My husband was diagnsed in August of 2009.
Six months after sct, March of 21010, not only has their been no response...the multiple myeloma has gotten significantly worse. The onc at Moffitt says the average with Bill's
aggressive multiple myeloma is 1.5 years. He has them baffled a bit in that
his platelets can vary so much in just a day or two, even after a units.
More blood work yesterday to see if his platelets are sticking to
the tube...(wishful thinking, I believe.). Since my husband had
such a poor response to his first transplant they are not even
considering another.
Anyone have suggestions for anemia? Bill is anemic and constantly having
chills and appetite needs enhancing. Of course he has much more
serious issues....
Thanks for any and all information! :-\
Jodi
Florida
Forums
8 posts
• Page 1 of 1
Re: multiple myeloma Worse After SCT
Hi Jodi,
I am so sorry to hear about the problems your husband is having...I am a Stage 4 Breast Cancer patient but also work with Cancer patients everyday...
I highly recommend you take your husband to see a Naturopathic, Homeopathic or Ayurvedic Dr in your area..they will help determine the best course of therapy for him and trust me it will HELP..
Here is a website you can look at just for reference..don't do anything until you hv seen a professional...
http://www.holisticonline.com/remedies/anemia.htm
I have been thru this as well and use all of the above..I still use traditional medicine for other things bt the side effects of some meds are way too horrible..
I know from personal experience and from working in this field it will help...good luck! My thoughts and prayers are with you both.
Peace and Love
Trisha
I am so sorry to hear about the problems your husband is having...I am a Stage 4 Breast Cancer patient but also work with Cancer patients everyday...
I highly recommend you take your husband to see a Naturopathic, Homeopathic or Ayurvedic Dr in your area..they will help determine the best course of therapy for him and trust me it will HELP..
Here is a website you can look at just for reference..don't do anything until you hv seen a professional...
http://www.holisticonline.com/remedies/anemia.htm
I have been thru this as well and use all of the above..I still use traditional medicine for other things bt the side effects of some meds are way too horrible..
I know from personal experience and from working in this field it will help...good luck! My thoughts and prayers are with you both.
Peace and Love
Trisha
Re: multiple myeloma Worse After SCT
Hi Jodi,
Sorry to hear of your husband's difficulty. Procit shots are what is often prescribed to help raise the RBC and you can give them to him. Be sure to call your insurance company first and ask if they have a Specialty Pharmacy they use because these shots are about $2K a piece and only through a specialty pharmacy can you get them for more reasonable prices. I got 2 mos supply for $40!!!!
I would also check online for foods that help combat anemia, but if he is struggling so much, I don't know that he will have a great appetite.
Chances are the SCT didn't make his myeloma worse, but certainly compromised his over all health. If he had not done the SCT his myeloma would have advanced but he wouldn't have been compromised with now a suppressed immune system. Either way, it would not have been pretty and there is no way to know unless you try.
I agree with Trish, if you have the funds and the strength, consider some alternative routes since the mainstream medicine choices are not working. You can check out David Emerson's blog (listed under resources on this site) for some alternative options that may be of interest to you.
Little Rock, Arkansas (UAMS) has been having some success with the high risk, aggressive multiple myeloma, but if your husband is seriously compromised, he may simply be too ill to make it there.
Good luck,
Lori
Caregiver
Sorry to hear of your husband's difficulty. Procit shots are what is often prescribed to help raise the RBC and you can give them to him. Be sure to call your insurance company first and ask if they have a Specialty Pharmacy they use because these shots are about $2K a piece and only through a specialty pharmacy can you get them for more reasonable prices. I got 2 mos supply for $40!!!!
I would also check online for foods that help combat anemia, but if he is struggling so much, I don't know that he will have a great appetite.
Chances are the SCT didn't make his myeloma worse, but certainly compromised his over all health. If he had not done the SCT his myeloma would have advanced but he wouldn't have been compromised with now a suppressed immune system. Either way, it would not have been pretty and there is no way to know unless you try.
I agree with Trish, if you have the funds and the strength, consider some alternative routes since the mainstream medicine choices are not working. You can check out David Emerson's blog (listed under resources on this site) for some alternative options that may be of interest to you.
Little Rock, Arkansas (UAMS) has been having some success with the high risk, aggressive multiple myeloma, but if your husband is seriously compromised, he may simply be too ill to make it there.
Good luck,
Lori
Caregiver
-
habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: multiple myeloma Worse After SCT
Are they considering an allogeneic stem cell transplant? I had two unsuccessful autos and now I will have an allo in January. From what I gather from all my research, talking to other allo survivors and my doctors, they are saying this is the "cure" for multiple myeloma.
Good luck with your treatment choice. My best wishes.
Good luck with your treatment choice. My best wishes.
Re: multiple myeloma Worse After SCT
If you haven't already, you might want to check on the blog The Scoop on Dan. He just recently did an Allo at MD Anderson.
http://scoopondan.blogspot.com/
Lori
http://scoopondan.blogspot.com/
Lori
-
habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: multiple myeloma Worse After SCT
We are at MIRT and Bill will begin the TT5/Chemo ("cocktail" as I call it) treatment regime tomorrow.
Bill was very weak...but they are building him up. Turns out his B12 was dangerously low in addition
to his other levels which I previously mentioned. His platelets are still
an issue...can't seem to keep them up.
The G study they do here confirmed he has aggressive multiple myeloma but the team here has given us hope
and that means so much. B12 shots have begun and he has received many units of platelets
and blood. The blood levels have gone up...platelets only a bit.
Since you all were kind enough to offer suggestions, I wanted to give u an
update!
Thanks!
Jodi
Bill was very weak...but they are building him up. Turns out his B12 was dangerously low in addition
to his other levels which I previously mentioned. His platelets are still
an issue...can't seem to keep them up.
The G study they do here confirmed he has aggressive multiple myeloma but the team here has given us hope
and that means so much. B12 shots have begun and he has received many units of platelets
and blood. The blood levels have gone up...platelets only a bit.
Since you all were kind enough to offer suggestions, I wanted to give u an
update!
Thanks!
Jodi
-
jhumhc - Name: Jodi&Bill
- Who do you know with myeloma?: Husband Bill
- When were you/they diagnosed?: August 2009
- Age at diagnosis: 63
Re: multiple myeloma Worse After SCT
Hi Jodi, We treated in Little Rock but are low risk. I have friends I have made there that are high risk and aggressive who have done quite well, similar age to your spouse. You are in a good place, they will take good care of you. If anyone can have success with high risk myeloma its Dr. B's team there.
Best,
Lori
Best,
Lori
-
habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
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