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Terri
MemberHi Barb, Bob is 59 and was dx with MDS in Aug of 03. I do believe all of the vitamins and supplements in conjunction with the Regular meds the Hemotologist has him on does help.
He is currently undergoing Vidaza treatments.
Counts are hanging in there.I am sure Neil will send you questions to ask the doctor he is so much help.
Prayers are with you.
MemberThey should run a blood test if going the Vidaza route its a BMP which will test the Kidneys and Liver. The levels have to be at a certain point for them to administer the Drug. If you go to Vidaza.com I think there is more info on the protocal etc.
I Hope all goes well for your dad.
MemberBig, Your Age is definately a Plus, There are other members who I believe have gone through the SCT and will probably respond. I wish you well and add you to my prayers.
MemberI agree, I have found so much information that has help me get through this for my husband
MemberTah, If you do not believe in Nutrition or Nutritionist what type of treatment are you doing for this dreadful disease, You don’t seem to share any of your experiences on the Disease or your treatments, just seem to Give advice or comments on things other people are doing.
And no matter what It is helping us, so sorry that I disagree with you. I am grateful to those forum members that are sharing their treatments, experiences since I have learned so much fromMemberLisa, Thank you for sharing and I know your father has found peace and is free of pain. He has moved to Heaven but is still with you and your family to watch over you. Everything you said is so true, You need to make every day count.
God Bless you
MemberWonderful news i am happy for you dad and Hope it continues. Wishing you well and will continue prayers
MemberJim, My husband Bob on Vidaza and His counts are WBC right now still a little high at 14, RBC 4.5 norm, HGB runs anywhere 10.3 to 11 and Plts from 40 to 60. Dr is satisfied with these counts during the Vidaza. Last time after 6 rounds of Vidaza his leukemic blast in the marrow went down to normal so they stopped the vidaza 7 months without and the Counts were pretty normal except we could only get the plts up to the 80’s.
I hope your Mom has success with the drug.We see the Doc today, Oh by the way, our Dr does Bob counts every week we go to the office for his CBC to be done
MemberHe should try if possible to get to Moffitt Cancer center and contact a Dr List there who is a specialist in MDS. Moffitt is in Tampa which is on the West Coast of Fl
MemberThere is something its a shot like procrit for RBC. Is it Neuprogen, not quite sure as my husbands whites are usally high or normal.
MemberTah, You don’t post too often, how are you doing with your handling of this disease. How are your counts, you still receiving Tx? What type of treatment are you using or is your doctor suggesting supportive care. Just curious, Many of us pour our hearts out to each other and the support and prayers are so welcomed. I do not see you joining in on treatment and how you are doing. I know I have learned a lot from so many here. Would never have known about the 5 AZa (Vidaza) if it wasn’t for this forum.
MemberWe are Consulting with Hemotologist and a Certified Nutritionist this is not self Medicating we are not choosing a bit of this and a bit of that. Sorry, But Not all Nutritionist fit your bill from quackwatch.com.
There are good ones out there and I have a lot of faith in ours.To each their own decision, This is ours and is working along with the Conventional meds. And since when are Vitamins and supplements not Conventional.
MemberSad, I go with My Husband to each and every visit, The doctor knows it will be me that ask all the questions usually. When first Dx I had so many things to ask as a result of this forum. I have kept a journal since Bob was dx aug 03, I stilluse it to write down weekly counts, medications, nutritional appts, Questions for the doctors, side effects from the Vidaza etc. It really helps and our Hemo has no problem taking the time to answer my questions. That is what they are there for. I hope your Dad will let you go. I know in Bob’s case, he forgets so many of the things because he does get nervous and is so afraid of this dreadful disease.
MemberI hope your dad is doing better, continued prayers
MemberJim sorry to hear about your Mom, Neil on the Forum I am sure will respond with a lot of questions for you to ask the doctor. My husband Bob is RAEB -t and is on Vidaza. We tried it the first time Last year around Nov and he did six rounds and his counts came back stabalized, Could never get the plts normal but everything else hung on well. After seven months the blast started rising in the Marrow and so did his WBC he is now back on the Vidaza and counts are holding. If you look at my other post you will see that we have been using a Nutritionist for over a year now who has added Vitamins and SUpplements to boost the immune system etc and it is helping. By the way Bob will be turning 60 this year
Your mom will be in our prayers.
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