study on stem cell transplants vs. chemo

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RE: study on stem cell transplants vs. chemo

by Windymoose50 on Thu Oct 25, 2012 12:29 PM

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I had a stem cell transplant in 2009 and it worked for about 2 yrs.  I then did a clinical trial which nearly killed me. I was diagnosed with carcinoid (unrelated to MM) and after the treatment for that I went back on Rev and Dex and Vel. I had a reaction to Vel or Dex which turned me into a pretzel and it was hard to walk and move. We now know it was the Rev. I am now on my 5th cycle of Dex/Vel and am awaiting back to back sct's in about Jan 2013. I am tired of getting chemo but what I have found over the years is that MM is a roller coaster, up and down and up and down and u just have to go with the flow. I am committed to staying alive for as long as I can for my family... I have an adorable hubby and children and grandchildren and one great grandbaby. I have a great life and am not ready to check out yet. There are lots of docs who don't believe in sct's and prefer chemo. There are lots of success stories with sct's where people have been stable for years.  There is no such thing as remission in MM, you are either stable or unstable.  Stable is no M-Spike detectable and Unstable is M-Spike there or rising.. MM is a chronic disease and it is easier to deal with if you think of it it this way...Good Luck to u and Freddie.. There is a wealth of knowledge on here... Enjoy...

RE: study on stem cell transplants vs. chemo

by babs824 on Fri Oct 26, 2012 11:36 PM

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tx windy, my pal has decided to do phase one trial after much research. this starts monday in boston. i will keep posting here as it could help others. wishing u and all the mm community all the strength and courage in the world, best, babs

RE: study on stem cell transplants vs. chemo

by maxiteach on Mon Oct 29, 2012 09:29 PM

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Hi Freddie's wife, How has the plankton helped Freddie? My fiancee whom I live with has MM.

RE: study on stem cell transplants vs. chemo

by maxiteach on Mon Oct 29, 2012 09:35 PM

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HI Arne and wife, I am so glad you are feeling great! My fiancee is 50% in remission again and feeling great too! I hope his MM specialist puts him back in full remission again! 2 more treatments and another restage. I will let everyone know!

RE: study on stem cell transplants vs. chemo

by maxiteach on Mon Oct 29, 2012 09:38 PM

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Good luck on your bone marrow biopsy! Let us all know how you made out!

Maxi

RE: study on stem cell transplants vs. chemo

by Freddie8511 on Mon Oct 29, 2012 10:39 PM

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Dear Maxi,

Freddie started taking coq9-marinephytoplankton5000.com when he got off the chemo, Revlimid, in April after fainting and turning a yellow green gray color.  Our son had given him a DVD from his boss on it and Tom Harper of BC who had stage 4 cancer.  We have since found the Tom Harper Phyto Plankton story on youtube.  Freddie takes it 3xs a day with curcumin and a pill for PHbalance.  When we were in Seattle in Sept. for his stem cells to be harvested, he was told at the Seattle Cancer Care Alliance that he was in total remission.  He'd been taking the above 3 medications (over the counter) for 6 months.  Hope it can help your finacee too.  God bless  P.S. We have also learned of a French doctor in 1904 who did studies with amazing results.  His name was Rene Quinton and you can find his studies on line as well.

RE: study on stem cell transplants vs. chemo

by ArneHakansson on Sat Nov 03, 2012 06:55 PM

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On okt 29, 2012 9:35 maxiteach wrote:

HI Arne and wife, I am so glad you are feeling great! My fiancee is 50% in remission again and feeling great too! I hope his MM specialist puts him back in full remission again! 2 more treatments and another restage. I will let everyone know!

Thank hou very much. How have the new novel drug (carfilzomib-Rev and dex) been accepted in US. What I lerned from my doc the drug now have get fast track approval by FDA and are on the market since august 2012. The drug is not yet approved in any of the countries in Europe. The reason I get it is that I am in phase 3 studie. This drug maybe can put your fiancee in full remission. Since my late reply to you I have have made a new BMT. The result was 0,8% unstable white plasmacell in combination with a M-spike that are zero. it is very good and my doc say it is fantastic for the people that respond to this type of drug

Have a good time and hope your fiancee will be in full remisson

Best Regards

Arne and Monika


RE: study on stem cell transplants vs. chemo

by pretzel on Fri Nov 30, 2012 06:40 PM

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On Jul 20, 2012 9:48 PM ArneHakansson wrote:

Hi Freddie and your wife

The SCT I have done give me 2 year without any treatment. The m-component get from 35 to 8 and I was able to do anything I wish to do. So you can not say that it not help. But that you know you can not be fre from MM, You can only try keep it back. So in june last year the MM was back with a lot of pain, and with increased m-component to 31. 

I was lucky to be participaiting in the studi, with the result i told you  earlier. And I hope for a longer time of remission this time.

The name of the company that running the studie is Onyx. And they are doing it from there office in  Switser land

Of course you shall not give up. It is a lot of new treatment in pipline.

Arne

In december 1995 I was told i had m.m in stage 3. Only course to take was expermental double stem cell transplant. No promise of sucess. Only a profile from the trials to read where 40% of patients never made it through trial. began chemo. 1996 1 week every month for 4 months had stem cells extracted from me and went into hospital oct. 31 1996 given cells and came out nov. 23. second transplant began may 1997 and also 3 days 0f raditation 15 min. front in the morning 15 min. back in the afternoon. given second transplant came out 17 days later. point of thought, this Dec. makes 17 years. Im currently on revlimid10mg. and warfarin.all numbers related to m.m are normal or almost in normal range. treatment metheods may  have changed since in regard to using chemo. and sct. But in my case it worked.I just may be living a charmed life but it might warrant a look into having the two together. to whom it may concern BEST OF LUCK.

RE: study on stem cell transplants vs. chemo

by ArneHakansson on Sun Dec 02, 2012 09:45 AM

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Good luck to You 17 years are à long time to live with. MM and you. what i can understand still livring à nice life. Have à nice time to all of you From Sweden à nice winterday Arne

RE: study on stem cell transplants vs. chemo

by pretzel on Fri Dec 07, 2012 05:32 AM

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thanks Ame for theb come back. Merry CHRISTMAS AND A HEALTHY NEW YEAR .GOOD LUCK TO YOU.

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