Hi there. I know this topic is discussed often and I realize there is no right answer, but sometimes it would be easier if someone would just tell us what to do! This is a life-altering decision that is almost unbearable!
I have had two opinions from two different myeloma specialists with two different philosophies. The first is to start RVD [Revlimid + Velcade + dexamethasone], collect stem cells, then do a stem cell transplant (SCT).
The second recommends CyBorD [cyclophosphamide (Cytoxan) + Velcade (bortezomib) + dexamethasone] then just follow, no collection, and no SCT yet. She said that they do not collect stem cells until right before doing a transplant (in other words, they don't freeze for the future). She recommends Cytoxan first and save Revlimid for non-response or relapses.
This all sounds reasonable and I know the choice is an individual one, but, wow, is this difficult. I would appreciate hearing how everyone came to terms with their decisions.
Thanks so much!!!
Forums
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Two different treatment philosophies; how do you chose?
Your comment that one institution doesn't freeze stem cells and only collect just before transplant prompted me to reply. That just does not sound right to me.
I've recently made the decisions you mention for myself (initial treatment with bortezomib [Velcade] and dex - I did not tolerate lenalidomide [Revlimid] - and heading for SCT in two weeks). I've done quite a bit of reading of studies and the field is going more and more toward collecting stem cells early and freezing for the future, even if SCT is not done immediately. In fact, there are training courses out there suggesting to community docs to do just that. And I believe recent ASH study identified not enough patients are collecting stem cells and freezing them (sorry I can't find that one…maybe someone else can locate it).
I had a conversation just this morning with my primary care doc who said he always refers myeloma patients to research facilities and specialists in myeloma itself because of all the different opinions. I recently read a study that identified longer overall survival for patients at research institutions.
Each myeloma case is different and there are a lot of different opinions out there. But, for myself, I'd question anyone that does not recommend stem cell collection at a time when the disease is lowest and freezing for future insurance. They can keep them viable for 10 years or more!
I've recently made the decisions you mention for myself (initial treatment with bortezomib [Velcade] and dex - I did not tolerate lenalidomide [Revlimid] - and heading for SCT in two weeks). I've done quite a bit of reading of studies and the field is going more and more toward collecting stem cells early and freezing for the future, even if SCT is not done immediately. In fact, there are training courses out there suggesting to community docs to do just that. And I believe recent ASH study identified not enough patients are collecting stem cells and freezing them (sorry I can't find that one…maybe someone else can locate it).
I had a conversation just this morning with my primary care doc who said he always refers myeloma patients to research facilities and specialists in myeloma itself because of all the different opinions. I recently read a study that identified longer overall survival for patients at research institutions.
Each myeloma case is different and there are a lot of different opinions out there. But, for myself, I'd question anyone that does not recommend stem cell collection at a time when the disease is lowest and freezing for future insurance. They can keep them viable for 10 years or more!
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cjb
Re: Two different treatment philosophies; how do you chose?
There is an insurance aspect to the "when to collect stem cells" issue. I know then when I was deciding what course of treatment to follow, my insurance company told me that they would not pay for collection and storage that was not part of a transplant shortly thereafter. Also, the center where I was being treated would not store stem cells which were not collected in anticipation of a transplant in the near term.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Two different treatment philosophies; how do you chose?
I agree with cjb that something doesn't seem right about not storing the stem cells. Also, I've heard that there is an optimal time for collection and that it's just after induction when your body has only been exposed to the drugs for a few months and your cancer has been beaten down.
That being said, Goldmine raises a good point about insurance. I would make some phone calls and find out what your insurance covers and I'd also call other transplant facilities to see how they handle it. My insurance is good and Dana Farber Cancer Center is an "in network" facility for me, so there was never any discussion about not storing the cells. That's just how they do it there and the insurance covers it. If I hadn't have had insurance maybe there would have been a discussion about price, etc. I don't know. I'm wondering if some places just roll it into the price they charge for the harvest of the cells and get compensation that way.
In my opinion, I'd want to do the harvest only once. I hated doing the Neupogen injections required prior to the harvest, and it was good to know that I wouldn't need to go through the harvest process again since they got enough for two transplants.
The decision to transplant or wait is a tough one. It haunted me for months. I finally decided to go forward with it right after induction therapy for a few reasons:
1) I am high risk and both doctors (specialist and local oncologist) were recommending it as early therapy. They said I would be at my strongest and my myeloma is aggressive.
2) I felt like I wanted to be done with it because I wanted to stop thinking about it, waiting for numbers to relapse, knowing it was coming. I knew that I would transplant at some time. I didn't feel that I had the luxury of not trying it due to my aggressive myeloma. I didn't want to look back and wonder if I'd done everything I could have done to stop the disease.
3) The harvest chemo takes out your hair and for some, the melphalan does too. I hoped to lose my hair only once.
If I were standard risk, I might have chosen to wait, but I would have harvested early.
Good luck and best wishes with your decision and your therapy!
That being said, Goldmine raises a good point about insurance. I would make some phone calls and find out what your insurance covers and I'd also call other transplant facilities to see how they handle it. My insurance is good and Dana Farber Cancer Center is an "in network" facility for me, so there was never any discussion about not storing the cells. That's just how they do it there and the insurance covers it. If I hadn't have had insurance maybe there would have been a discussion about price, etc. I don't know. I'm wondering if some places just roll it into the price they charge for the harvest of the cells and get compensation that way.
In my opinion, I'd want to do the harvest only once. I hated doing the Neupogen injections required prior to the harvest, and it was good to know that I wouldn't need to go through the harvest process again since they got enough for two transplants.
The decision to transplant or wait is a tough one. It haunted me for months. I finally decided to go forward with it right after induction therapy for a few reasons:
1) I am high risk and both doctors (specialist and local oncologist) were recommending it as early therapy. They said I would be at my strongest and my myeloma is aggressive.
2) I felt like I wanted to be done with it because I wanted to stop thinking about it, waiting for numbers to relapse, knowing it was coming. I knew that I would transplant at some time. I didn't feel that I had the luxury of not trying it due to my aggressive myeloma. I didn't want to look back and wonder if I'd done everything I could have done to stop the disease.
3) The harvest chemo takes out your hair and for some, the melphalan does too. I hoped to lose my hair only once.
If I were standard risk, I might have chosen to wait, but I would have harvested early.
Good luck and best wishes with your decision and your therapy!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Two different treatment philosophies; how do you chose?
They didn't collect mine until the week before my SCT. I can see the reasoning in doing it this way. I had had a very good response to Velcade/Prednisone and my numbers had been stable for several months, indicating that I had probably reached the best point to draw the stem cells.
I would think that drawing them when they feel they have reduced the diseased cells to their lowest point would make sense. After all, they are going to put them back in service and the more healthy cells, the better. You don't want to draw any more diseased cells than necessary.
Holding Revlimid until later is what I'm going to do now. I've had a CR since 4/10 and I'm now beginning to relapse and they want to start Revlimid, which will be a new drug attacking the disease.
I would think that drawing them when they feel they have reduced the diseased cells to their lowest point would make sense. After all, they are going to put them back in service and the more healthy cells, the better. You don't want to draw any more diseased cells than necessary.
Holding Revlimid until later is what I'm going to do now. I've had a CR since 4/10 and I'm now beginning to relapse and they want to start Revlimid, which will be a new drug attacking the disease.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Two different treatment philosophies; how do you chose?
Hey Gardengirl,
You already know my opinion on ASCTs, so I won't go into that again here
That's curious about delaying the stem cell collection. You could always collect now and then collect again later to satisfy the one doc's concern. There certainly is risk in waiting to collect until just before and ASCT, so I find it hard to understand what the doc's logic is here.
Not to make a difficult choice more difficult, but I would personally consider avoiding Cytoxan as a frontline treatment (and perhaps also Rev), due its toxic nature.
Have you read up on the side effects of Cytoxan (secondary cancers, etc)?
http://www.webmd.com/drugs/drug-6738-Cytoxan+Oral.aspx?drugid=6738&drugname=Cytoxan+Oral
None of the multiple myeloma drugs are great from a toxicity and risk standpoint (Revlimid has its own issues and historically it has also been considered a cause of secondary cancers. Secondary cancer risk is a special concern to me given my immediate family history). But, Cytoxan in particular has always especially scared me.
I get why your one doc is saying to start with CyBorD and to save Rev for later, but I would personally consider not using either in a frontline setting. Let me add that I also totally get that Cytoxan is a nice tool to have in your toolchest when one is R/R and has gone through all the other drugs, so I'm not trying to completely throw Cytoxan under the bus... I'm just questioning it's use as a frontline treatment.
So, you might ask what would do? If I become symptomatic in the future, I will personally investigate Velcade+Doxil+Dex or Kyprolis in a combo based on my discussions with my specialists thus far. Again, I get that these cocktails also have their own toxicities and risks and every patient is different. I might also find that, based on my specific circumstances at the time I would begin treatment, that I might be considering a drug such as Rev.
I guess my point here is to encourage you to have a deeper discussion with your docs on the long term effects and risks of these specific drugs. Best of luck to you in making a decision.
You already know my opinion on ASCTs, so I won't go into that again here
That's curious about delaying the stem cell collection. You could always collect now and then collect again later to satisfy the one doc's concern. There certainly is risk in waiting to collect until just before and ASCT, so I find it hard to understand what the doc's logic is here.
Not to make a difficult choice more difficult, but I would personally consider avoiding Cytoxan as a frontline treatment (and perhaps also Rev), due its toxic nature.
Have you read up on the side effects of Cytoxan (secondary cancers, etc)?
http://www.webmd.com/drugs/drug-6738-Cytoxan+Oral.aspx?drugid=6738&drugname=Cytoxan+Oral
None of the multiple myeloma drugs are great from a toxicity and risk standpoint (Revlimid has its own issues and historically it has also been considered a cause of secondary cancers. Secondary cancer risk is a special concern to me given my immediate family history). But, Cytoxan in particular has always especially scared me.
I get why your one doc is saying to start with CyBorD and to save Rev for later, but I would personally consider not using either in a frontline setting. Let me add that I also totally get that Cytoxan is a nice tool to have in your toolchest when one is R/R and has gone through all the other drugs, so I'm not trying to completely throw Cytoxan under the bus... I'm just questioning it's use as a frontline treatment.
So, you might ask what would do? If I become symptomatic in the future, I will personally investigate Velcade+Doxil+Dex or Kyprolis in a combo based on my discussions with my specialists thus far. Again, I get that these cocktails also have their own toxicities and risks and every patient is different. I might also find that, based on my specific circumstances at the time I would begin treatment, that I might be considering a drug such as Rev.
I guess my point here is to encourage you to have a deeper discussion with your docs on the long term effects and risks of these specific drugs. Best of luck to you in making a decision.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Two different treatment philosophies; how do you chose?
Thank you everyone! I just contacted the doctor and she confirmed that's how they do it ... they collect the stem cells right before SCT. She also said lenalidomide (Revlimid) is the only drug that would cause difficulty in collection, and since she is not recommending starting with that, I guess it should be ok?
Mulitbilly, thank you for always providing vital information. I will research Cytoxan. Now it's the question of 2 or 3 drugs to start ... more research!
Mulitbilly, thank you for always providing vital information. I will research Cytoxan. Now it's the question of 2 or 3 drugs to start ... more research!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Two different treatment philosophies; how do you chose?
Gardengirl-
Your point about getting another opinion only to be left with a 3rd, 4th, 5th, etc opinion of how to proceed is very well taken. I know a few people who have gone for more than 2 opinions and each one they got was different at to whether to do a stem cell transplant and the timing, what drugs to start with, etc.
I had no problems with collecting stem cells with Revlimid as my induction treatment. I had 8 cycles of Rev/Dex before starting preparation for my transplant. My stem cells practically jumped out of my body when they were harvested. I only had one day of harvesting. So, as with everything else with this disease, you can't predict ahead of time about a drug's affect on your ability to harvest.
I don't know which transplant center is saying that they don't collect stem cells until right before a transplant because they don't store them, but I do know that Johns Hopkins has that policy. Penn harvests the cells and stores them without charging for storage. I don't know if they harvest and store if you aren't planning to have a transplant in the near future. They do store the ones that you don't use in a transplant.
I personally see Cytoxan as a drug to be used when the novel drugs are no longer working. I started with Revlimid and am again taking Revlimid now that I've relapsed. Both times I have had excellent responses to the drug. I have a few side effects that are manageable and don't interfere with my life at all. My oncologist has said that he would add Velcade to the mix if my response to Revlimid began to diminish.
Wouldn't it be nice if there was one opinion on how to treat and we could rely on that. But, we have to do our own research and make the decisions based on that and the input from the doctors who we see. I have relied on my gut reaction to a path to follow once I have gathered as much information as I feel I need to gather.
I wish you all of the best in making this momentous decision as to how you will proceed,
Nancy in Phila
Your point about getting another opinion only to be left with a 3rd, 4th, 5th, etc opinion of how to proceed is very well taken. I know a few people who have gone for more than 2 opinions and each one they got was different at to whether to do a stem cell transplant and the timing, what drugs to start with, etc.
I had no problems with collecting stem cells with Revlimid as my induction treatment. I had 8 cycles of Rev/Dex before starting preparation for my transplant. My stem cells practically jumped out of my body when they were harvested. I only had one day of harvesting. So, as with everything else with this disease, you can't predict ahead of time about a drug's affect on your ability to harvest.
I don't know which transplant center is saying that they don't collect stem cells until right before a transplant because they don't store them, but I do know that Johns Hopkins has that policy. Penn harvests the cells and stores them without charging for storage. I don't know if they harvest and store if you aren't planning to have a transplant in the near future. They do store the ones that you don't use in a transplant.
I personally see Cytoxan as a drug to be used when the novel drugs are no longer working. I started with Revlimid and am again taking Revlimid now that I've relapsed. Both times I have had excellent responses to the drug. I have a few side effects that are manageable and don't interfere with my life at all. My oncologist has said that he would add Velcade to the mix if my response to Revlimid began to diminish.
Wouldn't it be nice if there was one opinion on how to treat and we could rely on that. But, we have to do our own research and make the decisions based on that and the input from the doctors who we see. I have relied on my gut reaction to a path to follow once I have gathered as much information as I feel I need to gather.
I wish you all of the best in making this momentous decision as to how you will proceed,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Two different treatment philosophies; how do you chose?
Nancy, you are correct ... Hopkins is the place I went. I found it odd, too; hence the confusion I now have! Hopkins is suppose to be one of the best, so I guess I need to trust their opinion. A lot of you would not do Cytoxan as front line, so now I'm curious as to what drug combination to consider! (I'm standard risk, stage 1.)
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Two different treatment philosophies; how do you chose?
There was a great and recent video of a debate on the use of alkylators like Cytoxan in the treatment of multiple myeloma. One of the doctors made a very compelling case for just saying "no" to alkylators. Wish i could find it, but I just can't seem to locate it. Maybe somebody else recalls seeing it? It might have come out of ASH 2013?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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