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Sherry Pratt
ParticipantGet a second opinion for sure!!!! Where are you located?
ParticipantCindy Miller,
I too am a Christian and I have Refractory Anemia with Ringed Sideroblasts(RARS)- a type of MDS. I would love to talk with you anytime to tell you how I deal with the emotions of having an incurable disease that really alters your lifestyle in many ways and always not knowing what is coming next. Sherry Pratt – pratt8075@gmail.comParticipantCaliforniagirl,
My pharmacists at the speciality pharmacy where my Revlimid is dispensed told me that Revlimid affects some people and not others with gastrointestina stress. She also said it can not happen for months and then all of sudden start happening. And it can happen really quickly with no notice, sort of like IBS does. When I am on my 7 days off don’t have that side effect. I take a probiotic/pre-biotic/enzyme supplement. Can get you information if you send me an email. Works very well for me and also having yogurt once a day. Hope this helps. pratt8075@gmail.comParticipantLeAnn.
So far I have not had a transfusion. My Dr. specialist is in New Orleans at Ocshners. They also do trials there.
The only side effect I get from the Revlimid (a pill, 10 mg) is some gastrointestinal distress but not much. It is boosting my red blood cells. I take it 21 days and then lay off it for 7. By the time I get to the 21st day it has affectd my WBC and platelet count by dropping them, but not to a real dangerous level. My specialist in NO tells me I am low grade with the RARS. I agree on the BMB. Last one I had done a nurse practitioner did it and she had to try three times to get the bone sample. I passed out and my blodd pressure dropped to a level they couldn’t read. I told them from now on I will just be put under. That was awful. I have had 4 so far. 2 under and 2 awake. You are right. They have never had one so how on earth could they even think they know what we go through. I do love my specialist in NO though. The hemotologist I see here is great for other types of cancers but he wants me on chemo all the time. I finally convinced him to do whatever my specialist says. I take 50K units of procrit every Tuesday and now the Revlimid. My RBC can fluctuate up and down from 9.8 to 8.0. So far I have not gone below 8.0. I pray for healing every single day. If you would like to talk instead of this writing here you could email me at pratt8075@gmail.comParticipantLeAnn,
I am on Revlimid 10 MG and it seems to be working. Hgb now has bounced up to 9.8 once. It does however lower WBC and Platelets, but you get off of it for 7 days and they come back up. My oncologist in my home town wanted to put me on Vidaza but my specialist in New Orleans at the Ocshners Research center says no. He is a great doctor and specializes in different types of MDS and stem cell transplants. I hope you get the correct treatment. I took Erhthropoetin injections too and they didn’t work to raise my red blood cells either in the long term.ParticipantSue,
Your bloodwork is the window to your health. If your bloodwork is good I would go about life with vigor. Read Phillipians 4:6,7. ‘Don’t worry about anything……”ParticipantErin, What type of MDS did they all have? There are several types of MDS. I have Reractory Anemia with Ringed Sideroblasts (RARS). My dad had a form of MDS also but his was Thrombocytopenia driven. My dad was in WW II. I have heard many explanations as what causes MDS. One particular chemical exposure is benzene which is all over America in many forms. It is in lotions, certain insecticides, cotton fields in the south used to be sprayed with a chemical containing benzene. So there is no telling where we get exposed. I spent a lot of time in a microbiology lab when I was 20 handling liquid forms of benzene. I see a specialist at Ocshner’s in New Orleans and he specializes in MDS. He says it is usually not hereditary and that we really don’t know the cause exactly. I totally suspect our environment and the numerous chemicals we are exposed to daily in America.
February 15, 2016 at 12:58 pm in reply to: Would like to hear other's experience with dacogen #29261ParticipantJennifer Diurlin,
Do you have a specific diagnosis you would like experience/advice about?
Sherry Pratt -
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