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Naomi
MemberTerri:
Glad that Bob is doing well. It always makes one feel there is hope with this disease.
WIll keep you both in prayers to continue to do well.
NaomiMemberHi Kate:
Glad to hear that George is getting good care and hopefully this will pull him out of the problems of this awful disease.
Will keep you both in my prayers as well as everyone else.
NaomiMemberGreat News !!!! It is always great to hear good news. Thanks for sharing
NaomiMemberHi John
I am on revlimid. Have been on it since Nov 03. Will be taking it until Nov 05. Last tx was Dec 8,2003. AS my doc says, I am one of the “poster children”. There are side effects, as with all meds, but I seem to be handling them.
Will not know how long it lasts until I go off it.
NaomiMemberHi Vance:
I was just thinking about Ruby and wondering how she was doing and up pops your note on her. I am so glad that she is doing well and hope she continues.
It is sooooo great to hear good news about people on the forum.
I hope that since stem cells from umbilical cords seem to be working that it gives us all a better chance to beat this disease.
Hope she continues to do well. Prayers are with you both
NaomiMemberThanks Jimbob. It puts things in perspective for us.
NaomiMemberIf I am not mistaken, Neil mentioned Dr Mufti in London. I have seen papers he has authored. Might be wise to check him out.
NaomiMemberHi Christine:
I took a trip with my daughter 2 years ago. We flew from Providence, RI to San Diego. Took a bus to Mexico and boarded a ship to Hawaii. After touring the islands, we flew back to Providence. It was a great trip and just made sure that I did not over do. The ships have wheel chairs for shore excursions if needed.
I went snorkeling, parasailing and a lot of other excursions.
Had a tx just before leaving and carried a letter from doc if needed.
Hope you can convince him to get out and enjoy a trip away from home.
NaomiMemberHi Kate:
Glad to hear the GOOD NEWS. Now we need to hear some more from that side of the state.
NaomiMemberDear Sarah:
Sorry for your loss. Remember the good times. Take it one day at a time. He has no more pain and suffering.
My prayers are with you and your family.
NaomiMemberI took thalidomide about 3 months on a trial. I was like a zombie. Did not go anywhere, did not want to, slept a lot, had neuropathy in hands and feet and no energy. When I came off it, I was like a new person. Had to continue to have txs. the whole time I was on the drug.
Started Revlimid 11/08/03. Started with 10 mgs. After 2 weeks broke out in hives. Stopped and then started up again 12/16/03 with 5 mg. Had my last tx on 12/8/03. My white count is below normal – around 2, my platelets are around 100,000 and my hgb is 12.9. I have had more energy this past year and have been able to do so much more. I just had a bmb taken and will get the results on 2/9. I will be on the revlimid trial until the end of 11/05. Do not know what will happen when I go off it, maybe it will be approved and I won’t have to stop taking it.
I do have a couple side effects with it. I have tingling in my fingers , but still can feel with them. I have diahrrea and control it with imodium.
My understanding is this is to help red cell count. The original protocol was to have people with low red counts and needing transfusions. There were two different protocols started one with 5q- and one without.
I hope this information helps your dad to make some choices.
NaomiMemberHi Drew:
One of the side effects of revlimid is diarrhea. The doc told me to take Imodium and I can usually get by with one pill as needed. I was afraid that it might go the other way, but has not.
Be sure to ask her doc before doing it.
NaomiMemberHi Kate:
I am glad that you are getting George to Moffitt. Dr. Lancet is a wonderful man and very concerned about his patients. I am sure he will give George the best care available. He will be up front with you and answer your questions. Hope you have good luck and that George will improve so you both can go back home. My prayers are with you.
NaomiMemberI also have medicare with a supplemental ins – Thrivent Financial for Lutherans. I have not had to pay for anything except for the tv when I was in Strong for a week. Medicare automatically sends the 20% to the supplemental and they pay their portion. Have had no trouble at all.
NaomiMemberApril:
I am sorry to hear about your mum-in-law. Hope she is kept comfortable. You will all be in my prayers.
Naomi -
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