RAEB 10% blasts
April 13, 2008 at 5:57 pm #20559Warren RichMember
Dacogen worked for 8 months then stopped working. Now clinical trial at Wake Forest with Revlimid like drug by Celgene CC-11006 but doesn’t seem to be working. Getting 2 pints of blood every week. Don’t know what to do. Thinking about Clorfarabine or Vorinistadt. Md Anderson, Mt Sinia Dr Silverman, Cornell Hospital Dr. Feldman.
Dx Mds Feb. 2006 5% blastsApril 13, 2008 at 8:32 pm #20560eveMember
my dad was treated by dr silverman at mt sinai
he was in the original clinical trial for vidaza
dr silverman really knows his stuff
eveApril 13, 2008 at 9:19 pm #20561
Warren, Go to one of the centers of excellence-preferably one that isn’t too far from where you live if possible and see someone that is working on our type of disease every day. Please also don’t be discouraged. There are lots of possible treatments and trials. I was where you are 6 years ago. Went to a center of excellence and here I am. At that time there were no approved treatments. When my blasts went to 75% I had induction chemo and consolidation and I have had over 5 years of disease free living. For the past 9 months they have been seeing some chromosome changes that might mean trouble down the road-but so far all my counts have stayed in the normal range. So no treatments at all yet and I continue to enjoy the days that I never thought I would have when I was first diagnosed. I truly believe that without my team at Johns Hopkins I would not be here. I hope you have some of the same good luck!April 13, 2008 at 9:44 pm #20562Warren RichMember
Wow Suzanne that’s good experience. I am going to Wake Forest and that is a center of Excellence. Dr. Powell is my Dr.April 14, 2008 at 1:42 am #20563
I am glad you are at a center. I don’t know them all-just the ones I hear most about here & from my docs -MD Anderson, Sloan Kettering in NY and of course Fred Hutchinson in Wasington state. I do remember how it felt that I should be doing something earlier in the game. My docs did try one trial but we spent a lot of wait and watch time just like we are doing now. In some ways that is harder then being involved in something that might help. Each center does seem to have their own programs & directions in the research they are doing . When Hopkins did not have anything, I went to apply for a trial at NIH but at that point they found I had progressed to AML There really wasn’t any choice except the chemo. My one sibling was not a match. Now we will be looking at Revlimid, maybe one of the other drugs and maybe the Mini Haplo transplant with one of my children. Hopkins and the Hutch are doing a study together on that with some promising results after trying it in several kinds of cancer. At first I said no way-but after I really looked at the pros and cons and the process I just might try it if I get in trouble again. They have already tested all my children just in case we decide to go that direction. I am sure it must be frustrating to need blood every week and make you feel like the situation is urgent. I had more trouble with the blasts increasing and the white count. We are all so different.April 16, 2008 at 1:24 pm #20564cherylmMember
My dad was one of the first being treated by Dr. Feldman at NYP with clorarabine. We really liked Dr. Feldman and he knew his stuff. He went out of his way to work with some doctors at Anderson on the clofarabine trial. The clofarabine was really a good drug and did a number on my dad’s blast count. My dad unfortuantely had some other issues and he passed away on Feb 19th. But our experience at NYP was very good and I have alot of faith in Dr. Feldman. If there is any info you need or anything you think I can help you with let me know. I spent many many many days and weekends in the city with my dad so I have alot of info. Please contact me if you need anything at all. CherylApril 30, 2008 at 1:40 am #20565MNladyslipperMember
Just curious, have they looked for a MUD? Have you considered a cord blood transplant? I have read that both have more successful odds than the experimental haplo.
Good Luck!May 1, 2008 at 2:28 am #20566
I suspect that what an institution says is better is influenced by the treatments they have decided to pursue in their research and have available. Just like most things in our disease-too little is known. My understanding is that Hopkins believes that the Haplo is a better route then the cord blood. They put it after the matched non related. Both they and Fred Hutchinson have been using it in studies with more kinds of cancer then MDS and are envolved in joint studies. From the study results they have given me,it initially did not do as well with MDS as with some other types of cancers but they are now isolating studies to just MDS patients and the statistics they are giving me is 30-40% chance of prolonged remission with a possibility for cure(they have not been doing it long enough or with enough patients to be sure how many of the people that are 3-5 years out are not going to relapse.) And a 10-20 % chance I will die from host VRS graft complications. In between is ending up exactly were I am when I start because the transplant does not engraft to cronic Host VRS graft that could cause a lot of on going problems.
Those statisctics are actually better then my chances were of prolonged remission 5 plus years ago when I went for induction and consolidation. Statistically it should not have worked-and if it did I should have relapsed within months so anything with a better then 30% chance gets consideration from me. They are not urging me to do anything as long as my quality of life is good. This is also a “mini” with the lighter chemo that does less damage and won’t leave me with no bone marrow if there is no engraftment.
neither I or my docs are absolutely sure where we are going. As the say, I am a totla wild card-they don’t know ver much about our disease but I have not fitinto the patterns of the little they do knowMay 2, 2008 at 11:24 am #20567
PS, yes they were supoposed to have looked for a MUD but said if they found one I would have to go someplace else like the Hutch for that process because of my ageMay 2, 2008 at 7:23 pm #20568jaxemMember
you know, suzanne, the protocols that institutions write drive you nuts. each want you only as it suits them. they get their own specialties and if you don’t want to do things per their specialty, go find another institution. You need to do the research & make your own decisions yourself based on the current state-of-the-art. Jochim Deeg, the noted hematologist at Hutch, designated MRD, then MUD, then Cord. Everything else falls below. You can contact the Univ MN Fairview Hospital, who has done far more transplants than anyone per the NMDP, and get their recommendations.May 3, 2008 at 12:14 am #20569
I agree Jack that you have to research and make the decisions for yourself. Thanks for the info and good luck to you and your wife. I sincerely hope you get to a place where she can do the cord transplant and that it is a total success!
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