Hi, this is Linda. Joined the group a few days ago. Wondering if there is anyone else out there who has the combination of multiple myeloma/amyloidosis? Would really like to hear about your course of treatment.
Been fighting this for almost a year and know that a lot of what I am experiencing is to be expected but wondering how others out there are coping and just as important how are your caregivers coping?
Thanks!
Forums
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lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: multiple myeloma/amyloidosis
My husband was diagnosed with smoldering multiple myeloma in 2003 and systemic amyloid in 2007. He has no heart involvement. Most deposits are in his muscle tissue. He had his first stem cell transplant in April 2007 at age 60. He was treatment free for 2 years and then the disease process returned. Since then he has been on Revlimid, dexamthesone, Velcade & Cytoxcin. In the summer of 2012 it appeared these treatments weren't working well to keep both the myeloma & amyloid at bay ( the multiple myeloma became active in 11/11). He just had a second autologous stem cell transplant in 11/12. He is doing well with the recovery. All his treatment has been provided at the Mayo Clinic in Rochester, MN. He has received outstanding care there. . My husband has been able to cope with these diseases and continue doing some of the things he enjoys. Sometimes his medical care feels like a full time job for him. His positive attitude has contributed greatly to the quality of his life. I wish you the very best with all of this.
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Alaskacarmen
Re: multiple myeloma/amyloidosis
Hi Linda -- I didn't mention that Rod has experienced two broken ribs from the multiple myeloma. One in 11/11 & another in 11/12. He is now getting Zometa shots to help prevent additional breaks. Carmen
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Alaskacarmen
Re: multiple myeloma/amyloidosis
Hi Linda - Carmen has pretty much told you what's going on with my disease(s). I just wanted to add that if you ever want to contact me feel free to do so. My number is 907-229-3861. You also asked about caregivers and I want to pay tribute to my wife, Carmen, who has been my guardian angel and who does more to mitigate the effects of my disease than I do. I cope by not even acknowledging I have the disease. Anyway, I hope things go well for you.
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AlaskaRod
Re: multiple myeloma/amyloidosis
Carmen and Rod,
So good to hear from someone else in this situation. I guess the doctor was right, this is a very rare combination of diseases.
I went today for my post transplant bone marrow biopsy, and bloodwork. Will return next Tuesday for the results. As you can understand the wait will seem like an eternity. I try to keep occupied with other things to keep my mind off my illness and that helps. Can't seem to completely stop think about it, but was only diagnosed in April of last year, so hopefully as time goes by I can manage that better.
I am being treated at Methodist Hospital in Houston, where there are specialists in amyloidosis, in particular cardiologists. I was going to try and get into MD Anderson, however, when I understood that the amyloid was the more difficult one to deal with chose Methodist because of the specialists.
Will stay in touch and thank you for your number. Carmen, you sound like you have been as wonderful to Rod as my husband has been with me. Don't know how I would have gotten this far without him.
Linda
So good to hear from someone else in this situation. I guess the doctor was right, this is a very rare combination of diseases.
I went today for my post transplant bone marrow biopsy, and bloodwork. Will return next Tuesday for the results. As you can understand the wait will seem like an eternity. I try to keep occupied with other things to keep my mind off my illness and that helps. Can't seem to completely stop think about it, but was only diagnosed in April of last year, so hopefully as time goes by I can manage that better.
I am being treated at Methodist Hospital in Houston, where there are specialists in amyloidosis, in particular cardiologists. I was going to try and get into MD Anderson, however, when I understood that the amyloid was the more difficult one to deal with chose Methodist because of the specialists.
Will stay in touch and thank you for your number. Carmen, you sound like you have been as wonderful to Rod as my husband has been with me. Don't know how I would have gotten this far without him.
Linda
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lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: multiple myeloma/amyloidosis
Hi Linda,
I'm sorry to hear about your diagnosis of multiple myeloma and amyloidosis. I was diagnosed with both these diseases in 1987 andI have been told that I am an unusual case but I wanted to share my story so it might give you some hope.
Briefly, I was 29 years old and an immunology graduate student working with HIV patients (before AZT) using my own blood as part of normal controls when my serum turned from yellow-clear to milk white. My cholesterol shot up to over 1000 and my triglycerides were over 1300. It took 3 months before they diagnosed my with nephrotic syndrome, kidney damage from amyloid, and that I was loosing so much protein in my urine my body was compensating by producing cholesterol/triglcerides. I had amyloid in my liver, GI tract, skin, fat, BM, heart and kindneys. Basically everywhere they biopsied. I had no other symptoms but because of the diagnosis of amyloid in all my major organs I was given 6 months to live and we discussed hospice care but I did not give up.
I went to see Dr. Barlogie who was at MD Anderson at the time, since the Director of University of Arkansas for Medical Sciences-Myeloma Institute for Research and Treatment in Little Rock. He prescribed VAD (vincrinstin, adriamycin and dexamethazone) which was used as last resort back in those days. It is where you get lower doses of chemo over 4 days (wear a pump) for less toxicity with the thinking that myeloma (and especially amyloidosis) is a very slow growing disease. I did 3 months of this then a friend sent me an article that Sloan Kettering had just published using 4 types of chemo (BCNU and ectoposide were two of them) with interferon-alpha. I happened to have recently finished a study using interferon-alpha for stage IV melanoma patients (again using my own blood to establish the assays) and knew that the only person who had a stronger response to IFN-a was a woman who had a miraculous response when we gave her the drug and was cured of her disease. I came in a close second so we decided to do that treatment as well even though I was technically in remission.
Dr. Barlogie's thinking was that eventually the disease would likely return and this might keep it at bay longer. Our only goal was to slow the disease progression but I actually got better and my amyloid seemed to disappear from my body over the following 3 or 4 years. Before this no one had ever had this happen but now we know it can happen when you get the myeloma cells under control. After the chemo/IFN combo for 4 months I went on 12 years of maintanance with IFN-a then went off all treatments for another 15 years.
Unfortunately it came back last year and I am now on cytoxin, bortezomib and dexomethazone (CyBorD) which gave me a very good response- almost completely gone, my kappa free light chains are just barely above normal. Perhaps most importantly about 2 months after my counts dropped (after 6 months of CyBorD) my kidneys are returning to normal and my strength has returned. I have enough stem cells frozen down for 5-6 transplants if I need them but so far we are waiting to see if I can get into another long-term remission.
The proteosome inhibitors like bortezomib are perhaps perfect for amyloidosis because our diseased cells produce a mutated antibody that misfolds causing the amyloid. However, this misfolded protein may be its achiles heel because it can cause the cells to die more easily and the bortezomib seems to exceedingly hasten this effect. Also, keep your eye on the heat shock protein inhibitors, they could have a huge impact on myeloma and especially amyloidosis for the same reason.
I truly hope you are able to get a long term remission, even a cure, and that with your myeloma cells gone your body can resorb the amyloid. Mine did so its possible it just may take time.
Sorry for the long response but I hoper this helps.
All my very best to you
,
Dan
I'm sorry to hear about your diagnosis of multiple myeloma and amyloidosis. I was diagnosed with both these diseases in 1987 andI have been told that I am an unusual case but I wanted to share my story so it might give you some hope.
Briefly, I was 29 years old and an immunology graduate student working with HIV patients (before AZT) using my own blood as part of normal controls when my serum turned from yellow-clear to milk white. My cholesterol shot up to over 1000 and my triglycerides were over 1300. It took 3 months before they diagnosed my with nephrotic syndrome, kidney damage from amyloid, and that I was loosing so much protein in my urine my body was compensating by producing cholesterol/triglcerides. I had amyloid in my liver, GI tract, skin, fat, BM, heart and kindneys. Basically everywhere they biopsied. I had no other symptoms but because of the diagnosis of amyloid in all my major organs I was given 6 months to live and we discussed hospice care but I did not give up.
I went to see Dr. Barlogie who was at MD Anderson at the time, since the Director of University of Arkansas for Medical Sciences-Myeloma Institute for Research and Treatment in Little Rock. He prescribed VAD (vincrinstin, adriamycin and dexamethazone) which was used as last resort back in those days. It is where you get lower doses of chemo over 4 days (wear a pump) for less toxicity with the thinking that myeloma (and especially amyloidosis) is a very slow growing disease. I did 3 months of this then a friend sent me an article that Sloan Kettering had just published using 4 types of chemo (BCNU and ectoposide were two of them) with interferon-alpha. I happened to have recently finished a study using interferon-alpha for stage IV melanoma patients (again using my own blood to establish the assays) and knew that the only person who had a stronger response to IFN-a was a woman who had a miraculous response when we gave her the drug and was cured of her disease. I came in a close second so we decided to do that treatment as well even though I was technically in remission.
Dr. Barlogie's thinking was that eventually the disease would likely return and this might keep it at bay longer. Our only goal was to slow the disease progression but I actually got better and my amyloid seemed to disappear from my body over the following 3 or 4 years. Before this no one had ever had this happen but now we know it can happen when you get the myeloma cells under control. After the chemo/IFN combo for 4 months I went on 12 years of maintanance with IFN-a then went off all treatments for another 15 years.
Unfortunately it came back last year and I am now on cytoxin, bortezomib and dexomethazone (CyBorD) which gave me a very good response- almost completely gone, my kappa free light chains are just barely above normal. Perhaps most importantly about 2 months after my counts dropped (after 6 months of CyBorD) my kidneys are returning to normal and my strength has returned. I have enough stem cells frozen down for 5-6 transplants if I need them but so far we are waiting to see if I can get into another long-term remission.
The proteosome inhibitors like bortezomib are perhaps perfect for amyloidosis because our diseased cells produce a mutated antibody that misfolds causing the amyloid. However, this misfolded protein may be its achiles heel because it can cause the cells to die more easily and the bortezomib seems to exceedingly hasten this effect. Also, keep your eye on the heat shock protein inhibitors, they could have a huge impact on myeloma and especially amyloidosis for the same reason.
I truly hope you are able to get a long term remission, even a cure, and that with your myeloma cells gone your body can resorb the amyloid. Mine did so its possible it just may take time.
Sorry for the long response but I hoper this helps.
All my very best to you
,Dan
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Dan in Phoenix
Re: multiple myeloma/amyloidosis
Hi Dan, thanks for sharing your story. It is incredibly inspirational and provides so much hope for all of us. Is your type of myeloma light chain only? Thanks. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: multiple myeloma/amyloidosis
Hi Terry,
It's been a while since I was phenotyped (before the free light chain assay) and I believe I am an IgG kappa. Amyloidosis patients often have low level of disease burden- no M-spike detected- but it is the amyloid that causes the problems, even numbers so small you cannot see it on electrophoresis.
I remember an assay Dr. Barlogie showed me using flow cytometry back in 1989 where saw 3 cells in about 100,000 that were kappa positive and had 30% more DNA than normal (near-diploid). Later studies ended up showing this profile was actually a good prognosis and I am considered low risk with a very good history of controlling my disease.
Now we use the free light chain but I bet the new free heavy chain could be used to follow me too - I haven't had it yet. My last BM aspiration at relapse showed less than 5% plasma cells but about 0.5% were considered myeloma and genetic profiling by gene array showed low risk/good prognosis. These advanced tests were not even considered the last time I was sick. This is about the lowest limit of sensitivity for the assay but UAMS has special procedures to sort out myeloma cells from normal plasma cells for just this kind of situation.
You may know that amyloidosis is kind of like Alzheimer's Disease of the body so cures for systemic amyloidosis could lead to cures for AD.
Time will tell.
Do you have light chain amyloidosis? The prognosis is so much improved since I was last sick that we could live a full life.
All my best to you,
Dan
It's been a while since I was phenotyped (before the free light chain assay) and I believe I am an IgG kappa. Amyloidosis patients often have low level of disease burden- no M-spike detected- but it is the amyloid that causes the problems, even numbers so small you cannot see it on electrophoresis.
I remember an assay Dr. Barlogie showed me using flow cytometry back in 1989 where saw 3 cells in about 100,000 that were kappa positive and had 30% more DNA than normal (near-diploid). Later studies ended up showing this profile was actually a good prognosis and I am considered low risk with a very good history of controlling my disease.
Now we use the free light chain but I bet the new free heavy chain could be used to follow me too - I haven't had it yet. My last BM aspiration at relapse showed less than 5% plasma cells but about 0.5% were considered myeloma and genetic profiling by gene array showed low risk/good prognosis. These advanced tests were not even considered the last time I was sick. This is about the lowest limit of sensitivity for the assay but UAMS has special procedures to sort out myeloma cells from normal plasma cells for just this kind of situation.
You may know that amyloidosis is kind of like Alzheimer's Disease of the body so cures for systemic amyloidosis could lead to cures for AD.
Time will tell.
Do you have light chain amyloidosis? The prognosis is so much improved since I was last sick that we could live a full life.
All my best to you,
Dan
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Dan in Phoenix
Re: multiple myeloma/amyloidosis
Hi Dan, thanks for your detailed response. I have light chain only myeloma kappa restricted. It makes up about 15 to 20% of myeloma. Our disease is generally tracked by the FLC assays as our SPEP's tend to be normal. We also are prone to having our kidneys clogged up by the Bence Jones paraproteins. Thankfully, my kidneys seem to be working fine. In my case, prior to treatment, my light chains hit 16,000 mg/l....sky high. I am now under treatment in a clinical trial at the NIH in Bethesda, MD under Dr. Landgren. He's a brilliant myeloma expert. I just finished 8 months of carfilzomib/Revlimid and dexamethasone and my marrow is now clean as per a BMB and PET CT a few weeks ago. I will now be on low dose Revlimid for two years. My stem cells were harvested for a rainy day but one of the points of this protocol is to see how long and deep of a response one can get without a SCT. So far, we are all doing well and there is a similar trial in Michigan where the participants are doing well. Thanks again for sharing your story. It really is amazing. Regards. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: multiple myeloma/amyloidosis
Hi Terry,
I'm glad to hear you're doing well and hopefully you'll have a very long remission on the Revlimid/dex. NIH has some great expertise, I've heard of Dr. Landgren, so I'm glad you could go there. I was actually living for 17 years in DC, working at GWU and Georgetown's Lombadi Cancer Center when I was diagnosed so I know and love the city.
The kidney issue can be tough but I'm glad yours seems fine. I read about something called "high cut-off dialysis" or complete plasma exchange that they are doing now to quickly reduce the circulating Abs so hopefully in the future no one will suffer permenant kidney damage from myeloma or amyloid.
All my best for a long and healthy life,
Dan
I'm glad to hear you're doing well and hopefully you'll have a very long remission on the Revlimid/dex. NIH has some great expertise, I've heard of Dr. Landgren, so I'm glad you could go there. I was actually living for 17 years in DC, working at GWU and Georgetown's Lombadi Cancer Center when I was diagnosed so I know and love the city.
The kidney issue can be tough but I'm glad yours seems fine. I read about something called "high cut-off dialysis" or complete plasma exchange that they are doing now to quickly reduce the circulating Abs so hopefully in the future no one will suffer permenant kidney damage from myeloma or amyloid.
All my best for a long and healthy life,
Dan
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Dan in Phoenix
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