[Rose Palazzolo]

It is difficult to make these decisions and guilt follows you thinking did I do this for him or for me. My husband had MDs and was diagnosed at age 74. It will be 11 months next week that he passed and feels like yesterday and some days it feels years have passed. He did the Videza for two rounds. Went for the thirds and doctor said it’s not working. Those injections took everything out of him. He went down hill after that. He did the transfusions first monthly, then every three weeks then it progressed to weekly which also included platelets. From September to February he did the transfusions which was an all day thing at least six hours. He had no quality of life. We did nothing, he could hardly walk. He only went out for transfusions. He slept a lot, ate very little, watched a little tv and back to sleeping. When his counts no longer changed even after transfusions he made the decision to stop and we called in hospice. One month later he was gone. Since your husband isn’t capable of making the decision and counts are so low, maybe you should discuss with his doctor about hospice. It is a hard decision and most difficult for the caregiver. Hospice will make him very comfortable. Just be with him and love him, till the end. My husband was active, healthy, we thought and up and about until he was diagnosed. Nine months later he was gone, he lost 50 pounds in that time. If there was any chance he would be back to his old self we would have kept trying, but that was not going to happen. Talk to your doctor and hospice you will make the right decision for both of you. If you want to email me feel free at onecraftrose@gmail.com. Prayers for both of you.
Rose

[Rose Palazzolo]

Thank.

[Rose Palazzolo]

Amy,
My husband never had any mutation. Not sure what that was. His blood counts just dropped once he stopped having transfusion. He was positive as long as the transfusions and platelets brought his counts up. Once his blood counts didn’t change or went down he quit the treatment and we went in hospice. He was with hospice from February 18 till he passed on March 21st. I hope your Dad is getting oxygen. My husband used it on and off but the last two weeks he was on it 24/7. If you have any questions please email at Onecraftrose@gmail.com. All the Best.

Rose

[Rose Palazzolo]

Kim,
My husband passed away March 21, 2019. He stopped his transfusions in February. We had Hospice come weekly. He was tired and week, slept a lot and ate small meals. He started to have breathing problems and he was on oxygen on and off. The last few weeks he was on oxygen 24/7 and in bed all the time. He still got up to go to bathroom. I ended up staying in our bedroom with him while he slept. The nurse said he was a fighter and not sure how long it would take. That was the Monday before he died. Tuesday he was fine, talking, we ate dinner together in bed and watched our tv shows. He had a bowl of ice cream. At 10 he said he was going to sleep. On Wednesday morning I knew he was different. He asked for his juice and only had a few sips. He slept all day and was having more and more trouble breathing. At 3 I asked him if he wanted a Boost since he hadn’t eaten and he said yes. He never took a sip of it and fell back to sleep. By 4 he was not breathing right and very restless. I called Hospice and a nurse came over. I started giving him morphine every two hours. She said he is ok and left. I stayed in bed with him holding him and knew this was the end. His body was ice cold. I said to him you are leaving me today aren’t you. He just kept grabbing my hands. I kept holding him and telling him it was ok. By 11pm I called Hospice again and a male nurse came over. He repositioned my husband on the bed, put a pad under his mouth and left him on his side. He gave him meds and my husband calmed down and fell asleep. I went to check on my husband and blood was coming out of his mouth and he was breathing very heavily. I called the nurse in and then I saw my husband gasp his last breath. The nurse checked him and he was gone.
I don’t know if everyone goes the same way with MDS. My husband didn’t try very many treatments just the injections back in June and July. He went downhill after that. I know I kept searching for what to look for what are the signs the end is near, but like I said one day he was his “normal” self and the next day he was gone. I hope this helps you a bit. It’s difficult being the caregiver. Every morning I wake up and can’t believe in less than a year he is gone. Prays for you and your grandmother.

Rose

[Rose Palazzolo]

Gail,
That was the most frustrating thing is that no one would say how it ends! Maybe everyone is different. My husband couldn’t have a transplant because of other health factors. I prayed he went peacefully in his sleep. My husband had the same treatments your husband is having. Once it became a weekly event of his counts low and needed more transfusions and counts never rising he decided to stop all treatment. There was no quality of life, I was already alone since he was sleeping more and more with each day. The last month my husband was on oxygen 100% of the time. Because he stopped all treatment he had less oxygen in his blood making it more difficult to breathe. His feet were very swollen with edema but he still tried to walk to bathroom with walker. I knew it was his final day. His breathing was more difficult and I was giving him more pain meds to relax him so he would calm down and sleep. I held him and felt how ice cold he was and knew it was his time. His hands were usually cold but now his entire body was. I just prayed for his peace, he had been through enough. In the end he smiled and was gone. You and your husband will know when it is time to end the treatment. It was almost a relief. He survived a month after he stopped treatment. He was still Fighting every day. Again everyone is different but I hope you find this helps a bit.
Rose

[Rose Palazzolo]

Jason,
Wanted to let you know that my husband passed last week March 21. I’m posting more information in a separate post.
Hope your Dad is doing better.

Rose

[Rose Palazzolo]

Jason,
My husband was diagnosed in June 2018 with aggressive MDs. Everything you said about your dad’s treatment is exactly the same for my husband. He was 74 when diagnosed and now 75. In February he stopped all treatment and went with hospice. The dates are almost exact, the drug treatment the same. At this time he has started using the oxygen almost constantly. He is sleeping almost all day and night and eats three times a day, but maybe a small sandwich or a Boost. He did everything, cooked meals, did the shopping, yard work, etc. he can barely shuffle to the bathroom now. He felt the same having no quality of life he rather have the platelets and blood given to people who would benefit from it. His doctor as well as the hospice nurse told me 2 weeks to a month. His vitals are good and he is on fentanyl patches and oxycodine and prednisone. It kills me each day as he goes down hill. The pain meds are just to make him comfortable but of course the disease is still there. As the blood counts continue to drop so will his condition. I’m by his side day and night. Had a lot of visitors but going to stop visitors for a few days so he can rest. We had an appointment with the MDs Excellent Center in Miami but as the appointment got closer he told me to cancel it, there was no sense in going. I have let him make all the decisions and have stood by his choices. We have no life, but for now we still have each other. Prayers to you and your dad and family.
Rose

[Rose Palazzolo]

Nance,
My husbands counts have dropped. His platelets are at 10. At point where he is getting two units of platelets each week and two units of blood every other week. Pain had not gotten any better. He take oxycodine for pain every four hours and sometimes two Tylenol in between. He was on time released oxytocin but took him off that and now on fentanyl patch. Nothing is helping with the pain. He wears compression socks which give a little relief. He has found keeping pillows under his legs helps too for a bit. We got a new mattress so the feet can go up and that helps. We have been talking a lot about hospice and think this is where he is heading. I wish I could give you helping advice. But like your doctor, ours also feel there is not much they can do. He was told his MDs is in the very aggressive stage. Praying for some comfort and rest for you.

Rose

[Rose Palazzolo]

Pat,
My husband was diagnosed in June with MDs, high risk. Was given 6 months to 1 year. We go weekly for blood work WBC 2.7, RBC 2.17, HGB 7.4, HCT 7.4, Platelets 16. He sleeps 15 – 20 hours a day. He still eats, not as much as he use to, mainly eggs. The only time he goes out is to go for the blood work. I was told that he will start weekly platelet transfusions now and blood transfusions as the HGB goes below 7. He has had several transfusions already. I want to know what happens at end as well. I’ve searched everywhere online and haven’t been able to find anything. I’ve even asked the doctor and basically no real answer. Seems once a love one dies the caregiver leaves the group and we are left unknowing. I’ll keep checking back here to see if you get any more information. Good luck.
Rose

[Rose Palazzolo]

Karen,
My husband, 75, was diagnosed in June 2018 with MDS. He has had lymes disease for years. He did everything around the house, cooked dinner every night, grocery shopped. I was very lucky. Once he was diagnosed he started injection of “chemo” and after two rounds stopped because his doctor said it wasn’t working. Since then he has no energy, sleeps most of the day. We were scheduled to go to the MDs Excellence Center in Miami and a few days before he asked me to cancel because they won’t help. I can’t force him. So he continues with blood work every Monday, counts keep going down even though he is getting weekly injection of procrit. His platelets are at 20, red blood and HGB are very low. He gets blood transfusions when needed. His hands shake, sometimes he runs a fever, sometime he is freezing. He has constant pain in legs, it moves around some days it’s knees, but most often it’s his shins that feel like shin splints. Of course doctor says he shouldn’t have pain!!! Really then why is he on so many pain pills!!! He says from the waist up he feels great. He wants to do so much and can’t do anything but sit in chair. He basically shuffles when he walks and walking is becoming more difficult. The only place he goes is doctors. It’s hard on him and very hard on me the caregiver. He has also lost 80 POUNDS since June! I crochet and sit and wait and do what I can. I’m sorry I have no answer for you but you’re not alone.😟
Rose

• This reply was modified 5 years, 4 months ago by Rose Palazzolo.

[Rose Palazzolo]

Hi Nancee,
My husband, 74, was diagnosed in June 2018. He has constant leg pain. He shuffles to walk. He has no energy and sleeps a lot during the day and night. Doctor said he shouldn’t have leg pain, yet many write here about leg pain. He’s been getting a shot of Procret each week and blood work each week. His counts just keep going down. Platelets at 32, red blood cells at 8.1. He is missing two chromosomes from this disease putting him in a very high risk. I have no answers for you, but you are not alone with the pain. I wish you well.
Rose

• This reply was modified 5 years, 6 months ago by Rose Palazzolo.

[Rose Palazzolo]

Sherry
Sent you an email this morning.
Rose

[Rose Palazzolo]

Deb,
My husband runs a fever on and off. Could be fine one minute then 103 the next. We’ve called the doctor when he got fever in beginning, he went to hospital twice and no one knew what was causing the fever. Had blood cultures done and giving IV fluids. So now when he runs a fever I give him Tylenol and it drops back down. Not sure it’s the best advice but getting no results several times this is what we do. Works for us for now.
Rose

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