February 14, 2006 at 3:05 pm #11803SuzanneMember
This site is not working right again. I can’t post an answer to your post-It says Topic does not exist which has happened before. hoping posting a new topic will work
Call the Aplastic Anemia & MDS International Foundation. at 800-747-2828 or contact them at http://www.aamds.org. They keep up with what is going on and can be very helpful. Be sure to tell them that your Mom has secondary MDS. There may be specific centers and doctors that have had more success with that then others. Good luck and keep us postedFebruary 14, 2006 at 8:02 pm #11804eveMember
my dad is being treated by dr lewis silverman @ mt sinai hospital in manhattan
dr silverman is very experienced in the treatments and options available for mds patients
if you wish any further information don’t hesitate to contact me
eveFebruary 15, 2006 at 2:23 am #11805
Thank you so much Suzanne and Eve.
My mom is getting in touch with Dr Nimer at Sloane Memorial and Dr Feldman at Weill-Cornell, both in NYC.
As far as Europe is concerned she is trying to get on the phone with Dr Bron at Jules Bordet in Brussels.
Exactly how important is it that she go to an MDS Center of Excellence? Looking at the list on the front page of this website I notice that neither Sloane nor Jules Bordet are listed among those Centers, even though both Dr Nimer and Dr Bron were recommended to us by other doctors.
Also, any advice as to lifestyle (diet etc) changes my mother could begin with before she gets actual medical treatment? I want her to get started ASAP and feel like she’s regaining at least a little bit of control after feeling so totally helpless.
I realize this is a lot of questions–but the truth is I have many more…February 15, 2006 at 2:31 am #11806
Sorry I just noticed that Sloan (no e at the end!) is in fact an MDS Center of Excellence.
Still, my question stands.February 15, 2006 at 2:36 am #11807lynetteMember
My mom is a patient of Dr. Feldman at NYP. He has been outstanding–professional and very knowledgeable about MDS and Leukemia. NYP is a center of excellence.
Good luck!February 15, 2006 at 4:34 am #11808pattiMember
One thing your mom can do right now is work on your dad’s diet. Make sure he’s eating whole foods, organic meat, fruits, veggies, etc. A good whey protein is very helpful for energy. Water, lots of it. Depending on what kind of MDS he has there are a number of supplements I would recommend. As soon as you know what type he has let me know and I can pass on some stuff. By strengthening his body using natural foods/methods, you can greatly increase the liklihood that whatever treatment he’ll take will be that much more successful and less stressful on his body. My MIL has done all natural treatments outside of neupogen shots and she has lived well beyond what the doctors told her more than 17 mos. ago. I really believe if she had chosen chemo she would have succombed much sooner (partly because of age). Just my personal opinion. I know many others have done chemo and are fine with it. My MIL has chosen not to do chemo. Actually, if your dad could either get to a cancer naturapath or any naturapath they can work with his doctors and that really goes a long way (that’s what we do).
pattiFebruary 15, 2006 at 4:32 pm #11809JaniceRMember
Hi Pierre: My dad also sees Dr. Feldman at NYP Weill Cornell. He is doing the same arsenic and ara-C clinical trial that Lynette’s mom did that put her into remission. Week 2 and NO side-effects so far. He goes home Friday! He thinks the hospital and staff are wonderful and so is the food… gained 10 pounds (hopefully water-weight). We are hoping for the same results (remission) as Lynette’s mom; but we won’t know until next week when he goes for the bone marrow biopsy. He also has RAEB – 15% blast with Chromosome-7 abnormality. I e-mailed Dr. Lewis Silverman (email@example.com) and got an immediate response from him… and we are not even a patient of his! He’s at Mt.Sinai and I hear he’s also great. I also hear great things about Memorial Sloan Kettering. Get ALL the opinions you can so you can make an informed decision and a fast one! They told my father that his type of MDS will progress to acute leukemia very rapidly and that we could “just wait” and go with the treatments for AML… but it is much wiser to “head it off at the pass” and stop the progression. Good Luck… always have hope!February 15, 2006 at 4:40 pm #11810JaniceRMember
Pierre: One more thing… make sure she stays completely away from ALL alcohol… not one drop! I know full well how us French and German decendants love our wine and beer, but any and all alchohol interferes with bone marrow operation! If I didn’t ask the doctors about it, I still wonder if they would’ve told me. Also, have her eat lots and lots of fruits and tons of vegetables. One whole pineapple a day got my father’s platelets up ALOT… it really helps, though I don’t think the drs. and nurses believe it yet. And… a gallon of distilled/filtered water a day! Flush out those toxins!February 17, 2006 at 5:45 am #11811
My goodness so much help from everyone. Thank you!
I wish I could copy and paste my very first post here so that everyone could know the details of my mother’s situation, but I can’t seem to be able to find it. Looks like it’s been deleted.
So I’ll just repeat the basics. My mother (an otherwise healthy 69-year old French woman living with my American dad in Paris) was diagnosed with RAEB-2 last week (16% blasts). Her other numbers seem to be OK for now, even though they’ve dropped since her first exams in December.
She’s seen a doctor today. (Still in France.) Apparently she’d be eligible for Revlimid because she’s got 5q. Unfortunately she has other chromsome aberrations as well, though she hasn’t told me which yet.
She’s flying out to NYC, where I live, next week, and she’s seeing Dr Nimer at Sloan Kettering on Tuesday. I can’t wait. I want her to get started NOW.
She’s also sent her test results to Dr Feldman but hasn’t heard back from him yet.
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