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willie
MemberThank you Sarah. Willie
MemberZoe Terrific! Willie
MemberSandy I am very sorry to hear your news. I will be thinking of you and your family. I know you are numb. All of you have had compressed emotions for a long time. Willie
MemberSandy Both of you are in my thoughts through this treatment. Also, be sure that all, especially including the doctors) that come near him or his environment wash their hands and come with clean clothes. With the low whites he needs to be carefull. Willie
MemberJeanette This is mental isometrics for you now – and there will be more to come. Continue to investigate what you can and enlist the aid of those who can help. It sounds like you are doing that. It is a tough road but one you have to be on now. All the best for both of you. Willie
MemberEngel I am not sure how I am doing. I am doing those things I have to do and my 2 kids have been a help – but sometimes I feel like I need some brief time and space for myself. I have decorated our home and have been seeing our close friends. There are a great many people who I thought would be closer but they apparently do not now how do deal with Terry’s passing from their perspective. I notice that I get irritated more easily and have less patience than I should. I have tried to slow down and set modest goals. This includes work. I think I agree with all what has been said previously that the ache will be still there but somewhat duller. Most of my grieving occured when she first got the original diagnosis. Maybe that is why I am mostly numb now without any defined thoughts.
WillieMemberEd Her PSCT was on 7-21-05 with a release from the SCCA at the end of October 05 at 99.5% transplanted. Let me know what is of particular concern for you and I will try to answer. I obviously am not a doctor but she had gut GvHD while in Seattle and we could not find it in Feb 06. I think the slight GvHD she had was keeping the MDS from returning and when she beat it the 1/2% turned to 70% in 1 month. This is only my guess. Willie
MemberEd My wife was about the same age as yours when she was diagnosed with MDS and no other health problems. She was told that the only potential cure was a SCT. She did not want to delay and had her transplant within 5 months of diagnosis. Hang in there, you both have a long way to go.
WillieMemberLoretta Based on my wife’s experience I would second Engel’s response. You need to go in as soon as possible. My wife’s doctor’s had her in the hospital the next day. Willie
MemberSimon Hang in there with the GvHD. A tiny bit of it might be OK keeping everything else in check. Great to see that you can work some of the time! Willie
MemberSarah, Engel Thank you for your posts today. I was hoping someone would send the good wishes since I couldn’t do it myself. We do have alot to be thankful for. It helps me when I relax and allow others to help me. Willie
MemberJ.claire My wife was told that a BMT was the only potential cure and that she had a survival index of 3 1/2 years if left untreated. We did not rceive a good rundown from him of the potential help that is available short of the BMT
or in her case a PSCT. She might have opted to try the other options but wanted to go for the potential cure. After reading what many have experienced I think it would have been good to try more of the Vidaza (it was stretching out the time between transfusions). She was not needing any platelets although that number was declining. She was feeling much better than she had in 4-5 months the day she signed in to the clinic to begin the process. Also, she was 55 when diagnosed and they felt her age was on her side at that time. I do wish we could have read this forum during the initial phase but I really don’t think she would have changed her mind.
WillieMemberMarla and all – I agree that there is hostility exhibited in some of the posts which I do not understand. All of you are trying to find some measure of understanding of what is going on and what can be done to limit the insidiousness of this disease. We all understand that we are not doctors. My wife’s doctor(gp) had to look it up. The Sweet’s manifested itself on her arms. I don’t know what she would have done if it occured internally. Dapsone was no better than prednisone and it lowered her counts. It was explained to us that the Sweet’s was an indicator of an underlying MDS that could have started 10 or 15 years ago. The BMB confirmed the diagnosis. It is very likely that she would have quickly been in much worse shape if it had internalized. Should something like this happen to me I would want my caregiver to be exploring whatever they could to potentially help. It does no good here in this forum to continue the barbs and mean-spirited inuendo.
WillieNovember 10, 2006 at 11:29 pm in reply to: What are the most important questions to ask my hematologist #15936MemberJ.claire What are the red, white and platelet counts? Have they given you a blast % in your marrow and in your circulating blood? What is your prognosis index (in years) if left untreated? What treatment options are available? Here you can read through the correspondence on this forum and get a good picture of the options. Which treatment option do they suggest and why. Where are you on the RA severity scale. I think there at least 4 severity levels.
It will take some time but read through this forum. It would have been good for me when my wife was first diagnosed.
WillieMemberTia A followup. Terry’s sores were first seen and treated by a dermatologist. We would have been 6 months further along if the dermatologist and her doctor would have ordered a BMB. It may not have changed anything however – just got the appropriate treatment sooner.
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