yesterday we met with the doctor at the hospital who will do the SCT if my husband decides to go ahead with it after his harvest in a couple of months time... we did ask lots of questions and basically we were told that due to my husbands age (46) good overall health apart from multiple myeloma, stage 1 and responded quickly to vel/dex/zom - it would be best to try get a deeper response by having the SCT early.
My husband and my family agree... I still have a few nagging thoughts
I have heard that if you wait for transplant the multiple myeloma can mutate or become more difficult to treat - perhaps a good argument for early SCT. how likely is this?
I have also read that the full on chemo can change the cell structure and effect you in many ways, that is what concerns me most - the unpredictability prior to SCT is horrible especially because my husband doesn't seem sick yet...and has no pain
If we did decide to not go ahead now with SCT would my husband be likely to be encouraged to stay on some kind of drug? Rev, Velcade etc? then if or when he did relapsed would he need to go on induction therapy again before SCT or is that just for the sake of the harvest?
We would like to try curcummin at some stage and thought perhaps instead of maintenance therapy after SCT to start taking it... is this an option?
thanks in advance.
Forums
7 posts
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: SCT questions ...
This is not an easy question. The very nature of multiple myeloma is that it can and will mutate and you will end up with different clone lines of multiple myeloma cells over time. These clone lines will all compete for dominance with healthy cells (and between themselves) and will continue to change over time. While not completely accurate, the process they follow is like basic natural selection, but there are some bizarre and insidious twists that this process takes with multiple myeloma that makes it more complex than the simple evolutionary process you learned in high school.
The bottom line is that you are going to fight this battle of mutation regardless of whether you have an ASCT or not. People relapse with and without an ASCT and the mutations continue over time.
The fundamental question of whether you have an ASCT or not is a very personal one and one which you and your husband will need to make for yourselves. You might find this thread to be of help. https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html#p7717
You will find the entire spectrum of opinions on this site wrt ASCTs. You will find those that have done well by ASCTs...as well as those that have not done so well and relapse just a few months after the ASCT. Everyone is different. Some recover in months, others take significantly longer to recover and/or never fully recover.
I have personally come to the conclusion that I can likely be as successful (if not more) by just pursuing a well thought out chemo-only regime without the use of ASCT, when the time comes for me to start treatment (I am smoldering right now, but I'm on a trajectory to become symptomatic). QOL of life for me is paramount and I am just unwilling to go through all the issues and risks associated with an ASCT. ASCTs used to be pretty much the only game in town. But with the advent of novel agents and new chemo regimes, that game has changed and patients are now faced with the tough and very personal choice of whether to pursue an ASCT or not. In any case, I respect those that choose to move forward with an ASCT and those that don't.
Regarding the use of curcumin, I have found that it has not done anything to alter the negative progression of my numbers so far. But at least one person (also smoldering) I've talked to has had success with curucumin and antioxidants. However, it took about a year for him to start seeing the positive results. I'm only a few months into my curcumin regime and recently switched to a new and different type of curcumin preparation, so we will see what happens. And of course, you will find folks who swear by the use of curcumin.
I'm still quietly hoping that these natural methods will kick in with a positive effect before I become symptomatic or one of my markers goes sufficiently south. But I'm also realistic and there is no denying the deteriorating trend lines of my current markers. So, I am also preparing for chemo treatment and analyzing my options for chemo while religiously taking my supplements, working out and eating right.
As far as maintenance chemo therapy in a post ASCT environment, I will let others that have gone through an ASCT comment on their experience and insights.
Best of luck to you.
The bottom line is that you are going to fight this battle of mutation regardless of whether you have an ASCT or not. People relapse with and without an ASCT and the mutations continue over time.
The fundamental question of whether you have an ASCT or not is a very personal one and one which you and your husband will need to make for yourselves. You might find this thread to be of help. https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html#p7717
You will find the entire spectrum of opinions on this site wrt ASCTs. You will find those that have done well by ASCTs...as well as those that have not done so well and relapse just a few months after the ASCT. Everyone is different. Some recover in months, others take significantly longer to recover and/or never fully recover.
I have personally come to the conclusion that I can likely be as successful (if not more) by just pursuing a well thought out chemo-only regime without the use of ASCT, when the time comes for me to start treatment (I am smoldering right now, but I'm on a trajectory to become symptomatic). QOL of life for me is paramount and I am just unwilling to go through all the issues and risks associated with an ASCT. ASCTs used to be pretty much the only game in town. But with the advent of novel agents and new chemo regimes, that game has changed and patients are now faced with the tough and very personal choice of whether to pursue an ASCT or not. In any case, I respect those that choose to move forward with an ASCT and those that don't.
Regarding the use of curcumin, I have found that it has not done anything to alter the negative progression of my numbers so far. But at least one person (also smoldering) I've talked to has had success with curucumin and antioxidants. However, it took about a year for him to start seeing the positive results. I'm only a few months into my curcumin regime and recently switched to a new and different type of curcumin preparation, so we will see what happens. And of course, you will find folks who swear by the use of curcumin.
I'm still quietly hoping that these natural methods will kick in with a positive effect before I become symptomatic or one of my markers goes sufficiently south. But I'm also realistic and there is no denying the deteriorating trend lines of my current markers. So, I am also preparing for chemo treatment and analyzing my options for chemo while religiously taking my supplements, working out and eating right.
As far as maintenance chemo therapy in a post ASCT environment, I will let others that have gone through an ASCT comment on their experience and insights.
Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: SCT questions ...
My husband was dx 2 months after his 40 bday in Aug 2007. He did 4 rounds of thalidomide/dex then had 2 auto SCT, March 08 and July 08. He has been in remission since April 08 with no maintenance. Everyone is different but my husband was never sick (he has an iron stomach apparently) and his only complaint thru both SCT's was severe heartburn. He was dx stage 3. Good luck with everything.
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TConklin
Re: SCT questions ...
Hi Ulrika,
There is no sequence of myeloma therapy that has shown a definitive overall survival advantage for myeloma patients in a randomized clinical trial. Myeloma patients are given treatment options based on their Doctors opinion and the Doctors interpretation of the available data. In the non-allo transplant setting a patient is likely to end up using all of the available treatment options due to multiple relapses. It is really just a matter of do you want to use high dose alkylator therapy (auto "transplant") or alkylators in lower doses (melphalan tablets, bendamustine, Cytoxan) and do you want to use the alkylator early in disease course or later. Patients in the non-allo setting are likely to ultimately end up on never ending cycles of novel agents no matter what therapy route they choose.
For a good illustration of my point above check out the following excellent blogs. There is a blog called Matt vs Myeloma. Matt is a patient that goes to Dr. James Berenson who is considered to be one of the less aggressive Doctors. He used low dose alkylator therapy (bendamustine) as part of his induction therapy. He currently is on maintenance therapy with Velcade and Dex. Nick;s Myeloma Blog is written by a patient that went to UAMS which is considered on the aggressive side of the treatment spectrum. He had two high doses of alkylator therapy (auto "transplant") early in his therapy. Nick is currently on continuous therapy with Velcade. Pat Killingswoth started at Mayo and used Rev/Dex for 5 years or so. He did an auto at first relapse and is currently on Velcade/DEX therapy. All seem to have a similar side effect profile. Notice a pattern developing? No matter where you go you end up using an alkylator in a high or low dose at some point during your treatment and the patient ultimately ends up on continuous therapy with a novel agent. It is really just a matter of what sequence/dosage you are most comfortable with. All 3 of the patients appear to have a similar quality of life.
Mark
There is no sequence of myeloma therapy that has shown a definitive overall survival advantage for myeloma patients in a randomized clinical trial. Myeloma patients are given treatment options based on their Doctors opinion and the Doctors interpretation of the available data. In the non-allo transplant setting a patient is likely to end up using all of the available treatment options due to multiple relapses. It is really just a matter of do you want to use high dose alkylator therapy (auto "transplant") or alkylators in lower doses (melphalan tablets, bendamustine, Cytoxan) and do you want to use the alkylator early in disease course or later. Patients in the non-allo setting are likely to ultimately end up on never ending cycles of novel agents no matter what therapy route they choose.
For a good illustration of my point above check out the following excellent blogs. There is a blog called Matt vs Myeloma. Matt is a patient that goes to Dr. James Berenson who is considered to be one of the less aggressive Doctors. He used low dose alkylator therapy (bendamustine) as part of his induction therapy. He currently is on maintenance therapy with Velcade and Dex. Nick;s Myeloma Blog is written by a patient that went to UAMS which is considered on the aggressive side of the treatment spectrum. He had two high doses of alkylator therapy (auto "transplant") early in his therapy. Nick is currently on continuous therapy with Velcade. Pat Killingswoth started at Mayo and used Rev/Dex for 5 years or so. He did an auto at first relapse and is currently on Velcade/DEX therapy. All seem to have a similar side effect profile. Notice a pattern developing? No matter where you go you end up using an alkylator in a high or low dose at some point during your treatment and the patient ultimately ends up on continuous therapy with a novel agent. It is really just a matter of what sequence/dosage you are most comfortable with. All 3 of the patients appear to have a similar quality of life.
Mark
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Mark
Re: SCT questions ...
Dear Ulrika,
How was the myeloma diagnosed? What were the symptoms and manifestations on lab testing and imaging? Stage 1 is a great start. Do you know if he had any high risk features on cytogenetic/FISH testing at diagnosis? Did he have his LDH checked at diagnosis? If so, do you know if it was normal or high?
I will do my best to do justice to your question after I have learned a bit more about your husband's disease.
Thanks!
Pete V.
How was the myeloma diagnosed? What were the symptoms and manifestations on lab testing and imaging? Stage 1 is a great start. Do you know if he had any high risk features on cytogenetic/FISH testing at diagnosis? Did he have his LDH checked at diagnosis? If so, do you know if it was normal or high?
I will do my best to do justice to your question after I have learned a bit more about your husband's disease.
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: SCT questions ...
Hi Ulrika,
You're asking a great question. I think the replies you've gotten so far give you a sense of how whether to get an auto SCT or not during initial treatment is very much an open question right now. I had the transplant in May, so I thought I might tell you how it went/is going for me, as one data point for you.
As background, I'm 59 and in good health except for the multiple myeloma. Before the transplant I had 3 cycles of induction therapy with Revlimid, Velcade, and Dex. I tolerated that well for the most part, although I do have some peripheral neuropathy from the Velcade. Not terrible, but annoying sometimes. That therapy moved my m-spike down from 2.0 to 0.3 and moved me from 15% plasma in my bone marrow to 0%.
I had my SCT on May 15, so tomorrow will be Day 60! At this point, I've been working half-time from home (I have a computer-related job that can be done from pretty much anywhere) for the past 3 weeks. I've been exercising everyday. I started walking as soon as I could. I started running on Day 45 (very slowly and just 2 or 3 miles), and have been on a couple of easy 10-mile bike rides with my wife over the past couple of weekends. I am feeling myself get stronger week by week with the exercising. I do still often get tired in the afternoons, and I am liberal with taking naps. I'm still being careful to not go out in crowds yet, and I'm following the low microbial diet. I'm trying to strike a reasonable balance in pushing for as normal a life as possible, but also be sensible in realizing that I still do have limitations. I'm sure all SCT patients go through this daily tradeoff as we recover.
So all in all, I think I'm doing well. My doctor told me before the transplant that I would still feel like I'd been run over by a bus when I got home, but it has not been anything like that for me. I think I will find out around Day 90 what the SCT did to my m-spike and bone marrow plasma numbers.
But I need to mention something that happened while I was in the hospital. On Day 8 I contracted an E. coli infection that got into my bloodstream. I went into septic shock, and ended up spending 3 days in the ICU (fun Memorial Day weekend!). Fortunately they were able to deal with the infection quickly, and I made through that experience "in one piece," as one nurse put it. The infection ended up delaying my stem cell engraftment by about 10 days, so I was in the hospital for 4+ weeks, not the expected 2-3 weeks. I mention this to make the point that unexpected stuff can happen with the SCT. I thought because I was in relatively good shape before the transplant that nothing major would happen to me, but I was wrong. There is risk involved with the procedure.
Good luck to you and your husband, both with your decision, and with whatever treatment path you embark on. Please keep us posted on how it goes.
Mike
You're asking a great question. I think the replies you've gotten so far give you a sense of how whether to get an auto SCT or not during initial treatment is very much an open question right now. I had the transplant in May, so I thought I might tell you how it went/is going for me, as one data point for you.
As background, I'm 59 and in good health except for the multiple myeloma. Before the transplant I had 3 cycles of induction therapy with Revlimid, Velcade, and Dex. I tolerated that well for the most part, although I do have some peripheral neuropathy from the Velcade. Not terrible, but annoying sometimes. That therapy moved my m-spike down from 2.0 to 0.3 and moved me from 15% plasma in my bone marrow to 0%.
I had my SCT on May 15, so tomorrow will be Day 60! At this point, I've been working half-time from home (I have a computer-related job that can be done from pretty much anywhere) for the past 3 weeks. I've been exercising everyday. I started walking as soon as I could. I started running on Day 45 (very slowly and just 2 or 3 miles), and have been on a couple of easy 10-mile bike rides with my wife over the past couple of weekends. I am feeling myself get stronger week by week with the exercising. I do still often get tired in the afternoons, and I am liberal with taking naps. I'm still being careful to not go out in crowds yet, and I'm following the low microbial diet. I'm trying to strike a reasonable balance in pushing for as normal a life as possible, but also be sensible in realizing that I still do have limitations. I'm sure all SCT patients go through this daily tradeoff as we recover.
So all in all, I think I'm doing well. My doctor told me before the transplant that I would still feel like I'd been run over by a bus when I got home, but it has not been anything like that for me. I think I will find out around Day 90 what the SCT did to my m-spike and bone marrow plasma numbers.
But I need to mention something that happened while I was in the hospital. On Day 8 I contracted an E. coli infection that got into my bloodstream. I went into septic shock, and ended up spending 3 days in the ICU (fun Memorial Day weekend!). Fortunately they were able to deal with the infection quickly, and I made through that experience "in one piece," as one nurse put it. The infection ended up delaying my stem cell engraftment by about 10 days, so I was in the hospital for 4+ weeks, not the expected 2-3 weeks. I mention this to make the point that unexpected stuff can happen with the SCT. I thought because I was in relatively good shape before the transplant that nothing major would happen to me, but I was wrong. There is risk involved with the procedure.
Good luck to you and your husband, both with your decision, and with whatever treatment path you embark on. Please keep us posted on how it goes.
Mike
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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: SCT questions ...
Thank you all so much for the replies! I am pretty settled with the decision my husband has made to go ahead with SCT but will feel better when we are post SCT... like next year!
My husband was diagnosed on the 20th of March this year with Monoclonal IgG Kappa :
IG 33.1
Kappa FLC 1010.0
(not sure if that is enough information)
I don't have copies of his bone marrow tests but have been told that he doesn't have the 13 deletion and isn't high risk. Apart from some tiredness and rib pain my husband had at diagnosis and has no other health issues (high blood pressure has been treated for many years though...)
My husband did complain of some kidney pain a couple of years ago but they didn't find anything and there were a couple of blood tests our GP said he would keep an eye on... something to do with his liver?
His mother was diagnosed in the same week with Myeloma as well.. what are the chances??!
On a side note... this is probably where some of my insecurities lie...
1. I know of people who were completely cured of their cancer without drugs or chemo (also know of a couple who tried a natural path and died very quickly! so not that confident without cancer treatment - well not at all really!)
2. my eldest daughter had 2 severe reactions to vaccinations and the first time when she was a baby the doctors admitted it was the vaccination that caused it; the recent one they still denied it after finding no infection and she reacted the evening after having her flu shot in the morning (she was admitted into hospital for nearly a week)... it has left me feeling some what cautious about trusting medical professionals - if I knew they were telling me the truth (they couldn't look me in the eye) I would have accepted that my daughter is sensitive and hey it happens but because to me it was like a cover up I thought what else aren't they telling me?
I feel kind of the same now about cancer treatment - what if it is more profit driven or fear of liability etc.
Ultimately I am so grateful that we do have one of the best hospitals in my opinion and very caring professionals helping us right now... I can't complain but I know the doubts nag me at times.
My husband was diagnosed on the 20th of March this year with Monoclonal IgG Kappa :
IG 33.1
Kappa FLC 1010.0
(not sure if that is enough information)
I don't have copies of his bone marrow tests but have been told that he doesn't have the 13 deletion and isn't high risk. Apart from some tiredness and rib pain my husband had at diagnosis and has no other health issues (high blood pressure has been treated for many years though...)
My husband did complain of some kidney pain a couple of years ago but they didn't find anything and there were a couple of blood tests our GP said he would keep an eye on... something to do with his liver?
His mother was diagnosed in the same week with Myeloma as well.. what are the chances??!
On a side note... this is probably where some of my insecurities lie...
1. I know of people who were completely cured of their cancer without drugs or chemo (also know of a couple who tried a natural path and died very quickly! so not that confident without cancer treatment - well not at all really!)
2. my eldest daughter had 2 severe reactions to vaccinations and the first time when she was a baby the doctors admitted it was the vaccination that caused it; the recent one they still denied it after finding no infection and she reacted the evening after having her flu shot in the morning (she was admitted into hospital for nearly a week)... it has left me feeling some what cautious about trusting medical professionals - if I knew they were telling me the truth (they couldn't look me in the eye) I would have accepted that my daughter is sensitive and hey it happens but because to me it was like a cover up I thought what else aren't they telling me?
I feel kind of the same now about cancer treatment - what if it is more profit driven or fear of liability etc.
Ultimately I am so grateful that we do have one of the best hospitals in my opinion and very caring professionals helping us right now... I can't complain but I know the doubts nag me at times.
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
7 posts
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