I’d like to quickly tell my families story regarding the battle with Multiple Myeloma, and also ask for any others opinions/information regarding a few questions I have.
It all started two years ago, when my mother, then 52 collapsed with what turned up to be a crushed vertebrae. After surgery, it was pinned and stable, but we were then delivered the news that she had cancer. Initially diagnosed as Solitary Plasmacytoma.
She entered a treatment regime of Thalidomide followed by a stem cell transplant. At this stage we thought this would have given several years of remission and good health. Unfortunately, less than a year later she started feeling very tired, began having aches and pains and eventually after another bone marrow aspirate they told us that the cancer cells were active again, and were rising. It went from 6% to 9% in two weeks.
This led the doctors to start the next dose of therapy. This time they are injecting Velcade on a three week cycle and on liquid bone stenghteners . Unfortunately she is in extreme pain in both the upper back and ribs. She has slow release morphine to help deal with this but it is very restrictive and reduces quality of life.
That is her story in very brief, and not going into blood numbers etc. She is still young, very healthy and determined to beat it. This leads me on to a few questions which she has and to date has found no real answers to.
1. Bone pain – Will the bone pain reduce when and if the Velcade starts working and hopefully brings the cancer count down? Or is this pain going to be with her for all time. She has had one dose of radiotherapy on the mainly vertebrae which is affected.
2. Curecumin - We have read much about curecumin and we were hoping to start taking this in combination with the Velcade. Does anyone have any experience with this?
3. Allogeneic Stem Cell Transplant – We have also read that the only real way to get on top of this cancer is to go through an allogeneic transplant (aware of the considerable risks). Is this the case? She has a sister who is very similar genetically and would be willing to help. How could we get tests to see if she was a match? Would this treatment be recommended by anyone?
4. Velcade – If this treatment does dramatically kill the cancer cells, could she be on low dose for a long time?
Thanks to everyone for reading and hopefully responding. We are determined to find a way where we can move forward and keep her having a good quality of life. We are realistic to the facts and figures of an average 48 months, and aware she has had this for two years already, but really looking for some realistic hope so we do something to help her.
Regards,
Forums
6 posts
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Re: Our Story - Questions and looking for info.
Hi Scruffy212
I am sorry to hear about your Mom. While I am not too comfortable personally commenting on most of your concerns I Have posted a link I just read on supplements. I have just started taking Curcumin and have no facts yet but it looks promising. Also, search this site for allogeneic transplants. There is much info on transplants. There are some who have had good results with allo transplants.
Also, I have to say that I think 48 months is a very old statistic and given your moms age and health otherwise I think she potentially has many years to live. Stay positive and keep researching.
Best of Luck and I hope her paid subsides,
Art
https://myelomabeacon.org/forum/natural-supplements-t883.html
I am sorry to hear about your Mom. While I am not too comfortable personally commenting on most of your concerns I Have posted a link I just read on supplements. I have just started taking Curcumin and have no facts yet but it looks promising. Also, search this site for allogeneic transplants. There is much info on transplants. There are some who have had good results with allo transplants.
Also, I have to say that I think 48 months is a very old statistic and given your moms age and health otherwise I think she potentially has many years to live. Stay positive and keep researching.
Best of Luck and I hope her paid subsides,
Art
https://myelomabeacon.org/forum/natural-supplements-t883.html
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Our Story - Questions and looking for info.
hI Scruffy! replying to your question on 'bone pain'. I had terrible pain for a couple of months after my compression fractures, and was on pain meds and muscle relaxants to get relief from that. I am much better again now.....I still get aches and pains, but nothing like how bad it was. I think that the bone building medications, the bisphonates, are what helped with the healing and reduction of pain. Also have to be very careful with any lifting, etc.
Best wishes to your Mom. I agree with Art...you just cannot worry about statistics all the time. Because there are newer, better treatments available now, those numbers should be changing too.
Best wishes to your Mom. I agree with Art...you just cannot worry about statistics all the time. Because there are newer, better treatments available now, those numbers should be changing too.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Our Story - Questions and looking for info.
Scruffy212,
Sorry to hear about your mother.
The Beacon just reported on the IMWG Consensus Statement regarding Maintenance. That is a good place to start with respect to long term maintenance with Velcade.
https://myelomabeacon.org/news/2012/02/01/experts-publish-consensus-statement-on-maintenance-therapy-in-multiple-myeloma/
With respect to Allo transplants, I think most Myeloma Doctors do a great job in making them risky procedures. Unfortunately, your Mother falls into that category. This is research from 2004:
"In a multivariate analysis, relapse after prior high-dose chemotherapy was the most significant risk factor for TRM (hazard ratio [HR], 2.80; 95% CI, 1.16–6.74; P = .02), relapse (HR, 4.14; 95% CI, 2.04–8.38; P < .001), event-free survival (HR, 3.11; 95% CI, 1.77–5.46; P < .001), and overall survival (HR, 2.69; 95% CI, 1.35–5.35; P = .005). "
http://www.bbmt.org/article/S1083-8791(04)00272-1/fulltext
This was just published by the Fred Hutchinson Cancer Research Center:
"In multivariable analysis of patients receiving only non-myeloablative transplants, decreased overall survival and PFS were associated with relapse after a prior autograft and a β2 microglobulin >4.0. Transplant mortality was reduced and only influenced by a prior tandem autograft."
http://www.ncbi.nlm.nih.gov/pubmed/22327126
My point being, it is a very big decision to do an Allo after a relapse to an Auto due to the procedure becoming riskier because it is being applied at the wrong time. OTOH Allo certainly gives the best chance of CR in a relapsed setting. Slide 26 of this presentation begins a short discussion of Allo transplants when used as salvadge therapy.
http://www.eaestreaming.gr/KROGER/index.htm
Hope that helps and my best wishes go out to your Mother.
Mark
Sorry to hear about your mother.
The Beacon just reported on the IMWG Consensus Statement regarding Maintenance. That is a good place to start with respect to long term maintenance with Velcade.
https://myelomabeacon.org/news/2012/02/01/experts-publish-consensus-statement-on-maintenance-therapy-in-multiple-myeloma/
With respect to Allo transplants, I think most Myeloma Doctors do a great job in making them risky procedures. Unfortunately, your Mother falls into that category. This is research from 2004:
"In a multivariate analysis, relapse after prior high-dose chemotherapy was the most significant risk factor for TRM (hazard ratio [HR], 2.80; 95% CI, 1.16–6.74; P = .02), relapse (HR, 4.14; 95% CI, 2.04–8.38; P < .001), event-free survival (HR, 3.11; 95% CI, 1.77–5.46; P < .001), and overall survival (HR, 2.69; 95% CI, 1.35–5.35; P = .005). "
http://www.bbmt.org/article/S1083-8791(04)00272-1/fulltext
This was just published by the Fred Hutchinson Cancer Research Center:
"In multivariable analysis of patients receiving only non-myeloablative transplants, decreased overall survival and PFS were associated with relapse after a prior autograft and a β2 microglobulin >4.0. Transplant mortality was reduced and only influenced by a prior tandem autograft."
http://www.ncbi.nlm.nih.gov/pubmed/22327126
My point being, it is a very big decision to do an Allo after a relapse to an Auto due to the procedure becoming riskier because it is being applied at the wrong time. OTOH Allo certainly gives the best chance of CR in a relapsed setting. Slide 26 of this presentation begins a short discussion of Allo transplants when used as salvadge therapy.
http://www.eaestreaming.gr/KROGER/index.htm
Hope that helps and my best wishes go out to your Mother.
Mark
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Mark
Re: Our Story - Questions and looking for info.
When my husband was first diagnosed, he was having a lot of bone pain. After his myeloma numbers came down (with treatment of Velcade, Dex, and Revlimid and biophosphates), his pain is almost nil.
Allo transplant is not necessarily the next step. Make sure her doctor discusses all the different options.
Allo transplant is not necessarily the next step. Make sure her doctor discusses all the different options.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Our Story - Questions and looking for info.
Scruffy, I agree with others, please don't pay attention to the statistics. Many of the numbers are outdated and do not take into account that there are several new drugs out there that are putting this cancer into remission for a great number of people. Don't lose hope.
Regarding the curcumin, there is a lot of promising information out there. All I will say is that my husband is taking 8 - 12 grams (yes, grams) a day, per his doctor at MD Anderson.
Velcade - my husband is currently getting the weekly IV Velcade. SubQ is becoming increasingly available, but our health system in Michigan does not offer it yet. However, I have read that many people do take maintenance chemo, but others do not. No two cases are the same and each person really does react differently.
Read as much as you can, but don't trust the all statistics you see.
Regarding the curcumin, there is a lot of promising information out there. All I will say is that my husband is taking 8 - 12 grams (yes, grams) a day, per his doctor at MD Anderson.
Velcade - my husband is currently getting the weekly IV Velcade. SubQ is becoming increasingly available, but our health system in Michigan does not offer it yet. However, I have read that many people do take maintenance chemo, but others do not. No two cases are the same and each person really does react differently.
Read as much as you can, but don't trust the all statistics you see.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
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