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Re: Multiple myeloma vs. amyloidosis
Stay with it Dragon. Be your own best advocate! It's a really confusing disease to say the least. Did you do Velcade IV or SubQ. Mine is sub Q and no neuropathy. And I didn't gain weight with dex. Like I said, very blessed!
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JLB
Re: Multiple myeloma vs. amyloidosis
I was on dialysis for 3 months also. Kidneys are still improving. Wanted to do a permanent port for dialysis and I said no. Used diet and supplements instead. It worked!
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JLB
Re: Multiple myeloma vs. amyloidosis
Lesions discovered. Is it time to start freaking out?
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Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Looks like Zometa will have to be delayed. Gotta get some extractions.
Can someone tell me about cranial lesions? Should I get very concerned? Back to the oncologist on the 24th.
Thoughts please.
Can someone tell me about cranial lesions? Should I get very concerned? Back to the oncologist on the 24th.
Thoughts please.
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Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Update: I have reached a partial remission, whatever that means. I had my first infusion of Zometa. It feels like I have been in a bat fight without a bat. I also met with some transplant doctors. They tell me now is the time for transplant being that I am relatively healthy. Why does every med cause pain? I have some very small lesions and that is why Zometa. Your thoughts on transplant please. One more question, they keep telling me I have both amyloidosis and myeloma. How is that possible? On top of this I had 11 tooth extractions. Can it get any worse? I am holding up very well.
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Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Dragon,
Wow, it sounds like you sure have a lot going on!
Transplant: I assume your doctors are offering you an AUTOLOGOUS stem cell transplant, not an allogeneic transplant. Autologous is where the stem cells come from yourself. This is considered part of front-line therapy for multiple myeloma by many doctors and patients, though certainly controversy remains. We often call this kind "auto" for short.
Allogeneic is where the stem cells come from someone else. This is the one where people are looking for a "match". This is a much higher risk procedure with significant morbidity and mortality. It's not performed nearly as often, understandably. But the potential benefits are tremendous - IF it works, AND you survive it, it has the longest survival of ALL the treatments. Some people even use the "c" word (cure), though I am reluctant to speak that work out loud. "Allo" for short.
AL amyloidosis and multiple myeloma: I had AL amyloidosis in 2012, and had an auto stem cell transplant at Boston Medical Center and got full remission. Now I have multiple myeloma, (but not amyloidosis!) Certainly people can have both at the same time, though it's a minority of either kind of patient. Both diseases are caused by malfunction of the same type of cell in the bone marrow - the plasma cell - so the two diseases are siblings. Interestingly enough, most of the effective treatments for AL amyloidosis have been taken from the myeloma world, including auto stem cell transplants.
If this all seems confusing - don't worry! It is confusing! And it takes a while and some study to "get it".
Hang in there. You aren't alone!
Tracy
Wow, it sounds like you sure have a lot going on!
Transplant: I assume your doctors are offering you an AUTOLOGOUS stem cell transplant, not an allogeneic transplant. Autologous is where the stem cells come from yourself. This is considered part of front-line therapy for multiple myeloma by many doctors and patients, though certainly controversy remains. We often call this kind "auto" for short.
Allogeneic is where the stem cells come from someone else. This is the one where people are looking for a "match". This is a much higher risk procedure with significant morbidity and mortality. It's not performed nearly as often, understandably. But the potential benefits are tremendous - IF it works, AND you survive it, it has the longest survival of ALL the treatments. Some people even use the "c" word (cure), though I am reluctant to speak that work out loud. "Allo" for short.
AL amyloidosis and multiple myeloma: I had AL amyloidosis in 2012, and had an auto stem cell transplant at Boston Medical Center and got full remission. Now I have multiple myeloma, (but not amyloidosis!) Certainly people can have both at the same time, though it's a minority of either kind of patient. Both diseases are caused by malfunction of the same type of cell in the bone marrow - the plasma cell - so the two diseases are siblings. Interestingly enough, most of the effective treatments for AL amyloidosis have been taken from the myeloma world, including auto stem cell transplants.
If this all seems confusing - don't worry! It is confusing! And it takes a while and some study to "get it".
Hang in there. You aren't alone!
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Multiple myeloma vs. amyloidosis
Also Zometa: yes Zometa (zoledronic acid) gives a lot of people a flu-like feeling, including sometimes fever, bone aches, muscle aches, and general yuckiness. I had it bad, and after a couple of cycles where we tried to fuss with the timing of administration and meds to alleviate the side effects, we just switched to Aredia (pamidronate). Aredia is another of the same type of medication. The infusion is over 3 hours, and that's why most people don't start with it. But it doesn't give me nearly the same achiness. A 3-hour infusion is way better than 2 days in bed!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Multiple myeloma vs. amyloidosis
Yes it is auto stem cell. Still cannot figure out how someone can have both. I will never understand this conclusion. The tooth extractions had to be done anyway.
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Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Question: I am in the process of getting my stem cells harvested in preparation for AUTO stem cell transplant. I have heard good and bad about the transplant. Anyone would like to share their experience. I am in partial remission at this time. Benefit vs risk is a huge player for me. Doctors say now is the time because I am relatively healthy.
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Dragon62 - Name: Robert Fuller
- Who do you know with myeloma?: Blood disorder
- When were you/they diagnosed?: 3 Jul 2015
- Age at diagnosis: 58
Re: Multiple myeloma vs. amyloidosis
Hi Robert,
I am going to set aside the issue of whether or not you should have a transplant. Given your specific circumstances, which involve both myeloma and amyloidosis, not to mention how you have responded so far to different treatments, I think it's really a question that is best decided upon together with a myeloma / amyloidosis specialist.
As for the experiences others have had with transplants, and opinions about them, you will find MANY discussions here in the forum on the subject. This link,
https://myelomabeacon.org/forum/search.php?keywords=transplant+transplantation+sct+asct+bmt&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
brings up over 500 (!) transplant-related forum discussions, and I wouldn't be surprised if there are others that aren't in the list.
Also, if you go to this posting (which is where I got the above link),
https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html
and go to the bottom of the posting, you'll find a list of forum threads where people who were going through a transplant posted updates during their transplants.
Remember, though, that how people respond to a transplant is very much like myeloma itself -- it's a very individual experience.
Best of luck to you,
Cheryl
I am going to set aside the issue of whether or not you should have a transplant. Given your specific circumstances, which involve both myeloma and amyloidosis, not to mention how you have responded so far to different treatments, I think it's really a question that is best decided upon together with a myeloma / amyloidosis specialist.
As for the experiences others have had with transplants, and opinions about them, you will find MANY discussions here in the forum on the subject. This link,
https://myelomabeacon.org/forum/search.php?keywords=transplant+transplantation+sct+asct+bmt&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
brings up over 500 (!) transplant-related forum discussions, and I wouldn't be surprised if there are others that aren't in the list.
Also, if you go to this posting (which is where I got the above link),
https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html
and go to the bottom of the posting, you'll find a list of forum threads where people who were going through a transplant posted updates during their transplants.
Remember, though, that how people respond to a transplant is very much like myeloma itself -- it's a very individual experience.
Best of luck to you,
Cheryl
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