experience as a multiple myeloma patient, as I have no medical training -- that you have many non-transplant options for treating your multiple myeloma that can give you excellent results. At least this is true in the USA, Canada, and most of Western Europe.
I have not had a stem cell transplant, and also have not been treated with the newest immunotherapeutic drugs. But I have achieved a complete response on a combination of Cytoxan (a chemotherapeutic drug), Kyprolis (a proteasome inhibitor), and dexamethasone (a corticosteroid).
Do you have pure acquired red cell aplasia? I have read that this condition is thought to be an autoimmune disorder and is treated with some of the drugs that are also used for multiple myeloma (like corticosteroids).
In any case, I would say that the best thing to do is to contact a myeloma expert for advice, if you have not already done so. There are many people on this forum who may be able to give you suggestions on where to find such experts, if you post where you are located.
The very good news is that drug/chemotherapy has come a very long way in recent years, and can give you excellent results that rival stem cell transplants for multiple myeloma.
Good luck!
Many people do quite well with drug therapy and chemotherapy alone, especially given the advent of the so-called "novel agents" over the last ten years.
There has been a lot lately in myeloma news about immunotherapy. For example, Darzalex (daratumumab), was approved in the US late last year for patients who have received three previous lines of drug treatment. There is no requirement for having had a failed stem cell transplant.
But, apart from immunotherapy, there are also quite a few combinations of novel agents and novel agents combined with older chemotherapeutic agents, that many people with multiple myeloma have chosen over stem cell transplants as a treatment.
I don't think there is yet a solid consensus on which path enjoys a better prognosis -- stem cell transplants or drug therapy including novel agents -- although there have been results from some European studies that favor stem cell transplants, although the difference in overall survival is not great,
So I would say -- and please understand that my personal knowledge is limited to my own experience as a multiple myeloma patient, as I have no medical training -- that you have many non-transplant options for treating your multiple myeloma that can give you excellent results. At least this is true in the USA, Canada, and most of Western Europe.
I have not had a stem cell transplant, and also have not been treated with the newest immunotherapeutic drugs. But I have achieved a complete response on a combination of Cytoxan (a chemotherapeutic drug), Kyprolis (a proteasome inhibitor), and dexamethasone (a corticosteroid).
Do you have pure acquired red cell aplasia? I have read that this condition is thought to be an autoimmune disorder and is treated with some of the drugs that are also used for multiple myeloma (like corticosteroids).
In any case, I would say that the best thing to do is to contact a myeloma expert for advice, if you have not already done so. There are many people on this forum who may be able to give you suggestions on where to find such experts, if you post where you are located.
The very good news is that drug/chemotherapy has come a very long way in recent years, and can give you excellent results that rival stem cell transplants for multiple myeloma.
Good luck!
Last edited by MrPotatohead on Wed Jul 06, 2016 10:02 am, edited 1 time in total.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: When a stem cell transplant is not an option
I would simply add to Mr PH's comments by saying that there are quite a few folks on this forum who have chosen not to have an autologous transplant (whether it be not to use it as a front line treatment, or never to use one during the course of treatment), even though they might easily qualify for one. The advent of many new treatment agents over the past several years has really changed the game and made the choice of autologous transplant optional for transplant-eligible patients.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: When a stem cell transplant is not an option
Hi MrPotatohead,
Thanks for your reply. It is reassuring to know that people are achieving excellent results without having a stem cell transplant!
You mentioned you are in remission. Great news! Are you off all prescribed drugs at this time? If so, how long did it take for you to achieve a complete response?
Yes, I do have pure red cell aplasia, as well. I have gotten recommendations from the Mayo Clinic and Dana Farber to take Revlimid, Velcade and dexamethasone. Wow, how wonderful it would be to have the red cell aplasia taken care of with the dex! I will be starting that drug regimen in approx. 2 weeks.
Thanks again for your information. It is greatly appreciated!
Roxie
Thanks for your reply. It is reassuring to know that people are achieving excellent results without having a stem cell transplant!
You mentioned you are in remission. Great news! Are you off all prescribed drugs at this time? If so, how long did it take for you to achieve a complete response?
Yes, I do have pure red cell aplasia, as well. I have gotten recommendations from the Mayo Clinic and Dana Farber to take Revlimid, Velcade and dexamethasone. Wow, how wonderful it would be to have the red cell aplasia taken care of with the dex! I will be starting that drug regimen in approx. 2 weeks.
Thanks again for your information. It is greatly appreciated!
Roxie
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Roxie - Name: Lynn S.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/13/2016
- Age at diagnosis: 58
Re: When a stem cell transplant is not an option
Multibilly,
Thank you so much for your reply, as well. One cannot get enough reassurance while "diving into the unknown." I'm just going to keep a positive attitude, I've joined a gym to hopefully build some bone mass, and am continuously scouring the internet for good nutrition.
All the best to you, as well!
Roxie
Thank you so much for your reply, as well. One cannot get enough reassurance while "diving into the unknown." I'm just going to keep a positive attitude, I've joined a gym to hopefully build some bone mass, and am continuously scouring the internet for good nutrition.
All the best to you, as well!
Roxie
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Roxie - Name: Lynn S.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/13/2016
- Age at diagnosis: 58
Re: When a stem cell transplant is not an option
Roxie,
I have been on immunotherapy for over 2 years without a stem cell transplant. I have 17p deletion high-risk multiple myeloma and my doctor doesn't want to do a stem cell transplant – at least at this point. I also prefer not to have one. I'm on continuous maintenance treatment of Empliciti (elotuzumab), Revlimid, Velcade and dex and feel great. Good luck to you.
I have been on immunotherapy for over 2 years without a stem cell transplant. I have 17p deletion high-risk multiple myeloma and my doctor doesn't want to do a stem cell transplant – at least at this point. I also prefer not to have one. I'm on continuous maintenance treatment of Empliciti (elotuzumab), Revlimid, Velcade and dex and feel great. Good luck to you.
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Janet1520
Re: When a stem cell transplant is not an option
Hi Roxie,
It took me six cycles of Cytoxan, Kyprolis, and dexamethasone to reach a complete response. Currently I am on maintenance, receiving two infusions of just Kyprolis and dexamethasone every other week.
I also continue to receive monthly infusions of IVIG (to support damaged immune function), and Zometa (to strengthen my bones, which had been extensively damaged by myeloma). I was diagnosed with kappa light chain myeloma in March, 2015, and was at Stage III, with 90% of my cells found to be malignant by biopsy. So, unfortunately, there was a lot of end organ damage at the time of my diagnosis. But I am doing very well now.
Orally, I also take valacyclovir and Bactrim (sulfamethoxazole and trimethoprim) as prophylactics against viral and bacterial infections, respectively.
Some of these supporting adjunct therapies will be phased out as my complete response continues and my blood cell counts continue to improve.
I wish you the best of luck as you begin your Revlimid, Velcade, and dexamethasone regimen. Mayo and Dana Farber are excellent treatment centers. It sounds like you are in very good hands!
It took me six cycles of Cytoxan, Kyprolis, and dexamethasone to reach a complete response. Currently I am on maintenance, receiving two infusions of just Kyprolis and dexamethasone every other week.
I also continue to receive monthly infusions of IVIG (to support damaged immune function), and Zometa (to strengthen my bones, which had been extensively damaged by myeloma). I was diagnosed with kappa light chain myeloma in March, 2015, and was at Stage III, with 90% of my cells found to be malignant by biopsy. So, unfortunately, there was a lot of end organ damage at the time of my diagnosis. But I am doing very well now.
Orally, I also take valacyclovir and Bactrim (sulfamethoxazole and trimethoprim) as prophylactics against viral and bacterial infections, respectively.
Some of these supporting adjunct therapies will be phased out as my complete response continues and my blood cell counts continue to improve.
I wish you the best of luck as you begin your Revlimid, Velcade, and dexamethasone regimen. Mayo and Dana Farber are excellent treatment centers. It sounds like you are in very good hands!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: When a stem cell transplant is not an option
I choose not to have a SCT and achieved a complete stringent response. Now 3 years later I am still holding it. My maintenance now is Velcade every other week and Zometa monthly. Six months ago I discontinued the dex as it was interfering with my quality of life. I am doing just fine without it.
My next step is to change my Velcade to every third week and Zometa every 6 weeks. I will see my myeloma specialist this week and will tell that I am conducting my own clinical trial.
My next step is to change my Velcade to every third week and Zometa every 6 weeks. I will see my myeloma specialist this week and will tell that I am conducting my own clinical trial.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
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