Signs of end stage MDS

[Pat Stroup]

Are there any signs of end stage MDS?

[Wendy Brizer-Maciol]

Loss of appetite, tiredness, more frequent transfusions, wanting to sleep a lot. My dear dad passed away in May and those were so.e of some of the symptoms he experienced the last two months.

[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

[Teresa]

Hi Rose, can you please PM me @ marites.relatos@gmail.com. Thank you.

[John Arington]

Greetings, I am new to all of this. My grandma was diagnosed one year ago and last week, a doctor told her that she only had months left. She has not been needing blood as often, but I understand that the doctor knows more than me. Now, one week later, a nurse told her that she only has days left. Then, they gave her a unit of blood and sent her home. Nothing has changed. She still cleans her house every day and takes care of 5 special needs ladies that live with her. She does have appetite loss, but she’s had that for a while. Does this sound like end stages? I don’t know enough to make a decision, myself.

[lovemydad]

Hi John, I hope your Grandma is proving everyone wrong in their diagnosis of a short time left. She sounds like a hard worker and I wish you all the best.

[Kim Alexander]

Hi,I’m in similar situation with
My grandmother. 3 weeks ago told 5 to 6 months if continued transfusions. 2 weeks ago they say less. Shes tired and stopped transfusions all together. She was 6.0 and got 1 unit blood and platelets for her very last one. They said wont be long but cant say how long or what I will expect to see. Can simeone help me prepare her and me!

[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

[Amy C]

Rose- this just choked me up. He is lucky to have you there at the end of his life. Breaks my heart. My Father started vidaza injections and neupogen in July/Aug as well. He has had one transfusion, he is very out of breath easily. I think his Red blood count is low. I am worried this is when things are going to stop being effective. He is very positive though. Did you husband have any sort of mutation they talked to you about?
Sorry for your loss. Amy

[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

[Kathy Stermer]

Rose so sorry for your loss. As a nurse for 35+ years I sat with many dying patients and also a few family members at the end. You described pretty much what happens as far as withdrawing and breathing changes. Thank god you had hospice involved. Their job is to make the transition as comfortable as possible. Many don’t get them involved soon enough. You are an angel for being with him until the end and even tho it may not have seemed he knew you were there he did. Sounds like his wishes were respected to the end so find some comfort there.

[Rose Palazzolo]

Thank.

[Diane Rasic]

I’m not sure if this helps anyone but here is an update on my mom. I posted detailed information on her MDS on Dec. 26 if you would like to see the details of her illness. My mom passed away March 21, 2019. After her first round of Dacogen in December she was hospitalized with critically low blood counts they tried iVig and it seemed to stabilize her counts temporarily. She decided in January to try another round of Dacogen. She only tolerated 3 days and landed back in the ER in February and again March. Her body simply never recovered. Her blood counts remained dangerously low. Our mom was completely dependent on transfusions at that point. She had 6 transfusions in 24 hours and her levels barely rose. It was so so heartbreaking. She refused to go on hospice but eventually came to terms. There was nothing left to be done. She was sent home on a Friday with 24 hour hospice care. They insisted she be transported home in an ambulance with a nurse because they did not believe she would survive the 10 min trip home. Hospice was rough at first and then after several bad nights and phone calls from my sisters they sent their best. Our mom held on until Thursday March 21. She was alert throughout the weekend until Wednesday morning and then non communicative. They increased or morphine and kept her comfortable in that final week. I think once transfusions no longer work you know the end is near. There is time but days, not weeks. Hospice care in the end went above and beyond. I know some only come weekly but due to her instability our mom had the gift of 24 hospice care in her home from Friday through her final breath on Thursday afternoon. That was a blessing. Be sure to reach out and use hospice when the time comes. No one has to go through this terrible disease alone. My brothers and sisters were with our mom that entire week. Sadly I was ill and diagnosed with kidney cancer on the day my mother died. A cruel twist of fate…

[Jim]

I have been on Vidaza for a little over five years. The typical cycle was five days receiving injections and repeating this every 28 days. Recently we have tried extending the cycle to five weeks and even six weeks.

Noticed significant change, now quickly out of breath and want to sleep a lot more than before. Not sure what Vidaza does to the body but I’m going to ask the Oncologist to go back to the four week cycle and see if things change.

The other thought. there may be a limit as to the effectiveness of Vidaza and perhaps what we are now entering is the final stages of this disease.

[Simone Boothe]

Hi Guys
I have Myeloma, MS and MDS. I was diagnosed with MDS in May 2017, Myeloma in December 2016 and MS in 2014. MS caused me to miss the warning signs. So investigations started after I collapsed in the street on the way to work in October 2016.
Until chemo put the Myeloma in to remission, I can’t have my long awaited transplant. In the mean time the MDS seems to be getting worse. I started out needing as few as 2 units of blood and month. Now I need 2 units every fortnight, if not sooner. It’s a worrying trend.
Thank you for sharing your experiences. I’m only 41 and I am very hopeful but I’m also a realist. But no one seems to want to be straight with me about the progression of the diseases. I had to give up work over 3 years ago and benefits really suck. I need to know if re starting my business (handmade paper crafting) is a realistic goal. Will I be around for long enough. Or is the little energy I have left better spent elsewhere.
You’ve helped me with this and I’m really grateful.

[Author]

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