Hello everyone!
I've been diagnosed last April with multiple myeloma. Even though I still have no symptoms, I have developed amyloidosis, which causing a thickening to my face's soft tissue (mainly around the mouth area, till the chin! and hands/feet/elbows ). This has been actually the main reason why I went to see the doctor two and half years ago! And since then, I’ve been transferred from one doc to the other till they finally found out that this soft tissue thickening is because proteins deposits in the small veins triggered by the multiple myeloma.
To sum up:
For the moment, according to my doctors in Austria, I don't need to take any medications nor I have to undergo any therapies, but the doc means that one day I will definitely will! Maybe Velcade, followed by stem cell transplant.
Has anyone of you also had amyloidosis in the course of his/her multiple myeloma? And is there any natural way to reduce these deposits? My doc told me about green tea. I have been drinking it since then (I also take green tea extracts).
Also, how can I be sure that it is not spreading all over my body?!
Thank you all!
Forums
10 posts
• Page 1 of 1
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Hello Ziad,
I am a long term survivor of myeloma with AL amyloidosis. I was dignosed in 1987 and went into remission for 25 years with very aggressive treatment (for the time) but without a bone marrow transplant. For me it affected every organ they biopsied including my heart, liver, GI tract and kidneys. They used to think that once amyloid was deposited in your tissues it could never be removed or get better but I am an example where over time the amyloid just disappeared. For me it seemed to be a natural clearing over about 5 years.
It came back last year in my kidneys (as shown by very high protein loss in my urine - mostly albumin) and my heart seemed impacted by thickening of the walls and EKG function. I'm now back in remission and things are improving again for me with treatment that included CyBorD (cyclophosphamide, Velcade, dexamethasone) for about a year. Now we've reduced the dex for 40 mg to 20 mg and now 8 mg, removed the cyclophosphamide, and added low dose thalidomide - 50mg. All these new drugs were not available when I was first diagnosed.
The myeloma cells were always low for me, 15% in 1987 and only ~3% last year so it doesn't take many cells to cause big problems.
Ziad, I'd be very diligent about making sure your doctors monitor you very closely to make sure the amyloid isn't being deposited in other places besides your face. You should have your urine checked often and your heart monitored with EKGs and echocardiograms. Also, I think Europe has a test that not available in the US where they attach a marker to an antibody that binds amyloid deposits which can be seen with a scan. This test should show if it is deposited in other places.
So the bottom line is that no one knows why amyloid is deposited differently in one person compared to another. Sometimes amyloid can be deposited very quickly and there is not a good treatment to remove it once it is deposited. A swollen face is not a big problem but kidney or heart failure is so keep a very close watch on it and question your doctors closely.
I'd also find an amyloid expert in Austria. There's a doctor Giampaolo Merlini, Amyloidosis Research and Treatment Center, Biotechnology Research Laboratories, Fondazione IRCCS Policlinico San Matteo, Department of Biochemistry, University of Pavia, who you might consider.
I hope there are no other deposits of amyloid anywhere else in your body and you don't need any treatment for a long time.
All the best to you.
Dan
I am a long term survivor of myeloma with AL amyloidosis. I was dignosed in 1987 and went into remission for 25 years with very aggressive treatment (for the time) but without a bone marrow transplant. For me it affected every organ they biopsied including my heart, liver, GI tract and kidneys. They used to think that once amyloid was deposited in your tissues it could never be removed or get better but I am an example where over time the amyloid just disappeared. For me it seemed to be a natural clearing over about 5 years.
It came back last year in my kidneys (as shown by very high protein loss in my urine - mostly albumin) and my heart seemed impacted by thickening of the walls and EKG function. I'm now back in remission and things are improving again for me with treatment that included CyBorD (cyclophosphamide, Velcade, dexamethasone) for about a year. Now we've reduced the dex for 40 mg to 20 mg and now 8 mg, removed the cyclophosphamide, and added low dose thalidomide - 50mg. All these new drugs were not available when I was first diagnosed.
The myeloma cells were always low for me, 15% in 1987 and only ~3% last year so it doesn't take many cells to cause big problems.
Ziad, I'd be very diligent about making sure your doctors monitor you very closely to make sure the amyloid isn't being deposited in other places besides your face. You should have your urine checked often and your heart monitored with EKGs and echocardiograms. Also, I think Europe has a test that not available in the US where they attach a marker to an antibody that binds amyloid deposits which can be seen with a scan. This test should show if it is deposited in other places.
So the bottom line is that no one knows why amyloid is deposited differently in one person compared to another. Sometimes amyloid can be deposited very quickly and there is not a good treatment to remove it once it is deposited. A swollen face is not a big problem but kidney or heart failure is so keep a very close watch on it and question your doctors closely.
I'd also find an amyloid expert in Austria. There's a doctor Giampaolo Merlini, Amyloidosis Research and Treatment Center, Biotechnology Research Laboratories, Fondazione IRCCS Policlinico San Matteo, Department of Biochemistry, University of Pavia, who you might consider.
I hope there are no other deposits of amyloid anywhere else in your body and you don't need any treatment for a long time.
All the best to you.
Dan
-
Dan in Phoenix
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Here is info regarding the scan that Dan mentions: the SAP
http://www.ucl.ac.uk/medicine/amyloidosis/nac/overview
http://www.ucl.ac.uk/medicine/amyloidosis/nac/overview
-
DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Thanks for the follow up Dana. I wish we had this test in the US.
-
Dan in Phoenix
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Dan, I was surprised to read that we did not (even at the U.S. centers for amlyoid excellence, Boston U and Mayo). Perhaps it is in trials here? Will be something to research further.
All the very best to you, Dan.
All the very best to you, Dan.
-
DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Hello Dan,
Thanks a lot for your reply! you have no idea how this reply filled me with hope! I wish you well and hope this time you get another 25 years remission, or at least till they find a cure to multiple myeloma/AL.
In my case, the doctors insist i have no end-organ damage, even though i showed proteins in my urine but the doc said it is just above normal range, so it wouldn't be a problem. but for me, this means that my kidneys are affected!
After many consultations among the doctors and with the amyloidosis centre in Heidelberg, Germany (a reputable specialized centre in Germany) they decided to keep monitoring me closely and not to start treatment, specially that my protein level in the blood work up is not rising.
But honestly, Dan, I am not comfortable with that approach. Not because of the multiple myeloma, but basically because of the amyloidosis. I do have it in my face but also in my hands (carpal tunnel syndrome, tingling, numbness) and feet. They mean that some amyloids have affinity to deposit in certain organs like soft tissues (under the skin for instance) and since I have this thickening for more than 3 or 4 years now, it is unlikely that vital organs will be involved (at least for the moment), hence the "wait and see" approach. But as I said, if I show already minor protein spilling in my urine, why not act immediately before it gets worse! That's what was worrying me.
I think I will tell him (next week i have an appointment) to go on with his very first idea, which was to have Velcade + dex to stop the amyloids, do the harvest for a later stem cell transplant when necessary, then "wait and see" ... I think this would be more suitable for me ... also because living with the anxiety is horrible!
I will tell him about this test and see what will come out! I will also contact this Italian doctor, may be he could have a good idea!
Have you tried anything natural that helped you? Green tea for instance? Or green tea extracts? You should real this study on green tea on the Heidelberg homepage, very interesting:
http://www.hunstein-egcg.de/
Again Dan, I can't thank you enough!
All the best in life!
ziad
Thanks a lot for your reply! you have no idea how this reply filled me with hope! I wish you well and hope this time you get another 25 years remission, or at least till they find a cure to multiple myeloma/AL.
In my case, the doctors insist i have no end-organ damage, even though i showed proteins in my urine but the doc said it is just above normal range, so it wouldn't be a problem. but for me, this means that my kidneys are affected!
After many consultations among the doctors and with the amyloidosis centre in Heidelberg, Germany (a reputable specialized centre in Germany) they decided to keep monitoring me closely and not to start treatment, specially that my protein level in the blood work up is not rising.
But honestly, Dan, I am not comfortable with that approach. Not because of the multiple myeloma, but basically because of the amyloidosis. I do have it in my face but also in my hands (carpal tunnel syndrome, tingling, numbness) and feet. They mean that some amyloids have affinity to deposit in certain organs like soft tissues (under the skin for instance) and since I have this thickening for more than 3 or 4 years now, it is unlikely that vital organs will be involved (at least for the moment), hence the "wait and see" approach. But as I said, if I show already minor protein spilling in my urine, why not act immediately before it gets worse! That's what was worrying me.
I think I will tell him (next week i have an appointment) to go on with his very first idea, which was to have Velcade + dex to stop the amyloids, do the harvest for a later stem cell transplant when necessary, then "wait and see" ... I think this would be more suitable for me ... also because living with the anxiety is horrible!
I will tell him about this test and see what will come out! I will also contact this Italian doctor, may be he could have a good idea!
Have you tried anything natural that helped you? Green tea for instance? Or green tea extracts? You should real this study on green tea on the Heidelberg homepage, very interesting:
http://www.hunstein-egcg.de/
Again Dan, I can't thank you enough!
All the best in life!
ziad
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Hi Ziad,
I'm glad your doctors are following you closely, I didn't get that from your first post and wanted to make sure you were getting proper attention and care. We follow my antibody levels with a blood test called free light chains which is a good way to see how many amyloid precursors are in your blood.
As you'll see from this site and with talking with patients there are no right or wrong answers when it comes to treatment choices. We all have to make decisions that make us the most comfortable- we know in our hearts what is most important to ourselves.
I like your idea of having stem cells in reserve for a transplant in case you need it. If amyloid does affect a major organ like your heart it is often a race against time to get the antibody down fast before it causes organ failure. If your heart is impacted you might be too sick for a transplant by the time they can collect your stem cells but having them in storage would let them go immediately to transplant if needed..
Do check out that test and talk with Dr. Merlini if you can. He may have insight that others don't like if someone doesn't show organ infiltration after 3 years they are not likely to progress and you can be further reassured.
As with everyone on this site I support whatever decision you make in your treatment choices. I truly hope that since it has been 3-4 years now without organ infiltration you are one of the lucky ones that never have it in your major organs and you live a long and enjoyable life..
For peace of mind it should be further comforting to be prepared and proactive just in case.
All my very best to you.
Dan
I'm glad your doctors are following you closely, I didn't get that from your first post and wanted to make sure you were getting proper attention and care. We follow my antibody levels with a blood test called free light chains which is a good way to see how many amyloid precursors are in your blood.
As you'll see from this site and with talking with patients there are no right or wrong answers when it comes to treatment choices. We all have to make decisions that make us the most comfortable- we know in our hearts what is most important to ourselves.
I like your idea of having stem cells in reserve for a transplant in case you need it. If amyloid does affect a major organ like your heart it is often a race against time to get the antibody down fast before it causes organ failure. If your heart is impacted you might be too sick for a transplant by the time they can collect your stem cells but having them in storage would let them go immediately to transplant if needed..
Do check out that test and talk with Dr. Merlini if you can. He may have insight that others don't like if someone doesn't show organ infiltration after 3 years they are not likely to progress and you can be further reassured.
As with everyone on this site I support whatever decision you make in your treatment choices. I truly hope that since it has been 3-4 years now without organ infiltration you are one of the lucky ones that never have it in your major organs and you live a long and enjoyable life..
For peace of mind it should be further comforting to be prepared and proactive just in case.
All my very best to you.
Dan
-
Dan in Phoenix
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
Hallo Dan,
I have contacted Dr.Merlini and he replied immediately! He is very helpful and cooperative. He gave me some useful infos to better assess my case and to know whether I need to start therapy or continue follow up.
Thanks Dan!
Regards,
I have contacted Dr.Merlini and he replied immediately! He is very helpful and cooperative. He gave me some useful infos to better assess my case and to know whether I need to start therapy or continue follow up.
Thanks Dan!
Regards,
Re: Smoldering multiple myeloma & amyloidosis (amyloid-p)
That's excellent Ziad. I'm glad to hear it. I've found that most experts are very helpful when you ask. All my best to you.
Dan
Dan
-
Dan in Phoenix
10 posts
• Page 1 of 1