How do lifestyle factors and exposure to environmental substances affect our cancer risk?
by Freddie8511 on Fri Jul 20, 2012 03:34 AM
We talked to our hematologist/oncologist this month. He is opposed to sct's, but is pro-chemo. He told us that a new study is being done which he believes will show no difference between the treatments. Does anyone know who is doing this study and if they have any results yet. Thanks and God bless, Freddie's wife
by ArneHakansson on Fri Jul 20, 2012 03:53 PM
by Freddie8511 on Fri Jul 20, 2012 04:50 PM
Hi Arne, Thanks so much for the info. So glad to hear your good results. So the SCT you had done 3 years ago didn't help. We haven't lost hope because of people like you. Thanks so much. Freddie's wife
by ArneHakansson on Fri Jul 20, 2012 09:48 PM
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.
by Freddie8511 on Fri Jul 20, 2012 11:27 PM
Hi Arne, Thanks for more info. We have learned of a man who was diagnosed with MM at 67. He had a SCT and has not had chemo or any other treatment since - he is 80!!!! Isn't that a praise the Lord!!! Then we met Beth who has been cancer free for 6 years and was diagnosed 16 years ago.She had a SCT 16 years ago. No chemo since Freddie tried chemo, but after 5 months, he couldn't tolerate it. He is going to get his stem cells harvested God bless, Freddie's wife
by Hophop4 on Sat Jul 21, 2012 02:14 AM
I had my SCT at MDAnderson March 2009. I was off any treatment after that for about 10 months and my Doctor wanted me to go on maintenance. Because my insurance would not approve Revlimid at that time after the 10 months he put me on Thalimid low dose but was only on it for about 4 months and I started to have neurpathay on my feet so then my insurance finally approved Revlimid. So I was put on low dose 5 mg. It didn't do the job and the following year I relapsed 2011. My stem cell doctor transferred me over to the Myeloma Department to find out what my options were. I did not qualify or was bad enough for any MM Trials so she increased the Revlimid to 25 and added 20 mg of dex once a week. I have been in remission since.
There is a guy that works out at the gym I go to and he has Myeloma and goes to MDA. He had a tumor on his spine just like me but I think his was worse. He has been in a MM Trial for couple years now and his blood counts are looking very good. They will keep him on this as long as he can. Right now he can not have a SCT because he lives alone and does not have any one to take care of him. All his family lives in NY and I told him my SCT doctor now heads up the SCT dept at Sloane-Kittering. So if he ends up needing a transplant he may move to NY. MDA will refer him to this doctor. The Trial he is in now is called ARI-500 or something like that, I think.
by Freddie8511 on Thu Jul 26, 2012 02:22 AM
So good to hear from you HopHop4. Freddie was on Linalidamide (I think that is generic for Revlimid). Anyway, he was on 25 mg and it nearly killed him. He fainted. He's doing well now off the chemo and we are going through all the testing for harvesting his stem cells. Please keep Freddie in your prayers as we will you. God bless, Freddie's wife
by pretzel on Sat Jul 28, 2012 05:59 AM
Hi freddie and the mrs's
Back in 1995 i was diagnosed with stage 3 mm. I had an exstensive phyiscal to see if i could the expeiermental stem cell transplant trialed in ark. I was given one week of chemo. A month for four months they took blood from me to collect the stem cells for a double transplant. First one in oct. First released after 24 days of recovery second 6 months later 17 days for recovery along with3 days of full body radation 15 min. In morning 15min. In the afternoon. Now i am on revlmid and warfarin i was also taking dexamethasone but it was stopped due to side effects from it. They changed to revlmid from valcade for the same reasons which were so bad i was on the edge. But my numbers are mostly in thir normal range and constant i was started at 15 mg. They dropped to 10mg 2 months ago to see how i'll react. I will end this recent 10mg month next week and get a blood test then we'llknow.wheni had the chemo in 96 i was lucky not to get upset. My dr. Said it might have been due to my drinking a great deal of water, so much that they began checking my outputdaily.asyou know mm effects the kidneys .i hope my experence since 1996 gives you some idea of what you might expect .good luck..
by maddog49 on Sat Jul 28, 2012 06:21 PM
So far folks I had a stem cell done in 2011, I am still in remission and not on any meds. I used my own stem cells.
Good luck to you all
by Freddie8511 on Thu Aug 02, 2012 05:05 AM
Dear Maddog 49, That is wonderful news. God bless, Freddie's wife
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