My poor sister-in-law turned 50, got kidney failure, was diagnosed with amyloidosis and then later, Myeloma was confirmed via bone marrow biopsy. She's really been hit with a whopper.
Sadly, there isn't very much information out there about the two diseases together. Neither are a picnic. Currently, her doctor is treating her with Revlimid and dex. The insurance company has denied Velcade. She is in stage 2 myeloma and her doctor said it was aggressive.
Some people have told us that she needs to have a stem cell transplant for the amyloidosis, but I don't think she can get a stem cell transplant because of the myeloma in her bloodstream. It's my understanding that she must reach a remission first, but in the time that it takes to reach a remission may allow the amyloidosis to progress and ruin more of her organs.
Just curious if anyone out there has any knowledge of situations like hers?
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Re: Multiple myeloma with amyloidosis
Hey Sister in Law,
Yes I have the multiple myeloma plus amyloidosis. (AL)
Like you I searched and searched and there was little information on the two together. But my oncologists always told me that we'd just treat the multiple myeloma. The only thing that would affect treatment of multiple myeloma was if the AL was causing problems. ie organs were not strong enough to handle certain regimens. But we would not be treating the AL directly, only indirectly as we treated the multiple myeloma. They essentially told me to forget the AL and told me the multiple myeloma was causing the AL.
That was 2 years ago and I'm not having any issues related to either.
I also have a friend who has the same condition. She's gone through 2 SCT's and is in complete remission, and neither disease is affecting her.
I would fight the denial of Velcade coverage -- that doesn't' seem right.
Yes I have the multiple myeloma plus amyloidosis. (AL)
Like you I searched and searched and there was little information on the two together. But my oncologists always told me that we'd just treat the multiple myeloma. The only thing that would affect treatment of multiple myeloma was if the AL was causing problems. ie organs were not strong enough to handle certain regimens. But we would not be treating the AL directly, only indirectly as we treated the multiple myeloma. They essentially told me to forget the AL and told me the multiple myeloma was causing the AL.
That was 2 years ago and I'm not having any issues related to either.
I also have a friend who has the same condition. She's gone through 2 SCT's and is in complete remission, and neither disease is affecting her.
I would fight the denial of Velcade coverage -- that doesn't' seem right.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Multiple myeloma with amyloidosis
More thoughts.
I wonder if your doctor could "rediagnose" her disease multiple myeloma with AL, rather than the reverse?
I'll bet that is why they are denying her coverage.
I'm no doctor, but from what I've read AL by itself is far worse than multiple myeloma with AL.
Make sure you take her to a multiple myeloma specialist.
I spend months reading about AL and it was very scary and things did not look hopeful. But multiple myeloma with AL is a different story.
And yes, the stem cell transplant is very important with regards to controlling these diseases. (I like them so much, I've had two!)
Stan
I wonder if your doctor could "rediagnose" her disease multiple myeloma with AL, rather than the reverse?
I'll bet that is why they are denying her coverage.
I'm no doctor, but from what I've read AL by itself is far worse than multiple myeloma with AL.
Make sure you take her to a multiple myeloma specialist.
I spend months reading about AL and it was very scary and things did not look hopeful. But multiple myeloma with AL is a different story.
And yes, the stem cell transplant is very important with regards to controlling these diseases. (I like them so much, I've had two!)
Stan
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Multiple myeloma with amyloidosis
Hello,
In a patient with the diagnosis of symptomatic multiple myeloma and amyloidosis the amyloidosis is almost certainly a secondary disease. 10-15% of myeloma patients have co-existing AL Amyloidosis – most are first diagnosed with myeloma. The multiple myeloma is the PRIMARY cause of the amyloid. The decision to deny Velcade is based on an insurance reviewer's poor understanding of this patients diagnosis / disease and should be appealed.
If the patient does have symptomatic myeloma and systemic amyloidosis it could be valuable for them to be seen in a myeloma center. The diagnosis and treatment of amyloidosis is complex. Patients with amyloidosis have many more complications than patients with myeloma alone.
In general, in 2011 a young person with newly diagnosed multiple myeloma and secondary amyloidosis should have a stem cell transplant.
In a patient with the diagnosis of symptomatic multiple myeloma and amyloidosis the amyloidosis is almost certainly a secondary disease. 10-15% of myeloma patients have co-existing AL Amyloidosis – most are first diagnosed with myeloma. The multiple myeloma is the PRIMARY cause of the amyloid. The decision to deny Velcade is based on an insurance reviewer's poor understanding of this patients diagnosis / disease and should be appealed.
If the patient does have symptomatic myeloma and systemic amyloidosis it could be valuable for them to be seen in a myeloma center. The diagnosis and treatment of amyloidosis is complex. Patients with amyloidosis have many more complications than patients with myeloma alone.
In general, in 2011 a young person with newly diagnosed multiple myeloma and secondary amyloidosis should have a stem cell transplant.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Multiple myeloma with amyloidosis
Hello,
This is many months later. My sister-in-law is in remission. She had a complete remission of her myeloma / amyloidosis, after five months of Revlimid / dex -- no Velcade, since it was denied. The remission was diagnosed by her bone biopsy. One of the counts showed a complete remission and the other showed a very good partial remission. She's doing pretty well. There is some fluid retention yet and the kidneys are at stage 3 failure. Her heart has some stiffening from the amyloidosis.
Is a stem cell transplant worth doing if there is a complete remission? Is it the remission that causes the shrinking back of the amyloid tissue? Or is it the transplant process? I know that transplants are recommended to most people if their organs are okay. I wondered if the transplant somehow kills the amyloid tissue? Or is it the remission that kills the amyloid tissue? I know that the amyloid tissue is not actually killed, but it is halted and the body begins to get rid of it. I sort of thought the goal was the remission, so I wondered why transplants are done if remissions can be achieved by drugs? Maybe the remissions last longer with a transplant?
I hope I can find my way back to this spot to see if there are any replies!!! Last time, it was months before I discovered the replies!
This is many months later. My sister-in-law is in remission. She had a complete remission of her myeloma / amyloidosis, after five months of Revlimid / dex -- no Velcade, since it was denied. The remission was diagnosed by her bone biopsy. One of the counts showed a complete remission and the other showed a very good partial remission. She's doing pretty well. There is some fluid retention yet and the kidneys are at stage 3 failure. Her heart has some stiffening from the amyloidosis.
Is a stem cell transplant worth doing if there is a complete remission? Is it the remission that causes the shrinking back of the amyloid tissue? Or is it the transplant process? I know that transplants are recommended to most people if their organs are okay. I wondered if the transplant somehow kills the amyloid tissue? Or is it the remission that kills the amyloid tissue? I know that the amyloid tissue is not actually killed, but it is halted and the body begins to get rid of it. I sort of thought the goal was the remission, so I wondered why transplants are done if remissions can be achieved by drugs? Maybe the remissions last longer with a transplant?
I hope I can find my way back to this spot to see if there are any replies!!! Last time, it was months before I discovered the replies!
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Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Multiple myeloma with amyloidosis
Hello everyone! I am really glad to have found this forum...with the lack of information out there about this disease, it's comforting to know I am not alone, and also to hear stories from people that have gone through this (or going through this), and to be able to share my stories as well...thank you!
My father was diagnosed with the Senile strand of Amyloidosis in November of 2011...he was 78 yrs young. At this time it was attacking only his heart, and all his other organs were fine. He was also diagnosed with CHF, which the doctor explained was a result of the Amyloidosis. While he was in the hospital, they performed an Ablation and catheterization on him, as well as a bone marrow test (which was fine) on him and overall, things were OK.
When he was released from the hospital, of course he was a little weak, but grew stronger over the next couple of weeks. He had his INR (blood draws to check coumadin levels) done each month, and his protein levels checked regularly to make sure the Amyloidosis was still isolated to his heart and had not spread. All was going well, except his short term memory began to fade and he became depressed. He also had another bone marrow test in Oct of 2012, and this time it showed a very small amount of Multiple Myeloma (multiple myeloma) cells...which according to his doctor, was not a major concern because he didn't feel it was enough to cause him any concern. He just ordered further blood tests to make certain the multiple myeloma did not grow.
Over time, he grew weaker and didn't seem to recover as well, and from here things became progressively worse. He started having trouble with his breathing (it became labored), and he tired very easily. When he went to his appointment on 19 Jan 2013, they did a CT scan on his lungs and found some weird looking spots. They immediately ordered him to ER, said there was a possibility that he had TB. Thus, he was admitted for further testing, but after all testing was done, they found nothing wrong. So his doctor attributed his latest symptoms to possibility that his Amyloidosis is spreading to his other organs. They released him on the 28th of January 2013 and we celebrated his 80th birthday on January 30 2013. But, he is now weaker than he's ever been this whole entire time.
He often struggles getting up and down out of his recliner, and off of the couch. His breathing is really bothering him (especially when he lies flat) so he shuffles from bed to recliner for comfort. He has stopped eating, probably less that 500 calories a day and at his appointment today Feb 4th, 2013, we see he lost a total of 12 lb in the last 3 or 4 weeks. His doctor has now prescribed MEGACE (appetite stimulant) to try and get him to eat so we can try to put some weight back on him.
Please pray for my father during this time, and know that I am praying for your families as well.
My father was diagnosed with the Senile strand of Amyloidosis in November of 2011...he was 78 yrs young. At this time it was attacking only his heart, and all his other organs were fine. He was also diagnosed with CHF, which the doctor explained was a result of the Amyloidosis. While he was in the hospital, they performed an Ablation and catheterization on him, as well as a bone marrow test (which was fine) on him and overall, things were OK.
When he was released from the hospital, of course he was a little weak, but grew stronger over the next couple of weeks. He had his INR (blood draws to check coumadin levels) done each month, and his protein levels checked regularly to make sure the Amyloidosis was still isolated to his heart and had not spread. All was going well, except his short term memory began to fade and he became depressed. He also had another bone marrow test in Oct of 2012, and this time it showed a very small amount of Multiple Myeloma (multiple myeloma) cells...which according to his doctor, was not a major concern because he didn't feel it was enough to cause him any concern. He just ordered further blood tests to make certain the multiple myeloma did not grow.
Over time, he grew weaker and didn't seem to recover as well, and from here things became progressively worse. He started having trouble with his breathing (it became labored), and he tired very easily. When he went to his appointment on 19 Jan 2013, they did a CT scan on his lungs and found some weird looking spots. They immediately ordered him to ER, said there was a possibility that he had TB. Thus, he was admitted for further testing, but after all testing was done, they found nothing wrong. So his doctor attributed his latest symptoms to possibility that his Amyloidosis is spreading to his other organs. They released him on the 28th of January 2013 and we celebrated his 80th birthday on January 30 2013. But, he is now weaker than he's ever been this whole entire time.
He often struggles getting up and down out of his recliner, and off of the couch. His breathing is really bothering him (especially when he lies flat) so he shuffles from bed to recliner for comfort. He has stopped eating, probably less that 500 calories a day and at his appointment today Feb 4th, 2013, we see he lost a total of 12 lb in the last 3 or 4 weeks. His doctor has now prescribed MEGACE (appetite stimulant) to try and get him to eat so we can try to put some weight back on him.
Please pray for my father during this time, and know that I am praying for your families as well.
Re: Multiple myeloma with amyloidosis
Hello to all.
I recently posted questions regarding this double diagnosis and am finding more people out there , don't feel so alone.
Sister in law, glad to hear your sister reached remission. I had my sct in September. The results were good however there is still some myeloma that needs to be treated. Am presently on a maintenance treatment with Revlimid. If the myeloma does not continue to drop my oncologist plans to add Velcade as part of the maintenance. The goal is to treat the myeloma which should slow the progression of the Amyloidosis. Presently the amyloid is in my digestive tract and my heart.
I wish your family well and hope your sister in law gets well.
For all of you others out there, black rose hope you see this, this is a difficult combination of diseases to treat however, just think positive and live one day at a time. Enjoy and prayers for your dad and the rest of your family.
Linda
I recently posted questions regarding this double diagnosis and am finding more people out there , don't feel so alone.
Sister in law, glad to hear your sister reached remission. I had my sct in September. The results were good however there is still some myeloma that needs to be treated. Am presently on a maintenance treatment with Revlimid. If the myeloma does not continue to drop my oncologist plans to add Velcade as part of the maintenance. The goal is to treat the myeloma which should slow the progression of the Amyloidosis. Presently the amyloid is in my digestive tract and my heart.
I wish your family well and hope your sister in law gets well.
For all of you others out there, black rose hope you see this, this is a difficult combination of diseases to treat however, just think positive and live one day at a time. Enjoy and prayers for your dad and the rest of your family.
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 with amyloidosis
My friend's wife who lives 300 yards from my house has this situation of both multiple myeloma with amyloidosis. She was diagnosed 2 months after me. I have straight multiple myeloma and no amyloidosis.
Her kidneys were affected and my spine was affected. She got an auto transplant in April of 2012 and I got mine in May of 2012. My friend's wife is now in remission and I had 3% cancer in my plasma cells after the transplant. She takes no treatment at this point, but I am on a maintenance of 15 mg Revlimid and dex since September of 2012. I had a 6 month check up with my transplant doctor yesterday and he wants to keep me on this maintenance for another 6 months.
Two of the same but different animals for her with the amyloidosis. I read the combination of both is pretty rare but my friends wife is 55 years old and back to work 40 hours a week and appears to be doing well. I am now 62. My back is destroyed my working days are over. Just remember everyone is different and you take it one day at a time.
Her kidneys were affected and my spine was affected. She got an auto transplant in April of 2012 and I got mine in May of 2012. My friend's wife is now in remission and I had 3% cancer in my plasma cells after the transplant. She takes no treatment at this point, but I am on a maintenance of 15 mg Revlimid and dex since September of 2012. I had a 6 month check up with my transplant doctor yesterday and he wants to keep me on this maintenance for another 6 months.
Two of the same but different animals for her with the amyloidosis. I read the combination of both is pretty rare but my friends wife is 55 years old and back to work 40 hours a week and appears to be doing well. I am now 62. My back is destroyed my working days are over. Just remember everyone is different and you take it one day at a time.
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: Multiple myeloma with amyloidosis
I hope you dont mind me posting - I have just been diagnosed with AL. Took about 3 months of quite a few tests - liver / spleen / kidneys affected. My professor won my case to be treated to Chlopramide and Velcade - the latter the insurance company didn't want to use as i believe this is for secondary myeloma patients. I'm only on my first week cycle but doing okay. Have 6 x 21 cycles, two month rest, then SCT.
Good to find a positive site. Just heard from someone I know who has had myeloma, diagnosed 22 years ago, had chemo / stem cell and still going strong. I know mine is different but I am hopeful for a long remission.
Good luck to you all and thanks for listening - by the way not sure where forum originates from so I am in England
Tornado
Good to find a positive site. Just heard from someone I know who has had myeloma, diagnosed 22 years ago, had chemo / stem cell and still going strong. I know mine is different but I am hopeful for a long remission.
Good luck to you all and thanks for listening - by the way not sure where forum originates from so I am in England
Tornado
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Tornado
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