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maueenh
ParticipantEve,
I’m so sorry to hear that your dad has passed. He fought a long battle with this disease but you fought along his side. I will keep you and your family in my prayers.
Maureen
ParticipantTerri- My dad is going to Florida Cancer Specialists in Naples. The nurse told him something about the pill going generic and they no longer are supplied with samples. Not quite sure what that is all about.
I would think this should be covered by medicare as Lynette mentioned but I’ve tried getting through to medicare with no luck. Unfortunately I’m working and can not stay on hold for the length of time required to access a “human”. Thank you for all your responses.Maureen
ParticipantShari,
That is wonderful that your dad is still responding. How often does he receive treatments? My dad was on the regime of 7 days on 21 days off and is scheduled to switch this month to 1 week on 4 weeks off. Just curious to hear what others are doing.
Maureen
ParticipantPatsy,
Did the doctor tell you what type of MDS your husband has? My father was diagnosed with a high risk form of MDS in late May and began Vidaza treatments in June. He has been transfusion free since mid July and is handling the treatment well. He takes meds for potential nausea and constipation but otherwise feels good. Prior to Vidaza he was being tx every two weeks for rbc. There is no certainty as to how long the Vidaza will work but we take one day at a time. If you search the forum site, there are lots of others with Vidaza experience. If you can get the details of the clinical trial, I’m sure others will weigh in with their thoughts.
Maureen
ParticipantEve,
I am so sorry for your loss.
Maureen
ParticipantEve,
My thoughts and prayers are with you both.
Maureen
ParticipantMy father also worked for an airline and was around jet fuel for years.
ParticipantYou can search this site for lots of information as well as contact the Aplastic Anemia & MDS International Foundation who will send you a comprehensive package of information.
Welcome to the forum
MaureenParticipantThank you for the responses.
KLS- my dad has had a good response to the Vidaza thus far. He has been transfusion free since July.
The doctor has not performed another bmb stating that he is sure he has improved given the CBC levels. His recommended protocol was 8 cycles at 4 week intervals then he said it was more flexible. I do trust my dad’s doctor (very much) but I was just reaching out to my friends on the forum to see what your experience has been. I believe that you have to educate yourself and be very proactive in this journey.Thanks again
MaureenParticipantEve,
When my dad was first diagnosed with MDS I went out and bought him an all natural multi vitamin (Rainbow Light-Just Once- Multivitamin for Men) at Whole Foods. It is fairly large but he cuts it in half and takes one half at a time. He swears this “big pill” gives him so much more energy and will find anyway to take it each day. I’m not sure of the iron content but if you have a Whole Foods nearby you could check it out.
Maureen
ParticipantSandy,
When my dad first began Vidaza his counts fell and they administered both Procrit and Neupogen. He had to have a few txs but his counts all recovered in approximately a month. His counts have been improving since.
Maureen
ParticipantLoretta,
So glad to hear that the chemo is going ok. I will continue to keep you in my prayers. Thank you for the update.
Maureen
ParticipantSandy, I’m so sorry for your loss. My thoughts and prayers are with you and your family.
Maureen
ParticipantLoretta,
I am sorry to hear that the Vidaza has stopped working for you. Did you have any indication that the Vidaza had stopped working before your BMB? Had your blood levels been falling over several months or did this happen within a one month period. As you may remember my dad is on Vidaza and I’m just wondering what I should be on the lookout for. I will keep you in my prayers.
Maureen
ParticipantSusan,
My dad has been on Vidaza now for six months and is doing well and I pray that his luck continues. He didn’t have much hair to begin with so I’m not sure if hair loss is an issue. He always has the anti nausea meds and something for the constipation. He didn’t take the constipation pills once and “will never do that again”. I hope your father has good results with Vidaza and will keep him in my thoughts and prayers.
Maureen
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