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When the transfusions stop working

Tagged: jay.senapati@gmail.com. Dr senapati

This topic has 5 replies, 5 voices, and was last updated 4 years, 11 months ago by Kim Alexander.

Viewing 6 posts - 1 through 6 (of 6 total)

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November 28, 2017 at 10:36 am #34593

Natalie Lugo
Participant

Idk where to start.

My dad is in critical delicate condition. He was diagnosed with MDS in September and began Vidaza treatments in October. Early this month he was supposed to start his second round, but on the very day he was supposed to start treatment he fell (he was incredibly weak) and we have been at the hospital ever since. He was never able to start that second round of chemo and went from getting blood transfusions every 2 weeks to every 2 days throughout his hospital stay. Being in the hospital for this long when you’re immuno-compromised has only led to him getting sicker and for the past 24 hours he has just been vomiting blood and bile every hour on the hour. Long story short my dad is now dying from complications of this disease. I feel horrible seeing him suffer like this. I guess I’m posting this for support and stories on how to get through seeing a parent suffer from the end stages of this horrible disease.

December 6, 2017 at 6:35 pm #34622

Hella Robbana
Participant

Hi Nathalie, same here it’s horrible my dad had 4 vidaza cycle and now plaquette transfusions stop working it is bloqued on 4000 since 3 weeks which is too low… how could you be so sure that it is the end stages ? Maybe he will get better and it’s due to to the toxicity of the chemo! I wish you the best for you and you father the most important thing is to enjoy time with them. Good luck for us and god bless them.

December 6, 2017 at 6:37 pm #34623

Hella Robbana
Participant

Hi Nathalie, same here it’s horrible my dad had 4 vidaza cycle and now plaquette transfusions stop working it is bloqued on 4000 since 3 weeks which is too low… how could you be so sure that it is the end stages ? Maybe he will get better and it’s due to to the toxicity of the chemo! I wish you the best for you and you father the most important thing is to enjoy time with them. Good luck for us and god bless them.

December 9, 2017 at 12:03 am #34629

bapaorissa
Participant

My father is 80 yrs old diagnosed MDS ON
LAST WEEK SEPTEMBER 2017. We haven’t given chemotherapy but we regularly transfuse blood n single donor platlet. Every day his condition goes bad to worse. Difficult to see him suffering at this age. Intolerable bone pain,restlessness,vomiting, loss of appetite,sleeplessness and memory loss are so bad difficult to handle and give palliative treatment.

May 4, 2018 at 1:45 pm #36406

Myrna Miller
Participant

My husband was 78 when diagnosed with MDS, he is on Vidaza 5 days every 28 days. His blood counts are not great but has not had a transfusion in over a year. He is now 80 so how much longer this will work is anyones guess. He has absolutely no problem with the Vidaza through his port. The shots in his belly caused problems as did the iv ones. They give him an anti-nausea first and then 170 mg of Vidaza.

May 19, 2019 at 8:38 pm #46767

Kim Alexander
Participant

Can someone tell me what to expect once a patient and doctor decide it’s time to stop transfusions. She was every 2 weeks to every 6 or 7 days and about to start 2 times a week. Shes tired and does not want to continue. We were told she may have a couple months best case to maybe weeks.
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