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My husband passed away in in January. He had been receiving blood and platelet transfusions weekly up until he entered Hospice. Once he started having Hospice come to our home he stopped transfusions and he passed away in 2 weeks. There isn’t any way of knowing how long because everybody is different. My husband battled this disease for 2 years. Once treatments quit working and he didn’t have any other options he was transfusion dependent for 7 months. Right after Christmas he made up his mind that he didn’t want to live like that anymore. He was 66 years old. I miss him so much but I am relieved that he is free from this disease now. Please surround yourself with loved ones. Talk to them honestly about how you are feeling. Say things from your heart that may be left unsaid. God bless you and bring you peace in whatever decision you make.
I’m so happy to hear that. Cherish everyday!
Rose how is your husband doing? I think the last time we messaged you both had just come back from traveling.
Stay strong he needs you more now than he ever did. This will probably be the hardest thing you ever go through. You spent this last year helping him live and now you are there for him helping him die. Cherish every moment with him even though it is so very hard to see him suffering. God bless you for being such a loving grandson. My thoughts and prayers are with you. If you’d like to talk let me know and I will send you my email.
Your description of your grandfather’s journey is very similar to my husband’s. He was 66 years old and had been receiving blood and platelet transfusions weekly since May of 2020. He decided the week after Christmas that he wanted to stop transfusions and Hospice came in New Year’s Eve. He passed away just before midnight January 13th. The room that he was in had the hospital bed that he was in and another bed that I slept in right next to him. The night before he passed I dreamt that he had gotten up out of bed and walked over to my side, startled, I jumped up thinking he was going to fall and I looked over and he was still laying in the hospital bed. Minutes later he yelled out my name (he hadn’t spoken in a couple days) and I went to his side holding his hand with no response. The next day he never moved and he passed that night. I know in my heart that night before he passed is when his soul left his body. God Bless you for being there with your grandfather so that he can be there in his home. Stay strong and know that you are truly loving your grandfather unconditionally.
Hi Angela & Sue – My husband was diagnosed with High Risk MDS with excess blasts in October 2018. He started a clinical trial of Vidaza and Venetoclax November 2018. He responded well and stayed in the trial until January 2020 when he quit responding. After that he tried Decitibine but had no response and a biopsy showed his blasts back up to 13%. In May he started with Palliative Care and has been receiving blood and platelet transfusions weekly since. At that time the Palliative Care doctor had said she thought he would only survive 2 months before his body would start rejecting the transfusions. We are now at 7 months and he has iron overload from all of the transfusions. He spends most of his time in bed and recently has started developing inflammation. He is 66 years old and at this point we are taking it one day at a time. I am so grateful for every minute, hour and day that I have with him. I just don’t want him to suffer. It’s so hard being so isolated because of Covid. We do let the kids and grandkids come in to visit. When it was warmer I would get him outside when friends came over but it’s too cold now. I would be happy to get together by email if you are interested. God Bless you and your families and I pray for strength for all. Stay Safe!
There are different types of MDS. My husband has high risk MDS with excess blasts (RAEB1) and after his last biopsy in May they said he was transitioning to AML. There are medicines out there that help with blood transfusions. Unfortunately for my husband they will not give it to him for his type of MDS. There is a list of Centers of Excellence on this site that would be worth looking into to see if there is a site near you. The doctors at these centers are very knowledgeable about MDS and if you are just seeing a local hematologist it would be the best thing you could do for your mom.
My husband was in a clinical trial of Vidaza and Venetoclax from Nov 2018 to Jan 2020 and he quit responding. So he tried Decitibine but had no response to that. He is 66 years old and the transfusions are the only way for him to keep living. He has been receiving 1 unit of blood and 1 unit of platelets each week since May. Because he has received so many blood transfusions he has iron overload but the doctor has chosen not to do anything at this time. We have him in Palliative Care so that he will be able to transition to Hospice when the transfusions dont seem to be working anymore or he decides to stop. The amazing thing is for the last couple of weeks his platelet count has started to rise and he has not had to get platelet transfusions. The doctors are amazed that he hasn’t gotten an infection because his numbers are so low but I think its because we are being so very safe because of Covid.
My husband had quit responding to treatment in May and has exhausted all other treatments. He has been receiving blood and platelet transfusions weekly since. They were giving him a transfusion when his hemoglobin dropped below 8. But in these last few months they changed it to 7.5 and if he gets below 7 we can tell because he is dizzy and can hear his heartbeat in his ears. He is tired all the time and pretty much spends his time in bed. Everyone seems to be different on there threshold so I would talk to your doctor and see if she could be checked more frequently so that she doesn’t get so low. Take Care…I wish your mom the best…God Bless you and your family, Pat
Azacytidine (Vidaza) & Decitibine (Dacogen) are given to you by IV or by shots in a Hospital or Outpatient/Infusion Center so it is covered under Medicare part A or B. Medicare part D is for prescription drugs that you would take at home so that is why you can’t find it there. The FDA has just recently approved oral Decitibine so you might have trouble getting that covered unless you doctor fights with them about it or the drug company has some kind of patient assist program. Hope this helps.
In the Spring my husband quite responding to the clinical trial he had been on for 14 months. His blasts had gone back up to 13% so the doctor at the Center of Excellence that he was treated at tried to find another clinical trial. Because of COVID-19 alot of the clinical trials were not accepting new participants and he was not a match for any that were available in our area so he had no other options.
I am so sorry for the pain you are going through. Unfortunately there are no clear cut answers with this disease. My husband went thru a clinical trial hoping to give him an extended period of time or at least to help others in the future. He quit responding to the treatment after 14 months which was better than the 9 month expectancy that he was given. He met with the transplant doctor during that time and decided that the odds were against him and to let go and let God. Next week it will be 2 years since he was diagnosed. Please don’t second guess yourself. There are no clear cut answers with this disease. He receives blood and platelet transfusions weekly and we are grateful for every minute, hour and day that we have with him. He cries almost everyday about how he will not be here for his kids and grandkids. I pray that someday there will be a cure for this disease. May God bless you and your family.
My Husband was diagnosed in October of 2018 with High Risk MDS with excess blasts. That November he started a clinical trial of Vidaza and Venetoclax. He quit responding to the treatment January of 2020 so he tried Decitibine with no response. His bone marrow biopsy results in May showed his blasts back up to 13%. In June we started with Palliative Care and he has been receiving blood and platelet transfusions weekly. His Hemoglobin drops below 7.3 and his platelets drop below 10 so that is why they give him transfusions weekly. We go every Monday and Thursday to be checked. The Palliative Care doctor said in June that he would probably live 2 months but here we are in September and he is still with us. He spends most of his time in bed but the kids and grandkids come over frequently as do friends and he comes outside to enjoy time with them. He mowed the grass yesterday with our grandson on his lap. He also supervised family building a deck these past couple of weeks he was exhausted afterwards but he did it. It worries me that the cold weather is coming so he won’t be able to get out anymore to see people (he gets cold easy) and we cant let them in because of Covid. We are thankful for every day that we have with him and we will get hospice involved when needed. Hospice will not get involved yet because receiving blood transfusions is considered life saving so they won’t come in until he decides to quit receiving the transfusions or they stop working. I would definitely recommend getting Palliative Care involved they do a great job of helping with quality of life and then can easily transition to Hospice when needed. The nurses in Hospice are like angels walking the earth. Take Care & God Bless
Kathy, are you receiving any transfusions?
I’m sure you are looking forward to getting out of the hospital. Please stay safe when you get home and keep us updated on how you’re doing. I hope Amy’s explanation helped you she explained it very well. Take care & God Bless