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Old Sun May 13, 2012, 10:48 PM
milliken2 milliken2 is offline
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Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Me taking care of the medical things

Lindajo;
I understand what you are sayng - but believe me - I would be a lot more worried if I left it up to him to take care of things. You see - in the 41 years we have been married - he has lost his wallet at least 4 times, either lost or ran over 3 cell phones - you get the picture. This way - I keep his medical cards, have all the Docs numbers in my cell phone - and since I am an RN - I am able to talk to the Docs on a more medical level and usually get respect from them - since I come with all of the medical history, current medications, living will, etc - and it is all written in 'medicalise' so they know I am not just the 'wife'. I know - I have been told many times that I need to take time for myself - and lately - when he has been getting hiis chemo - I haven't been staying there - went for coffee with friends one time - had my nails done on another day. But - I still want to be the one who can ask and understand the questions and answers.
We saw Dr. Sekeres last Thursday. He was very nice, but he did not get the records from Moffitt in time (even thught I had been calling several times a week) so their pathologists only had the one from the independent lab, and the 2 from West Penn to compare. Even so - we were told he had 7% blasts by our local oncologist who did the independent BMB - and Dr. Sekeres said their pathologists reviewed that one, and saw only 2% blasts in the same one. Now - how can it be so different. And I know the one from Moffitt said he had 9% blasts. Who do you believe and how does the treatment differ? Dr. Sekeres said he will review all of the records once they get there, and send me his final report. He said Earl could not take Revlimid since a side effect of it is blood clotting, and he already has Antiphospholipid Antibody Syndrome (sticky blood) but since the MDS has started - his platelet level has been so low, he isn't taking the Arixtra. The Dr. did say that the MDS may have been caused by the Plaquenil he had been taking in combination with the Arixtra - so we are still not sure. He has been off the Plaquenil for about 3 months, and the Arixta for about the last 5 months. Dr. Sekeres said to continue the Dacogen, but if after 6 sessions - if there is no improvement - to let him know - and then we might return to the clinic and start ATG therapy. He would have to be admitted and stay there and be monitored for a week to make sure there are no side effects, We did agree to put him in a study via his blood work - and maybe - just maybe and hopefully - it will help - if not Earl - then someone else.
Sorry for the long post - but wanted to explain as much as I could.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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