Dad also, had the Arasnep shots. I believe his helped for about a year as well. He also, had no side effects from them. He now receives Procrit shots to help boost his RBC count. He went in Friday for 2 units of blood (2 weeks since his last transfusion). His other counts were actually pretty good for him. He came out of the hospital Saturday feeling really good.

Julie

Thanks, Julie and Posh,
I appreciate your coments so much--I can't wait to see my mom for myself next month. Will keep you posted. God bless,
Pat

I have posted in this section because I have MDS /low risk. I wanted to get some advice on how to help my husband to deal with this. I was diagnoised over a year ago and I am just on the wait & watch list. Counts are low but not low enough to begin any type of drugs. My husband has his own health issues, over the past 6 years he has had 4 surgeries on his back. One being a 3 level lumbar fusion. So he has plenty of pain that keeps him a wake at night. I hate that my situation adds to him not being able to sleep. We don't talk much about my MDS, but when I learn something new I would like to share it with him. Or when I have a really low energy day like I had yesterday, I want to be able to say so. As always a week or two before my follow up appointments is is really hard on him emotionally. I shared some info that I learned yesterday about low risk patients with my husband and it resulted in him being up the majority of the night watching tv not being able to sleep. When the alarm went off at 5:30 this morning it made it very hard for him to get going off to work. I felt very guilty that because I shared with him he was unable to sleep. Although he says he wants me to share and to tell him how I am feeling or if I am having a low energy day, I really don't feel like I can or should. He is the only person that I talk to about this. Our grown sons know that I have a blood disorder but we have never told them what the diagnosis actually is. I guess what I am wanting to know is how much do you as spouses really want to know or really want us to share. What can I do as the patient to make it easier on my husband. We have been married for 38 years so he is my life and I am his. I appreciate any advice you want to offer.
Have a great day everybody!
Janet

have you gotten any of the free material that is available? when my dad was dx'd I got all I could on the subject to learn about what we were dealing with. education and communication is the key.

sometimes the care giver has a hard time with all the aspects of their partners condition,give him time and he will become stronger. sending you best wishes for your future

My mother's transfusions are no longer helping her or holding for more than a day. She has not been able to have platelets in months because her body destroys them immediately. Hers are usually around 7-8000. So she is constantly bruised up and bleeding. She is now on oxygen and extremely weak. Her disease progressed so rapidly it has caught me off guard. Her oncologist told me in May she had 2 years. Now I have no clue if it is days, weeks or a month. She fell and had a subarachnoid hemorrhage last week and they could not perform neurosurgery because the bleeding would kill her. Amazingly she is still with us as hospice (I had just set up the day of her fall) was surprised to see her again. I don't know what to expect and work very far away so I don't want to be away from her. Especially if I cannot get to her in time. Are there signs when she is about to pass? I need to be with her and no one can tell me anything?

I'm so sorry to hear about your mom's condition and how quickly she has progressed. I'm not sure what all the signs are to look for if she's about to pass. I do remember almost 2 years ago when my father was in the hospital with a serious infection and he was not responding to platelet or blood transfusions. He was being transfused every day to every other day. After two weeks the doctor told us if he doesn't respond he would die. After almost 3 weeks in the hospital he did begin to respond to the transfusions. I know his doctor often says MDS is very difficult to treat. I guess you just never know how the body is going to respond to infections and transfusion. I would definitely try talking to your mom's doctor to see what he thinks. I will be praying for you and your mom. Keep us updated.

Julie

Janet, how are things going with you and your husband? My only advice would be as a daughter to someone that has MDS. I know that I try to be as involved in my father's medical situation as I can be. I appreciate my parents being very forthcoming and allowing me to know what's going on with them. As hard as the reality is to hear sometimes, I feel like it better prepares me for the future.
I hope everything is going well.
Julie

My mother had a more restful night but remains very weak and on oxygen. Her pain is subsiding for the moment and she says she is ready to move on (to the next world). I am trying to ensure my father (advanced Parkinson's) can be transported to see her before she passes. I still have hope she will stay a bit longer, but that is my selfishness of course. I dreamed last night that I took her to a movie and dinner in her wheelchair. We just did that a few weeks ago. But I know we never will again.

Hi SusannaB

Im so sorry to hear about your mother and her declining health. I too have MDS, but mine is manageable with a drug that targets my type of MDS.

I hope I can help you by relaying the last days of my brothers life in palliative care. It may / may not clarify what some of the signs were that we experienced in the last days / moments of his life. Michael passed away last year from Bowel Cancer.
The last days of my brothers life were traumatic for the family. Funny enough Michael (50 yrs old) seemed so optimistic that he would receive a miracle that he never really let himself think that he was going to die. Before he passed on there were significant signs that his body was not coping, he would suddenly fall asleep, then wake up confused. Michael had already lost a lot of weight when he was admitted to palliative care, but he became even thinner as he completely lost his appetite. Breathing became difficult for him and so oxygen was required. After awhile the pain became too hard to endure so the doctors put him into a coma. This gave family and friends enough time to gather to say goodbye. They brought him out of the coma and he passed away a few hours later with about twenty family and friends surrounding him. I think the miracle now was not that he was to survive Bowel Cancer, but that he would be surrounded by so many loved ones as he passed on. The palliative nurses said they had never seen so many loved ones packed into the room and that his passing was very moving because of the love and support they saw and felt themselves.
I know how hard it is to have lost a loved one, so my prayers and thoughts are with you during this difficult time.

Keep strong.

Rachael

Hi, I'm pretty new here. It doesn't seem like the caregivers post as much as the ones with the disease. I guess we're busy?

Susanna, so sorry to hear about your Mom. How is it going?

Janet, I can sympathize with you. When I had some health problems last year, my husband freaked out and couldn't handle it. I had to rely on friends and family. When I needed support, I called a friend. I think its tough for men because they're used to us doing everything, being the caretakers/caregivers and strong women. My husband and I actually went to some couples counseling to help us get through that rough patch. The counselor had to work with him to understand exactly how ill I was and how he could support me. I would recommend getting some counseling, maybe through your church or somewhere. You can always rely on us here online too!

Mom's got pretty severe MDS with all counts low, IPSS score of 1.5 and the RCMD strain with the weird 5 gene thing (I don't know what its called). She's trying to do the chemo/dacogen, but her counts keep going so low they can't do it. She's had 2 rounds of Dacogen and 7 transfusions of blood, as well as 2 or 3 platelet transfusions. She's on Epogen as well. Last week, she had a pretty good week and even went to the symphony. This week, she's down and having some rough days. It's been a real rollercoaster ride. I hate seeing her suffer. She's been an active lady for 88 yrs. and still drives meals on wheels and "plays" at the Sr. center. We're planning a party for her next month for her 89th bday. She's looking forward to that I think. Take care everyone and thanks for being here.

Thanks to all for the advice regarding my husband and how he deals with my condition. Not much has changed. We just don't really talk about it. He is not the type to go to counseling. God willing my condition will stay as it is right now for a very long time. I am very thankful for this support group. Even though I don't post alot, I get on here almost everyday to read others posts. They are so inspiring to me and helps me in so many ways.
Motorcyclegma: I hope that your Mother gets feeling better soon. We all just take the good days as they come and work through the bad.
Hope everybody has a wonderful weekend.
Janet

This support group is great. I am heartened by everyones comments. My first experience with MDS was with a brother in law. My mother is now afflicted with the same disease. I don't think she was ever given the option of Chemo or transplants due to her age. Throughout the year she has under gone many transfusions and is now dealing with iron overload. I believe attitude plays a huge role in dealing with any disease but this has been difficult loosing her huband, my father last year. I live across country but now I have been with her for the last week and people have remarked that she is looking better although very weak.

I think it was one of the hardest things I have ever had to deal with. Watching my dad slowly fade away. We are here for you hon

My mother passed peacefully last night at 215 AM after several days of tachycardia and high fever. Even with hospice medications, she had a lot of pain for the last month of her life due to a subarachnoid hemorrhage she suffered from a fall (due to her weakness from the low blood count) and complications from it.