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Suzanne
MemberHow exciting! My hat is off to you both for the courage to try this. Hope all continues to go well!
MemberYunsung, I just got a flyer from the leukemia & Lymphoma Society that Dr. Gore from Johns Hopkins will be giving a “patient education” presentation on Emerging Treatments for Myelodysplastic Syndrome at Holy Cross hospital in Silver Spring Md. On Tuesday March 1, 2Pm -3:30PM. It is right off the DC beltway and should be easy for your father to get to. Call 703-760-1100 ext 231 or email singers@dc-cap.leukemia-lymphomia.org to register. I will go I think. It is similiar to the presentation I mentioned going to at Georgetown over a year ago. Dr. Gore is envolved in a lot of trials. I met him when he did rounds when I was in the hospital for chemo.
MemberKate. Having been there, I wish you well and tell you that he can come out in remission! hoping that is what happens for George.
MemberYusung, Dr. Smith said both Brodsky and Spivak are esxellent Doctors. Spivak has been there a long time and Brodsky is My
Dr’s best friend. I know Brodsky does a lot of public speaking about this disease and is very well known. So I think you are headed in the right directions. Try Dr. Smith as well to see if he can see your Dad sooner. He is just great-a real straight shooter with information. Answers my questions by email. They probably will run thier own tests even if you have results. You get blood test results right away. takes about two weeks for the Bomne Marrow test results. I went to Georgtown for a presentation sponsered by the Leulemia society so I know they treat MDS there. But I don’t hear about them or see them in the trial lists like I do Johns Hopkins.MemberI see Dr. Doug Smith and know Dr. Judy Carp and Dr. Gore. I will post or email you later about what your first visit may be like. Don’t be discouraged if you have trouble getting a appointment. The first time can be hard-Just be insistant. You may have to wait about a month to see someone and the first visit may feel impersonal. They do so many consultations I guess. After you are in the system and a patient there, even if they are having you monitored by you local hemo, everything gets easier. Suzanne
MemberJosie, yes everyone will know you posted again. when you log back on the yellow tags to the left show you new posts since you were last on.you can contact people individually and privately by clicking on the envelop at the top of their post.
No one -even the dr’s- can tell you what will happen for you mom. Especially until they watch the progression of her disease for a while. Even then it can make sudden moves. Everyone reacts very individually to the disease and medications-one of the problems with this disease.MemberJosie, what a wonderful daughter you are! Your parents are so lucky to have your support and help. Suzanne
MemberYusung, I go to Johns Hopkins and recommend the treatment and knowledge there.They have given me wonderful advice and care for over two years. I do not know Dr. Spivak. If I have a chance I will ask about him when I am there tomorrow.Suzanne
MemberDrew, Sorry I found the RAR designation by reading back. Do add info to your signature. It is hard to remember who is dealing with what.
As I have said before as long as they were able to keep me reasonably out of trouble even tho I was in a very high risk category when I was first diagnosed, they did so. Tried one drug trial and watched mme closely to get an idea of how the disease was going to progress with me and how I was going to react to drugs-everyone being individual. And partly at my request. When I progressed to AML, the treatment or supportive care decision became necessary. There are so many new developments in treatments recently that I think it is even more important to be in the care of a center of excellence that will keep up with what is happening.MemberPalacelaw, Do you know what type of MDS your Mom has?And is she being treated at a Center of Excellence or been to one for a consultation on treatment options? Maybe I missed it in an earlier post. It helps if you ad it to your profile signature. I think the disease itself can cause some depression. Sometimes people need some help with that. Suzanne
MemberDoreen, you may be able to qualify for social sec disability with platelets that low and a BMT ion front of you. worth a try.collect copies of all your own test results and send them in with your application plus a description from one of the sites of what this disease is all about and your fab classification etc. Someone on a forum advised me to when I was first diagnosed and I am so glad they did. Suzanne
MemberTara, Keep up the good work. sounds like you are doing all the right things and that you are one of the lucky ones who are stable at an exceptable level. Hope it continues indefinitely.
MemberMitch, They don’t always keep track of what is offered besides what they are working on at their institution.Go to http://www.clinicaltrials.gov to see a list of what is going on all over.they list the patient criteria and give you contact info for questions There is also a list on the homepage of this site.
I know zarnestra has been used in place of the heavier chemo for older patients with a fairly good rate of improvement and not too many side effects. I am taking it in a lower dose in a trial using it as a maintenance drug for patients in remission. I have had almost no side effects but that is not true for everyone. My understanding is that the trials using it in place of chemo have probably been closed to collect data to submitt it for approval.I would think most center of excellence dr’s would know about it since it was a very positive presentation at the recent meeting for Hemo’s on the west coast.I even saw a bit about it in Cure Magazine. Don’t let your Dad get too hung up on the term”no chemo”, Even zarnestra is often referred to as a ‘chemo’.
If there are other alternatives once one has gone into AML, I don’t know about them but they are developing new trials with different drugs and combinations of drugs all the time. At the same time when I was looking at what to do over a year ago there was not a lot of difference statistically in going with drug trials and settling for supportive care once quality of life was factored in. I don’t know if that has changed. I think that most people in their 80’s go with supportive care but every case needs to be looked at on an individual basis. SuzanneMemberNy Ddr. too did not have strong feelings about the maskes. He always said to wear one if I wanted too.However the nurses were adamant and would not let me out of my room without one until My neutrophils were about 500.
MemberHelen, In a way progressing to AML was the best thing that happened to me. I had the Induction and consolidation rounds of heavy chemo as soon as they found the AML and went into remission. I have forgotten the basics about your Dad type, age, complicating factors. But don’t give up until he has talked to a center of excellence Dr. that recommends possible treatments unless he doesn’t want to fight. NIH told me nothing would work and recommended no treatment. How lucky I was that I was a patient at Johns Hopkins when I went to NIH for a conultaion and Hokins disagreed about doing nothing. If nothing else I have had a wonderful year and a half already of high quality life.
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