Internist and medical oncologist Virginia Klimek discusses the importance of research, clinical trials, and patient education in finding new treatments for myelodysplastic syndromes (MDS).
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Gracias por su comentario.
My wife died of MDS in Sept. 2011 at age 79. She was treated at the Winship Cancer Institute of Emory University in Atlanta. She underwent many blood infusions and some injections. There was hope that a bone marrow transplant would provide a positive, but the doctors said she was not a candidate because of her age. I understand there is research going on to make the bone marrow transplants more receptive and eliminate the conditions of rejection and other complications. Too late for my wife, but I'd like to be kept updated on progress in MDS research by Sloan Kettering.
Dear Leo, I feel your pain and understand exactly what you are going through. I lost my mom this past April 2014 after an 11 month battle. I would have given not only my bone marrow (if a suitable candidate) but my own life. People say the pain lessens and we learn to "go on" without our loved ones but I cant seem to do that. I continue to question the what ifs and the whys and feel the daily guilt that if only we would have done more, my mom would still be with us. My mom went at least two months without any treatment while still diagnosed with MDS at 83. It obviously progressed to leukemia in a matter of weeks. I still cannot understand why any treatment wasnt given to her, regardless of past outcomes. I literally feel as if I just watched her die. She too had the seven day injections which caused bruising and redness all over and then the endless transfusions, but yet my mom continued to be a trooper and probably would have continued doing whatever she had to do just to continue to live!!!! I too would have been right by her side during any treatment what so ever. I still cannot understand for one minute why the drs wouldn't allow her to try the transplant... what would have made the difference. She was dying and they knew it, yet no one wanted to put her through the pain and trauma of a transplant???? My moms blood counts at time were near zero.. why oh why would it have mattered if they attempted to do a transplant and reduce her counts to near zero, anyway???? Why wasnt major chemo given to her??? We were told she couldnt handle it, her body wouldn't tolerate it????? My mom went through 11 months of battling this crippling disease... I cannot understand nor accept, nor lose the anger I have more for the doctors who were in charge of her case than even the disease alone. Like you said its too late for my mom as well, but I fear for others including myself and my family members, if we have a greater chance of being diagnosed with this deadly disease, that once again the doctors will not be willing to do whatever it takes to attempt to save our loved ones!!!!! Thank you for giving me this forum to vent since it has been almost five months since I have lost my mom, my best friend, my world, my everything and unfortunately time isn't healing, at times it feels worse than ever. My mom's doctor told me to stop wasting time blaming others and just blame the true culprit, the MDS, but somehow I do not believe I will ever be able to come to terms with that. When my mom passed away in April a huge part of me left, as well... I will never be the same person without her nor will the pain of losing her diminish. I only hope that one day there is a cure for every darn form of cancer so patients and their entire family never have to know from this type of pain. Mommy rest in peace and you will always be in my heart, always and forever!!!!! I was fortunate enough to have met Dr. Klimek and only wish that my mom and family would have decided to go to sloan. I honestly believe that we would have had a different outcome, at this point. I know her prognosis was certainly beyond poor but somehow in my heart of hearts when I met Dr. Klimek I felt as if our journey would have been a difficult and long one but somehow my mom would have had the best outcome possible. On our second and last appointment with dr Klimek, as bad as things had progressed, 11 months later (under a different doctor and hospitals care) I still had that same overwhelming positive feel. To all of those battling this horrific disease I wish you the best and can assure you Dr. Klimek is one of the best if not the best in every way possible, to see!!!!Best of luck to all!
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