Hi, Dan,
Thank you so much for your response regarding the multiple myeloma/amyloid. I have been very anxious since first diagnosed and am very happy to hear of the success you have had after such a grim prognosis at such an early age.
You have provided me with some additional information that I can use in tracking my progress. I went in yesterday for my post transplant bone marrow biopsy and will get the results of those tests next week.
Am very hopeful that I will be in remission from the myeloma and can focus on the maintenance treatment plan for the amyloid.
Stay well!
Linda
Forums
-
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
Linda,
I'm glad to help, even just a little. Like I said the prognosis for myeloma/amyloidosis has improved drammatically since I was diagnosed with some very recent reports actually showing even longer survival than standard multiple myeloma.
My suggestion to you (and everyone) is to utilize the latest science and get a super-smart, open-minded doctor who is ahead of the curve if possible.
All my very best to you,
Dan
I'm glad to help, even just a little. Like I said the prognosis for myeloma/amyloidosis has improved drammatically since I was diagnosed with some very recent reports actually showing even longer survival than standard multiple myeloma.
My suggestion to you (and everyone) is to utilize the latest science and get a super-smart, open-minded doctor who is ahead of the curve if possible.
All my very best to you,
Dan
-
Dan in Phoenix
Re: multiple myeloma/amyloidosis
Hi Linda,
I have lambda light chain myeloma which causes my Amyoidosis. After my Amyloid diagnosis the myeloma drs. Sent me to Boston Medical Center, they have an Amyloidosis center for a stem cell transplant in July 2010. That went well as far as transplants go. When I went back to my Myeloma .drs they put me on Revlimid. they basically said you will be on this till it recurs .
Because of this disease we relocated closer to our children. Fortunately there was a myeloma center there as well. They treat myeloma much more aggressively with two transplants. This was the second time for me in this city after diagnosis. I felt like this was being put in front of me for a reason. I stopped the Revlimid and collected more stem cells and had another transplant in April 2011. I am still on treatment but that should stop in a year or so. So far my treatments have worked very well with no reoccurrence of Myeloma. I am very lucky and remember that every day. I will say there have been times I have been so sick of oral drugs and infusions. But those times do pass. I would be happy to communicate more with you if you would like. By the way I am 53 and was diagnosed with myeloma December 2009.
My best to you,
Deb
I have lambda light chain myeloma which causes my Amyoidosis. After my Amyloid diagnosis the myeloma drs. Sent me to Boston Medical Center, they have an Amyloidosis center for a stem cell transplant in July 2010. That went well as far as transplants go. When I went back to my Myeloma .drs they put me on Revlimid. they basically said you will be on this till it recurs .
Because of this disease we relocated closer to our children. Fortunately there was a myeloma center there as well. They treat myeloma much more aggressively with two transplants. This was the second time for me in this city after diagnosis. I felt like this was being put in front of me for a reason. I stopped the Revlimid and collected more stem cells and had another transplant in April 2011. I am still on treatment but that should stop in a year or so. So far my treatments have worked very well with no reoccurrence of Myeloma. I am very lucky and remember that every day. I will say there have been times I have been so sick of oral drugs and infusions. But those times do pass. I would be happy to communicate more with you if you would like. By the way I am 53 and was diagnosed with myeloma December 2009.
My best to you,
Deb
-
Deb
Re: multiple myeloma/amyloidosis
Deb, thank you so much for your reply. It is always inspiring to hear someone elses' story and know that I am not alone. The doctors have all told me that this combination of illnesses is so rare and sometimes for that reason are misdiagnosed and treatments are not successful.
I go in on Tuesday to get the results of my post transplant biopsy and hope that all is within the range and that the myeloma is in remission. The amyloid has already attacked the digestive tract and heart, but will be on maintenance therapy for that. I also have enough stem cells collected and stored for another transplant if needed.
I would very much like to stay in touch with you and hope that you continue to do well. By the way, how was your second transplant in comparison to the first?
Linda
I go in on Tuesday to get the results of my post transplant biopsy and hope that all is within the range and that the myeloma is in remission. The amyloid has already attacked the digestive tract and heart, but will be on maintenance therapy for that. I also have enough stem cells collected and stored for another transplant if needed.
I would very much like to stay in touch with you and hope that you continue to do well. By the way, how was your second transplant in comparison to the first?
Linda
-
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 will be thinking of you and hope your appointment goes well tomorrow and you have good news.
i will look tomorrow to see if you post.
i would say my second transplant over all was harder for me. i ended up with neutropenic fever and was hospitalized for 8 days. during that time my platelets became extremely low and i needed transfusions. i used 18 units because my body kept attacking them. they had to do some specific typing to try to match me.. the hospital ran out of what i needed. they called their local donors who matched and asked them to come in and donate. i was amazed and so grateful for their generosity. my was husband too, that was quite scary for him. most of that stay is pretty much a blurr for me. i would say mentally it affected me more. my mind just could not process very well. that lasted quite a long time. i wish i could say i am smarter now than before, unfortunately that is not the case. ha-ha. I asked my husband his thoughts, although me being hospitalized was very stressful for him. having been through one transplant before, we knew how things should go. that prior experience eased some of the stress.
how are you doing? how do you feel physically and emotionally?
i would love to keep in touch.
deb
i will be thinking of you and hope your appointment goes well tomorrow and you have good news.
i will look tomorrow to see if you post.
i would say my second transplant over all was harder for me. i ended up with neutropenic fever and was hospitalized for 8 days. during that time my platelets became extremely low and i needed transfusions. i used 18 units because my body kept attacking them. they had to do some specific typing to try to match me.. the hospital ran out of what i needed. they called their local donors who matched and asked them to come in and donate. i was amazed and so grateful for their generosity. my was husband too, that was quite scary for him. most of that stay is pretty much a blurr for me. i would say mentally it affected me more. my mind just could not process very well. that lasted quite a long time. i wish i could say i am smarter now than before, unfortunately that is not the case. ha-ha. I asked my husband his thoughts, although me being hospitalized was very stressful for him. having been through one transplant before, we knew how things should go. that prior experience eased some of the stress.
how are you doing? how do you feel physically and emotionally?
i would love to keep in touch.
deb
-
deb
Re: multiple myeloma/amyloidosis
Hi, Deb,
Anxious and nervous about tomorrow but am also very hopeful. Thank you for your response, I guess I am thinking that there is that possibility of another transplant.
I was in the hospital for 21 days for the first one and just assumed that if you have to go in for a second one that it is just easier because you know what to expect. Guess that isn't always the case. Will stay in touch.
Physically, I feel pretty good about 3 days out of the week. The rest of the time I either have very little energy or have to deal with the side effects of the gastric involvment. also just got over a bout with pneumonia right before the holidays. I feel like I am always waiting for the next bump in the road. Not being negative, just seems to be my new way of life for now.
Linda
Anxious and nervous about tomorrow but am also very hopeful. Thank you for your response, I guess I am thinking that there is that possibility of another transplant.
I was in the hospital for 21 days for the first one and just assumed that if you have to go in for a second one that it is just easier because you know what to expect. Guess that isn't always the case. Will stay in touch.
Physically, I feel pretty good about 3 days out of the week. The rest of the time I either have very little energy or have to deal with the side effects of the gastric involvment. also just got over a bout with pneumonia right before the holidays. I feel like I am always waiting for the next bump in the road. Not being negative, just seems to be my new way of life for now.
Linda
-
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
Havent posted in a few days regarding my results of the post transplant biopsy. Actually left the office almost as uncertain as when I walked in. I felt that my transplant team was a little vague about what they consider a long term prognosis. The concern is that my lambda light chains have plateaued at 5.63 which is still elevated, so not in remission but not overly elevated ? His suggestion to my oncologist is maintenance on Revlimid. I will see her next week and get more info from her.
I have already started my list of questions for her. It appears that because of the cardiac involvement, a second sct is pretty much out of the question, at least as of now. My bone pain seems more pronounced to me these days and my energy levels fluctuate from day to day. I do believe the energy spikes are just a result of the sct and my blood counts which are still somewhat low.
Anyone out there have an opinion or tips for me?
Linda
I have already started my list of questions for her. It appears that because of the cardiac involvement, a second sct is pretty much out of the question, at least as of now. My bone pain seems more pronounced to me these days and my energy levels fluctuate from day to day. I do believe the energy spikes are just a result of the sct and my blood counts which are still somewhat low.
Anyone out there have an opinion or tips for me?
Linda
-
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,
Remember me- I have had amyloidosis for last 25 years and after a long remission recently relapsed. I'm doing better now but still on treatment.
My kappa level after 9 months of cytoxin, bortezomib and dex has leveled off at around 3.0 from a high of 15.0 when I started. Like you it is not extremely high but also not in true remission. I wonder if amyloid patients like us have to keep our free light chains lower than typical myeloma patients before we start to feel it physically. I noticed that when my high levels of abnormally folded light chains got below about 5.0 I suddenly felt much stronger and could tolerate the rest of my treatments easier. I had felt extremely light headed, low blood pressure and weak when my levels were high.
There is some scientific literature out there for a syndrome called the "unfolded protein response". In graduate shool a long, long time ago we called it the "misfolded protein resonse". Maybe our bodies can sense these misfolded- pre amyloid proteins which are actually toxic to our cells. I have minimal amyloid in my heart- they can only see it with a special filter on a cardiac MRI movie. I have noticed that my NT-pro-BMP markers almost exactly followed my amyloid light chain levels with about a two month delay. They rose as high as 550 when my levels were at their highest and now down to about 150. Normal is <67.
This is kind of a scientist approach and your doctor may need to be convinced but I don't think it wouldn't hurt to ask and he may be more knowledgable than you think. I would ask him if there is a quick way to reduce your lambda light chains sooner. There is some talk recently about using "high cut-off dialysis" to remove antibodies from the blood. If the goal of anti-myeloma therapy is to reduce these antibodies than I would think this could help- with the understanding that any free light chain tests done within a few days of this treatment would not reflect the levels of malignant plasma cells in your BM. Certainly lowering your lambda light chains will stop any new amyloid from being formed.
Its just a thought I wanted to suggest. There is a cancer conference for patients here in Phoenix this weekend and Morie Getz, an amyloid expert from Mayo Rochester will present. I thought I'd approach him with this hypothesis tomorrow at a break out session.
I can't make any suggestion for your decision about your next therapy, I'd follow your doctor if you trust him and if he is an expert in myeloma/amyloidosis. We amyloid patients have been described as perhaps more fragile than myeloma patients so therapy can be particularly difficult for us sometimes. Maybe with lower circulating pre-amyloid light chains you can tolerate your treatments better.
All my very best to you. I hope things go well and that you start to feel better very soon.
Dan
lindagc wrote:
> Havent posted in a few days regarding my results of the post transplant
> biopsy. Actually left the office almost as uncertain as when I walked in.
> I felt that my transplant team was a little vague about what they consider
> a long term prognosis. The concern is that my lambda light chains have
> plateaued at 5.63 which is still elevated, so not in remission but not
> overly elevated ? His suggestion to my oncologist is maintenance on
> Revlimid. I will see her next week and get more info from her.
>
> I have already started my list of questions for her. It appears that
> because of the cardiac involvement, a second sct is pretty much out of the
> question, at least as of now. My bone pain seems more pronounced to me
> these days and my energy levels fluctuate from day to day. I do believe
> the energy spikes are just a result of the sct and my blood counts which
> are still somewhat low.
>
> Anyone out there have an opinion or tips for me?
>
> Linda
Remember me- I have had amyloidosis for last 25 years and after a long remission recently relapsed. I'm doing better now but still on treatment.
My kappa level after 9 months of cytoxin, bortezomib and dex has leveled off at around 3.0 from a high of 15.0 when I started. Like you it is not extremely high but also not in true remission. I wonder if amyloid patients like us have to keep our free light chains lower than typical myeloma patients before we start to feel it physically. I noticed that when my high levels of abnormally folded light chains got below about 5.0 I suddenly felt much stronger and could tolerate the rest of my treatments easier. I had felt extremely light headed, low blood pressure and weak when my levels were high.
There is some scientific literature out there for a syndrome called the "unfolded protein response". In graduate shool a long, long time ago we called it the "misfolded protein resonse". Maybe our bodies can sense these misfolded- pre amyloid proteins which are actually toxic to our cells. I have minimal amyloid in my heart- they can only see it with a special filter on a cardiac MRI movie. I have noticed that my NT-pro-BMP markers almost exactly followed my amyloid light chain levels with about a two month delay. They rose as high as 550 when my levels were at their highest and now down to about 150. Normal is <67.
This is kind of a scientist approach and your doctor may need to be convinced but I don't think it wouldn't hurt to ask and he may be more knowledgable than you think. I would ask him if there is a quick way to reduce your lambda light chains sooner. There is some talk recently about using "high cut-off dialysis" to remove antibodies from the blood. If the goal of anti-myeloma therapy is to reduce these antibodies than I would think this could help- with the understanding that any free light chain tests done within a few days of this treatment would not reflect the levels of malignant plasma cells in your BM. Certainly lowering your lambda light chains will stop any new amyloid from being formed.
Its just a thought I wanted to suggest. There is a cancer conference for patients here in Phoenix this weekend and Morie Getz, an amyloid expert from Mayo Rochester will present. I thought I'd approach him with this hypothesis tomorrow at a break out session.
I can't make any suggestion for your decision about your next therapy, I'd follow your doctor if you trust him and if he is an expert in myeloma/amyloidosis. We amyloid patients have been described as perhaps more fragile than myeloma patients so therapy can be particularly difficult for us sometimes. Maybe with lower circulating pre-amyloid light chains you can tolerate your treatments better.
All my very best to you. I hope things go well and that you start to feel better very soon.
Dan
lindagc wrote:
> Havent posted in a few days regarding my results of the post transplant
> biopsy. Actually left the office almost as uncertain as when I walked in.
> I felt that my transplant team was a little vague about what they consider
> a long term prognosis. The concern is that my lambda light chains have
> plateaued at 5.63 which is still elevated, so not in remission but not
> overly elevated ? His suggestion to my oncologist is maintenance on
> Revlimid. I will see her next week and get more info from her.
>
> I have already started my list of questions for her. It appears that
> because of the cardiac involvement, a second sct is pretty much out of the
> question, at least as of now. My bone pain seems more pronounced to me
> these days and my energy levels fluctuate from day to day. I do believe
> the energy spikes are just a result of the sct and my blood counts which
> are still somewhat low.
>
> Anyone out there have an opinion or tips for me?
>
> Linda
-
Dan in Phoenix
Re: multiple myeloma/amyloidosis
Dan,
Just read your reply to my latest post and what really got my atention was the new treatment you mentioned using dialysis to lower the light chains. I truly do have a lot of confidence in my oncologist, and am preparing questions for our meeting next week. I would like to read a little more on this before next Tuesday, so that I can also ask her about it. Do you have a recommended article that I can review?
Dr. Goetz was here at Methodist Hospital for a seminar a couple of years back; wish I knew if he was coming back to our area any time soon or if there are other seminars available.
Thanks for the great info, sometimes (actually quite often) I feel very ignorant regarding our malady. Guess I just have to read more.
Linda
Just read your reply to my latest post and what really got my atention was the new treatment you mentioned using dialysis to lower the light chains. I truly do have a lot of confidence in my oncologist, and am preparing questions for our meeting next week. I would like to read a little more on this before next Tuesday, so that I can also ask her about it. Do you have a recommended article that I can review?
Dr. Goetz was here at Methodist Hospital for a seminar a couple of years back; wish I knew if he was coming back to our area any time soon or if there are other seminars available.
Thanks for the great info, sometimes (actually quite often) I feel very ignorant regarding our malady. Guess I just have to read more.
Linda
-
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,
Here's a Beacon article from last Feb-
https://myelomabeacon.org/news/2012/02/27/high-cut-off-hemodialysis-helps-restore-kidney-function-in-multiple-myeloma-patients/
And a link to a list on pubmed where you can find more info on high cut off dialysis and myeloma-
http://www.ncbi.nlm.nih.gov/pubmed?term=high%20cut%20off%20dialysis%20myeloma
I don't think that links can be active on this forum board so you'll have to cut and paste them into your browser. By the way, pub med is a great resource (I suggest you bookmark the page) because you can type search terms into the box at the top and find all published articles that are related. With it you can stay up with and maybe ahead of your oncologist.
In essence everything that is published is on this type of dialysis and myeloma. Amyloidosis is such a rare condition that no one has linked the two yet but it makes sense to me in this regard- HCU-dialysis removes light chains from a person's blood which help the kidneys of myeloma patients. Amyloid is different chemically but still caused by the same thing, an accumulation of light chains (as amyloid in our cases) in the kidneys. Addiitonally, since amyloid can be deposited in any organ reducing the light chains in the blood may stop the porcess in the whole body.
I think it is worth asking your doctor about and see if he agrees with the logic. I think its a safe option that might "artificially" reduce your amyloidic light chains faster as your treatment takes time to work. Sort of "an ounce of prevent" idea.
One very encouraging thing I heard at the conference this weekend was that doctors are seeing some patients who are slow to respond to treatment, may never reach normal light chain levels or take many months but because their disease grows very slowly they enjoy an exceptionally long remission.
I truly hope this is the case for you and that you enjoy a long, long remission with time for your body to heal and remove the amyloid.
All my very best to you,
Dan
PS- Please let me know if the links don't work for some reason and we'll figure out a way to get you the articles directly.
lindagc wrote:
> Dan,
>
> Just read your reply to my latest post and what really got my atention was
> the new treatment you mentioned using dialysis to lower the light chains.
> I truly do have a lot of confidence in my oncologist, and am preparing
> questions for our meeting next week. I would like to read a little more on
> this before next Tuesday, so that I can also ask her about it. Do you have
> a recommended article that I can review?
>
> Dr. Goetz was here at Methodist Hospital for a seminar a couple of years
> back; wish I knew if he was coming back to our area any time soon or if
> there are other seminars available.
>
> Thanks for the great info, sometimes (actually quite often) I feel very
> ignorant regarding our malady. Guess I just have to read more.
>
> Linda
Here's a Beacon article from last Feb-
https://myelomabeacon.org/news/2012/02/27/high-cut-off-hemodialysis-helps-restore-kidney-function-in-multiple-myeloma-patients/
And a link to a list on pubmed where you can find more info on high cut off dialysis and myeloma-
http://www.ncbi.nlm.nih.gov/pubmed?term=high%20cut%20off%20dialysis%20myeloma
I don't think that links can be active on this forum board so you'll have to cut and paste them into your browser. By the way, pub med is a great resource (I suggest you bookmark the page) because you can type search terms into the box at the top and find all published articles that are related. With it you can stay up with and maybe ahead of your oncologist.
In essence everything that is published is on this type of dialysis and myeloma. Amyloidosis is such a rare condition that no one has linked the two yet but it makes sense to me in this regard- HCU-dialysis removes light chains from a person's blood which help the kidneys of myeloma patients. Amyloid is different chemically but still caused by the same thing, an accumulation of light chains (as amyloid in our cases) in the kidneys. Addiitonally, since amyloid can be deposited in any organ reducing the light chains in the blood may stop the porcess in the whole body.
I think it is worth asking your doctor about and see if he agrees with the logic. I think its a safe option that might "artificially" reduce your amyloidic light chains faster as your treatment takes time to work. Sort of "an ounce of prevent" idea.
One very encouraging thing I heard at the conference this weekend was that doctors are seeing some patients who are slow to respond to treatment, may never reach normal light chain levels or take many months but because their disease grows very slowly they enjoy an exceptionally long remission.
I truly hope this is the case for you and that you enjoy a long, long remission with time for your body to heal and remove the amyloid.
All my very best to you,
Dan
PS- Please let me know if the links don't work for some reason and we'll figure out a way to get you the articles directly.
lindagc wrote:
> Dan,
>
> Just read your reply to my latest post and what really got my atention was
> the new treatment you mentioned using dialysis to lower the light chains.
> I truly do have a lot of confidence in my oncologist, and am preparing
> questions for our meeting next week. I would like to read a little more on
> this before next Tuesday, so that I can also ask her about it. Do you have
> a recommended article that I can review?
>
> Dr. Goetz was here at Methodist Hospital for a seminar a couple of years
> back; wish I knew if he was coming back to our area any time soon or if
> there are other seminars available.
>
> Thanks for the great info, sometimes (actually quite often) I feel very
> ignorant regarding our malady. Guess I just have to read more.
>
> Linda
-
Dan in Phoenix
23 posts
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