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What was your treatment at Arkansas (UAMS)?
I keep reading all of the news and stories about "cure" from Arkansas. Has anyone on here been treated at UAMS?
Re: What was your treatment at Arkansas (UAMS)?
Hi Hopeful27,
You may want to try Nick's Myeloma Blog. I consider Nick the best informed patient that has been treated at UAMS. Use the search function here at the Beacon forum as well. We have had many discussions about UAMS. Also, the excellent Beacon columnist Sean Murray is currently treated there and has been in CR for 4 or 5 years. His columns indicate he is very satisfied with the care he has received there.
Generally speaking about 10% or so of the patients that do autos do not relapse. Some studies show a plateau at around 12 years of continuous remission. A recent UAMS press release stated:
"Based on 25-year follow up of patients enrolled in the first “total therapy” clinical trial at the institute, a cure plateau of 15 percent has been firmly established."
https://myelomabeacon.org/pr/2014/04/22/uams-mirt-gareth-morgan-director/
Two peer reviewed studies from PubMed from other centers.
"Responses were clustered in 3 main categories, ie, CR, nCR + VGPR + PR, and SD. The respective 10-year PFS and OS values were 58% and 70% for CR, 15% and 18% for nCR + VGPR + PR, and 0% and 0% for SD."
"The achievement of depth and prolonged response represents the most important prognostic factor. The relapse rate is low for patients in CR after 10 years of follow-up, possibly signifying a cure."
http://www.ncbi.nlm.nih.gov/pubmed/24417912
"A landmark study found a plateau phase in OS after 11 years; 35% patients in the CR group and 11% in the nCR+VGPR+PR group are alive at 17 years; 2 cases had relapsed in the nCR+VGPR+PR group. In conclusion, multiple myeloma achieving CR after autologous stem cell transplantation is a central prognostic factor. The relapse rate is low in patients with > 11 years of follow-up, possibly signifying a cure for patients in CR."
http://www.ncbi.nlm.nih.gov/pubmed/21482708
Mark
You may want to try Nick's Myeloma Blog. I consider Nick the best informed patient that has been treated at UAMS. Use the search function here at the Beacon forum as well. We have had many discussions about UAMS. Also, the excellent Beacon columnist Sean Murray is currently treated there and has been in CR for 4 or 5 years. His columns indicate he is very satisfied with the care he has received there.
Generally speaking about 10% or so of the patients that do autos do not relapse. Some studies show a plateau at around 12 years of continuous remission. A recent UAMS press release stated:
"Based on 25-year follow up of patients enrolled in the first “total therapy” clinical trial at the institute, a cure plateau of 15 percent has been firmly established."
https://myelomabeacon.org/pr/2014/04/22/uams-mirt-gareth-morgan-director/
Two peer reviewed studies from PubMed from other centers.
"Responses were clustered in 3 main categories, ie, CR, nCR + VGPR + PR, and SD. The respective 10-year PFS and OS values were 58% and 70% for CR, 15% and 18% for nCR + VGPR + PR, and 0% and 0% for SD."
"The achievement of depth and prolonged response represents the most important prognostic factor. The relapse rate is low for patients in CR after 10 years of follow-up, possibly signifying a cure."
http://www.ncbi.nlm.nih.gov/pubmed/24417912
"A landmark study found a plateau phase in OS after 11 years; 35% patients in the CR group and 11% in the nCR+VGPR+PR group are alive at 17 years; 2 cases had relapsed in the nCR+VGPR+PR group. In conclusion, multiple myeloma achieving CR after autologous stem cell transplantation is a central prognostic factor. The relapse rate is low in patients with > 11 years of follow-up, possibly signifying a cure for patients in CR."
http://www.ncbi.nlm.nih.gov/pubmed/21482708
Mark
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Mark
Re: What was your treatment at Arkansas (UAMS)?
Hi Mark,
Thank you so much for the advice ... which I will definitely look into! Even though I have only recently joined this forum, you seem to be very knowledgeable. Did you have an allo or mini allo transplant (sorry I think I read that somewhere?) due to aggressive myeloma? If you weren't aggressive, would you opt for postponing transplant, tandem, or a single? Do you have any other advice for good resources that are factual and not over exaggerated, biased, etc.?
Thanks.
I know there is no simple answer but I am so lost.
Thank you so much for the advice ... which I will definitely look into! Even though I have only recently joined this forum, you seem to be very knowledgeable. Did you have an allo or mini allo transplant (sorry I think I read that somewhere?) due to aggressive myeloma? If you weren't aggressive, would you opt for postponing transplant, tandem, or a single? Do you have any other advice for good resources that are factual and not over exaggerated, biased, etc.?
Thanks.
I know there is no simple answer but I am so lost.
Re: What was your treatment at Arkansas (UAMS)?
Hi Hopeful27,
I used myeloablative (not a mini) conditioning. I used the same drug (melphalan) that is used for an auto and a high dose of a drug called fludarabine which is not commonly used for myeloma patients but is a common drug used prior to allo transplant. A "mini" allo or an allo RIC (reduced intensity conditioning) is typically an attempt to be able to use immunotherapy on older patients. Other than the "little high risk myeloma thing" I was healthy prior to diagnosis so I preferred the full allo because my goal of therapy was cure and I do not think I would get much argument that a full allo in first complete response has a better chance of keeping a patient in remission long term than any other therapy.
I would have done an allo in first CR even if I was a standard risk patient. The reason is that I would not be comfortable taking long cycles of IMIDs and proteasome inhibitors as the long term side effects of taking these drugs continuously is unknown. The only therapy that studies showed as having a chance to get my "old life" back was allo transplant. It has accomplished that. Only time will tell if my donors immune system has cured me of myeloma.
There was a great post here this AM by a patient whose wife unfortunately was diagnosed with CML (Chronic myeloid leukemia).
"I"m already used to insane pricing as my wife has a rare for her age case of leukemia which requires life-long TKI chemo treatement (1 pill per day at approx $400 per day) - she must take the oral chemo for life to keep her BCR-ABL: cancer causing chromosome at bay.
The fact that she must take this forever and her condition is not curable (save for a transplant which is very risky and not likely) - the TKI chemo results in very bad side effects on a regular basis which she's been diagnosed / treated for about 1.5 yrs and the thought that she must endure the treatment for life isn't very pleasant (causes fever , nausea, bone pain) and also interferes with her white cell production as well as functioning of platelets (her platelet counts are ok at this time but she bruises like crazy, the ANC drops under 1,000 at times, she keeps obtaining UTI's and other infections - proteus and other items she has never had until now) .
She must take the TKI chemo agent for life - until the cancer cells mutate at which time we pray there is a new option to handle mutations (one product, ponatinib, does handle the most common mutation but it was pulled off the market after several deaths and is now available as a last resort for patients failing other TKI chemo's - it's risky with the many associated blood clots / strokes, but the alternative is the leukemia certainly ...) ."
https://myelomabeacon.org/forum/the-cost-of-revlimid-what-do-you-pay-t123-100.html
I would not want to live life like that if I had the chance to be in a long term drug free remission. An incredibly special person (my donor) gave me an opportunity to not have to live like that. I would do an allo even if I was a standard risk patient. The diagnosis for a newly diagnosed standard risk myeloma patient I believe is in the area of 10 years or so with drug/autos. IMO that is a not a good diagnosis for someone in their early 40's so I wanted to do an allo. An allo is not for all young patients but it was an easy decision for this young patient to do one.
IMO for information you should do searches here on the Beacon. The summaries they do on the studies are excellent and patients without a scientific background like me can understand them. They also have all the myeloma abstracts presented at 2013 ASH here. You can also go and do searches on PubMed, older ASH abstracts on their site, and abstracts from ASCO. They are peer reviewed studies/papers meaning that other doctors reviewed the papers.
Mark
I used myeloablative (not a mini) conditioning. I used the same drug (melphalan) that is used for an auto and a high dose of a drug called fludarabine which is not commonly used for myeloma patients but is a common drug used prior to allo transplant. A "mini" allo or an allo RIC (reduced intensity conditioning) is typically an attempt to be able to use immunotherapy on older patients. Other than the "little high risk myeloma thing" I was healthy prior to diagnosis so I preferred the full allo because my goal of therapy was cure and I do not think I would get much argument that a full allo in first complete response has a better chance of keeping a patient in remission long term than any other therapy.
I would have done an allo in first CR even if I was a standard risk patient. The reason is that I would not be comfortable taking long cycles of IMIDs and proteasome inhibitors as the long term side effects of taking these drugs continuously is unknown. The only therapy that studies showed as having a chance to get my "old life" back was allo transplant. It has accomplished that. Only time will tell if my donors immune system has cured me of myeloma.
There was a great post here this AM by a patient whose wife unfortunately was diagnosed with CML (Chronic myeloid leukemia).
"I"m already used to insane pricing as my wife has a rare for her age case of leukemia which requires life-long TKI chemo treatement (1 pill per day at approx $400 per day) - she must take the oral chemo for life to keep her BCR-ABL: cancer causing chromosome at bay.
The fact that she must take this forever and her condition is not curable (save for a transplant which is very risky and not likely) - the TKI chemo results in very bad side effects on a regular basis which she's been diagnosed / treated for about 1.5 yrs and the thought that she must endure the treatment for life isn't very pleasant (causes fever , nausea, bone pain) and also interferes with her white cell production as well as functioning of platelets (her platelet counts are ok at this time but she bruises like crazy, the ANC drops under 1,000 at times, she keeps obtaining UTI's and other infections - proteus and other items she has never had until now) .
She must take the TKI chemo agent for life - until the cancer cells mutate at which time we pray there is a new option to handle mutations (one product, ponatinib, does handle the most common mutation but it was pulled off the market after several deaths and is now available as a last resort for patients failing other TKI chemo's - it's risky with the many associated blood clots / strokes, but the alternative is the leukemia certainly ...) ."
https://myelomabeacon.org/forum/the-cost-of-revlimid-what-do-you-pay-t123-100.html
I would not want to live life like that if I had the chance to be in a long term drug free remission. An incredibly special person (my donor) gave me an opportunity to not have to live like that. I would do an allo even if I was a standard risk patient. The diagnosis for a newly diagnosed standard risk myeloma patient I believe is in the area of 10 years or so with drug/autos. IMO that is a not a good diagnosis for someone in their early 40's so I wanted to do an allo. An allo is not for all young patients but it was an easy decision for this young patient to do one.
IMO for information you should do searches here on the Beacon. The summaries they do on the studies are excellent and patients without a scientific background like me can understand them. They also have all the myeloma abstracts presented at 2013 ASH here. You can also go and do searches on PubMed, older ASH abstracts on their site, and abstracts from ASCO. They are peer reviewed studies/papers meaning that other doctors reviewed the papers.
Mark
-
Mark
Re: What was your treatment at Arkansas (UAMS)?
Thank you, Mark, for the extremely kind words.
One thing I wanted to call attention to is that the published 15% cure curve applies to the first total therapy regimen, which is the only regimen that has data 20 years out -- the point at which it's beyond a reasonable doubt that those people aren't going to be relapsing.
The drugs in TT1 were very limited. TT2 added thalidomide. TT3 added Velcade, Thalidomide, Revlimid and maintenance therapy.
The results in each successive therapy have improved dramatically from the 15%, however the data is not mature enough to convince skeptics yet.
If the TT3 cure curve holds up, the 15% is more like 50% (order of magnitude).
Hopeful27, the blog the Mark mentions relates the day-to-day experience that I had going through treatment at UAMS, warts and all. If you have questions, please feel free to contact me.
Good health to you both!
Best,
Nick
One thing I wanted to call attention to is that the published 15% cure curve applies to the first total therapy regimen, which is the only regimen that has data 20 years out -- the point at which it's beyond a reasonable doubt that those people aren't going to be relapsing.
The drugs in TT1 were very limited. TT2 added thalidomide. TT3 added Velcade, Thalidomide, Revlimid and maintenance therapy.
The results in each successive therapy have improved dramatically from the 15%, however the data is not mature enough to convince skeptics yet.
If the TT3 cure curve holds up, the 15% is more like 50% (order of magnitude).Hopeful27, the blog the Mark mentions relates the day-to-day experience that I had going through treatment at UAMS, warts and all. If you have questions, please feel free to contact me.
Good health to you both!
Best,
Nick
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