@aczatx47131 There are several factors when deciding on stem cell transplant. A good oncologist will lay out all the options, and be specific to a patient's medical history and conditions. I have had friends with successful stem cell transplants, in their late 70s.
Ginger
Hello. I am a 51 year old female. I was diagnosed in August 2023, 50yrs old, with stage 1-MM IgA Kappa light chain, no hypermetabolic abnormalities, plasma cell percentage of 80%, no high risk features on FISH. I was put on C1D1 of Velcade, Revlimid, and Dexamethasone at the end of August. My numbers decreased significantly and I was told I was ready for a BMT (autologous). I assumed that this was what I definitely needed to do because since the very first day of dx, I was told it is the best form of treatment. After numerous tests and then more tests, I was cleared for the transplant. On the day of signing consents, I heard the word Leukemia and that this could cause it and I halted! So many questions came up in my head and I asked the main one, why would I do this to give me a possible deeper remission (not cured) and a possible longer remission, yet put myself in danger of another blood cancer that is more severe. I do not know if leukemia is more severe, but just the word leukemia freaks me out. My doctor told me that it was not a high risk but that it is a possibility and this is why they have to disclose it. I sat on this information for a while and did some gentle research and talked it over with family and sort of reluctantly decided to go ahead with the transplant. I had mine in January 2024. I had a REALLY ROUGH go of it. I had the normal side effects from the melphalon but then ended up in ICU 2 times because I somehow got sepsis. I was in the hospital 1 day shy of a month. I am at 200 days post transplant and I am still not at the energy level I was before my transplant. I do not feel better than before, either. I did not reach full remission. I was at 6-8% plasma cell before and after BMT I was at 4-5%. I am now taking 10mg Revlimid daily. If I had it to do all over again, I know that I would not do it. I would do the collection of cells and have them on standby if or when I would decide to do a BMT in the future, as a form of last resort. With all of the other meds out there now and available treatments, I would not choose the BMT. This is just my experience.
Hello. I am a 51 year old female. I was diagnosed in August 2023, 50yrs old, with stage 1-MM IgA Kappa light chain, no hypermetabolic abnormalities, plasma cell percentage of 80%, no high risk features on FISH. I was put on C1D1 of Velcade, Revlimid, and Dexamethasone at the end of August. My numbers decreased significantly and I was told I was ready for a BMT (autologous). I assumed that this was what I definitely needed to do because since the very first day of dx, I was told it is the best form of treatment. After numerous tests and then more tests, I was cleared for the transplant. On the day of signing consents, I heard the word Leukemia and that this could cause it and I halted! So many questions came up in my head and I asked the main one, why would I do this to give me a possible deeper remission (not cured) and a possible longer remission, yet put myself in danger of another blood cancer that is more severe. I do not know if leukemia is more severe, but just the word leukemia freaks me out. My doctor told me that it was not a high risk but that it is a possibility and this is why they have to disclose it. I sat on this information for a while and did some gentle research and talked it over with family and sort of reluctantly decided to go ahead with the transplant. I had mine in January 2024. I had a REALLY ROUGH go of it. I had the normal side effects from the melphalon but then ended up in ICU 2 times because I somehow got sepsis. I was in the hospital 1 day shy of a month. I am at 200 days post transplant and I am still not at the energy level I was before my transplant. I do not feel better than before, either. I did not reach full remission. I was at 6-8% plasma cell before and after BMT I was at 4-5%. I am now taking 10mg Revlimid daily. If I had it to do all over again, I know that I would not do it. I would do the collection of cells and have them on standby if or when I would decide to do a BMT in the future, as a form of last resort. With all of the other meds out there now and available treatments, I would not choose the BMT. This is just my experience.
Very sorry to hear what you have gone through. I was fortunate to have a doctor who said to my husband, "If she was my wife, I would not have her have the bone marrow transplant because she's responded so well to treatment and doesn't have side effects. If the treatment stops working there are so many more." That was over two years ago. Thank you for writing your experience to help others make the choice that is correct for them. A former nurse that chose the operation also takes Revlimid and was told this expensive drug is something she will have to take the rest of her life. Originally, this former nurse thought they had told her the drug would be taken for two years. I was told there are grants you can apply for, but all that takes time.
BMT are very serious, and IMO should not be taken unless your disease is not under control with medical treatment or is progressing aggressively. Prior to the BMT drugs are given that suppress your immune system to dangerously low levels making you very susceptible to infection, hence the two episodes of sepsis. Not to mention the terrible nausea, vomiting, hair loss, etc. I would consider it if nothing else was working, but would go into it very well informed and willing to be miserable in order to get to the remission you are seeking. Thanks for sharing your experience with honesty so others can make the right decision for themselves.
@aczatx47131 There are several factors when deciding on stem cell transplant. A good oncologist will lay out all the options, and be specific to a patient's medical history and conditions. I have had friends with successful stem cell transplants, in their late 70s.
Ginger
Read and study all you can before deciding to do a bone marrow transplant. The deciding factor will probably be if this is what your doctor and Care Team feel is the option for you at the stage of your cancer. I did not even have a harvest of stem cells because that involves at least two weeks of being four hours away from my home. I had responded very well and quickly to shots and doctor said there are many more treatments if these stop working. If you read the magazine by International Multiple Myeloma, RESEARCHERS have progressed so very far in recent years. They continue to progress and learn about our illness and I envision "ringing the bell" in the future. Continue with exercise, nutrition plan that is recommended, no alcohol and we'll get there. A strong support team is also important, All, lots to do in my Sewing Studio and special plans for Saturday, August 10, 2024.
Read and study all you can before deciding to do a bone marrow transplant. The deciding factor will probably be if this is what your doctor and Care Team feel is the option for you at the stage of your cancer. I did not even have a harvest of stem cells because that involves at least two weeks of being four hours away from my home. I had responded very well and quickly to shots and doctor said there are many more treatments if these stop working. If you read the magazine by International Multiple Myeloma, RESEARCHERS have progressed so very far in recent years. They continue to progress and learn about our illness and I envision "ringing the bell" in the future. Continue with exercise, nutrition plan that is recommended, no alcohol and we'll get there. A strong support team is also important, All, lots to do in my Sewing Studio and special plans for Saturday, August 10, 2024.
Read and study all you can before deciding to do a bone marrow transplant. The deciding factor will probably be if this is what your doctor and Care Team feel is the option for you at the stage of your cancer. I did not even have a harvest of stem cells because that involves at least two weeks of being four hours away from my home. I had responded very well and quickly to shots and doctor said there are many more treatments if these stop working. If you read the magazine by International Multiple Myeloma, RESEARCHERS have progressed so very far in recent years. They continue to progress and learn about our illness and I envision "ringing the bell" in the future. Continue with exercise, nutrition plan that is recommended, no alcohol and we'll get there. A strong support team is also important, All, lots to do in my Sewing Studio and special plans for Saturday, August 10, 2024.
Thank you for this comment. I was not aware of the Leukemia risk with stem cell transplants. I was told on July 29th that I have Multiple Myeloma and I am waiting to have a PET scan on 8/15 and then meet with the doctor on 8/21. I have done a lot of reading but did not see anything about the leukemia risk.
Thank you for this comment. I was not aware of the Leukemia risk with stem cell transplants. I was told on July 29th that I have Multiple Myeloma and I am waiting to have a PET scan on 8/15 and then meet with the doctor on 8/21. I have done a lot of reading but did not see anything about the leukemia risk.
Request the large packet of information regarding Multiple Myeloma from Mayo staff. It is like returning to college but you will DEFINITELY be better informed to make decisions. I've been reading things from people on this site, but truly the best source of information is from Mayo and the Mayo research teams. I am vacationing from this site because I have to stay very positive and upbeat. Will return in October sometime.
Request the large packet of information regarding Multiple Myeloma from Mayo staff. It is like returning to college but you will DEFINITELY be better informed to make decisions. I've been reading things from people on this site, but truly the best source of information is from Mayo and the Mayo research teams. I am vacationing from this site because I have to stay very positive and upbeat. Will return in October sometime.
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@aczatx47131 There are several factors when deciding on stem cell transplant. A good oncologist will lay out all the options, and be specific to a patient's medical history and conditions. I have had friends with successful stem cell transplants, in their late 70s.
Ginger
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3 ReactionsHello. I am a 51 year old female. I was diagnosed in August 2023, 50yrs old, with stage 1-MM IgA Kappa light chain, no hypermetabolic abnormalities, plasma cell percentage of 80%, no high risk features on FISH. I was put on C1D1 of Velcade, Revlimid, and Dexamethasone at the end of August. My numbers decreased significantly and I was told I was ready for a BMT (autologous). I assumed that this was what I definitely needed to do because since the very first day of dx, I was told it is the best form of treatment. After numerous tests and then more tests, I was cleared for the transplant. On the day of signing consents, I heard the word Leukemia and that this could cause it and I halted! So many questions came up in my head and I asked the main one, why would I do this to give me a possible deeper remission (not cured) and a possible longer remission, yet put myself in danger of another blood cancer that is more severe. I do not know if leukemia is more severe, but just the word leukemia freaks me out. My doctor told me that it was not a high risk but that it is a possibility and this is why they have to disclose it. I sat on this information for a while and did some gentle research and talked it over with family and sort of reluctantly decided to go ahead with the transplant. I had mine in January 2024. I had a REALLY ROUGH go of it. I had the normal side effects from the melphalon but then ended up in ICU 2 times because I somehow got sepsis. I was in the hospital 1 day shy of a month. I am at 200 days post transplant and I am still not at the energy level I was before my transplant. I do not feel better than before, either. I did not reach full remission. I was at 6-8% plasma cell before and after BMT I was at 4-5%. I am now taking 10mg Revlimid daily. If I had it to do all over again, I know that I would not do it. I would do the collection of cells and have them on standby if or when I would decide to do a BMT in the future, as a form of last resort. With all of the other meds out there now and available treatments, I would not choose the BMT. This is just my experience.
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6 ReactionsVery sorry to hear what you have gone through. I was fortunate to have a doctor who said to my husband, "If she was my wife, I would not have her have the bone marrow transplant because she's responded so well to treatment and doesn't have side effects. If the treatment stops working there are so many more." That was over two years ago. Thank you for writing your experience to help others make the choice that is correct for them. A former nurse that chose the operation also takes Revlimid and was told this expensive drug is something she will have to take the rest of her life. Originally, this former nurse thought they had told her the drug would be taken for two years. I was told there are grants you can apply for, but all that takes time.
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Hug
2 ReactionsBMT are very serious, and IMO should not be taken unless your disease is not under control with medical treatment or is progressing aggressively. Prior to the BMT drugs are given that suppress your immune system to dangerously low levels making you very susceptible to infection, hence the two episodes of sepsis. Not to mention the terrible nausea, vomiting, hair loss, etc. I would consider it if nothing else was working, but would go into it very well informed and willing to be miserable in order to get to the remission you are seeking. Thanks for sharing your experience with honesty so others can make the right decision for themselves.
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Like -
Helpful -
Hug
2 ReactionsRead and study all you can before deciding to do a bone marrow transplant. The deciding factor will probably be if this is what your doctor and Care Team feel is the option for you at the stage of your cancer. I did not even have a harvest of stem cells because that involves at least two weeks of being four hours away from my home. I had responded very well and quickly to shots and doctor said there are many more treatments if these stop working. If you read the magazine by International Multiple Myeloma, RESEARCHERS have progressed so very far in recent years. They continue to progress and learn about our illness and I envision "ringing the bell" in the future. Continue with exercise, nutrition plan that is recommended, no alcohol and we'll get there. A strong support team is also important, All, lots to do in my Sewing Studio and special plans for Saturday, August 10, 2024.
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3 Reactions@smiles1951 You make good points here, and remind us that everyone is different!
What are the special plans in your Sewing Studio for today?!
Ginger
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1 ReactionThank you for this comment. I was not aware of the Leukemia risk with stem cell transplants. I was told on July 29th that I have Multiple Myeloma and I am waiting to have a PET scan on 8/15 and then meet with the doctor on 8/21. I have done a lot of reading but did not see anything about the leukemia risk.
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1 ReactionGifts and home decor. Running. . . no time to be writing on this site until perhaps October.
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1 ReactionRequest the large packet of information regarding Multiple Myeloma from Mayo staff. It is like returning to college but you will DEFINITELY be better informed to make decisions. I've been reading things from people on this site, but truly the best source of information is from Mayo and the Mayo research teams. I am vacationing from this site because I have to stay very positive and upbeat. Will return in October sometime.
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5 ReactionsThank you so much