People can raise their hackles about TT, but as far as I can tell, there is no disputing the following: if you undergo TT with novel agents and make it out to the 3-4 year plateau point with CR, you are looking VERY VERY good. And that is great against this sh--ty disease, which is like a multi-head dragon.
What I don't know is if any of the alternative therapies emerging, such as the current upfront trials with carfilzomib, dex, and Revlimid offer such promise. Time will tell.
Forums
Lack of financial conflict disclosure at MIRT/UAMS - Arkansa
Readers may be interested in the following message sent to Dr Barlogie (no reply received). Also see attached documents.
Dear Bart
Apart from the number of myeloma patients who seem to die of "unknown" causes while on prospective studies at MIRT, incomplete disclosures of conflicts of interest has been a noteworthy feature of MIRT publications.
Until I pointed it out and "Cancer" disclosed it (ISS in TT Cancer addendum.pdf), there was no disclosure of the intellectual property interest (with obvious financial implications) in any of the several MIRT publications in multiple journals.
Now I learn with some interest - from the latest letter you have published in Blood (Drug dose-intensity MIRT reply letter Blood.pdf) - that you have an "interest in Signal Genetics" - the company that commercializes the MyPRS test.
This is material information that referees, editors, and readers - and most importantly patients - needed to know. Can you please explain the lack of disclosure? I would also like to know if this is disclosed in clinical trial consent forms at MIRT. This would be pertinent under all circumstances - but especially in this case where there is a concern that misclassification of disease- or toxicity-related deaths as "unknown" may have influenced conclusions of studies - including the validity of the gene expression profiling model (and as a result, the patents and the very existence of Signal Genetics).
I have copied this to the current and past editors of Blood, the current editor of JCO, the UAMS IRB, the FDA, and ORI.
Sincerely
Jayesh
Dear Bart
Apart from the number of myeloma patients who seem to die of "unknown" causes while on prospective studies at MIRT, incomplete disclosures of conflicts of interest has been a noteworthy feature of MIRT publications.
Until I pointed it out and "Cancer" disclosed it (ISS in TT Cancer addendum.pdf), there was no disclosure of the intellectual property interest (with obvious financial implications) in any of the several MIRT publications in multiple journals.
Now I learn with some interest - from the latest letter you have published in Blood (Drug dose-intensity MIRT reply letter Blood.pdf) - that you have an "interest in Signal Genetics" - the company that commercializes the MyPRS test.
This is material information that referees, editors, and readers - and most importantly patients - needed to know. Can you please explain the lack of disclosure? I would also like to know if this is disclosed in clinical trial consent forms at MIRT. This would be pertinent under all circumstances - but especially in this case where there is a concern that misclassification of disease- or toxicity-related deaths as "unknown" may have influenced conclusions of studies - including the validity of the gene expression profiling model (and as a result, the patents and the very existence of Signal Genetics).
I have copied this to the current and past editors of Blood, the current editor of JCO, the UAMS IRB, the FDA, and ORI.
Sincerely
Jayesh
- Attachments
-
Drug dose-intensity MIRT reply letter Blood.pdf- (52.88 KiB) Downloaded 84 times
-
- ISS in TT Cancer addendum.pdf
- (36.56 KiB) Downloaded 63 times
-
jmehta - Name: Jayesh Mehta MD
Re: Report on Myeloma Trials at UAMS / Arkansas
Dr. Mehta,
Thank you for following up on this issue. I have posted a few Doctors Disclosure Statements here on the Beacon site when I think it is warranted. I really think it is important to know what Drug companies Doctors recieve money from and what firms they have financial interests in. I really appeciate you taking the time to put together the paper that started this thread. I learned a lot from it. I hope the other patients took the time to read it and the other things you have posted.
Mark
Thank you for following up on this issue. I have posted a few Doctors Disclosure Statements here on the Beacon site when I think it is warranted. I really think it is important to know what Drug companies Doctors recieve money from and what firms they have financial interests in. I really appeciate you taking the time to put together the paper that started this thread. I learned a lot from it. I hope the other patients took the time to read it and the other things you have posted.
Mark
-
Mark
Re: Lack of financial conflict disclosure at MIRT/UAMS - Ark
jmehta wrote:
>> Now I learn with some interest - from the latest letter you have published
> in Blood (Drug dose-intensity MIRT reply letter Blood.pdf) - that you have
> an "interest in Signal Genetics" - the company that
> commercializes the MyPRS test.
>
Dr Metha,
I find your utter "surprise" that UAMS has been the driving force behind the very significant MyPRS myeloma Risk Assessment test either disengenuos at best or self serving at worst. As a well informed patient of Dr. Barlogie for 26 years with multiple myeloma and systemic amyloidosis (I followed him from MD Anderson) and watched the emergence of UAMS into the highly respected myeloma center of excellence it is today, I know theMyPRS test is based on more that 12 years of research by this truly dedicated team.
All the aricles I've read dating that validated the test- in highly respected journals- listed conflicts of interst disclosures that were required at the time. When someone is the leader in his field (like Dr. Barlogie is) his ideas are often "ahead of the curve" but I know for a fact that he was one of the first proponents for using gene arrays to stratify his myeloma patients and optimize their treatments for the best results. Such thinking is now thankfully main stream thanks primarily to great minds like Dr. Barlogie.
There is also an unappreciated but very exciting benefit that his gene studies provide. Althogh the test only uses ~18 genes to classify patients there are ~40,000 genes on the Affymetrix gene chip analyzed for each patient. I know that I have benefited from the knowledge of this additional information because Dr. Barlogie can get expression levels of emerging new biomarkers including for example glucocoid receptor levels for sensitivity to dexamethazone or cereblon for expected response to Revlimid.
This knowledge base offers the hope for all myeloma (and AL amyloidosis) patients and I strongly recommend that patients ask their doctors to incorporate the latest cutting edge science in the management of their disease.
Even a busy clinician like yourself should try to research a topic more fully before you make alligations that to me appear unfounded.
Dan
>> Now I learn with some interest - from the latest letter you have published
> in Blood (Drug dose-intensity MIRT reply letter Blood.pdf) - that you have
> an "interest in Signal Genetics" - the company that
> commercializes the MyPRS test.
>
Dr Metha,
I find your utter "surprise" that UAMS has been the driving force behind the very significant MyPRS myeloma Risk Assessment test either disengenuos at best or self serving at worst. As a well informed patient of Dr. Barlogie for 26 years with multiple myeloma and systemic amyloidosis (I followed him from MD Anderson) and watched the emergence of UAMS into the highly respected myeloma center of excellence it is today, I know theMyPRS test is based on more that 12 years of research by this truly dedicated team.
All the aricles I've read dating that validated the test- in highly respected journals- listed conflicts of interst disclosures that were required at the time. When someone is the leader in his field (like Dr. Barlogie is) his ideas are often "ahead of the curve" but I know for a fact that he was one of the first proponents for using gene arrays to stratify his myeloma patients and optimize their treatments for the best results. Such thinking is now thankfully main stream thanks primarily to great minds like Dr. Barlogie.
There is also an unappreciated but very exciting benefit that his gene studies provide. Althogh the test only uses ~18 genes to classify patients there are ~40,000 genes on the Affymetrix gene chip analyzed for each patient. I know that I have benefited from the knowledge of this additional information because Dr. Barlogie can get expression levels of emerging new biomarkers including for example glucocoid receptor levels for sensitivity to dexamethazone or cereblon for expected response to Revlimid.
This knowledge base offers the hope for all myeloma (and AL amyloidosis) patients and I strongly recommend that patients ask their doctors to incorporate the latest cutting edge science in the management of their disease.
Even a busy clinician like yourself should try to research a topic more fully before you make alligations that to me appear unfounded.
Dan
-
Dan in Phoenix
Re: Report on Myeloma Trials at UAMS / Arkansas
Dr. Metha,
That is good information to know.
So many of the patient's blog that I read of BB seem to follow the same treatment plan. That seems strange, if this test is suppose to tell him how to individualize treatments.
Wow, Dan, 26 years, that is fantastic, no wonder you are so grateful to UAMS. What treatments have you used in the last 26 years? It is good to hear a success story. But would you not have been before TT?
jj
That is good information to know.
So many of the patient's blog that I read of BB seem to follow the same treatment plan. That seems strange, if this test is suppose to tell him how to individualize treatments.
Wow, Dan, 26 years, that is fantastic, no wonder you are so grateful to UAMS. What treatments have you used in the last 26 years? It is good to hear a success story. But would you not have been before TT?
jj
-
jjc
Re: Report on Myeloma Trials at UAMS / Arkansas
jjj wrote:
> Wow, Dan, 26 years, that is fantastic, no wonder you are so grateful to
> UAMS. What treatments have you used in the last 26 years? It is good to
> hear a success story. But would you not have been before TT?
>
> jj
Hi jj,
Yes I was diagnosed with multiple myeloma and amyloid before TT and even before transplants were considered standard therapy. I was 29 y.o in 1987 when I was diagnosed- please don't do the math. Transplants were experimental then (in fact we had to fight BCBS to get them to approve a transplant). They were loosing about 1/4 of patients to the treatments then and even worse for amyoid patients. I have actualy never had a transplant but have enough stem cells frozen down for 5 or so in case I do. My case is unique and I don't believe someone should follow my path but rather get the best and brightest doctors who use personalized science to make the best therapy choices.
Briefly (I don't want to bore people) I went to Dr. Barlogie when my local doctor in DC felt I needed the best doctor of my case. I was a graduate student studying tumor immunology and working with AIDS patients using my blood as part of the normal controls for a study. One day my serum went from yellow/clear to milky white. I had nephrotic syndrome (30gr/day) which sent my cholesterol over 1000 and triglcerides over 1300. No other symptom and no bone lession. It took 3 months for the DC docs to make the diagnosis that amyloid had infected my kidneys. They biopsied me and found it also in my heart, GI tract, liver, bone marrow, fat/skin and spleen.
Dr. Barlogie put me on VAD treatment for 3 months which got me into remission. Back then this was reserved as a "last resort", most people would have recieved melphelan and prednisone. Then a friend sent me a clipping from the NY Times on a new treatment for resistent myeloma that combined 4 chemotherapies and interefon alpha. For the knowledgable reader they called it the M2 protocol. I did another 4 months of this treatment even though I was technically in remission because we expected it would eventually come back. I knew I was a super responder to a-interferon from an earlier study I worked on for metastatic melanoma patients. The only one who responded better than me in a test tube was a woman who had a miraculous response; all of her melanoma diasappeared when we gave her interefon.
I stayed on interferon for another 13 years while in remission and finally went off about 10 years ago. I haven't been on anything until this year when my numbers creeped up again and my kidneys showed more amyloid. I see Dr. Keith Stewart here in Scottsdale Mayo as well as UAMS and we decided to do Dr. Stewart's CyBorD (cytoxan, bortezomib, dex) which put me back in remission in 4 months. I had more stem cells collected at UAMS and Dr. Barlogie's suggestion for me now is more CyBorD therapy to strengthen my response and allow my body to heal from the amyloid. When I was diagnosed they didn't think people could remove the amyloid but my case showed that it actually gets removed over time. Within 3 years in remission they could not detect amyloid in any organs so somehow my body cleaned it out.
I'm feeling good now, getting CyBorD every other week and just watching my FLC counts. My heart damage markers (NT-pro-BNP) is almost normal and my kidneys are returning to normal after 6 months in remission. Dr. Barlogie doesn't want me to start Revlimid now because he worries about MDS or second leukemia because of all my earlier treatments.
So although it seems like everyone at UAMS get TT it isn't actually true. Dr. Barlogie uses his extensive expertise to select the best treatment for each person. I've heard him say he would never give any patient a therapy that he felt was not right for them.
Things are much better now with much more knowldege and new drugs that weren't available when I was diagnosed. I actually think we are close to a cure for myeloma and it will start out like it did for childhood leukemia (this is the field Dr. Barlogie worked on before myeloma) where we cured some patients first and gradually cured higher and higher percentages.
Sorry this is such a long post. I tried to be brief but 25 years is a long time to summarize.
All my very best to everyone dealing with myeloma and especially my fellow amyloid compatriots. There is always hope out there.
Happy Thanksgiving, Dan
> Wow, Dan, 26 years, that is fantastic, no wonder you are so grateful to
> UAMS. What treatments have you used in the last 26 years? It is good to
> hear a success story. But would you not have been before TT?
>
> jj
Hi jj,
Yes I was diagnosed with multiple myeloma and amyloid before TT and even before transplants were considered standard therapy. I was 29 y.o in 1987 when I was diagnosed- please don't do the math. Transplants were experimental then (in fact we had to fight BCBS to get them to approve a transplant). They were loosing about 1/4 of patients to the treatments then and even worse for amyoid patients. I have actualy never had a transplant but have enough stem cells frozen down for 5 or so in case I do. My case is unique and I don't believe someone should follow my path but rather get the best and brightest doctors who use personalized science to make the best therapy choices.
Briefly (I don't want to bore people) I went to Dr. Barlogie when my local doctor in DC felt I needed the best doctor of my case. I was a graduate student studying tumor immunology and working with AIDS patients using my blood as part of the normal controls for a study. One day my serum went from yellow/clear to milky white. I had nephrotic syndrome (30gr/day) which sent my cholesterol over 1000 and triglcerides over 1300. No other symptom and no bone lession. It took 3 months for the DC docs to make the diagnosis that amyloid had infected my kidneys. They biopsied me and found it also in my heart, GI tract, liver, bone marrow, fat/skin and spleen.
Dr. Barlogie put me on VAD treatment for 3 months which got me into remission. Back then this was reserved as a "last resort", most people would have recieved melphelan and prednisone. Then a friend sent me a clipping from the NY Times on a new treatment for resistent myeloma that combined 4 chemotherapies and interefon alpha. For the knowledgable reader they called it the M2 protocol. I did another 4 months of this treatment even though I was technically in remission because we expected it would eventually come back. I knew I was a super responder to a-interferon from an earlier study I worked on for metastatic melanoma patients. The only one who responded better than me in a test tube was a woman who had a miraculous response; all of her melanoma diasappeared when we gave her interefon.
I stayed on interferon for another 13 years while in remission and finally went off about 10 years ago. I haven't been on anything until this year when my numbers creeped up again and my kidneys showed more amyloid. I see Dr. Keith Stewart here in Scottsdale Mayo as well as UAMS and we decided to do Dr. Stewart's CyBorD (cytoxan, bortezomib, dex) which put me back in remission in 4 months. I had more stem cells collected at UAMS and Dr. Barlogie's suggestion for me now is more CyBorD therapy to strengthen my response and allow my body to heal from the amyloid. When I was diagnosed they didn't think people could remove the amyloid but my case showed that it actually gets removed over time. Within 3 years in remission they could not detect amyloid in any organs so somehow my body cleaned it out.
I'm feeling good now, getting CyBorD every other week and just watching my FLC counts. My heart damage markers (NT-pro-BNP) is almost normal and my kidneys are returning to normal after 6 months in remission. Dr. Barlogie doesn't want me to start Revlimid now because he worries about MDS or second leukemia because of all my earlier treatments.
So although it seems like everyone at UAMS get TT it isn't actually true. Dr. Barlogie uses his extensive expertise to select the best treatment for each person. I've heard him say he would never give any patient a therapy that he felt was not right for them.
Things are much better now with much more knowldege and new drugs that weren't available when I was diagnosed. I actually think we are close to a cure for myeloma and it will start out like it did for childhood leukemia (this is the field Dr. Barlogie worked on before myeloma) where we cured some patients first and gradually cured higher and higher percentages.
Sorry this is such a long post. I tried to be brief but 25 years is a long time to summarize.
All my very best to everyone dealing with myeloma and especially my fellow amyloid compatriots. There is always hope out there.
Happy Thanksgiving, Dan
-
Dan in Phoenix
Re: Report on Myeloma Trials at UAMS / Arkansas
Thank you Dan!
I really appreciate the details. You make a great underlying point. Be a well educated patient.
I have light chain multiple myeloma, did transplant(no maintenance), been in sCR for over four years. Kidneys have recovered greatly(been on dialysis briefly), but I still fight too much protein in the urine, even though creatinine is down to 1.0. Do you know anything that helps get the protein down? I realize the damage to my glomeruli caused scar tissue from the light chain damage and that is leading to the protein issue.
In my pretransplant treatment I did Rev. for one month and had to quit because it blew out my kidney function. Switched to vel/dex.
I am so protective of my kidneys I don't even take a multivitamin. When I say I take zero pills, that is about it except for an occasional Tylenol.
You are right, most of us do think UAMS does treat most patients with double auto/years of maintenance.
If I was doing the math, I would say I might have you beat by a year
But, that you have beat this disease for 26 years is inspiring. Does anyone use interferon to treat multiple myeloma now?
I really appreciate the details. You make a great underlying point. Be a well educated patient.
I have light chain multiple myeloma, did transplant(no maintenance), been in sCR for over four years. Kidneys have recovered greatly(been on dialysis briefly), but I still fight too much protein in the urine, even though creatinine is down to 1.0. Do you know anything that helps get the protein down? I realize the damage to my glomeruli caused scar tissue from the light chain damage and that is leading to the protein issue.
In my pretransplant treatment I did Rev. for one month and had to quit because it blew out my kidney function. Switched to vel/dex.
I am so protective of my kidneys I don't even take a multivitamin. When I say I take zero pills, that is about it except for an occasional Tylenol.
You are right, most of us do think UAMS does treat most patients with double auto/years of maintenance.
If I was doing the math, I would say I might have you beat by a year
But, that you have beat this disease for 26 years is inspiring. Does anyone use interferon to treat multiple myeloma now?-
jjc
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi Dan
I was so happy to read your post - it has given me such hope. I was diagnosed with myeloma and amyloidosis in February 2011. I too had nephrotic syndrome and high cholesterol. Scans showed I had a large load of amyloid in my kidneys, liver and spleen. I had 6 cycles of cyclophosphamide ( cytoxan), thalidomide and dex. I responded to treatment very quickly and reached a complete response after 2 cycles.
I have now been in remission for 18 months. I have enough stem cells on ice for just one transplant as I had trouble giving up my stem cells. I am being pressured by my myeloma specialist to have an auto transplant now, but I have resisted this and plan to review on relapse - I am being supported by my amyloid specialist in this decision. My amyloid is regressing very slowly, but my proteinuria has reduced drastically. Reading your post was very interesting indeed and gives me strength in my decision that treatment should very much be on an individual basis. I wish you many more years of further remission!! Thank you so much for posting.
Best wishes
Alice
I was so happy to read your post - it has given me such hope. I was diagnosed with myeloma and amyloidosis in February 2011. I too had nephrotic syndrome and high cholesterol. Scans showed I had a large load of amyloid in my kidneys, liver and spleen. I had 6 cycles of cyclophosphamide ( cytoxan), thalidomide and dex. I responded to treatment very quickly and reached a complete response after 2 cycles.
I have now been in remission for 18 months. I have enough stem cells on ice for just one transplant as I had trouble giving up my stem cells. I am being pressured by my myeloma specialist to have an auto transplant now, but I have resisted this and plan to review on relapse - I am being supported by my amyloid specialist in this decision. My amyloid is regressing very slowly, but my proteinuria has reduced drastically. Reading your post was very interesting indeed and gives me strength in my decision that treatment should very much be on an individual basis. I wish you many more years of further remission!! Thank you so much for posting.
Best wishes
Alice
-
Alice
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi Alice,
Funny how similar our diseases have been.
Its a tough call for when to get a transplant and if you ask 10 people you'll get 20 opinions. You have to do what feel right to you. My amyloidosis also progressed slowly and actually regressed over the years. Do they still find it in your biopsies?
In the US we don't have a scan for amyloid like they do in Europe and amyloid can be a spotty disease- just because we don't find it in a biopsy doesn't mean its not there. Can you take Velcade (bortezomib)? The biology of amyloidosis seems to make this the best choice because our (yours and mine) light chains are abnormal and fold improperly. This causes cell stress and they try to put them into the garbage bin of the cell called the proteosome. Velcade inhibits this process and excess misfolded proteins accumulate in the cells killing them. There's also immunomodulatory benefits because it blocks an inflammatory process called the NF-kB pathway which might help your immune system fight it as well.
If you wait for a transplant make sure you're followed closely using FLC assay and be ready to jump if it rises above a threshold. For me I suspect there is a threshold level below which no amyloid forms and above which it starts to get deposited.
I have a theory (just a theory) that it is the free light chain that is actually more damaging than the amyloid through something called the "mis-folded protein response". I know misfolded proteins can kill nerve and muscle cells which could be the basis of Alzheimer's Disease which everyone thinks is caused by b-amyloid but it could be mis-folded tau protein that causes neuron death. Maybe our bodies are forming amyloid because its better than leaving the light chains to circulate in our blood. When my FLC rises my strength is sapped, my heart gets damged, my liver enzymes rise and my kidneys get damaged. Amyloid does this too but maybe not as severely. I plan to ask Dr. Morie Getz about this in person when he talks at an amyloid conference here in Scottsdale in Jan.
It might help to know that things are much better now. When I was diagnosed in 1987 I was given 6 months to live and my doctors in DC asked if I wanted hospice care. Dr. Barlogie was the first to say that he thought he could help me. Today, people like you who respond (and quite honestly who have a transplant) can expect to live more than 10 years. I am probalby unique so please don't make your descision solely based on my experiences.
I'm planning to make it to 100 and just stubborn enough that I might.
I wish you all the very best for a long, long life. Dan
Funny how similar our diseases have been.
Its a tough call for when to get a transplant and if you ask 10 people you'll get 20 opinions. You have to do what feel right to you. My amyloidosis also progressed slowly and actually regressed over the years. Do they still find it in your biopsies?
In the US we don't have a scan for amyloid like they do in Europe and amyloid can be a spotty disease- just because we don't find it in a biopsy doesn't mean its not there. Can you take Velcade (bortezomib)? The biology of amyloidosis seems to make this the best choice because our (yours and mine) light chains are abnormal and fold improperly. This causes cell stress and they try to put them into the garbage bin of the cell called the proteosome. Velcade inhibits this process and excess misfolded proteins accumulate in the cells killing them. There's also immunomodulatory benefits because it blocks an inflammatory process called the NF-kB pathway which might help your immune system fight it as well.
If you wait for a transplant make sure you're followed closely using FLC assay and be ready to jump if it rises above a threshold. For me I suspect there is a threshold level below which no amyloid forms and above which it starts to get deposited.
I have a theory (just a theory) that it is the free light chain that is actually more damaging than the amyloid through something called the "mis-folded protein response". I know misfolded proteins can kill nerve and muscle cells which could be the basis of Alzheimer's Disease which everyone thinks is caused by b-amyloid but it could be mis-folded tau protein that causes neuron death. Maybe our bodies are forming amyloid because its better than leaving the light chains to circulate in our blood. When my FLC rises my strength is sapped, my heart gets damged, my liver enzymes rise and my kidneys get damaged. Amyloid does this too but maybe not as severely. I plan to ask Dr. Morie Getz about this in person when he talks at an amyloid conference here in Scottsdale in Jan.
It might help to know that things are much better now. When I was diagnosed in 1987 I was given 6 months to live and my doctors in DC asked if I wanted hospice care. Dr. Barlogie was the first to say that he thought he could help me. Today, people like you who respond (and quite honestly who have a transplant) can expect to live more than 10 years. I am probalby unique so please don't make your descision solely based on my experiences.
I'm planning to make it to 100 and just stubborn enough that I might.
I wish you all the very best for a long, long life. Dan
-
Dan in Phoenix
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi jjj,
I'm glad to hear you're doing well 4 years after your transplant.
I don't know of a way to heal scars from light chain deposition in the kidney. I have a underlying supposition that the human body has amazing healing & regenerative capacity if we support it and give it everything it needs (nutrition, exercise, sleep, happines). Maybe it will just takes time. My nephrologist is tops, does kidney transplants, and he recommends I don't take any non-steroidal anti-inflammatories and if I must to use Excedrin not Tylenol- ask your nephrologist about this and get his opinion.
Concerning a-interferon it has fallen out of favor but I must say I know another 20+ myeloma survivor and he was on long-term maintainance with interferon and is still in remission. I suspect there are a percentage of myeloma patients (~5%) who will benefit but we don't know who they are except in rare cases like when I used my blood to set up the melanoma study. I was also lucky that I didn't have side-effects so could stay on it for so long.
In science, if a drug helps only some patients it often won't be seen as beneficial by investigators and they move on. Bottom line we just don't know if the a-interon, the other drugs,both or something else about me or my disease allowed me to live so long.
Everyday for the last 25 years has been a gift and I try to give back as much as I can.
Happy Thanksgiving to you, Dan
I'm glad to hear you're doing well 4 years after your transplant.
I don't know of a way to heal scars from light chain deposition in the kidney. I have a underlying supposition that the human body has amazing healing & regenerative capacity if we support it and give it everything it needs (nutrition, exercise, sleep, happines). Maybe it will just takes time. My nephrologist is tops, does kidney transplants, and he recommends I don't take any non-steroidal anti-inflammatories and if I must to use Excedrin not Tylenol- ask your nephrologist about this and get his opinion.
Concerning a-interferon it has fallen out of favor but I must say I know another 20+ myeloma survivor and he was on long-term maintainance with interferon and is still in remission. I suspect there are a percentage of myeloma patients (~5%) who will benefit but we don't know who they are except in rare cases like when I used my blood to set up the melanoma study. I was also lucky that I didn't have side-effects so could stay on it for so long.
In science, if a drug helps only some patients it often won't be seen as beneficial by investigators and they move on. Bottom line we just don't know if the a-interon, the other drugs,both or something else about me or my disease allowed me to live so long.
Everyday for the last 25 years has been a gift and I try to give back as much as I can.
Happy Thanksgiving to you, Dan
-
Dan in Phoenix
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