What is your general feeling with MDS?

[MaryS]

Hi everyone! How are you feeling? That is what I am trying to understand . When I ask my dad how do you feel , mostly he says weary. Before he started his chemo his RBC's 2.45 Hgb was hanging around 9.1- 10, . He has had 2 rounds of dacogen. His RBC as of 3 days ago was RBC 3.18 and HGB 10.4. What I want to know at what point do you not feel weary. My dad usually says he can't explain how he feels. Can you explain the feeling for me. I can't wait to find out what his counts are tomorrow. I hope they have gone up since Monday. My dad starts his 3 rd round of dacogen tomorrow.
Is it possible that this medication could make his counts almost normal? I want him to feel not so weary. My dad has other things going on but I am trying to see if his description of how he feels is like most people with MDS. Thanks for your help.

[bailie]

I think everyone will agree that feelings are different for everyone. I am in my 6th cycle of Vidaza and I am feeling fine and as good or better than when I was first dianosed. I think it is primarily due to my blood counts are almost normal now. During the treatment I had very few side effects, but was somewhat tired during the first 3 or 4 cycles. I did feel just a little different, but that could have been due to the subQ shots in the stomach for seven days in a row.

[MaryS]

Thanks Baile, my dad tolerates the chemo well too and probably feels better when he is on it . Probably because of the Prednisone. I do realize that his blood counts are low, and that is why he feels out of sorts. When his RBC's went from 2.45 to 3.45 I could tell he felt better. My dad wakes up and looks normal , but as the day goes on it changes. I just want a day for him where he doesn't feel unstable, weary. He is battling Lymphoma as well, so maybe it's add to the feeling.
I am so happy to hear that you feel well. I am always happy when I hear success stories. It gives me hope. At this point all I want for my dad is quality of life. I hope decitabine can do that for him.
Thanks for sharing Baile.

[sobrien]

Everyone says everyone is different and that is so true. It is nearly impossible to describe how one feels. I always say I feel great and I do.

I keep hearing friends say: "How do you feel?" or "I am so glad you are feeling better" or "You sure don't look sick" or "How can you get that much chemo and not feel bad?" I feel no different than I did before my diagnosis. I play pickleball three times a week, bike with our club 10 miles every Saturday morning, walk the dog about two miles every day and rehearse for our gigs as we have contracts for performances at five festivals this summer.

Next Monday I begin my 20th cycle of Azacedidiene treatments followed by a shot of Neulasta. I pray for at least another 20 cycles plus 20 more.

I am very grateful and thank God daily, actually many times a day that I can continue my life only being tied down to 10 days at an infusion center (7 days plus the shot plus two blood draws each month).

But, everyone is different and responds differently.

[Snuuze]

I had over a year when "weary" didn't really describe how I felt. It was "fatigued". I couldn't walk across the room without stopping to catch my breath. I had ATG treatment 3 years ago this week, followed by cyclosporine. I kept waiting for the magic time when my counts would turn around and that I would feel better. For me it took 8 months, and I was truly tired of being tired and of waiting.

For some of that time, no one would know from looking at me that I was sick. I think that is true of many MDS patients. Of course, as the MDS refused to go away, eventually I looked as sick as I felt.

Even when our counts are rising, our bodies are still battling 24 hours a day to recover, and weariness is part of the battle. Hopefully your dad is allowing himself to submit to being tired and not trying to do everything he once did. If the treatment works, he will one day be able to resume most of his activities. Now if I'm tired, I don't know for sure if it's the disease or the fact that I'm 72! I try to blame it on my age.

[bailie]

Sue,

Was Vidaza ever mentioned for you?

[MaryS]

I appreciate your help. We had a check up yesterday by both Leukemia and Lymphoma doctors..My dad is responding to Decitabine/ prednisone 50 mg. he is having a partial response( with his Lymphoma) in other words it's working.
Dr Jabbour( at MD Anderson) says my dad is responding well. He started his 3rd round of chemo yesterday. This is good news!

To snuuse: oh my dad has submitted. He was a golfer. He can't play anymore now . but I have hope he will again. We r at the Rotary House hotel at mD Anderson. He doesn't do much. We bought him a walker with wheels and he is starting to walk.he needs to. Usually by 4:00 he is done. Shower and into PJ's and in bed . The old say," if you don't use it -you will lose it" there is a fine line being a caring daughter and personal care giver(I am a nurse)I know too much and my dad is non-compliant but respectful and vice versa. he is getting so close, I fight hard for him. Now he needs to do it.

Hi Sue yes Vidaza and Jakafi is what they wanted to start with,however
He developed the lymphoma and everything changed.
He is on Dacogen because of the studies they have done on MICE with tumor related cancers like my dad's .decitabine his helping the Lymphoma too.
If it fails we still have Vidaza.
This is a tricky disease! There are many who are worst off than my dad. I want my dad to know that he is not alone , that people like him are working hard and fighting. You all inspire me to help him! I told my dad, "I can't work hard enough to help you, I will do anything, but it has to come from within himself too.

I can't pray enough for you people and I do.
Thanks for sharing with me.
Remember, this is what I tell my dad.
"Just take one more step today than you did yesterday and build on that"