Hi LibbyC,
I forgot to mention in my last post that you should ask your Doctor if you should try using Vitamin D therapy. It has shown some success in reducing GVHD and it is not expensive. My Doctor also gave me Culturelle antibiotic to help prevent against gut GVHD. That is just her observation that it helps against gut GVHD. I had no significant problems, but the majority of the credit goes to the ATG used prior to my Donor's cells being infused.
http://www.ncbi.nlm.nih.gov/pubmed/22773121
http://www.ncbi.nlm.nih.gov/pubmed/22265707
I will try and answer the question of why an allo in first CR works better than at any other time as best as a non-scientist can! Typically a myeloma patient experiences shorter remissions as they relapse - the 1st remission is longer than the 2nd, etc. Myeloma cells get tougher to kill because they adapt as they are exposed to different drugs. While no "myeloma stem cell" or progenitor cell has been definitely identified, there appears to be some cell(s) that drugs like Velcade, carfilzomib, lenalidomide, melphalan and the others currently used do not kill. We can conclude from the lessened relapse risk of allo patients that the immunotherapy from the donor cells is what provides the long term remissions.
As you know from personal experience, it is possible for the graft vs myeloma (GVM) effect to take a patient from a less than CR state to a CR state. It has also been observed that patients in CR can go to a deeper state of remission called a molecular CR.
"Molecular remissions are seen more often after allogeneic than after autologous stem cell transplantation. In patients who achieved clinical CR, 9 out of 14 were allograft patients, but only 2 out of 15 autograft patients entered molecular remission. It is of interest that molecular remission after allografting occurred in some patients more than 3 years after transplantation."
http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
Since some of the patients go to molecular CR more than 3 years after allo, we can conclude that the full effect of the allo is not seen until 3 years or more after the transplant. That is observed in progression free survival (PFS) curves on patients that do allo transplants. Take note of the PFS curve of the First Line group in the study I mentioned above. Patients relapse at a pretty fast rate for the first 22 months. Between 3-4 years there are a few relapses and then the curve goes flat, meaning the relapses have stopped at what looks like a little over 50%. Relapses do happen after 5 years, but they are not common. Take note that the Not First Line PFS curve is basically the same shape, but due to the high relapse rate and higher TRM it drops really fast in the first 18 months and only has around 20% of the patients alive and progression free at 5 years while the overall survival curve is flat at 77% (since year 2) for the upfront group. The PFS curve is flat but at a much lower percentage.
https://ash.confex.com/ash/2011/webprogram/Paper37067.html
Since the only time a myeloma patient typically gets a 3 year plus remission is in their first CR that makes the first CR the best chance a patient has to have a remission long enough to allow the allo to fully work.
Does that make sense?
Mark
Forums
Re: 22 year old female with Multiple Myeloma
Hi Mark, thanks for your detailed explanations about allos. I am being treated at the NIH in a non-transplantation protocol but I did find out that allos are done there but only in the context of cutting-edge clinical trials. You have to be in a clinical trial to be treated at the NIH. I am not sure what their success rate is but the doctors are world-class. Also, I drink a lot of the yogurt like drink, kefir, which is loaded with probiotics that aid one's gut immune system and beneficial flora and it certainly benefits digestion. There are plenty of studies which support this. Could this help with gut GVHD? Thanks. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: 22 year old female with Multiple Myeloma
Hi Mark,
Thanks for the advice on Vitamin D. What dose do you take? I currently take 500 IU/day primarily for the bones and wasn't aware of its potential for helping against developing gut GVHD. My bones are doing fine and the last DEXA scan indicated that I was in the normal range for my age and this was similiar to before the allo (and not osteoporetic as I was just after dx).
Thanks for your explanation on why allos work best in the first CR. I found the articles very informative. multiple myeloma is certainly a complicated disease with many variables. I did ask my consultant how did the myeloma cells develop resistance ie was there a population polymorphism or was it by mutation. Either way you are selecting the ones fittest for that environment (ultimately making the situation worse for the patient). She told me that currently the mechanism was not well understood. The following from the paper you cited did stick out in my mind."Targeting molecular remission also implies the recently discovered myeloma stem cells, a rare population of cells that maintain the ability to self-renew and sustain tumor.52 "http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
After reading the articles I consider myself very fortunate to have achieved CR with a chemorefractory disease after a failed autograft. It has been 18mths since my allo - I intend to surprise all my doctors by making it for at least another 20 years!!!
Your input is greatly appreciated
Libby
Thanks for the advice on Vitamin D. What dose do you take? I currently take 500 IU/day primarily for the bones and wasn't aware of its potential for helping against developing gut GVHD. My bones are doing fine and the last DEXA scan indicated that I was in the normal range for my age and this was similiar to before the allo (and not osteoporetic as I was just after dx).
Thanks for your explanation on why allos work best in the first CR. I found the articles very informative. multiple myeloma is certainly a complicated disease with many variables. I did ask my consultant how did the myeloma cells develop resistance ie was there a population polymorphism or was it by mutation. Either way you are selecting the ones fittest for that environment (ultimately making the situation worse for the patient). She told me that currently the mechanism was not well understood. The following from the paper you cited did stick out in my mind."Targeting molecular remission also implies the recently discovered myeloma stem cells, a rare population of cells that maintain the ability to self-renew and sustain tumor.52 "http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
After reading the articles I consider myself very fortunate to have achieved CR with a chemorefractory disease after a failed autograft. It has been 18mths since my allo - I intend to surprise all my doctors by making it for at least another 20 years!!!
Your input is greatly appreciated
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: 22 year old female with Multiple Myeloma
Hi D'Ann, I am sorry to read of your diagnosis with multiple myeloma at your young age. Hope that the new round of induction chemotherapy works well for you. I am sure that you must be consulting closely with your doctors as to what decisions to make. It is nice that you have a sister who matches you for allo transplant in case you decide to go that route. It's good that you found the Beacon as a news source also. If you type any topic into the 'search' box at the top right of the home page, usually a number of articles and forum topics will appear. Wishing you all the best and your youth and convictions should help you to overcome this disease. Please keep us posted of your progress if you would like to do that.
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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: 22 year old female with Multiple Myeloma
Hi TerryL,
I hope all is going well in the trial. I never realized that 70% of your immune system is in the digestive track. Those healthy flora in the yogurt have to be helpful. Prior to my diagnosis I did a lot of the "right" things - exercised, ate low carb, took supplements, etc. I did not eat much yogurt though - maybe that would have helped. The one thing I used a lot of prior to my diagnosis was green tea. I used to drink it hot, iced and I took standardized extracts. I see some reference to that being helpful to myeloma patients - definitely not this one!
I did see that Dr. Durie mentioned Splenda as something to avoid. I knew the other sugar substitutes were to be avoided but not that one. I have to try and find out more about that, because I do use some Splenda.
Mark
I hope all is going well in the trial. I never realized that 70% of your immune system is in the digestive track. Those healthy flora in the yogurt have to be helpful. Prior to my diagnosis I did a lot of the "right" things - exercised, ate low carb, took supplements, etc. I did not eat much yogurt though - maybe that would have helped. The one thing I used a lot of prior to my diagnosis was green tea. I used to drink it hot, iced and I took standardized extracts. I see some reference to that being helpful to myeloma patients - definitely not this one!
I did see that Dr. Durie mentioned Splenda as something to avoid. I knew the other sugar substitutes were to be avoided but not that one. I have to try and find out more about that, because I do use some Splenda.
Mark
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Mark
Re: 22 year old female with Multiple Myeloma
Hi LibbyC,
That is great that the GVM got you to CR - you deserve it. Usually immune systems have memory of what they kill. Hopefully your donor immune system has the myeloma cells on its "To Be Killed" list forever!
Mark
That is great that the GVM got you to CR - you deserve it. Usually immune systems have memory of what they kill. Hopefully your donor immune system has the myeloma cells on its "To Be Killed" list forever!
Mark
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Mark
Re: 22 year old female with Multiple Myeloma
Thank you to everyone who has responded and offered input and feedback. I certainly do appreciate it! After visiting with a Doctor yesterday who is a myeloma expert, I was recommended the following treatment plan: an auto transplant to get me into a CR, followed by an allo transplant, from my sister, to go for the cure. He explained it to me that it is best to hit myeloma the hardest right away in the first CR, since once it comes back, it becomes more difficult to treat, control, and produce a longer remission.
To me, it seems as though there is no "right" answer when it come to myeloma, and certainly no easy decision to be made. Everyone is so unique in how they respond to treatment and what combination works for them. I think it is important to make a decision, go with it, and not look back. The rest is in God's hands is how I look at it.
Thanks again to everyone for all your responses!
To me, it seems as though there is no "right" answer when it come to myeloma, and certainly no easy decision to be made. Everyone is so unique in how they respond to treatment and what combination works for them. I think it is important to make a decision, go with it, and not look back. The rest is in God's hands is how I look at it.
Thanks again to everyone for all your responses!
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wrkoutgrly - Name: D'Ann
- Who do you know with myeloma?: I have Multiple Myeloma
- When were you/they diagnosed?: January 2012
- Age at diagnosis: 22
Re: 22 year old female with Multiple Myeloma
I am sorry to hear about your diagnosis with multiple myeloma.
I am a multiple myeloma survivor. I was diagnosed 8 years ago at the age of 37. My treatment included doing radiation right away, dex, auto and allo (after 5 months of the auto), with my sister as the donor. So it's been more than 7 years since I did the allo. Right now I am workng full time and am enjoying life to the fullest by taking vacations twice a year and remaining positive. I am also spending as much time as posible with my wife and my 11 year old son (he was only 3 when I was diagnosed).
Anyway, I can tell you that doing the duo transplant, right after the other is the best option (me allo was done 5 months after the auto). You might experience some challenges but stay positive.
Here's some of my bigger challenges that I can remember and can smile about now:
a) whole body cramping - while they were collecting my stem cells for the auto. Make sure they give you magnesium as a catalyst for the calcium pills (tums). It got pretty serious since you don't want all your muscles cramping up. I believe doctors have learned from my case.
a) due to the lesions throughout my body, I had a broken humerus during my auto recovery stage so I had a stainless steel bar implanted as well as additional steel bars implanted in my other humerus and in one of my femurs (before the allo). The other 2 bars were for preventive measures in case I broke anything during teh allo stage (no immune system so no operation if I broke anything).
b) due to the powerful chemo pre- allo, I got cataracts in both eyes causing retina detachments (one was 3 years post allo and the other was 7 years post allo). My vision is pretty good now (40/20 and 25/20). Hey, I dont really need glasses anymore.
c) due to the chemo and GVHD, I had liver issues causing gout, therefore leading to shingles (I guess all the immuno suppressant medication caused this).
d) recently I broke my scapula playing volleyball as my bones are considered weak (I guess). I still plan to play sports but must be careful. I plan to get back on the ice playing some ice hockey if my wife would let me
The key is that you must trust your doctor(s) during the entire process and stay positive no matter what. During the process I had many friends, co-workers and family members supporting me. Thank God for advanced medical research.
Good luck with your treatment! You can try to contact me anytime if you have any questions.
I am a multiple myeloma survivor. I was diagnosed 8 years ago at the age of 37. My treatment included doing radiation right away, dex, auto and allo (after 5 months of the auto), with my sister as the donor. So it's been more than 7 years since I did the allo. Right now I am workng full time and am enjoying life to the fullest by taking vacations twice a year and remaining positive. I am also spending as much time as posible with my wife and my 11 year old son (he was only 3 when I was diagnosed).
Anyway, I can tell you that doing the duo transplant, right after the other is the best option (me allo was done 5 months after the auto). You might experience some challenges but stay positive.
Here's some of my bigger challenges that I can remember and can smile about now:
a) whole body cramping - while they were collecting my stem cells for the auto. Make sure they give you magnesium as a catalyst for the calcium pills (tums). It got pretty serious since you don't want all your muscles cramping up. I believe doctors have learned from my case.
a) due to the lesions throughout my body, I had a broken humerus during my auto recovery stage so I had a stainless steel bar implanted as well as additional steel bars implanted in my other humerus and in one of my femurs (before the allo). The other 2 bars were for preventive measures in case I broke anything during teh allo stage (no immune system so no operation if I broke anything).
b) due to the powerful chemo pre- allo, I got cataracts in both eyes causing retina detachments (one was 3 years post allo and the other was 7 years post allo). My vision is pretty good now (40/20 and 25/20). Hey, I dont really need glasses anymore.
c) due to the chemo and GVHD, I had liver issues causing gout, therefore leading to shingles (I guess all the immuno suppressant medication caused this).
d) recently I broke my scapula playing volleyball as my bones are considered weak (I guess). I still plan to play sports but must be careful. I plan to get back on the ice playing some ice hockey if my wife would let me
The key is that you must trust your doctor(s) during the entire process and stay positive no matter what. During the process I had many friends, co-workers and family members supporting me. Thank God for advanced medical research.
Good luck with your treatment! You can try to contact me anytime if you have any questions.
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Phil
Re: 22 year old female with Multiple Myeloma
Dear wrkoutgrly,
I think the group responding to your original post have laid out the risks and benefits of the different approaches, and you have a nice understanding of your situation. If an allogeneic stem cell transplant is going to be in the cards, I agree with doing it in first remission. I am supportive of your decision.
Best of luck to you and please keep us apprised of your progress!
Take care!
Pete V.
I think the group responding to your original post have laid out the risks and benefits of the different approaches, and you have a nice understanding of your situation. If an allogeneic stem cell transplant is going to be in the cards, I agree with doing it in first remission. I am supportive of your decision.
Best of luck to you and please keep us apprised of your progress!
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: 22 year old female with Multiple Myeloma
Hi I am so sorry to hear about a 22 yrs old having myleoma my eldest son is 23. I was diagnosed at age 39 and thought hmn as my Dr usually say I am so young..my heart goes out to you..I must also commend you on your positive out look and most important your faith..for I can safely say my faith has really brought me a long way and continue to take me through...I have been on along journey try to keep on top of things..I was diagnosed in 2009 and started with Velcade and dexamethasone for about 6mths in 2010 the cells came back up and I had the same meds. for about 7mths I had an auto stem cell transplant done on Dec. 6th 2011..everything way going well for me until Oct.2012..I had a relapse of course the relapse was a bit overwhelming for me...I am however just finished one cycle of SQ Velcade, Revlimid and dexamethasone. Yesterday I started my 2nd cycle..Like you I am positive and most important just keeping my faith alive for with him any and every thing is possible. Its really wonderful to know someone at your age have such strong faith and I was even moved that your family and friends support with strengthened faith its amazing..My friends and family have really been praying more than before which I am always grateful for..I do believe that nothing in the world works like prayer.
Continue to be strong and faithful..I will definitely be praying for you..
And you are quite right you are never alone hats off to you..
May you always be blessed for you are an inspiration..
You will be fine continue to believe it..
Continue to be strong and faithful..I will definitely be praying for you..
And you are quite right you are never alone hats off to you..
May you always be blessed for you are an inspiration..
You will be fine continue to believe it..
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Jenny - Name: Jenny
- Who do you know with myeloma?: a friend
- When were you/they diagnosed?: I was diagnosed in 2009
- Age at diagnosis: 39
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