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MaryParticipant
Husband gets one shot for 5 consecutive days monthly he gets really tired about 2-3 after treatment. Begins to gain some energy back around day 4-5.
MaryParticipantCorrection husband on 27 day cycle not 29.
MaryParticipantHusband was on 29 day cycle
Last two treatments had to be stopped. He became very weak platelets dropped into 20’s also feet swelled, developed rash and his eyes became very red. He was foggy and doesn’t even really remember much of past 3 months. Took him off Rivlimid platelets back up and he feels like himself again. He has appt with Oncologist Monday will see what next steps will be. He is also getting Vidaza shots 5 days a month they do not affect him other than being a little tired.MaryParticipantHusband on 4th round Revlimid worked for first couple treatments 5 days of viidaza shots and 28 revlimid. last month his platelets tanked to 28 took him off for 2 weeks they went back up to 70. Started again Monday had blood work Thursday platelets back down to 38 he goes back Monday for more blood work not sure what MD will do if they keep dropping. He is eating well, can walk okay (had broken hip years ago) but his arms get really weak and can’t pull himself up even with walker. Will talk to MD Monday confuses with what is going on.
MaryParticipantThanks for your reply it helps to know this is common. My husband has been on Vidaza since August of last year. His last BMB showed 7% blast so started him on Rivlimid. 5 days Vidaza and 21 Rivlimid (pill he takes once a day) not sure of side effects yet just started Monday but seems to be tolerating well. Was supposed to begin last month but ended up in hospital for a week and a half with pnemonia and blood infection. He also broke hip 5 years ago now arthritis setting in getting physical therapy twice a week thank goodness Medicare takes care of that. Good luck to you, day by day is all we can do.
MaryParticipantCurrently not at Center of Excellence as the only one is 2 hours away. He does 5 days Vidaza shots and 21 days Rivlimid. He had a 7% blast his last BMB reason for Rivlimid. I trust his care team but if this does not work well may make the trip to CE. He was currently in hospital with pneumonia and blood infection.
- This reply was modified 4 years, 7 months ago by Mary.
MaryParticipantHusband in Navy was in Vietnam believe exposed to agent orange he was EOD had CLL 10 years ago was in remission until Aug 2018 now. MDS caused from chemo for CLL was on Vidaza now adding revlimid since blasts went to 7%
MaryParticipantAgree my husband had CLL 10 years ago I also believe was from agent orange he was EOD in Navy and in Vietnam. Tried submitting for vet benefits but denied. He was in remission for 8 years now he is suffering from MDS due to the chemo from CLL. One person told him he had to finally go to his congressman to get help. Truly a shame our servicemen/women not being taken care of.
MaryParticipantYour oncologist should have someone in the office that can help find you grants to cover co pay. My husband is starting treatment Monday md office called Walgreen his pharmacy, they have a specialty drug pharmacy and they secured the grant for us.
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