I have been in remission for over a year with no traceable M-spike. It took about a year of aggressive RVD treatment to reach that point.
Yesterday, I received news that my M-spike is at .2 and the disease has returned. My decision now is whether to go right for the stem cell transplant or resume the therapy that worked before.
By the way, I was on maintenance of Revlimid (10mg) and Zometa during the remission time. I am a 60 year old male who has stored his stem cells and has no other symptoms at this time. I would be interested in advice on what I should do going forward. Has anyone face this situation, and, if so, what advice did you get, what did you do, and how did it work out?
Thanks.
Forums
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blustein - Name: Richard Blustein
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: return of m-spike
Hi blustein22,
Could you provide a bit more background about your treatment?
For example, have you received a stem cell transplant? It seems like you have, since you say you've stored your stem cells, but it would be useful to know for certain whether it's the case.
Also, did you have the RVD therapy before you got a stem cell transplant, or afterwards. If you were on it afterwards, what sort of treatment did you receive prior to your stem cell transplant?
Thanks!
Could you provide a bit more background about your treatment?
For example, have you received a stem cell transplant? It seems like you have, since you say you've stored your stem cells, but it would be useful to know for certain whether it's the case.
Also, did you have the RVD therapy before you got a stem cell transplant, or afterwards. If you were on it afterwards, what sort of treatment did you receive prior to your stem cell transplant?
Thanks!
Re: return of m-spike
Dear blustein22,
As a first step, I would repeat the testing to verify the result to feel more confident that the disease is in fact progressing. This will also give you more information about the pace of progression, which could influence which direction you decide to take next. If repeat testing verifies disease progression, especially if it is brisk disease progression, I think an autologous stem cell transplant should be strongly considered, especially if you are otherwise healthy and can tolerate a high-dose therapy approach. You can potentially go back to the previous therapy, but I would expect the durability of the remission to be shorter than it was the first go around, especially in light of the fact that, if the progression is confirmed, the progression has occurred in the face of lenalidomide maintenance therapy.
I hope this helps. Best of luck to you!
Pete V.
As a first step, I would repeat the testing to verify the result to feel more confident that the disease is in fact progressing. This will also give you more information about the pace of progression, which could influence which direction you decide to take next. If repeat testing verifies disease progression, especially if it is brisk disease progression, I think an autologous stem cell transplant should be strongly considered, especially if you are otherwise healthy and can tolerate a high-dose therapy approach. You can potentially go back to the previous therapy, but I would expect the durability of the remission to be shorter than it was the first go around, especially in light of the fact that, if the progression is confirmed, the progression has occurred in the face of lenalidomide maintenance therapy.
I hope this helps. Best of luck to you!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: return of m-spike
Thank you very much for your response.
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blustein - Name: Richard Blustein
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: return of m-spike
Sorry Ricardo I did not see your question. No I have not had a stem cell transplant although my stem cells have been stored. I certainly will consider the transplant at this time or when my m-spike exceeds a 1.0.
Thanks for your interest.
Thanks for your interest.
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blustein - Name: Richard Blustein
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: return of m-spike
To anyone who is considering a "stem cell transplant"!!! I had a SCT in May 2011. This is
Jan of 2012 and I just received news that my M Spike has gone up. I personally will NEVER even consider a stem cell trans again. I was to sick for months and just now feel good, have been working out and feeling well, so no I won't go there again. Plus and a little plus, I lost all my hair, for me this was very disturbing. People out there are idoits and stare at bald women, and it kinda hurts, even though you know that people are just plain unaware sometimes that it could be them in my shoes. Oh Well...
I'm just saying, if stem cell transplants were a garenett that the multiple myeloma would be gone, then yes do it, but there is no for sure in this disease.
Thanks
RA
Jan of 2012 and I just received news that my M Spike has gone up. I personally will NEVER even consider a stem cell trans again. I was to sick for months and just now feel good, have been working out and feeling well, so no I won't go there again. Plus and a little plus, I lost all my hair, for me this was very disturbing. People out there are idoits and stare at bald women, and it kinda hurts, even though you know that people are just plain unaware sometimes that it could be them in my shoes. Oh Well...
I'm just saying, if stem cell transplants were a garenett that the multiple myeloma would be gone, then yes do it, but there is no for sure in this disease.
Thanks
RA
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RoseAnne Woodall
Re: return of m-spike
Hi RoseAnne
I agree with you about SCT.
They have been doing it for over 20 years YET, the first thing they tell you after diagnosis is multiple myeloma myeloma is incurable. I decline ANY 20plus therapy that has not shown to change this disease from incurable.
I am like WTF? you want me do do WHAT? And this is STILL incurable? HELL NO!!
Just my 2 cent.s
PS....on steroids
I agree with you about SCT.
They have been doing it for over 20 years YET, the first thing they tell you after diagnosis is multiple myeloma myeloma is incurable. I decline ANY 20plus therapy that has not shown to change this disease from incurable.
I am like WTF? you want me do do WHAT? And this is STILL incurable? HELL NO!!
Just my 2 cent.s
PS....on steroids
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: SCT
My wife was diagnosed with multiple myeloma two years ago. Though the doctor did not actually tell us (and we did not ask) what stage she was in when it was diagnosed he was emphatic to start treatment immediately, which she did.
Her care was transferred to the Cleveland Clinic. Within 9 months of chemo her doctor recommended the autologuous SCT. That was in March 2011. It was a miserable treatment for her. She was exhausted, worn out, lost her hair and was basically feeling hopeless. Her stay in the hospital was three weeks. In this time she was awakened by her nurses every 4 hours for tests. Her stool and urine samples had to be analyzed frequently which required her to do her business in a plastic container called a 'hat'. She hated doing it and this caused severe constipation.
When she got home her immune system was practically non-existent and she had to be extremely careful of catching anything. She was basically in bed for two weeks, then somehow caught pneumonia. This kept her on her back for another two weeks. Eventually she began to improve.
Today she is still on maintenance and I can tell it is wearing on her. Twice a week she has to get intravenous chemo. Then she is always getting test after test. She is wearing thin of the constant poking, probing and jabbing. As I write this she is in the shower at 7:40 AM just to get in the the car and drive an hour to Cleveland for another round of chemo, the second treatment this week.
Recently they put her on thalidomide and we are concerned of the side effects one of which is blood clots. We are very grateful for the support she has received from the American Cancer Society, the Cleveland Clinic and the multiple myeloma community in general. Yet, she is considering alternative, non-chemo regimen because she simply is becoming worn out and concerned the drugs side effects may be lethal.
Her care was transferred to the Cleveland Clinic. Within 9 months of chemo her doctor recommended the autologuous SCT. That was in March 2011. It was a miserable treatment for her. She was exhausted, worn out, lost her hair and was basically feeling hopeless. Her stay in the hospital was three weeks. In this time she was awakened by her nurses every 4 hours for tests. Her stool and urine samples had to be analyzed frequently which required her to do her business in a plastic container called a 'hat'. She hated doing it and this caused severe constipation.
When she got home her immune system was practically non-existent and she had to be extremely careful of catching anything. She was basically in bed for two weeks, then somehow caught pneumonia. This kept her on her back for another two weeks. Eventually she began to improve.
Today she is still on maintenance and I can tell it is wearing on her. Twice a week she has to get intravenous chemo. Then she is always getting test after test. She is wearing thin of the constant poking, probing and jabbing. As I write this she is in the shower at 7:40 AM just to get in the the car and drive an hour to Cleveland for another round of chemo, the second treatment this week.
Recently they put her on thalidomide and we are concerned of the side effects one of which is blood clots. We are very grateful for the support she has received from the American Cancer Society, the Cleveland Clinic and the multiple myeloma community in general. Yet, she is considering alternative, non-chemo regimen because she simply is becoming worn out and concerned the drugs side effects may be lethal.
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benandliz
Re: return of m-spike
Dear All,
It seems like many of you have had pretty bad experiences with the SCT. Personally, I was very grateful for the treatment and would not hesitate to do it again. After 1 1/2 years of constant treatment (RVD only worked for 6 months, followed by Cytoxan/Velcade, then Thalidomide, then two rounds of VDT-PACE in the hospital just to get my numbers low enough for the SCT to be effective), the SCT gave me the best partial remission I had ever had. It was all out-patient, so I was very comfortable and had only about a week of misery, a small price to pay.
During the three months following the procedure, I felt well enough to take two big trips and enjoyed nice QOL before beginning a second transplant, a mini-haplo allogeneic using my brother's cells. My doctor definitely felt I needed a new immune system in order to keep the disease at bay. The second transplant was actually easier than the first; the drugs used were geared toward suppressing my immune system and were much easier to tolerate. It was still out-patient, and I lived across the street from the hospital for about two months. I have been home for about 3 months now, and I haven't felt this good for two years.
My m-spike has come down much further, and we are hopeful it will reach CR as my new immune system takes over, but even if it doesn't, I feel strongly that this was the best option for me. My doctor does not want to put me on maintenance therapy so that the new immune system can work more effectively, so for the first time I feel well enough to pursue nutritional treatments and take care of my family properly. Even if this remission is short-lived, it was worth all that I had to go through to get here. It has been a priceless gift for my family. Take care, Dana
P.S. I was diagnosed at 43 and am 45 now; age probably does make a difference.
It seems like many of you have had pretty bad experiences with the SCT. Personally, I was very grateful for the treatment and would not hesitate to do it again. After 1 1/2 years of constant treatment (RVD only worked for 6 months, followed by Cytoxan/Velcade, then Thalidomide, then two rounds of VDT-PACE in the hospital just to get my numbers low enough for the SCT to be effective), the SCT gave me the best partial remission I had ever had. It was all out-patient, so I was very comfortable and had only about a week of misery, a small price to pay.
During the three months following the procedure, I felt well enough to take two big trips and enjoyed nice QOL before beginning a second transplant, a mini-haplo allogeneic using my brother's cells. My doctor definitely felt I needed a new immune system in order to keep the disease at bay. The second transplant was actually easier than the first; the drugs used were geared toward suppressing my immune system and were much easier to tolerate. It was still out-patient, and I lived across the street from the hospital for about two months. I have been home for about 3 months now, and I haven't felt this good for two years.
My m-spike has come down much further, and we are hopeful it will reach CR as my new immune system takes over, but even if it doesn't, I feel strongly that this was the best option for me. My doctor does not want to put me on maintenance therapy so that the new immune system can work more effectively, so for the first time I feel well enough to pursue nutritional treatments and take care of my family properly. Even if this remission is short-lived, it was worth all that I had to go through to get here. It has been a priceless gift for my family. Take care, Dana
P.S. I was diagnosed at 43 and am 45 now; age probably does make a difference.
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dana
Re: return of m-spike
Hi All! My experience with autogenic SCT was somewhere in between what you describe, Benandiz and Dana. Although I did not enjoy the tiredness, sickness and even baldness, did get thru to a return to health for which I am truly grateful. It's true you just can't get any rest in the hospital....and at the time when you are so exhausted anyhow! ....
I tell my husband and male friends who have 'male pattern baldness', that I now know what they have been going thru....having always to wear hats in winter, etc. ...my hair at least came back!
Somewhere during a year of maintenance chemo on Revlimid, low dose, which was taken orally, with no steroids either, I got to a point of remission, and am now 'drug free', and that is a good space to be in. I think that thalidomide has worse neuropathy than what you get with Revlimid, although this is just a subjective opinion. I also had to take lo-dose aspirin, to prevent blood clots, although of course many patients needed the stronger heparin type of drug. The nurse warned me, and I forgot, to take a stomach protecting type of med also. After some weeks on lo-dose aspirin, I had heartburn which caused a lot of coughing...that cleared up immediately after I took the stomach protector (am not always the best patient really, tend to resist treatments sometimes...).
We started taking trips more often in the last couple of years, since having myeloma is one big 'wake up call' to the fact that our health may not always be good. However, we are basically anchored here in a city which has a great cancer centre...only a fifteen minute drive away..which helps a lot too.
Hope youR wife is feeling a whole lot better soon, Bernandiz, and that spring brings a return to better energy and good health.
I tell my husband and male friends who have 'male pattern baldness', that I now know what they have been going thru....having always to wear hats in winter, etc. ...my hair at least came back!
Somewhere during a year of maintenance chemo on Revlimid, low dose, which was taken orally, with no steroids either, I got to a point of remission, and am now 'drug free', and that is a good space to be in. I think that thalidomide has worse neuropathy than what you get with Revlimid, although this is just a subjective opinion. I also had to take lo-dose aspirin, to prevent blood clots, although of course many patients needed the stronger heparin type of drug. The nurse warned me, and I forgot, to take a stomach protecting type of med also. After some weeks on lo-dose aspirin, I had heartburn which caused a lot of coughing...that cleared up immediately after I took the stomach protector (am not always the best patient really, tend to resist treatments sometimes...).
We started taking trips more often in the last couple of years, since having myeloma is one big 'wake up call' to the fact that our health may not always be good. However, we are basically anchored here in a city which has a great cancer centre...only a fifteen minute drive away..which helps a lot too.
Hope youR wife is feeling a whole lot better soon, Bernandiz, and that spring brings a return to better energy and good health.
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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
19 posts
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