On Friday I took my mom (71, not active, weak, but can function independently and no other health complications) to a stem cell transplant consultation and we are overwhelmed and more confused than ever on next steps. The doctor really seemed to be pushing the stem cell transplant, but it almost seemed like it was for his own agenda. It was weird how it seemed he was trying to sell us on it.
She is responding very well right now to chemo – cyclophosphamide, Velcade, and dexamethasone (CyBorD) – and has completed 3 cycles, so we were told this is prime time to go ahead with the transplant but it is scary to rush into this. We were told eventually her chemo will not work as effectively and that's why it is best to go with the stem cell transplant. An oncologist we had met with in Boston had said there is no research suggesting that the stem cell transplant will prolong her life, just give her better quality of life, but her quality of life is great right now even with the chemo once per week.
Does anyone have experiences with stem cell transplant with people of this age? I peeked around on the forum but the oldest I found was around 60.
Any suggestions on info I should look into before making a decision?
Thank you!
Forums
8 posts
• Page 1 of 1
Re: Stem cell transplant for my 71-year-old mom?
Good day, Mrscac:
There is information under the resources tab of the main page on ASCT's. As you research it for your mom, let me try and point you in the right direction. There are also forum contributors that have blogged their ASCT experience, and that's under the useful links thread under this section, and there is info at the major hospitals and other web resources.
How the ASCT process is tolerated by patients varies greatly. A few find it sort of easy, but for most it is difficult and a physical challenge that takes you 4 to 8 months to recover from. You have to be in fairly good physical condition to be cleared for it, with no major heart, lung issues or other major problems. Old/frail patients are typically not directed to transplant. Until a recent update, 65 was the age that they cut off. More recently, the guidelines have been modified so that rather than a strict age limit, it's based on age and an evaluation of the physical condition. For example, a very active and healthy 70-year old maybe approved for transplant, where 5 or 10 years ago, he (or she) would not be.
There are many factors to consider. Some doctors and patients in this day and age consider transplant at first relapse an option. Very, very generally, if you respond very well, get to CR quicker (or better MRD-), have a good FISH test, and very low impact of the CRAB symptoms, in those cases doctors would lean toward delayed ASCT. To the extent that you have the opposite, doctors lean towards doing an ASCT earlier.
I cannot tell you which way would be best, overall, however, based only on your concern not to rush into an ASCT, I would suggest discussing your concerns with your doctor in more depth. I am guessing that if you wanted to get a second opinion, that there might be other doctors potentially with a different approach to your mother's case. You do find significant differences in approaches between the myeloma specialists.
Good luck to you and your family.
There is information under the resources tab of the main page on ASCT's. As you research it for your mom, let me try and point you in the right direction. There are also forum contributors that have blogged their ASCT experience, and that's under the useful links thread under this section, and there is info at the major hospitals and other web resources.
How the ASCT process is tolerated by patients varies greatly. A few find it sort of easy, but for most it is difficult and a physical challenge that takes you 4 to 8 months to recover from. You have to be in fairly good physical condition to be cleared for it, with no major heart, lung issues or other major problems. Old/frail patients are typically not directed to transplant. Until a recent update, 65 was the age that they cut off. More recently, the guidelines have been modified so that rather than a strict age limit, it's based on age and an evaluation of the physical condition. For example, a very active and healthy 70-year old maybe approved for transplant, where 5 or 10 years ago, he (or she) would not be.
There are many factors to consider. Some doctors and patients in this day and age consider transplant at first relapse an option. Very, very generally, if you respond very well, get to CR quicker (or better MRD-), have a good FISH test, and very low impact of the CRAB symptoms, in those cases doctors would lean toward delayed ASCT. To the extent that you have the opposite, doctors lean towards doing an ASCT earlier.
I cannot tell you which way would be best, overall, however, based only on your concern not to rush into an ASCT, I would suggest discussing your concerns with your doctor in more depth. I am guessing that if you wanted to get a second opinion, that there might be other doctors potentially with a different approach to your mother's case. You do find significant differences in approaches between the myeloma specialists.
Good luck to you and your family.
-
JPC - Name: JPC
Re: Stem cell transplant for my 71-year-old mom?
This is purely anecdotal, but I understand how overwhelming the decision-making process can be. My 62-year-old mother underwent an autologous stem cell transplant in November and is already in far better shape than she was pre-cancer diagnosis; the recovery has been so smooth that she is considering a tandem in the spring.
Far more interesting though: we have a family friend who is 80 and underwent an autologous stem cell transplant for myeloma in September. She lives alone, was back to working out two months after and is heading down to Florida to escape the Chicago winter as I write. Each case is different and they use a battery of tests before to really assess the risk of doing the transplant, so that should provide some peace of mind if you decide to continue investigating this. In this woman's case, they decided she was healthy enough to withstand the treatment.
I think it's most important that you meet with another specialist about the stem cell transplant; it's just so imperative to feel like you're in ethical hands and it doesn't sound like you had that feeling with this doctor.
Far more interesting though: we have a family friend who is 80 and underwent an autologous stem cell transplant for myeloma in September. She lives alone, was back to working out two months after and is heading down to Florida to escape the Chicago winter as I write. Each case is different and they use a battery of tests before to really assess the risk of doing the transplant, so that should provide some peace of mind if you decide to continue investigating this. In this woman's case, they decided she was healthy enough to withstand the treatment.
I think it's most important that you meet with another specialist about the stem cell transplant; it's just so imperative to feel like you're in ethical hands and it doesn't sound like you had that feeling with this doctor.
Re: Stem cell transplant for my 71-year-old mom?
Thank you so much for sharing these experiences and information with me! I am taking your suggestion and called another specialist in Boston to meet with so I can have more peace of mind with our decision. I will take a look through stem cell transplant experiences on the forum to see the wide range of responses to this treatment. Thanks again!
Re: Stem cell transplant for my 71-year-old mom?
Hi mrscac,
This is a rather belated post on this topic, but I have only recently begun posting (see my posting in the newcomers part of the forum) and I feel it is relevant as I had an auto stem cell transplant in November 2013 at the age of 72. I would also be interested to know what decision you come to and how your Mother gets on, whether or not you go with transplant.
I am in Australia, but I feel sure the process is very similar in USA. I agree totally with previous post by JPC that adequate physical testing is done prior to transplant and also his assessment of the challenges involved. If there are no FISH test or CRAB complications, I would also be concerned about your docs rush to transplant. The fact that you are getting a second opinion sounds good.
I also agree with cubs fan, that age in itself does not necessarily rule out transplant, more and more older people are having success with it, but there are many things to consider before you do.
I knew very early in the process that my haematologist was keen to extend the use of transplants in older patients. He said when he first discussed treatment with me," I look at a person, not a number". However, at no stage did I feel railroaded into it. I started treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD) in February 2013, and like your Mum, did well, although I did not get to complete response (CR). In August I agreed to stem cell collection without actually committing to transplant itself, although I thought I probably would, and my haemo was OK with that.
My situation is complicated by distance. We live in rural Victoria,350 km from Peter MacCallum Cancer Centre in Melbourne, where I have my treatment (things like Velcade and Zometa I have at our local hospital, all organized by Peter Mac). I do have daughters in Melbourne who care for me very well, but it means being away from my husband who is in his 80s, disabled, and unable to travel. Late August and early September I spent nearly 2 weeks in Melbourne and successfully collected enough stem cells for 2 transplants
I probably made up my mind over this time to go ahead with transplant, but my husband had unresolved pain management issues, and I needed them sorted before I could consider being away for up to 5 weeks (actually it turned out to be 6) .
I went into hospital on 19th November, had melphalan160 mg rather than 200 mg because of my age, next day, and got stem cells back on 22nd November. Gastrointestinal side effects kicked in early and in spite of much supportive medication they could not be totally controlled. In spite of this, everything was going to plan and engraftment happened as expected and hoped.
However, whilst neutropenic, a bug in my system kicked in and I spent 5 days in ICU with an antibiotic resistant pneumonia. This slowed my recovery greatly, and it was Day 30 before I left hospital, discharged to my daughters for 2 weeks before I was allowed home.
Throughout the whole process, Peter Mac staff were amazing, nothing was too much trouble. In spite of having a nasal-gastro feeding tube for a week, I still lost 18 lb and I was only about 120 lb to begin with. Recovery continued at an increasing speed, and by mid-March I was pretty much back to normal. Since then I have had over 2 years of CR with excellent quality of life. There are a few minor hangovers from it, but nothing that cannot be managed. I only had the one setback through the whole process. For someone our age, I rate it tough but do-able. I have absolutely no regrets about doing it.
mrscac, throughout this lengthy ramble I have failed to mention what is probably the most important point of all. What does your Mum think and feel about this whole situation? This whole process is mental and emotional as well as physical. I found that I had to let go of the bad stuff as soon as it had happened and keep focused on what I wanted to achieve. We have 11 grand-children and 5 great-grandies and I want to be a part of their lives in a real and active way for a while yet.
I wish you and Mum all the best as you make your decisions and follow them through.
Ronda
This is a rather belated post on this topic, but I have only recently begun posting (see my posting in the newcomers part of the forum) and I feel it is relevant as I had an auto stem cell transplant in November 2013 at the age of 72. I would also be interested to know what decision you come to and how your Mother gets on, whether or not you go with transplant.
I am in Australia, but I feel sure the process is very similar in USA. I agree totally with previous post by JPC that adequate physical testing is done prior to transplant and also his assessment of the challenges involved. If there are no FISH test or CRAB complications, I would also be concerned about your docs rush to transplant. The fact that you are getting a second opinion sounds good.
I also agree with cubs fan, that age in itself does not necessarily rule out transplant, more and more older people are having success with it, but there are many things to consider before you do.
I knew very early in the process that my haematologist was keen to extend the use of transplants in older patients. He said when he first discussed treatment with me," I look at a person, not a number". However, at no stage did I feel railroaded into it. I started treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD) in February 2013, and like your Mum, did well, although I did not get to complete response (CR). In August I agreed to stem cell collection without actually committing to transplant itself, although I thought I probably would, and my haemo was OK with that.
My situation is complicated by distance. We live in rural Victoria,350 km from Peter MacCallum Cancer Centre in Melbourne, where I have my treatment (things like Velcade and Zometa I have at our local hospital, all organized by Peter Mac). I do have daughters in Melbourne who care for me very well, but it means being away from my husband who is in his 80s, disabled, and unable to travel. Late August and early September I spent nearly 2 weeks in Melbourne and successfully collected enough stem cells for 2 transplants
I probably made up my mind over this time to go ahead with transplant, but my husband had unresolved pain management issues, and I needed them sorted before I could consider being away for up to 5 weeks (actually it turned out to be 6) .
I went into hospital on 19th November, had melphalan160 mg rather than 200 mg because of my age, next day, and got stem cells back on 22nd November. Gastrointestinal side effects kicked in early and in spite of much supportive medication they could not be totally controlled. In spite of this, everything was going to plan and engraftment happened as expected and hoped.
However, whilst neutropenic, a bug in my system kicked in and I spent 5 days in ICU with an antibiotic resistant pneumonia. This slowed my recovery greatly, and it was Day 30 before I left hospital, discharged to my daughters for 2 weeks before I was allowed home.
Throughout the whole process, Peter Mac staff were amazing, nothing was too much trouble. In spite of having a nasal-gastro feeding tube for a week, I still lost 18 lb and I was only about 120 lb to begin with. Recovery continued at an increasing speed, and by mid-March I was pretty much back to normal. Since then I have had over 2 years of CR with excellent quality of life. There are a few minor hangovers from it, but nothing that cannot be managed. I only had the one setback through the whole process. For someone our age, I rate it tough but do-able. I have absolutely no regrets about doing it.
mrscac, throughout this lengthy ramble I have failed to mention what is probably the most important point of all. What does your Mum think and feel about this whole situation? This whole process is mental and emotional as well as physical. I found that I had to let go of the bad stuff as soon as it had happened and keep focused on what I wanted to achieve. We have 11 grand-children and 5 great-grandies and I want to be a part of their lives in a real and active way for a while yet.
I wish you and Mum all the best as you make your decisions and follow them through.
Ronda
-
RondaV
Re: Stem cell transplant for my 71-year-old mom?
Hi mrscac,
You've gotten good advice from folks who have responded here already, but I thought I'd add another thought or two, mostly spurred on by RondaV's excellent post.
Like RondaV, I got an infection (E. coli) when my immune system was at its lowest after my stem cell transplant, around Day +8, I think. And, like RondaV, I ended up in the ICU for awhile. I was 59 at the time of my SCT.
So I would strongly suggest that if your mother does have a stem cell transplant that it be performed at a major myeloma center where they perform lots of stem cell transplants and know what early signs to watch for to indicate that there might be problems.
Second, at your mother's age, I think it would be slightly less risky to have the transplant done on an inpatient basis, rather than outpatient, mainly under the assumption that if a problem develops they can get on top of it immediately if she is an inpatient.
Finally, one factor that I don't think has been discussed – what does your mother want to do? Does she think she can make it through the rigors of the stem cell transplant? Is it important to her to drive toward the deepest response possible, but without any guarantees, of course?
Lots of difficult questions to work through ... Whether to do a stem cell transplant is a big decision at any age, but even more so when the age of the patient is higher.
Best wishes to you and your mother. Please keep us posted on what decision you all make and on how things go.
Mike
You've gotten good advice from folks who have responded here already, but I thought I'd add another thought or two, mostly spurred on by RondaV's excellent post.
Like RondaV, I got an infection (E. coli) when my immune system was at its lowest after my stem cell transplant, around Day +8, I think. And, like RondaV, I ended up in the ICU for awhile. I was 59 at the time of my SCT.
So I would strongly suggest that if your mother does have a stem cell transplant that it be performed at a major myeloma center where they perform lots of stem cell transplants and know what early signs to watch for to indicate that there might be problems.
Second, at your mother's age, I think it would be slightly less risky to have the transplant done on an inpatient basis, rather than outpatient, mainly under the assumption that if a problem develops they can get on top of it immediately if she is an inpatient.
Finally, one factor that I don't think has been discussed – what does your mother want to do? Does she think she can make it through the rigors of the stem cell transplant? Is it important to her to drive toward the deepest response possible, but without any guarantees, of course?
Lots of difficult questions to work through ... Whether to do a stem cell transplant is a big decision at any age, but even more so when the age of the patient is higher.
Best wishes to you and your mother. Please keep us posted on what decision you all make and on how things go.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Stem cell transplant for my 71-year-old mom?
Hello mrscac,
I will be 69 in a few months and I was diagnosed with multiple myeloma in November 2014. I chose not to have an autologous stem cell transplant. I have read multiple accounts of 70+ year old patients undergoing the ASCT quite successfully, right here on the Myeloma Beacon.
All multiple myelomas are not the same and I found the mSMART guidelines from the Mayo Clinic very helpful in making my decision. Quite a few younger oncologists, some recently out of training, had advised me that autologous stem cell transplantation is the "standard of care", without even asking about the specifics of my symptoms or test results. I often felt pressured by such advice from some family friends, too.
Fortunately for me, my own oncologist left the decision entirely up to me after discussing the pros and cons. Mine is a standard risk, IgG kappa multiple myeloma with no chromosomal abnormalities. I responded well to the induction therapy and I am transitioning into the maintenance phase. My quality of life is getting better and I can resume my golf and much of my exercise routine.
My own experience is that after about 4 months of minimal impact on my quality of life, the induction therapy became progressively intolerable for me, just about the time I achieved the complete response (CR) or stringent complete response (sCR). However, each case is different, and I hope your mom can tolerate her treatment well. And the myeloma experts you are consulting would help your mom make her decision after weighing all the considerations.
As I understand it, some patients choose to undergo the stem cell transplant to be completely 'drug free' for a few years. However, it seems that there is a relapse within approximately 3 years after the ASCT, and they have to go on maintenance anyway. I wish all the best to your mom, whichever option she chooses.
I will be 69 in a few months and I was diagnosed with multiple myeloma in November 2014. I chose not to have an autologous stem cell transplant. I have read multiple accounts of 70+ year old patients undergoing the ASCT quite successfully, right here on the Myeloma Beacon.
All multiple myelomas are not the same and I found the mSMART guidelines from the Mayo Clinic very helpful in making my decision. Quite a few younger oncologists, some recently out of training, had advised me that autologous stem cell transplantation is the "standard of care", without even asking about the specifics of my symptoms or test results. I often felt pressured by such advice from some family friends, too.
Fortunately for me, my own oncologist left the decision entirely up to me after discussing the pros and cons. Mine is a standard risk, IgG kappa multiple myeloma with no chromosomal abnormalities. I responded well to the induction therapy and I am transitioning into the maintenance phase. My quality of life is getting better and I can resume my golf and much of my exercise routine.
My own experience is that after about 4 months of minimal impact on my quality of life, the induction therapy became progressively intolerable for me, just about the time I achieved the complete response (CR) or stringent complete response (sCR). However, each case is different, and I hope your mom can tolerate her treatment well. And the myeloma experts you are consulting would help your mom make her decision after weighing all the considerations.
As I understand it, some patients choose to undergo the stem cell transplant to be completely 'drug free' for a few years. However, it seems that there is a relapse within approximately 3 years after the ASCT, and they have to go on maintenance anyway. I wish all the best to your mom, whichever option she chooses.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Stem cell transplant for my 71-year-old mom?
My mother had an inpatient autologous stem cell transplant in December of 2014 at Roswell Park.
The doctor determined that she was a young 70-year old and with her response to initial treatment, and a support system in place that she was a good candidate. He also said that she was more likely to experience more of the side effects and to a greater degree than someone younger.
He wasn't wrong. However, she came out of it with an even higher response than CR and is doing well.
The doctor determined that she was a young 70-year old and with her response to initial treatment, and a support system in place that she was a good candidate. He also said that she was more likely to experience more of the side effects and to a greater degree than someone younger.
He wasn't wrong. However, she came out of it with an even higher response than CR and is doing well.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
8 posts
• Page 1 of 1
Return to Treatments & Side Effects