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Lillian Evans
ParticipantDonna,
Have chosen Dr. Bhatt at the Buffett Cancer Center in Omaha. They have two possible donors and are beginning to check them. I just finished my 5th. round of Dacogen. Will have one more series of it then possibly have a stem cell transplant early September. Feeling good and my blood counts remain good. I hope I have made the right decision to go ahead with the transplant.
ParticipantHi, I too am a 2003 cancer survivor and have been diagnosed with MDS resulting from the radiation and heavy doses of chemo. I have been taking dacogen to control my numbers since February. Am now in the process of preparing for a stem cell transplant. I am 74 so will have the lighter dose of chemo. Am healthy and plan to beat this second round of cancer.
ParticipantDonna, Happy Belated Birthday ! The Dr. visit went well. He answered all my questions. The bottom line is the doctors estimate the Dacogen will only work approximately 2 years. If I want a chance for longer term survival a mini transplant is my only option. It is a gamble as many things could go wrong. I believe I will take the chance since Iam in good health, take only one pill for acid reflux. I will tell them next week to start the process. He said it might take up to 3 months to get a donor and get everything organized. I will have to have a good physical before they will do the transplant. I am really nervous about the whole thing but guess I will take the chance. One thing he said I could change my mind at any time but at this time I don’t see that happening.
ParticipantDonna, Doing really well. Only problem Iam having is one foot and ankle swell pretty bad. Doesn’t hurt and I elevate it to get the swelling to go down. Yes the date to meet with the transplant Dr. is coming up. Pretty much have decided to go with the transplant in Omaha. Hope it is the right decision. Happy early Birthday to you. Our sons birthday was the 16th. How are you doing ?
ParticipantDonna, I have had Dacogen three times. Each 5 days in a row. Between each Dacogen series I was to wait 3 weeks before the next round. One time my white count was so low they had me go 4 weeks before starting the Dacogen. I I knew how long the Dacogen would work, my decision would be easier. Two years go by pretty fast and I am well enough to really be enjoying my family and my life. Decisions, Decisions !!
ParticipantDonna, Only travel 17 miles for the Chemo treatments. Today is my last treatment of the 3 times series. Still feel fine. They say next week is when I might feel pretty tired. They will be doing another BMB later to check the blasts. It does not show on the blood work. I will be seeing the transplant Dr. May 22. Really nervous as to what will be the outcome. If they have found a match I am sure they will be expecting an answer as to my decision.
ParticipantI have had two rounds of Dacogen and into my 3rd. day of the 3rd. round of Dacogen, and other than being a little tired I have not had any side effects.
ParticipantDonna, I agree not knowing exactly what lies ahead is very nerve wracking. My white count jumped clear up to 5 on Monday, so they went ahead with the chemo. So far I am feeling great. I seem to tolerate the dacogen very well. Hopefully this round will take the blasts down to zero.
ParticipantStacey, My leg does not feel heavy or tingly, it just feels tight around the ankle. I have increased my water intake and that has helped some. As long as it doesn’t hurt I guess I will just take a wait and see approach. Dr. thought it might have something to do with me being off my blood pressure medicine. Once I started treatment for the MDS my blood pressure has been pretty low so they took me off of the medicine. Blood pressure has stayed really good.
ParticipantDonna, I think you would be fine driving yourself. Dacogen is pretty mild from what I have been told. My siblings have either died or are too old, so I would get a match from a non relative. As far as mutations, it sounds like they have not been able to get that information from my BMD. Something about they get a good sample from the bone but not from the liquid. I really don’t understand all that. Yes I get sedation for the BMD. If I go for the transplant in Omaha I’am not sure they would, but I plan on really pushing for the sedation. I have heard bad things about being awake for the BMD.
ParticipantDonna, Got the results from Bone Marrow Biopsy. It has shown that after two rounds of Dacogen, my blasts have gone from 12 to 5 %. Doctor seemed pleased. Had my blood taken today, my red blood cells and platelets continue to rise, but my white count is way low. Was given a shot to possibly help and will return Monday for another blood test to see if the shot helped. Will probably not get to have chemo next week. While taking Dacogen I felt a little tired, but no nausea maybe a little weakness.
ParticipantDonna, My treatment plan so far has been Dacogen for 5 days then 3 weeks off. I have done this twice. If my white count is acceptable I will start my 3rd time of Dacogen, Monday. After I have completed 3 rounds Iam not sure what is next if I don’t agree to the transplant. Three doctors have told me. they didn’t think Dacogen would work past 2 years. If I agree to the transplant I would be going to the Buffett Cancer Center in Omaha, Nebraska.
ParticipantRay, Thanks for the response. I thought maybe since they didn’t use as much chemo the success rate might not be that good. Did you get really sick from the chemo ?
ParticipantStacy, What exactly is Revlimid ?
ParticipantDonna, am waiting to get the results from my bone marrow biopsy and will then see the transplant Dr. May 22. I am having a terrible time making up my mind. I feel so good now and after reading of all the complications that can occur following a transplant its a tough decision. I have had three Drs. tell me the Dacogen only is affective for two years. I would really like to live longer than that.
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