My 76 yo father has mds
April 16, 2018 at 11:31 pm #36217Raghda VanderpumpParticipant
Hi 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,
RaghdaMay 23, 2018 at 9:52 pm #36517Brian KelleyParticipant
After a week and a half in hospital, most in ICU, and 4 blood transfusions we found out today my 75 year old Dad/my hero has MDS, I had to Google it, my Mother is sad, my Brother is in denial, and I do not know what to do…May 24, 2018 at 2:31 am #36519Raghda VanderpumpParticipant
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 firstname.lastname@example.orgMay 24, 2018 at 7:01 am #36520Brian KelleyParticipant
Thank you Raghda, I’m still trying to process this diagnosis, I was up reading half the night trying to learn all I can, I’m also trying to compile a list of questions for my mother to ask the doctor because he is supposed to be released from the hospital today and have his first consultation Friday. I really want to know where they are going to grade him on the scale, I’m hoping and praying it’s low risk with his symptoms and blood transfusions I don’t know, but like you said I can always hold on to hope. I will download the book you suggested for the family and continue to try and support my family… Thank you for praying for my Father and family I will likewise hold your Father, yourself, and family in my prayers also…more to comeNovember 5, 2018 at 2:42 am #44340angesParticipant
Today my mother who is 77 will start the first cycle of Vidaza. She was diagnosed with MDS end of september. We are very nervous although she doesn’t say much about it, I know she is. She also has diabetes and I put her on a low carbs diet but we can’t cut them out completely cause she needs some carbs. Yesterday she said she experienced some pain in her legs but this morning she said the pain was gone so I don’t understand. She also said that the last few days she was sweaty. I so hope the Vidaza will help lengthen her life for a few more years, I pray everyday. I’m glad I came across this platform and I wish everybody here strength and positivity.November 14, 2018 at 12:40 pm #44381TeresaParticipant
My 84 year old mom was recently diagnosed (August 2018) with high risk MDS. She did not want to do chemo. Our family looked into alternative treatments and fortunately found a very successful and results driven center in our area – not only are her numbers improving but fatigue and pain are gone. She is back to her old self, energetic with a positive disposition. Alternative center did NutrEval test that showed her vitamins, mineral and nutrient deficiencies. Test also reveals any metal toxicity. Just recently, Medicare has now approved for this test to be covered – please speak to your doctors about this. Quality of life and strong immune are critical to fighting MDS. Praying for everyone inflicted with MDS.
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