No I am on the borberline of having Aml. So I really can't have anything that could push me over. All my counts are extremely low. I am taking 3 different pills to fight infection. I am just happy for Joe. Hope his spirits stay high.
Happy New Year.

My biggest concern is that his WBC is way high (33.6). Hgb is 10.1. ANC (whatever that is) is also high 26.7. I believe, if he could find someone who would do a bmt, he would go for it. Like I told you, he is 77 but has always been an exercise buff and was very strong before this hit.

I am praying for you Cat. Happy New Year. Let's hope that a cure is found soon.

Cat,
Thanks to your information, I am calling the MDS specialist (Dr. List)
at Moffitt Cancer Center in Tampa tomorrow. Tried today but they were closed.

How are you doing? I send you hope and love.

Millie

I wish I knew what the anc was also. I can't help you there. What did the nurse say? They are pretty good about answering your questions about the blood test. Never feel like you can't ask. I feel I am my best advocate. If I don't ask who will. My husband doesn't ask he figures I will and he is right I do.His wbc is high. Is you husband fighting a infection some where or do they feel it is part of mds. I have the opposite problem. My wbc is extrememly low. I go in tomorrow for more chemo and then I will have another transfusion. If I move around I feel like I have worked my muscles to fatigue and I am huffing and puffing like crazy. This Mds is a real kicker. Hope Joe is still feeling good.
Cat

I did google ANC but now I can't remember what it was. Senior moment. But what I wanted to tell you is I got an appointment with Alan List from Moffitt Cancer Center for 2 weeks from today. Thank you for that information. Joe is not feeling good at all. I had such high hopes when he was so up Sat. and Sun. but he is feeling terrible. I am very discouraged. Hope you are doing OK.
Millie

Millie how is Joe feeling today? I hope he is better. Like I said this Mds is really a b - - - kicker. I am feeling good. I had a transfusion Wednesday and my Hgb went up to 8.6. Man that is high for me. I could dance the night away. My Wbc is still very low but at least I have some energy.
Thinking about you and Joe a lot.
Cat

Hey Cat,
He was feeling pretty good until he had blood work done - Hgb down from 10.1 to 8.5. He is being transfused Monday. We are both discouraged. I'm thinking it has to do with the vidaza swinging the counts. Can't wait until we see the specialist at Moffitt. Maybe someone has some hope for us. I'm glad you are dancing the night away. Keep up the good work. Joe's 2 sons are coming next week. Hoping for warm weather so I can sit on the beach and read.

I hope the transfusion helps him. Does he take vitamins? I am going to ask my specialist Wed about vitamins. If they would help and what types to take. I'll let you know what she says. Tell Joe not to get discouraged about his counts. they will be all over the place. Just as long as he is feeling good. I try not to pay to much attention except to my wbc. I don't go any where in fear that I will caught something. I can tell though when my hbg counts start going down cause I huff and puff when moving around. Does Joe do the same? All of this is like a bad movie I know.
Cat

I should have said catch something... Sorry about that..
Cat

Cat,
He has NO energy and he is very demanding. It's quite a drain I must say. The transfusion does not seem to have helped and now he has to have some iron removed, I think on Friday. That's his usual Procrit day so I guess they will put something in and take something out. I am so anxious to hear what Dr. List (Moffitt) has to say. We seem to spend between 2 -3 days a week at doctors. What a crappy life!

Millie: I hope things settle down soon. I know doctor appts can be
a bit much at times. They may put Joe on EXJADE to remove the iron. I've been on it for over a year. It can be very expensive ($4,000+) so I hope you have good supplemental insurance. My copay is $15.00 a month for 60 tablets. I hope the boys are there to give you some time. Hang in there. Hugs!

Millie how is joe feeling? I know we can be demanding. It is hard not to be when we can't really do anything for our selves. Being sick brings out the child in all of us. Try talking to Joe and tell him you want to do as much as possible but a thank you is always nice. Sometimes we forget because we are just plain crabby. I hope the new doctor can help you out.
Cat

Hi Cat,
We went to Moffitt Wednesday. Dr. List is taking over the management of Joe's disease. We will just go locally for the Vidaza. Dr. List has stopped the Procrit. Said it isn't working and it is expensive (no kidding). They (Moffitt) think a lot of his problems are heart related. The MDS has not really progressed since the first bmb almost 2 years ago. Tues. we go to the cardiologist. Thanks for telling me about MDS specialists. There is great info to be found here. How are you doing?

I am glad you are gettting answers about Joe. I was growing worried cause it had been so long since a post. I hope the cardiologist can help you out. Is he on any meds for his heart now?

I am doing great... My insurance company has approved a stem cell transplant--I have 3 donors that are a number 10's waiting to give their stem cells as soon as I go into remission. My BMB has shown that the Vidaza is working so 2 more rounds of vidaza for me. That will take me into April and then BMB again. I hope my blasts are 5% or lower so I can have the transplant so it is a wait and see again.

Cat

Oh Cat, that is wonderful news. I am so happy for you.

I think I should start a discussion on MDS and CHF. Maybe someone has some insight.

Joe's son just left - he was great. Gave me time for just me. The other son flaked the night before he was to come. Said he was ill. Guess he was. Hopefully he will make it out here before too long.

I will keep the good thought for you Cat and will let you know how we make out on Tuesday.