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Terri
MemberJack, My understanding from our dr was the Decitibine which is Dacogen was different and harder then Vidaza, Actually I believe there are trials in the office for Decitibine. He thinks it would be too harsh on Bob, HOwever I did go to the web site and Found some info that I will ask him about tomorrow since we have a DRs appt.
Thank you for the insite. Bob is on the Vidaza too much for the IV’s his body is a mess, He had5 units of blood recently and all of the areas where they stuck him are now blistering and a mess, He will soon run out of veins, Plts way too low for port and I am too fearful of infections since he needs the drug as a mtc drugMemberCampbell, My thoughts and prayers are with you, May Gods Peace be with you always
MemberThoughts and prayers are with you.
God BlessMemberSandy what a wonderful article, I wish I had the same writing skills but the sound of your story sounds so familiar. When we first went to our Primary never heard of MDS when I searched prior to the Hemo visit all I could find was info on Leukemia.
Thank you for sharing this.MemberBobs whites are always high, But the Doctor looks at the Granulocyte count as well and he states he would be more concerned if the Grans started to Plummet. This weeks Bobs whites were in the 30’s
MemberPatti, I am so sorry for your loss, My prayers will continue for you and your family and hope that time provides you comfort and peace.
God Bless youMemberThanks Sandy for keeping us informed so we can join in this fight, followed your link
MemberMy Prayers are with you, Its been a tough battle, and I always read your post and can see that Your MIL has fought so hard with your care and love.
PeaceMemberSandy I did go to the website when you posted Hope this helps we need all the research possible
MemberBob has been on Levaquin continuously as well. His Whites are abnormally HIGH. so I wish the Levaquin would bring them down some. Currently doctor is watching him closely to see what treatment will be next he may consider increasing the vidaza doseage. Whites are in the 50’s
He has had these glitches before at one point the whites were up to 77 but that was around the time of the brain bleed. After pulling through that they got down to norm. He does have blast in the blood and marrow. But the vidaza seems to work on him so Dr is watching as I said closely we are seeing him personnally again in a week as he will view Blood slide smears every time he sees bob to view the cells etc.Bob and I were just talking about the Levaquin and other supplements he is taking, don’t want to stop anything because something is keeping him strong
MemberEach case is different, – Did she have a Bone Marrow Biopsy, DId they provide her with a classification of MDS?
When Bob was first diagnosed and I read up on the disease I freaked on the Life expectancy that I found, however I don’t anymore because I believe you can’t go by that and as you wander around this forum you will see. There are long time survivors here, Neil who you will see post now and again is a wealth of knowledge and I believe he has survived this disease for quite some time. Suzanne is in Remission, so on and so on. We have also had our sadness here as well.
I am the caregiver and I could not and can not make it through this with all the wonderful people here.Bob is in his 4th year currently, we have had some ups and downs but we take one day at a time.
I will keep your mother in my prayers.MemberBOb has been on for almost Two years, this time Doctor Has tried different time spans in between. In 2003 Bob started Vidaza as 5 AZA before it was even approved. He took it for 6 rounds and it seemed to work, blast down. He was off for 7 months and the Blast started coming back so doctor put him back on and he has been on since. So far it has worked, However we see the doctor tomorrow I believe he will do a BMB as last visit he sent out for a Flow Cymetry test after reviewing his slides apparently something he did not like, The test came back indicating a bmb is in order as he has blast in the perip. blood. I just hope the vidaza did not stop working. Need some prayers
MemberI hope it helps, Glad to hear you were able to work out the insurance thing
MemberSandy Bob gets two shots 75mg/m2 each. That is the dosing on the Pharmion Vidaza website. The drug is very thick consistency that is why they have to use two needles. I read they are starting trials for ORAL vidaza I hope it goes through fast. Bob is running out of spots for the shots.
MemberJosey, Actually I go direct to the Nurse in the office that handles the Insurance referrals for Meds. The doctors have no clue.
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