My Mom has MDS RAEB-2

[Francisb]

I don't know a polite or appropriate way to ask this, but need some information. I wasn't paying attention and just went though 4 days of Hell, had to go to dr. for nausea among other things, what is the appropriate amount of stood softener to keep this at bay? I want to start way before the next cycle. I don't think it was the chemo. I felt I only got tierd from that. I am definitely going to have to watch my diet. I Don't ever want to go through that again. Today is the 5th day and I am finally returning to normal, go to tomorrow and get blood work. Thank you

[bailie]

What is "among other things"? If it is constipation it is important to be taking MiraLAX while on any of the anti-nausea medicine. Important while getting Vidaza.

[Chirley]

My Doc put me on regular Senna tabs during Vidaza cycles.

[Francisb]

After 3 rounds of Vidaza, I have went from 43,000 platelets to 174,000 as of today. White blood cells are 4.3 & Red blood counts are 3.95, Hemoglobin is 12.3. and neut are 36.2, She said she has never seen anyone respond this well. She has me scheduled for two more rounds for sure. It sure gives me more hope. I am very happy today. A long way from last May when I got the diagnosis.

[Neil Cuadra]

Originally Posted by Francisb

She said she has never seen anyone respond this well.

That's a report any patient would love to hear. What great news!

[Francisb]

I haven't posted in a while, its been quite a roller coaster these last few months, the Vidaza quit working in June, I am now on Dacogen, four days a week, This month my counts have came up. I am tolerating it well, although I was hospitalized twice in September and given 2 units of blood each time. I had contracted strep when my husband was in the hospital and feel like that was a lot of my problems. This month I finally feel good. In July, my husband was diagnosed with pancreatic cancer, he had the whipple surgery, came through that just fine. He is taking chemo one day a week, after chemo, he will do radiation and then chemo again. They are working with us so we can come at the same time. He was fortunate to be in the 15% that could have the surgery. We have come to terms with it (after the initial shock) all and just live one day at a time. From July to 1st of October was really rough. I guess I just wanted to vent. Thanks for listening to me.

[Cheryl C]

What a difficult time you've been through! You couldn't come to a better place to vent. We're all "listening". Good to hear from you again and to know that you have made it through to a better situation. You are in my prayers and thoughts.

Keep posting!

[Francisb]

Wanted to let you know my husband passed away Feb 5 from pancreatic cancer, it was quite a shock, we thought he was doing well after the whipple surgery (and he was) half way through the chemo/radiation he started getting weak and swelling, we kept thinking it was the chemo/radiation. It had come back with a vengeance, we called in hospice on a Tuesday and he died the following Sunday. He was home with us. Quite a shock even knowing he was dying. We see and hear what we want to. We did have 8 months with him. It is making me a little scared. My platelets keep going down, they are 39 now. WBC, RBC and hemoglobin is pretty good. Not in normal range but close. I have not had a treatment since last of December. I have an appointment next Wednesday with my Dr. to discuss my situation. My kids are going with me. Bless their hearts, I know they are worried about me. Was wondering after Vidaza and Dacogen what would be next. Is this getting serious? Can stress affect your platelets, Lord know I have had enough of that. When I was diagnosed I never dreamed he would go before me. Thank you listening to me.

[Neil Cuadra]

Originally Posted by Francisb

Wanted to let you know my husband passed away Feb 5 from pancreatic cancer, it was quite a shock

I'm very sorry that you've lost your husband, and that it took everyone by surprise. You've told us that you've lost siblings too, and it's hard to imagine how much grieving you've had to endure. I'm sure that being home with hospice care helped a bit, but nothing can prepare you for this type of loss.

Can stress affect your platelets, Lord know I have had enough of that.

The information I've read indicates that stress is more likely to increase platelets, not decrease them.

[Marimari]

Frances,
I just wanted to let you know I am sorry for your loss, I am praying for you and also to thank you for posting. I am a new member, my mom was diagnosed with aggressive RAEB-2 recently and began the chemo (Vidanza). Your posts encouraged me alot so thank you for sharing and reaching out. You made a difference in my life already.
Hope to hear back from you soon.

[Cheryl C]

FrancisB - I only just discovered your husband passed away back in February, and I just wanted to offer my sympathy. That would have been a great shock for you. How are you now?

[Francisb]

It's been a rough year to say the least, it seems like I held together while my husband was sick, and fell apart afterwards. About 3 days before he passed, I woke up with the most severe pain in my thumb. I went from there till first of May and not having the use of my right hand before really getting any relief. In between got in to see a neurologist, carporal tunnel in both hands on top of arthritis. The months of March and April I took Revlimid for the MDS. It didn't work. I am disappointed in my Dr. I was in the hospital first of May for fever which turned out to be pneumonia, low platelets, low red blood cells, pseudo gout, this is where I finally got some relief for the pain. A doctor that took care of me when I was in the hospital was the one who came told me there was nothing else they could do for me (She talked to my Doctor). She was very compassionate, but I felt like the Dr. that had taken care of me for 2 years should have been the one to tell me. They talked hospice and home health, of course I took home health because I feel I can live a while getting transfusions. I have done great these last 2 months till last week my platelets got down to 15, first transfusion since May. I am in the process of getting a second opinion. My Dr. has not called me in for a office visit, I have not seen her since before I was in hospital. I have not had another BMB, don't know how they know where I am at without it. Hopefully this new Dr. will do one. I know my diagnoses will not change but hope there is a new treatment out there. And want someone who seems to care. I have not and will not give up. I just live for today and thank God each night for giving me another day. I have never lost my appetite and if it wasn't for the fatigue I wouldn't even know I was sick. Do other people feel this way? My home health nurses are wonderful. I just needed to vent. LOL Thanks for listening to me.

[shellybean]

I am so sorry Francis! You have a great attitude and I wish you all the best