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willieMember
Patti The clotting time test is to verfy the INR. Dark green vegetables and salads also effect the clotting time. They will shorten the time. That is why those who have had clots need to stick to a regular amount of greens so the amount of coumadin can be stable. The normal range for INR is 0.9-1.2. Willie
willieMemberJeff My wife was given Busulfan the same as your schedule. The dose was determined by the extent of her disease and her body weight. The administration was preceeded 1/2 hour by 8mg of Zofran (Ondansetron) to ease nausea. She was also given Dilantin (300mg)at bedtime to help prevent seizures. This was continued for 24 hours after the last dose of Bulsulfan.
Willie
willieMemberGayle Not to make light of your situation but it is really like going to a carnival and trying your hand at knocking down the rodent that pops up only to find that a similar one has popped up somelwhere else. It is very difficult to help someone who is not too interested themself or is too nauseated to want to try. You have no choice but to keep trying for them. Willie
willieMembercaliforniamom While my wife was on Vidaza she went for 3 rounds before she had the BMT. The Vidaza did stretchout the time needed between transfusions to about 2 1/2-3 weeks. As the doctor if there is a life prognosis without getting a BMT. I second the opinion of going to a teaching hospital. When we looked into Stanford we got an answering machine. When we called the SCCA a doctor called us back. There was one individual there at the same who had been referred there by Stanford. Good luck to your Dad.
Willie
willieMemberAll As all of you caregivers know, it is one step at a time. A lot of those steps are challenging the medical help. We were in Seattle and as such were isolated from all our family and friends.
Should any of you be considering the Seattle Cancer Care Alliance (SCCA), I have experience of 5 months with them and the Univ of WA Hospital and would be glad to share what I know.
Thanks for your thoughts – and for those of you still in the struggle, do not give in. There are times when taking or giving 28-30 pills a day seems too much too handle. As is operating the mobile pumps when the patient needs meds of one kind or another in your condo or home setting. It is all worth the effort.Willie
September 8, 2006 at 4:07 pm in reply to: Looking forward from an answer from all but especially Neil #14888willieMemberFotis Your mom should have the bone marrow biopsy. The doctors also have a life expectancy scale if no transplant is performed. My wife was told that she had 3 1/2 years to live without a transplant, and that the transplant was the only potential cure. She was 55. It is likely that the disease could have started as much as 15 years earlier but showed itself last spring. Having read most of what people are saying in this forum, and given that she is 50, I would do any of the appropriate treatments short of the transplant until she absolutely needs it. If she is a young 50 then she would probably be a young 55 or 60 year old person and still deal with a transplant ok.
WilliewillieMemberLucy You have been taking it one step at a time and now have to continue doing so but for yourself. Our situations are similar in that my wife was diagnosed 2/05 with MDS and passed away last month from AML ( and the fungal infection). My thoughts are with you and your familty. I know it is difficult to see much joy right now but it will come back. Willie
August 30, 2006 at 3:23 am in reply to: Looking for some tough answers to some tough questions #14685willieMemberLucy They want to see the blasts get down to 5% or less. At her % is does not look too promising to do a bone marrow pull. Need to get it close to 5%. I am unfamiliar with decitabine or dacogen. Are these chemos? Either the leukemia or a fungis can travel to the brain the way it was explained to me. A CT scan would show nodules in the lungs or in the brain. Is she running a temperature or having a tough time keeping her temp normal? Also as I understand it she would not have MDS and AML at the same time. She may have progressed from MDS to AML. Prior to her stem cell transplant my wife was on Vidaza and it was extending the time between needing red blood transfusions. Since she relapsed from MDS to AML her only options were chemo. If she is not walking you may want to get some Ted or compression stockings for her to try to minimize potential blood clotting. Thinking positive thoughts for your mom.
WilliewillieMemberJeff Do you have someone who is going to stay with you for the duration? Will you be administering the chemo yourself outside of the hospital or clinic? Most of the chemos are timed and some occur in the middle of the night. In my wife’s case I had to get up 1 1/2 hours prior to her dose time to give her a predose med. The 100 days will seem like a long time particularly when you come across some speed bumps – but you will get through it with the help of your caregiver and the institution. Godd luck and remember to keep walking while you are in the hospital even though you will not feel like it. Willie
willieMemberWaltraut Did the doctors take a bone marrow biopsy? Willie
willieMemberGloria Sweet’s Syndrome is a neutrophilic dermatosis often associated with hemotological diseases like leukemia. In my wife’s case, it was a precursor to MDS. Willie
willieMemberfotis You should read all of the correspondence at this web site. They cover nearly all of the topics. Did they check for blasts in her blood tests or in a bone marrow test? Willie
willieMemberDear Susan I am sorry for your loss. You are in our thoughts. Willie
willieMemberpatti I do not understand about PICCs as my wife got a port (Hickman line) last July. It has been in a year and there are no problems pulling blood. Your MIL will have to get educated on how to care for the line but once she does she will probably be as goos as any nurse she comes accross. Good luck to her.
WilliewillieMembercovergirl What we were told was that the stem cell method had a quicker recovery time for the patient. The bone marrow choice has a slighly lower chance of contracting GvHD.
Willie
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