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Re: High risk myeloma? If so, please share your story.
Hi Mark! Thanks for the great info. Would you kind sharing where you had your allo? I want to investigate this option and, I agree, that it should be considered earlier in the process. Thanks again!!!
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High risk myeloma? If so, please share your story.
Hi Lizzie,
If you have noticed I try and not say who my doctor is. The reason for that is that I do not want to come off as "advertising" for a specific doctor. She is ideal for me but that may or may not be the case for another patient. I am also fortunate that I have multiple world class hospitals within a fairly short distance from where I live and did not have to travel for therapy.
What I think would be more helpful is to tell you how I would do it if I was diagnosed today. I had mentioned earlier that I ended up doing a tandem but that was not the original plan. My particular subtype goes into remission quicker than most patients but I would have likely lost my remission quickly. I would have preferred just doing induction to CR and than doing the allo since I was trying to use as little drugs as possible. My insurance company paid for a tandem auto - allo but not for induction to allo. I was not in a clinical trial. My conditioning was a standard one. I used a full dose (myeloablative like is used for an auto) of melphalan and 210 mg/m2 of fludarabine. I used a polyclonal antibody antithymocyte globulin (ATG). This is what ATG is used for.
" Inclusion of antithymocyte globulin in allogeneic stem cell transplantation protocols for patients with multiple myeloma may increase remission rates and at the same time prevent graft-versus-host disease with no increase of relapses."
http://www.haematologica.org/content/93/9/1343.full
I have seen various estimates of the chance of having extensive chronic GVHD of about 10% if using ATG. So there was a small chance I would have a problem with extensive cGVHD but I only had it for 1 month after I stopped my immunosuppressive drugs. The problem with extensive cGVHD is that they are not very good at treating it if you have it. Take note what Dr. Giralt says in this interview: He mentions that he can do a transplant that basically eliminated extensive cGVHD but it is difficult to treat if the patient has it. If you are as concerned about long term quality of life as I am it is wise to consider a transplant that uses that is designed to minimize your chance of getting cGVHD.
http://www.youtube.com/watch?v=6M1Pbrzvesc
The method Dr. Giralt mentions is this clinical trial.
http://www.mskcc.org/cancer-care/trial/10-050
Here is a paper from ASH 2013 that shows how many relapsed/refractory patients had chronic GVHD in this trial.
"Chronic GvHD was not observed in any pt."
https://myelomabeacon.org/resources/mtgs/ash2013/abs/2115/
Note that that this trial does use high dose chemo - this is no "mini". I am 99% certain that Robin Roberts was in this clinical trial. She has mentioned that she was in one and it is open to MDS patients. Dr. Giralt mentioned on GMA that GVHD has not been a problem for patients in the trial she was in. The advantage the patients in this trial have over what I did is that I had to use immunosuppressive drugs for 6 months after the transplant - these patients do not. Note that I could not have returned to a normal work schedule 8 months after the transplant. Ms. Roberts was back on a partial schedule (by her standards!) in 5. She is a "dynamic" person so I expected her to recover quickly. By all appearances she is back to her "old life". If I was newly diagnosed and saw how Ms. Roberts is doing I would definitely be checking out this clinical trial.
I also think the study SVBriggs was in is a great option as well. It uses less melphalan and fludarabine than I used and Velcade seems to do a great job of preventing chronic GVHD as well (8%).
"The cumulative incidence of grades 2-4 acute GVHD at day 100 was 41% (95% CI: 20 – 65) and the cumulative incidence of moderate to severe chronic GVHD at 1 year was 8.0% (95% CI: 0.0 – 29)."
https://myelomabeacon.org/resources/mtgs/ash2013/abs/3390/
What I would not do is a tandem auto - "mini" allo, While they can be effective in preventing relapse look at how long some of the patients are on immunosuppressive drugs/steroids. That is too high of a rate for me to consider. I did an allo to get off drugs so this method is not for me.
"In survivors, the probability of being on systemic immunosuppressive treatment for GVHD was 39% (CI: 27-52) at 5 years and 15% (CI: 4-42) at 10 years."
https://myelomabeacon.org/resources/mtgs/ash2013/abs/3353/
I hope that helps.
Mark
If you have noticed I try and not say who my doctor is. The reason for that is that I do not want to come off as "advertising" for a specific doctor. She is ideal for me but that may or may not be the case for another patient. I am also fortunate that I have multiple world class hospitals within a fairly short distance from where I live and did not have to travel for therapy.
What I think would be more helpful is to tell you how I would do it if I was diagnosed today. I had mentioned earlier that I ended up doing a tandem but that was not the original plan. My particular subtype goes into remission quicker than most patients but I would have likely lost my remission quickly. I would have preferred just doing induction to CR and than doing the allo since I was trying to use as little drugs as possible. My insurance company paid for a tandem auto - allo but not for induction to allo. I was not in a clinical trial. My conditioning was a standard one. I used a full dose (myeloablative like is used for an auto) of melphalan and 210 mg/m2 of fludarabine. I used a polyclonal antibody antithymocyte globulin (ATG). This is what ATG is used for.
" Inclusion of antithymocyte globulin in allogeneic stem cell transplantation protocols for patients with multiple myeloma may increase remission rates and at the same time prevent graft-versus-host disease with no increase of relapses."
http://www.haematologica.org/content/93/9/1343.full
I have seen various estimates of the chance of having extensive chronic GVHD of about 10% if using ATG. So there was a small chance I would have a problem with extensive cGVHD but I only had it for 1 month after I stopped my immunosuppressive drugs. The problem with extensive cGVHD is that they are not very good at treating it if you have it. Take note what Dr. Giralt says in this interview: He mentions that he can do a transplant that basically eliminated extensive cGVHD but it is difficult to treat if the patient has it. If you are as concerned about long term quality of life as I am it is wise to consider a transplant that uses that is designed to minimize your chance of getting cGVHD.
http://www.youtube.com/watch?v=6M1Pbrzvesc
The method Dr. Giralt mentions is this clinical trial.
http://www.mskcc.org/cancer-care/trial/10-050
Here is a paper from ASH 2013 that shows how many relapsed/refractory patients had chronic GVHD in this trial.
"Chronic GvHD was not observed in any pt."
https://myelomabeacon.org/resources/mtgs/ash2013/abs/2115/
Note that that this trial does use high dose chemo - this is no "mini". I am 99% certain that Robin Roberts was in this clinical trial. She has mentioned that she was in one and it is open to MDS patients. Dr. Giralt mentioned on GMA that GVHD has not been a problem for patients in the trial she was in. The advantage the patients in this trial have over what I did is that I had to use immunosuppressive drugs for 6 months after the transplant - these patients do not. Note that I could not have returned to a normal work schedule 8 months after the transplant. Ms. Roberts was back on a partial schedule (by her standards!) in 5. She is a "dynamic" person so I expected her to recover quickly. By all appearances she is back to her "old life". If I was newly diagnosed and saw how Ms. Roberts is doing I would definitely be checking out this clinical trial.
I also think the study SVBriggs was in is a great option as well. It uses less melphalan and fludarabine than I used and Velcade seems to do a great job of preventing chronic GVHD as well (8%).
"The cumulative incidence of grades 2-4 acute GVHD at day 100 was 41% (95% CI: 20 – 65) and the cumulative incidence of moderate to severe chronic GVHD at 1 year was 8.0% (95% CI: 0.0 – 29)."
https://myelomabeacon.org/resources/mtgs/ash2013/abs/3390/
What I would not do is a tandem auto - "mini" allo, While they can be effective in preventing relapse look at how long some of the patients are on immunosuppressive drugs/steroids. That is too high of a rate for me to consider. I did an allo to get off drugs so this method is not for me.
"In survivors, the probability of being on systemic immunosuppressive treatment for GVHD was 39% (CI: 27-52) at 5 years and 15% (CI: 4-42) at 10 years."
https://myelomabeacon.org/resources/mtgs/ash2013/abs/3353/
I hope that helps.
Mark
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Mark
Re: High risk myeloma? If so, please share your story.
Hi Mark! Yes, that is a tremendous help. Thank you!
Due to some chromosomal abnormalities I am supposedly more apt to shorter remissions. Being 43 and still considered high risk smoldering, I feel as though an allo is my best option. I understand that myeloma is treated more as a chronic condition, due to the number of therapeutic agents. But I'm not confident in relying on drugs to prolong my life.
One doc mentioned that an allo is like "pushing all your chips in". Which, of course, was very scary to hear. But then I've read of people having more than one allo, and being "young" and otherwise healthy I feel as though it's a safe option for me, as well as the only potentially curative option.
It's all very overwhelming. My local oncologist wanted me to begin treatment last week but I keep postponing because I want to make the right decision.
Your story gives me a lot of hope though. Thank you for sharing!
Due to some chromosomal abnormalities I am supposedly more apt to shorter remissions. Being 43 and still considered high risk smoldering, I feel as though an allo is my best option. I understand that myeloma is treated more as a chronic condition, due to the number of therapeutic agents. But I'm not confident in relying on drugs to prolong my life.
One doc mentioned that an allo is like "pushing all your chips in". Which, of course, was very scary to hear. But then I've read of people having more than one allo, and being "young" and otherwise healthy I feel as though it's a safe option for me, as well as the only potentially curative option.
It's all very overwhelming. My local oncologist wanted me to begin treatment last week but I keep postponing because I want to make the right decision.
Your story gives me a lot of hope though. Thank you for sharing!
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High risk myeloma? If so, please share your story.
Hi Lizzie,
I have to disagree with your doctor that you are "pushing all your chips in" if you do an early allo. Take note of this long tem study that discusses relapsed patients:
"An interesting observation is that despite the fact that a variety of treatments were administered following progression, OS after relapse/progression was significantly superior in the auto/RICallo group. The previously well-documented graft vs myeloma effect15,16 may persist in patients after auto/RICallo at progression and contribute to this difference. The use of DLI in a fraction of auto/RICallo patients may also play a role. The difference in clinical outcome was seen despite a higher frequency of additional autologous transplants performed in the auto group, while the effect of a difference in the use of new drugs could not be adequately analyzed."
http://bloodjournal.hematologylibrary.org/content/121/25/5055.long
Also note that Revlimid works better for allo patients than non-allo patients.
"The comparison between Auto and Allo patients has shown a benefit in terms of PFS and OS in favor of Len administered after AlloHSCT. This observation supports the hypothesis that Len is synergistic with the GVM effect. Since Len has a potent immunomodulatory effect, this can raise concerns about its use after AlloHSCT. A Dutch prospective study showed that the early administration of Len 10 mg daily after non-myeloablative Allo-HSCT induces late onset acute GVHD in a substantial proportion of patients, causing the premature discontinuation of the study. On the contrary, our retrospective study has shown that a later administration is feasible and safe, without an excess of GVHD, suggesting that a more mature immune system can better tolerate Len. Moreover, since in all cases dexamethasone was given in combination with Len, its immunosuppressive effect may have harnessed the Len-induced immune activation. In conclusion our study suggests that Len is particularly active after AlloHSCT, still retaining a favorable toxicity profile. "
https://ash.confex.com/ash/2011/webprogram/Paper43648.html
Take note that I did not use Revlimid at all up to this point. That is because my doctor was thinking long term and did not want me to start building up resistance to it. Doing an upfront allo does not mean you cannot use the drugs again - as the above study shows it can actually make them work better. An allo patient also has an additional immunotherapy (more infusions of donor cells called DLI's) that other patients do not have. I am very confident I could be successfully treated again if I relapse. As I mentioned before most myeloma doctors and local oncologists are not allo transplant experts.
Mark
I have to disagree with your doctor that you are "pushing all your chips in" if you do an early allo. Take note of this long tem study that discusses relapsed patients:
"An interesting observation is that despite the fact that a variety of treatments were administered following progression, OS after relapse/progression was significantly superior in the auto/RICallo group. The previously well-documented graft vs myeloma effect15,16 may persist in patients after auto/RICallo at progression and contribute to this difference. The use of DLI in a fraction of auto/RICallo patients may also play a role. The difference in clinical outcome was seen despite a higher frequency of additional autologous transplants performed in the auto group, while the effect of a difference in the use of new drugs could not be adequately analyzed."
http://bloodjournal.hematologylibrary.org/content/121/25/5055.long
Also note that Revlimid works better for allo patients than non-allo patients.
"The comparison between Auto and Allo patients has shown a benefit in terms of PFS and OS in favor of Len administered after AlloHSCT. This observation supports the hypothesis that Len is synergistic with the GVM effect. Since Len has a potent immunomodulatory effect, this can raise concerns about its use after AlloHSCT. A Dutch prospective study showed that the early administration of Len 10 mg daily after non-myeloablative Allo-HSCT induces late onset acute GVHD in a substantial proportion of patients, causing the premature discontinuation of the study. On the contrary, our retrospective study has shown that a later administration is feasible and safe, without an excess of GVHD, suggesting that a more mature immune system can better tolerate Len. Moreover, since in all cases dexamethasone was given in combination with Len, its immunosuppressive effect may have harnessed the Len-induced immune activation. In conclusion our study suggests that Len is particularly active after AlloHSCT, still retaining a favorable toxicity profile. "
https://ash.confex.com/ash/2011/webprogram/Paper43648.html
Take note that I did not use Revlimid at all up to this point. That is because my doctor was thinking long term and did not want me to start building up resistance to it. Doing an upfront allo does not mean you cannot use the drugs again - as the above study shows it can actually make them work better. An allo patient also has an additional immunotherapy (more infusions of donor cells called DLI's) that other patients do not have. I am very confident I could be successfully treated again if I relapse. As I mentioned before most myeloma doctors and local oncologists are not allo transplant experts.
Mark
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Mark
Re: High risk myeloma? If so, please share your story.
Hi Mark! I keep running into your posts on other threads and every time I feel a little more hopeful! I know you don't want to advertise your doc, but could we talk offline about your hospital or a clinical trial!? I don't understand why docs seem so adverse to allo? I haven't started treatment yet. We've been trying to see specialists ... which is utterly overwhelming. Next week I'm off to Little Rock. I already know I'm high risk smoldering, but with several high risk chromosomal abnormalities.
Being 43 and otherwise "healthy", I want to be aggressive, but smart, in my decision making. Even if I could speak with you about specialists..... That would be great! I've been to NIH AND Dana- Farber. Did not feel as though the trip to Dana Farber was worth it! I'm also thinking about Mayo or Sloan Kettering? Wow ... sorry I'm babbling! I'm so grateful to people like you and the others on this site who help navigate thru these uncertainties. My friends and family want so badly to help, but I think "living" this is the only true understanding. So, thank you for being so willing to share your experience and knowledge.
Being 43 and otherwise "healthy", I want to be aggressive, but smart, in my decision making. Even if I could speak with you about specialists..... That would be great! I've been to NIH AND Dana- Farber. Did not feel as though the trip to Dana Farber was worth it! I'm also thinking about Mayo or Sloan Kettering? Wow ... sorry I'm babbling! I'm so grateful to people like you and the others on this site who help navigate thru these uncertainties. My friends and family want so badly to help, but I think "living" this is the only true understanding. So, thank you for being so willing to share your experience and knowledge.
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High risk myeloma? If so, please share your story.
Next month will be Dad's fourth year battle with multiple myeloma. He is p53d. He had transplant in Sept 2013 but only achieved VGPR. He's enjoying life. We don't know when will he relapse, but last reading still shows that his numbers were stable. He may have to do maintenance therapy in June, but until then, who cares? There's definitely hope!
Re: High risk myeloma? If so, please share your story.
As if the shock of the myeloma diagnosis wasn't enough of a shock, I the find out I'm high risk with 17p deletion. I started reading up about it and the literature was even more depressing. A 2-3 year survival kept popping up. But my doctor said something that stuck with me every day- "Statistics don't apply at the individual level" ... and these stories sure prove that!!
Thankfully I was diagnosed stage 1 (kappa light chain myeloma). Only bone involvement was plasmacytoma in jaw, which had dissolved part of jaw bone under two molars. It didn't hurt but molars were getting loose. That was April 2014 at 53 years old. Immediately I went into clinical trial for newly diagnosed high risk patients (elotuzumab, Revlimid, Velcade, and dex), No transplant yet. Oddly, both serum and urine immunofixation became positive, but too small to quantify. It's been like that for over a year. Kappa light chains have been in normal range since early in induction therapy. I've been on maintenance therapy in the trial since the end of induction (same drugs, but now just 15 mg of Revlimid).
I don't know what all this means, but what I do know is that I feel fantastic, I walk every day, hike on weekends when I can, work full time and love life!! I drink dandelion tea, take turmeric, eat organic (lots of veggie / fruit smoothies) and stay positive. I listen to Dr Bernie Segal books on tape as well as Bellaruth Naparstek Guided Imagery. I don't take anything for granted and I sure don't procrastinate anymore.
P.S. - I'm so glad the oral surgeon didn't remove my molars. The chemo dissolved the tumor within 2 weeks and my molars tightened up in the gums and the jaw bone eventually filled in on it's own – maybe with a little help from Zometa.
Thankfully I was diagnosed stage 1 (kappa light chain myeloma). Only bone involvement was plasmacytoma in jaw, which had dissolved part of jaw bone under two molars. It didn't hurt but molars were getting loose. That was April 2014 at 53 years old. Immediately I went into clinical trial for newly diagnosed high risk patients (elotuzumab, Revlimid, Velcade, and dex), No transplant yet. Oddly, both serum and urine immunofixation became positive, but too small to quantify. It's been like that for over a year. Kappa light chains have been in normal range since early in induction therapy. I've been on maintenance therapy in the trial since the end of induction (same drugs, but now just 15 mg of Revlimid).
I don't know what all this means, but what I do know is that I feel fantastic, I walk every day, hike on weekends when I can, work full time and love life!! I drink dandelion tea, take turmeric, eat organic (lots of veggie / fruit smoothies) and stay positive. I listen to Dr Bernie Segal books on tape as well as Bellaruth Naparstek Guided Imagery. I don't take anything for granted and I sure don't procrastinate anymore.
P.S. - I'm so glad the oral surgeon didn't remove my molars. The chemo dissolved the tumor within 2 weeks and my molars tightened up in the gums and the jaw bone eventually filled in on it's own – maybe with a little help from Zometa.
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Janet1520
37 posts
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