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willie
MemberWill be thinking of her and her success on her new birthday. Willie
MemberAleksandra My thoughts are with both of you. Be sure to take care of yourself too. Willie
MemberKWJ I am very sorry for the loss of your father.
WillieMemberMaureen We had problems with our insurance as an outpatient. Our doctor prescribed the type that melts in your mouth and it was only made as Zofran. The insurance paid at $32/pill. This one is a tough one to solve. Willie
MemberJosey Try to read as much as you can on this forum. There is probably efforts that you can do short of a BMT. I wish my wife’s doctor would have given her moe options in the near term. She given a life expectancy index of 3 1/2 years if not treated (with a BMT). She probably could have had 2 fairly decent years before trying the BMT. The Vidaza treatments were really wearing on her every 4 weeks though. Try calling the Seattle Cancer Care Alliance (SCCA) for a third opinion. They are close to you, a Center of Excellance and very responsive. Willie
MemberStephanie The quarter inch open sore sound like the Sweets Syndrome my wife had. What causes them to go away? Do they get really hot to the tough? Prednisone was the only thing that helped her. The Sweets was a precursor to MDS. Willie
MemberEve My thoughts go out to you and your family. Hopefully time will lessen the hurt you feel today. Willie
MemberSLStrout There are many items you both will need to consider but some of them are practical in nature. You will need to find a place to stay for 3-4 months within 15 minutes of the hospital. My wife needed to be that close twice – once when she had a bout with GvHD and once with a serious blod clot. Secondly, it would really help if you could find a second person to be a caregiver with you for the preop time and for 3-4 weeks after the initial chemotherapy. The chemo can be administered round the clock and there are meds to give prior to giving the chemo. Maybe City of Hope does it differently but at the SCCA the caregivers gave the chemo three times a day and it is timed to mesh with the transplant time of day. Likely you will have a chemo administration at 2 in the morning with prep meds an hour earlier. It is just much easier for 2 caregivers to support each other during this time.
WillieMemberpigduck Hang in there with your dad – he will need you every step of the way. It is also amazing how strong and inspiring those who have these terrible diseases can be. Thinking of your dad and his family. Willie
MemberRuss I am not sure if it will give you more insight but you might want to find out what stage the clinicals trials are. I was told that stage 1 trials are pretty rugged in that doses may be heavier. Willie
MemberDeb I am very sorry to read what is happening to your dad. I believe that the Vidaza helped my wife for the short time she was on it prior to the transplant. I also believe that there are varing doses of Vidaza from what I read on this forum. I do not know how they arrived at her dose – or what the factors were. Some get the MDS from a prior treatment but most get it because they were unlucky. The blood disorders and treatment attempts are so unique to each that what he was doing by taking the Vidaza was probably worth the risks. Willie
MemberButch My thoughts are with the both of you. I hope that things will go good for Ashley. Willie
MemberDaughter During my wife’s bout with MDS she never had night sweats that I recall. I definitely remember the sweats during menopause (at any time of day). She was in the obvious Sweet’s phase for 6 months until diagnosed with MDS. She was in this phase for 5-6 months until her stem cell transplant. Willie
MemberSandy My wife had the same experience at UofW as Ms. Chaitowitz. She did not have an infection issue until her whites got so low when the MDS turned to AML. This was 4-5 months after the initial remission. Willie
MemberOne day at a time and start looking for your neutrophil count to reappear and start climbing. Will be thinking of you. Willie
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