Hello everyone,
My stem cell transplant is 10 days away. Just trying to do things fun that I will be restricted from for awhile. But something came up in my wondering mind yesterday.
My stem cells were harvested two years ago when I was in a complete response. Of course, now I will have the high-dose chemo that knocks out all my cells, good and bad ones, for transplant. Just a crazy question.
Since myeloma seems to learn a drug treatment and numbers start to rise, a new drug treatment starts and numbers seem to lower or get better. So after wiping out all those cells and then having the transplant, if the myeloma starts to indicate a return, can a person have treatments that they had to begin with? In my case, several different treatments over three years ago but I started with Revlimid and dexamethasone.
Thank You,
Castaway
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Repeating previous treatments after transplant
Hi George,
In March of this year I had a stem cell transplant that did not produce long lasting results. The clonal expansion of my proteins came back only two months after my transplant. Because of thism I have been asking myself the same question as you: Can I resume my previous treatment regimen?
Prior to my transplant, I had completed 6 rounds of induction therapy using the CyBorD regimen (cyclophosphamide, Velcade, and dexamethasone). Each round lasted 5 weeks with the fifth week having just the cyclophosphamide component of the regimen.
I see a hematologist next week to discuss the specifics of my situation. Prior to my relapse, It had been suggested that I go onto a maintenance therapy that had Revlimid (lenalidomide) as a component. However, I am wondering whether it would be better for me to go back to a CyBorD regimen. After all, it did work once.
I realize that it is perfectly possible for the genetic characteristics of my myeloma to have drifted enough to make a CyBorD treatment no longer effective for me. Apparently, myelomas are notorious for their ability to alter their internal characteristics, which greatly complicates treatments. However, I am willing to try it out and see if it still can knock down my M-spike.
Good luck with your transplant,
Joe
In March of this year I had a stem cell transplant that did not produce long lasting results. The clonal expansion of my proteins came back only two months after my transplant. Because of thism I have been asking myself the same question as you: Can I resume my previous treatment regimen?
Prior to my transplant, I had completed 6 rounds of induction therapy using the CyBorD regimen (cyclophosphamide, Velcade, and dexamethasone). Each round lasted 5 weeks with the fifth week having just the cyclophosphamide component of the regimen.
I see a hematologist next week to discuss the specifics of my situation. Prior to my relapse, It had been suggested that I go onto a maintenance therapy that had Revlimid (lenalidomide) as a component. However, I am wondering whether it would be better for me to go back to a CyBorD regimen. After all, it did work once.
I realize that it is perfectly possible for the genetic characteristics of my myeloma to have drifted enough to make a CyBorD treatment no longer effective for me. Apparently, myelomas are notorious for their ability to alter their internal characteristics, which greatly complicates treatments. However, I am willing to try it out and see if it still can knock down my M-spike.
Good luck with your transplant,
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Repeating previous treatments after transplant
Hi Joe,
As a fellow Canadian, the problem we also face is funding. The government only gives so much funding for certain drugs, such as Velcade, which is used in CyBorD. I believe our hematologist told us it can only be given for up to 8 months. This could possibly vary by province, as a nurse told me the best funded provinces for cancer drugs were BC, Alberta, and Manitoba, but it may be nationally standard. Did you ever have a FISH test done when you got your biopsy? It should tell you of any genetic abnormalities that could make you resistant to treatment.
There are many new drugs entering the market and our hematologist told us as of next year the standard relapse regimen, which usually is Revlimid, may change because of all these new drugs.
Wishing you all the best from Ontario
As a fellow Canadian, the problem we also face is funding. The government only gives so much funding for certain drugs, such as Velcade, which is used in CyBorD. I believe our hematologist told us it can only be given for up to 8 months. This could possibly vary by province, as a nurse told me the best funded provinces for cancer drugs were BC, Alberta, and Manitoba, but it may be nationally standard. Did you ever have a FISH test done when you got your biopsy? It should tell you of any genetic abnormalities that could make you resistant to treatment.
There are many new drugs entering the market and our hematologist told us as of next year the standard relapse regimen, which usually is Revlimid, may change because of all these new drugs.
Wishing you all the best from Ontario
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dchrzano - Name: Ula
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: Repeating previous treatments after transplant
Hi Ulla, Joe and George, a quick note from Alberta...
Ulla, I think that the nurse you spoke too may be right in some ways about the availability of drugs in British Columbia, Alberta, and Manitoba. One of the problems in Ontario is that for some obscure reason the funding agency of the province would not fund Velcade twice. Thus, having had it for induction therapy, one could not later have it for a relapse. Even though Velcade is now a generic drug in Canada, costing 30% less than the brand name version, from my latest info of a few months ago, this policy was still in place! But I think that you should inquire about this with your oncologist.
On the topic of what to take after a relapse, or if a stem cell transplant does not produce the results one hoped for, it is a truism that one can stay with the same drug again, if it is still working. In my case, Revlimid was not available until just after my transplant, which was fortuitous. It was with the transplant plus Revlimid that I eventually got to a complete response. Then, after a relapse, took Revlimid, this time with dex, again. But still not being resistant to Velcade, I could try that again for a future relapse. Velcade gave me mild neuropathy, but now it is approved for subcutaneous administration, which I hear is better and easier to take also (I had my Velcade by infusion).
Ulla, I think that the nurse you spoke too may be right in some ways about the availability of drugs in British Columbia, Alberta, and Manitoba. One of the problems in Ontario is that for some obscure reason the funding agency of the province would not fund Velcade twice. Thus, having had it for induction therapy, one could not later have it for a relapse. Even though Velcade is now a generic drug in Canada, costing 30% less than the brand name version, from my latest info of a few months ago, this policy was still in place! But I think that you should inquire about this with your oncologist.
On the topic of what to take after a relapse, or if a stem cell transplant does not produce the results one hoped for, it is a truism that one can stay with the same drug again, if it is still working. In my case, Revlimid was not available until just after my transplant, which was fortuitous. It was with the transplant plus Revlimid that I eventually got to a complete response. Then, after a relapse, took Revlimid, this time with dex, again. But still not being resistant to Velcade, I could try that again for a future relapse. Velcade gave me mild neuropathy, but now it is approved for subcutaneous administration, which I hear is better and easier to take also (I had my Velcade by infusion).
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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: Repeating previous treatments after transplant
Hello Joe, Nancy and Ulla.
Joe - So sorry to hear about your transplant issue. You would think that after the treatment before transplant wiping out all your cells a person could go back to earlier treatments. But maybe I am missing something here. I know everyone has a different response to different combinations of drugs, but my latest combo of Pomalyst, dex, and Kyprolis really did a great job of treating my myeloma. Of course, that means two days per week for 3 weeks at the oncologist for an infusion.
I was told to stop all my treatments about 10 days ago. apparently to allow all the toxicity from my treatments to disparate before getting my large chemo treatment for the transplant.
Best of Luck.
Nancy - Thank you for input. My transplant doctor has already suggested that I have a two-round treatment shortly after transplant. Possibly two months after. At this point, I am not sure what I will be getting. I guess it all depends on how I come through transplant. He also has said that if I need a maintenance drug, it would most likely be Pomalyst.
Thank You,
George
Joe - So sorry to hear about your transplant issue. You would think that after the treatment before transplant wiping out all your cells a person could go back to earlier treatments. But maybe I am missing something here. I know everyone has a different response to different combinations of drugs, but my latest combo of Pomalyst, dex, and Kyprolis really did a great job of treating my myeloma. Of course, that means two days per week for 3 weeks at the oncologist for an infusion.
I was told to stop all my treatments about 10 days ago. apparently to allow all the toxicity from my treatments to disparate before getting my large chemo treatment for the transplant.
Best of Luck.
Nancy - Thank you for input. My transplant doctor has already suggested that I have a two-round treatment shortly after transplant. Possibly two months after. At this point, I am not sure what I will be getting. I guess it all depends on how I come through transplant. He also has said that if I need a maintenance drug, it would most likely be Pomalyst.
Thank You,
George
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Repeating previous treatments after transplant
My husband's transplant early this year also did not work, with the M-spike higher than it was before the transplant when we went in at Day +60. My understanding is that drug regimens that did not work before the transplant will still not work without some change (for example, substituting Pomalyst for Revlimid), but there is no reason to assume that treatments that DID work before transplant will no longer be effective. My husband was refractory to all other regimens except Darzalex (daratumumab), so they re-started the Darzalex, Revlimid, and dex regimen with the expectation that it was likely to continue being effective. The first month his M-spike went down, and the next month it went up, but just a bit, so we're hoping it was a normal fluctuation and not that he's become refractory.
Best of luck to all.
Best of luck to all.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Repeating previous treatments after transplant
There are fairly large differences between how cancer drugs are funded between Canadian provinces. Generally the more you go west in Canada, the better the coverage.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Repeating previous treatments after transplant
Hi All,
I just saw one of my hematologists this afternoon regarding what sort of treatment I should have after my failed stem cell transplant. She said the smartest thing for me to do is to go back on my Velcade treatments that had served me so well prior to my transplant. If this fails, then another type of treatment will be considered.
For the Canadian readers, I checked with my hematologist whether the costs of my second course with Velcade are covered by the British Columbia Health Care Plan. In my case they are!
In British Columbia you can get repeat courses of Velcade treatments as long as the previous courses have been shown to be effective. A course is considered to be roughly 8 months of treatment.
I asked my hematologist whether this was true in all our provinces. She said, “no”, specifically mentioning Ontario.
Best of Luck to All,
Joe
I just saw one of my hematologists this afternoon regarding what sort of treatment I should have after my failed stem cell transplant. She said the smartest thing for me to do is to go back on my Velcade treatments that had served me so well prior to my transplant. If this fails, then another type of treatment will be considered.
For the Canadian readers, I checked with my hematologist whether the costs of my second course with Velcade are covered by the British Columbia Health Care Plan. In my case they are!
In British Columbia you can get repeat courses of Velcade treatments as long as the previous courses have been shown to be effective. A course is considered to be roughly 8 months of treatment.
I asked my hematologist whether this was true in all our provinces. She said, “no”, specifically mentioning Ontario.
Best of Luck to All,
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Repeating previous treatments after transplant
There is a school of thought among some myeloma experts that if you had a good response to a treatment regimen and later relapse, especially after, for example, achieving a complete response after transplant, that it makes sense to try the same regimen again.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Repeating previous treatments after transplant
Just starting my transplant procedure, Day-2 check in, labs, and line placed, Day-1 chemo, tomorrow day 0 and the stem cells I collected two years ago will be returned to me.
I had subcutaneous Velcade (bortezomib) and 40 mg of dexamethasone per week doing very well for treatment and got me to a complete response when my cells were harvested two years ago. The Velcade was starting to give me some neuropathy after about 4 months. I asked my doctor if we could just cut the treatment back a little, but he was afraid of the neuropathy getting worse.
Like Joe, if for some reason this transplant doesn't work very well, I don't see why I cant start Velcade again, as it was working. Only issue was neuropathy. Or even my last treatment with Kyprolis, as it was working exceptionally well.
For now, I am really staying positive on my transplant and hope for the best response. I had loads of anti-nausea medications today and of course my chemo. Ate a lot of ice chips and some popsicles. Also taking clotrimazole 5 times per day. Body wipes 60 minutes after every shower.
Stem cells tomorrow. Then a waiting period to see if all that anti-nausea will help. And my labs start looking better.
Castaway
I had subcutaneous Velcade (bortezomib) and 40 mg of dexamethasone per week doing very well for treatment and got me to a complete response when my cells were harvested two years ago. The Velcade was starting to give me some neuropathy after about 4 months. I asked my doctor if we could just cut the treatment back a little, but he was afraid of the neuropathy getting worse.
Like Joe, if for some reason this transplant doesn't work very well, I don't see why I cant start Velcade again, as it was working. Only issue was neuropathy. Or even my last treatment with Kyprolis, as it was working exceptionally well.
For now, I am really staying positive on my transplant and hope for the best response. I had loads of anti-nausea medications today and of course my chemo. Ate a lot of ice chips and some popsicles. Also taking clotrimazole 5 times per day. Body wipes 60 minutes after every shower.
Stem cells tomorrow. Then a waiting period to see if all that anti-nausea will help. And my labs start looking better.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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