At my husband's last check up and treatment it was found there had been a sudden change in his heart function and he was transferred to a cardiology unit for further tests. The doctor told us that pathalogical protein was being deposited in his heart and he told me the name of the condition, but I couldn't understand what he said as he is Bulgarian and I also couldn't read the notes.
We have just been to see his GP to let him know that we are returning to the UK in 2 weeks time and I asked him to write the name down in English. I have just come home and Googled it and am devastated with the prognosis.
I feel that all hope is lost now and that he will die very soon. It is such a blow as his myeloma is doing great and he is in very good partial remission (VGPR).I haven't mentioned it to him as I don't want him to lose hope.
Has anyone else had this heart condition and if so, how are you doing?
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Re: Cardiac amyloidosis - anyone else have it?
I was diagnosed with stage II multiple myeloma in February of 2009. However, it is likely that I had multiple myeloma or its precursor MGUS for several years prior to the diagnosis.
Approximately a year prior to my diagnosis, my family physician heard a heart murmur during a routine physical. That lead to an echocardiogram that showed I had mild-moderate stenosis on my aortic heart valve. (I have a bicuspid valve with two leafs instead of the standard 3.) Stenosis is caused by calcium building up on the valve that narrows (constricts) the opening.
I had the test repeated this February and it has now progressed into severe stenosis. As a result, I will need to have heart valve replacement surgery before the end of the year. (I am going to hold off until the fall if I can as it is not an emergency situation.)
I had asked my oncologist if the multiple myeloma caused the stenosis. He thought that was highly unlikely and the two are not related. However, the timing is suspicious, since I was diagnosed with both conditions within a year.
Ron
Approximately a year prior to my diagnosis, my family physician heard a heart murmur during a routine physical. That lead to an echocardiogram that showed I had mild-moderate stenosis on my aortic heart valve. (I have a bicuspid valve with two leafs instead of the standard 3.) Stenosis is caused by calcium building up on the valve that narrows (constricts) the opening.
I had the test repeated this February and it has now progressed into severe stenosis. As a result, I will need to have heart valve replacement surgery before the end of the year. (I am going to hold off until the fall if I can as it is not an emergency situation.)
I had asked my oncologist if the multiple myeloma caused the stenosis. He thought that was highly unlikely and the two are not related. However, the timing is suspicious, since I was diagnosed with both conditions within a year.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Cardiac amyloidosis - anyone else have it?
I don't think you should give up hope.
First of all you have a language barrier. Secondly, a confirmed diagnosis of amyloidosis requires a biopsy. Did he have a biopsy?
My husband' cancer is in remission, but in testing to prepare to harvest stem cells he was found to have had a dramatic change in his cardiac status and will be unable to proceed to transplant. No mention was made of amyloidosis, and even with a diagnosis of congestive heart failure, we've come too far to just give up based on a couple words spoken by a doctor.
Doctors know many things. But my husband's health has been dire in the past (prior to his myeloma diagnosis), and he has defied all odds. I get to feeling like you do at times -- I really do. But after I freak out a little (or a lot), I pull up my panties (lol) and get back to doing what we do. We fight the good fight.
I've read a few of your postings in the past and feel glad for you that you will be returning to a place where language is not such a barrier for you both to understand what's going on. That must be very hard. You've gotten this far, you're obviously strong. Go home and get on with the battle!
Best wishes to you both.
First of all you have a language barrier. Secondly, a confirmed diagnosis of amyloidosis requires a biopsy. Did he have a biopsy?
My husband' cancer is in remission, but in testing to prepare to harvest stem cells he was found to have had a dramatic change in his cardiac status and will be unable to proceed to transplant. No mention was made of amyloidosis, and even with a diagnosis of congestive heart failure, we've come too far to just give up based on a couple words spoken by a doctor.
Doctors know many things. But my husband's health has been dire in the past (prior to his myeloma diagnosis), and he has defied all odds. I get to feeling like you do at times -- I really do. But after I freak out a little (or a lot), I pull up my panties (lol) and get back to doing what we do. We fight the good fight.
I've read a few of your postings in the past and feel glad for you that you will be returning to a place where language is not such a barrier for you both to understand what's going on. That must be very hard. You've gotten this far, you're obviously strong. Go home and get on with the battle!
Best wishes to you both.
Re: Cardiac amyloidosis - anyone else have it?
Thank you ever so much Cindy and Ron. Eric didn't have a biopsy but had a camera and several other tests done and the doctor told me that there were heavy deposits of this bad protein all over his heart. In addition to this, he had a single bypass 10 years back and was diagnosed with heart failure 18 months a go. So his heart is very poorly without this added problem.
A few weeks back he returned from his treatment and was in a state of collapse when he got off the coach and he could barely breath. I got the GP out the next day and then phoned the oncologist who told us to bring him straight back. He was diagnosed with Swine Flu which was epidemic in Bulgaria at that time, and it was then that they noticed the big changes in his heart. They cleared his lungs up in 8 days and then transferred him to the heart unit. Also, at Christmas he had pneumonia and his treatment was delayed for 4 weeks until the lung specialist gave him the all clear.
We will both be so relieved to get back home and be able to fully understand everything that is going on. It has been the most stressful 6 months of our lives and it is hugely down to the language barrier. I do hope that the doctor here is wrong with his diagnosis and that they have better news for us in England.
Thanks again and take care. xx
A few weeks back he returned from his treatment and was in a state of collapse when he got off the coach and he could barely breath. I got the GP out the next day and then phoned the oncologist who told us to bring him straight back. He was diagnosed with Swine Flu which was epidemic in Bulgaria at that time, and it was then that they noticed the big changes in his heart. They cleared his lungs up in 8 days and then transferred him to the heart unit. Also, at Christmas he had pneumonia and his treatment was delayed for 4 weeks until the lung specialist gave him the all clear.
We will both be so relieved to get back home and be able to fully understand everything that is going on. It has been the most stressful 6 months of our lives and it is hugely down to the language barrier. I do hope that the doctor here is wrong with his diagnosis and that they have better news for us in England.
Thanks again and take care. xx
Re: Cardiac amyloidosis - anyone else have it?
I have AA amyloidosys(amyloid origins is other than myeloma amyloidosis) .
I used doxycycline off label along with other potent anti-inflammatory drugs. All together it worked and my kidneys improved dramatically, Bellow links to few trials that claim that doxycycline can solve amyloid deposits. You can ask your doctor opinion about it.
http://clinicaltrials.gov/show/NCT01677286
https://ash.confex.com/ash/2012/webprogram/Paper53022.html
I used doxycycline off label along with other potent anti-inflammatory drugs. All together it worked and my kidneys improved dramatically, Bellow links to few trials that claim that doxycycline can solve amyloid deposits. You can ask your doctor opinion about it.
http://clinicaltrials.gov/show/NCT01677286
https://ash.confex.com/ash/2012/webprogram/Paper53022.html
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Igor
Re: Cardiac amyloidosis - anyone else have it?
Much apreciated Igor, things are looking a little better than they were a few hours ago. We will speak to his new doctors as soon as we get sorted.
Thank you for replying.
Thank you for replying.
Re: Cardiac amyloidosis - anyone else have it?
Hi Sharona,
I was diagnosed with systemic amyloidosis a long time ago and am still alive and doing well. My story is unusual but I will say that it is possible to recover with time if your husband responds to his myeloma treatment. It seems your husband has had other cardiac issues in the past so, without a biopsy, you really can't say its amyloid for sure.
For me, we follow a blood marker called NT-pro-BNT. My counts are almost normal these days but were high previously. Also with amyloid they can do echocradiogram to look for thickening of the heart walls and lose of flexibility of the heart. The heart biopsy isn't too bad, just feels weird when they thread a very thin tube through an artery to collect a very small piece. Your heart kind of skips a beat. No pain though.
For me it seems that as long as my myeloma protein is below a certain level, no amyloid is deposited and can actually be removed. For instance, after a recent relapse in my kidneys and heart, my kidneys are almost back to normal (protein loss in urine dropped from 8gms/day to 3gms/day) and heart is functioning good after about 2 years in remission. It takes my body time to remove the deposited amyloid protein.
I hope things work out for him and it turns out to be something else that can more easily be fixed. The fact that he is responding to his treatment is a good sign.
All my best to you.
Dan
I was diagnosed with systemic amyloidosis a long time ago and am still alive and doing well. My story is unusual but I will say that it is possible to recover with time if your husband responds to his myeloma treatment. It seems your husband has had other cardiac issues in the past so, without a biopsy, you really can't say its amyloid for sure.
For me, we follow a blood marker called NT-pro-BNT. My counts are almost normal these days but were high previously. Also with amyloid they can do echocradiogram to look for thickening of the heart walls and lose of flexibility of the heart. The heart biopsy isn't too bad, just feels weird when they thread a very thin tube through an artery to collect a very small piece. Your heart kind of skips a beat. No pain though.
For me it seems that as long as my myeloma protein is below a certain level, no amyloid is deposited and can actually be removed. For instance, after a recent relapse in my kidneys and heart, my kidneys are almost back to normal (protein loss in urine dropped from 8gms/day to 3gms/day) and heart is functioning good after about 2 years in remission. It takes my body time to remove the deposited amyloid protein.
I hope things work out for him and it turns out to be something else that can more easily be fixed. The fact that he is responding to his treatment is a good sign.
All my best to you.
Dan
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Dan in Phoenix
Re: Cardiac amyloidosis - anyone else have it?
Dan, thank you.
We have been to Plovdiv today for his last dose of chemo in Bulgaria. I told the oncologist of my angst and he said just the same as you -- that it's impossible for the cardiologist to diagnose it without a biopsy. He will have seen that his heart is thickening when he put the camera in and did the 2 echocardiograms, but, as the cancer doc says, it could be any number of things that is causing it.
They were very pleased with him today and I am back to my positive self. Thank you all so much for lifting me out of my utter despair.
Take care everyone and keep fighting. xxx
We have been to Plovdiv today for his last dose of chemo in Bulgaria. I told the oncologist of my angst and he said just the same as you -- that it's impossible for the cardiologist to diagnose it without a biopsy. He will have seen that his heart is thickening when he put the camera in and did the 2 echocardiograms, but, as the cancer doc says, it could be any number of things that is causing it.
They were very pleased with him today and I am back to my positive self. Thank you all so much for lifting me out of my utter despair.
Take care everyone and keep fighting. xxx
Re: Cardiac amyloidosis - anyone else have it?
I'm glad to hear that the doctors are pleased with his progress Sharona.
All my very best to you and your husband.
Dan
All my very best to you and your husband.
Dan
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Dan in Phoenix
Re: Cardiac amyloidosis - anyone else have it?
Hi everyone,
I was diagnosed last year. First with amyloidosis, then a week later they told me I had multiple myeloma too. The diagnosis was given after I had trouble recovering from surgery to remove my gall bladder. I gained 8 kg [18 lbs] in 2 days, had a hard time breathing, so had to sleep sitting upright and had a lot of vomiting. The surgeon was troubled by this and sent me to a physician. I was asked to return to hospital so they could run some test. I thought that they were going to tell me that my asthma medication was not working and I was having a reaction to it like I have with some common medication - my reaction is usually to vomit.
I was in hospital for about 10 days and they ran tons of blood tests, did so many scans and MRIs. I was told early on that I did not have asthma. In fact, my lungs were exceptional. To get rid of the fluid build up, they gave my frusemide [furosemide, Lasix], which dropped my blood pressure low enough for me to be taken to the cardiac care unit.
That's when I was introduced to my cardiologist. We were told there was thickening in the walls of my heart and they were doing tests to confirm their suspicions. I was shocked, as I get my cholesterol checked yearly and it is always fabulous. I never, ever thought I would have heart disease! I was only 43! Then they mentioned amyloidosis - we Googled it and I was like you, so upset - all the results are so negative, I stopped reading them.
A week later I was told about the myeloma and again we were floored. I refused to look it up to see if what we were being told was true. My husband did the research and gave me info in layman's terms.
I went for a cardiac biopsy and it is weird and your heart skips a beat when they take a sample. I had no pain from it and I think your hubby has to have one for confirmation.
The treatment for amyloidosis and myeloma is the same, so I had 5 cycles of chemo and then a stem cell transplant. That was at the end of July last year and I was told at my 100 day check up that the bone marrow biopsy showed no cancer cells.
The amyloidosis, which had slowly gotten worse over the first few months since I was diagnosed, is now stable. I just had another echo and am waiting for the results. We fully expect for there to be an improvement.
Please don't give up hope.
Take care
I was diagnosed last year. First with amyloidosis, then a week later they told me I had multiple myeloma too. The diagnosis was given after I had trouble recovering from surgery to remove my gall bladder. I gained 8 kg [18 lbs] in 2 days, had a hard time breathing, so had to sleep sitting upright and had a lot of vomiting. The surgeon was troubled by this and sent me to a physician. I was asked to return to hospital so they could run some test. I thought that they were going to tell me that my asthma medication was not working and I was having a reaction to it like I have with some common medication - my reaction is usually to vomit.
I was in hospital for about 10 days and they ran tons of blood tests, did so many scans and MRIs. I was told early on that I did not have asthma. In fact, my lungs were exceptional. To get rid of the fluid build up, they gave my frusemide [furosemide, Lasix], which dropped my blood pressure low enough for me to be taken to the cardiac care unit.
That's when I was introduced to my cardiologist. We were told there was thickening in the walls of my heart and they were doing tests to confirm their suspicions. I was shocked, as I get my cholesterol checked yearly and it is always fabulous. I never, ever thought I would have heart disease! I was only 43! Then they mentioned amyloidosis - we Googled it and I was like you, so upset - all the results are so negative, I stopped reading them.
A week later I was told about the myeloma and again we were floored. I refused to look it up to see if what we were being told was true. My husband did the research and gave me info in layman's terms.
I went for a cardiac biopsy and it is weird and your heart skips a beat when they take a sample. I had no pain from it and I think your hubby has to have one for confirmation.
The treatment for amyloidosis and myeloma is the same, so I had 5 cycles of chemo and then a stem cell transplant. That was at the end of July last year and I was told at my 100 day check up that the bone marrow biopsy showed no cancer cells.
The amyloidosis, which had slowly gotten worse over the first few months since I was diagnosed, is now stable. I just had another echo and am waiting for the results. We fully expect for there to be an improvement.
Please don't give up hope.
Take care
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
19 posts
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