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Raghda VanderpumpParticipant
Hi Sherry
Thanks a lot for your reply. My dads name is Aly and he is 76 years old today. He is in the higher risk MdS blasts >7%. My dad refused to take Vidaza at the early stage of the disease. He has been surviving just on supportive care. Thank you
Raghda VanderpumpParticipantDear Brian,
I am very sorry to hear about your dad. We are all here for you and your dad if you would like to talk or want to ask any questions. The MDS foundation and the memebers here have been a great help to me and my dad. I would suggest you download a copy of blocks of hope which would give you an idea about the disease and different type of treatment. I am a daughter of a 75 Year old MDS patient. We have been through exactly the same thing. My dad suddenly complaining about being very fatigued and unable to walk and after 4 units of blood transfusion and a very painful bone marrow biopsy, we found out about this disease. We all here have a loved one battling this disease and you can ask us anything you are unsure about. My dad has been battling this disease for exactly one year now. It hasn’t been easy but there is always hope and that’s what you need to keep reminding your dad of. As long as he is breathing, he needs to remember there is hope. Plse understand that a big part of surviving is the patients mental wellbeing. Also when you download the book, you would read about how important supportive care is. Please stay strong for your dad. I am praying for you and all your family. Feel free to drop me a direct at elgabbasr@gmail.com
Raghda VanderpumpParticipantHi Celine, Thanks a lot for your note. And I am very pleased the Vidaza worked for you. I read your emails to my dad and this is giving him a lot of hope.
Thanks a lot and hope to hear more good news about you.
All the best,
RaghdaRaghda VanderpumpParticipantHI Diana,
Thanks a lot for your note and I am very pleased the Vidaza worked for you. I am not very successful convincing my dad to take them. He is very scared that they will only deteriorate him further. After reading your message, I immediately translated it into Arabic and sent it to him. He seems to be considering the Vidaza injections now after hearing about your experience. I am sorry to ask but did you feel that the side effects were easily tolerated? I am very worried as my dad is 10 years older but he is very healthy and doesn’t suffer from any age associated diseases (Except for MDS). I would like to also know if your doctor anticipate you becoming transfusion independent as you continue taking the Vidaza? My dad needs 2x units of blood every fortnight but recently he can hardly waits a week and a half before we start finding blood donors. Thanks a lot Diana and all the best. I wish you all the best and look forward to hearing more good news about you and the rest of the patients here. I am reachable at elgabbasr@gmail.com
Raghda VanderpumpParticipantDear Natalie,
I can’t describe how sorry I am to hear this. My deep condolences to you and your family. Please do reach out for support whenever you need. My father is still struggling with his MDS and as you said you can only imagine how many changes the body go through as a result of the blood transfusions. Unlike your dad, mine refused to have the Vidaza injections as the doctor advised it might cause him a massive setback before he starts showing any progress. Unfortunately, I don’t live with my dad but I make the effort to go every 8 month to help him out as my mom is getting very overwhelmed. I just visited him early March and I did everything I could to convince him to take Vidaza but with no success. Initially I thought he was against it due to its cost but later I discovered that his doctor sort of advised him against it. I was so angry and I thought that his doctor doesn’t know what he is doing. But later and after reading your last message, I am becoming more assured that Vidaza might not be a good idea. I thought that MDS patients die from the blood transfusion side effects, especially in my father’s case where he has very basic healthcare support. Watching him deteriorate almost by the minute is not easy. He has been suffering muscle pain. His feet are also very swollen and his skin is becoming very dark (I am suspecting because of the iron overload) His last Ferritin test was about 4900 which is very high. I am sorry to ask you and I am very sorry to remind you of this pain but did you feel the Vidaza injections helped your dad in any way? I can’t help but think that this could be an option. I am also too scared I am making the wrong decision for him. It is sort of no win situation. I am sorry again to ask you these questions but I am hoping you can give me some insight about the Vidaza injections. I am reachable at elgabbasr@gmail.com.
I am praying for you and your family in this difficult time.
PS. I have a 17 year old sister and she is doing her final exams that will determine which university she can join. I too have been married for 3 years and have put the subject of having kids on hold since my father got sick a year ago. I can’t feel I am in this frame of mind to be able to look after anyone else besides my father.
Raghda VanderpumpParticipantHi Natalie and Catherine,
I am so sorry to hear about your loved ones being diagnosed with MDS. I am a daughter of an MDS patient too. My father who is 74 years of age has been diagnosed with MDS just a month ago. He has been suffering from the symptoms for almost 8 month now. Like yours, my dad is blood transfusion dependent. At the beginning of of this year, his red blood count and platelets dropped dramatically and he needed blood transfusion every 3 weeks (from 2-4 units of blood). Only a month back, his blood transfusion dependence has increased. He now requires 2 units of blood almost every 2 weeks. I am so devastated not only because of his condition but for so many other reasons. My father lives in Egypt while I live in New Zealand. Managing things almost half way across the world is not easy. I am 10 hours ahead and yet I manage my father’s doctor appointments and medications as my mother is getting very overwhelmed. In Egypt, there is no medical insurance or any reliable healthcare system at all. TO be able to get a proper prognosis of my dad’s condition, I tried to consult so many doctors both in Egypt and overseas. The MDS foundation has helped me understand about MDS and the treatment limitations. My father tried Eprex and Aranesp injections but his red and platelet count didn’t improve much. I only came to know about Vidaza last week only when i reached out to an MDS Specialist in Florida. Doctors in Egypt are unfortunately not very reliable and the good ones have already migrated overseas. I have to source these injections at my own expense and feeling so scared already reading how expensive the treatment cycles are. With 50% chance i am prepared to use all my savings. But my dad is so stubborn and he is freaking out. Like you guys i am trying to hold on to any hope even if it might be 50/50 chance. I was going into depression in the last few months before i came to know about this forum and thought by reading about people’s stories it might give me comfort and a feeling that I am not alone, even by being so isolated here in New Zealand. I also wanted to share my story with you. Thanks for listening and all the best for you and your loved ones.
Raghda (Raggie)
Raghda VanderpumpParticipantHi Lann,
I am so sorry to hear that Vidaza didn’t improve your mom’s condition. However, I read that it doesn’t show much effect for low risk MDS patients. Have a look at this video https://youtu.be/vB7bpRlOONA. It talks about the different responses to Azacitidine
All the best for you and your mom
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