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Pat Lawson
ParticipantMy husband was receiving blood and platelets weekly until he decided to go into hospice. He stopped his transfusions and started hospice on new years eve. He passed away on January 13th. When he started having trouble with breathing they hooked him up to oxygen and increased his medications as needed to keep him comfortable. It would be a great blessing if you can have someone there with you as the hospice nurses do not stay there with you unless you are in a hospice facility. He is blessed to have you there with him. May God bless you and your family.
ParticipantJames,
My husband was entered in a clinical trial in November 2018 using the same regimens. He was high risk with similar circumstances as yours. When he first started all of his counts dropped extremely low which they said was expected and by May 2019 he was considered in remission. He chose not to go for the stem cell transplant and by January of 2020 he quit responding to the treatment so he could no longer be in the trial. So that regimen worked for 14 months for him. My prayers go out for you…sending you strength and hope as you fight this horrible disease.
God Bless,
PatParticipantCaroline my husband passed away a little over a year ago at 66 years old. I can only tell you my experience and remember that every one is different. My husband was receiving blood and platelet transfusions weekly and decided after 6 months to stop the transfusions. We called hospice in and he lived another 2 weeks after that. If you are going to be at home with him please make sure you have others to help you. I was blessed to have my son and daughter there. I pray for God to give you strength and comfort as you go through this end journey with your dad. He is blessed to have you.
ParticipantLlona, I lost my husband in January. I feel your pain. When he stopped his transfusions he only lasted 13 days. If you would like to talk please email me at lawsonpy@gmail.com
ParticipantAnita,
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.
ParticipantI’m so happy to hear that. Cherish everyday!
ParticipantRose how is your husband doing? I think the last time we messaged you both had just come back from traveling.
ParticipantMichael,
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.ParticipantMichael,
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.ParticipantHi 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!
ParticipantNick,
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.ParticipantMy 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.
ParticipantNick,
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, PatParticipantAzacytidine (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.
ParticipantIn 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.
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