I am doing ok. still having my moments but doing ok. thank you!

Hey Posh, Glad to hear from you and that your coming along ok. You know we want and like to hear from ya.

I had the last chemo today (they had to delay the last one til today cause the schedule got messed up). My WBC last Monday had been at 2.5 which was as high as it had been for some time. Today when they did the blood test for the transfusion tomorrow they found WBC of 3.0. It's been a long time since I've seen a count like that. I know the reality that it could change any time but love to see it there.

We have our version of the Relay for Life this Friday night (if the rains don't come). We're going to be there for an hour or so with the gang from the cancer center.

Have a great week everyone.
God Bless,
Mike

thank you mike! I have my moments but yes I am doing ok. for now lol.

good to see your numbers going up a tad! I am still praying for a cure!

Mike, great to hear your numbers are going up. That's always exciting news!
Dad has been on transfusions for over a year now and goes almost every 2 weeks. He just recently was able to go 3 weeks before receiving blood, it's been a long time since we've seen him be able to go that long. We were super excited of course. He started a new medicine, Procrit, that he receives weekly (a shot). Hopefully it's helping and will keep the transfusions a little farther apart. We are grateful for any improvement, no matter how small.

Does anyone belong to the MDS Foundation page on Facebook? I have noticed they have free forums. There is one coming to San Antonio this June and I'm thinking about trying to go. It's a few hours away from me, so we'll have to see if I can swing it.
I hope everyone has a great week!

Julie

I have them on fb. not real active though but they do post about upcoming events. good to hear your dad is doing well!

Hi Julie,
I have been on the MDS site and would love to attend one of their forums. Unfortunately none of them are being held anyplace near me. How long has your Dad had MDS? I'm wondering how it progresses. I had my first transfusion in January and have been getting Arnesp shots every two weeks. My Hemoglobin went from 8.1 to 11.3 after the transfusion, but has been going down gradually since then. Now at 9.2. I'm pretty tired all the time, and feel I'll need another transfusion in the near future. Anyway, it's good talking to you and I hope your Dad continues to improve. God Bless.
Jean

Jean,
Dad was diagnosed about 5 years ago, but his dr. believes he had it for several years before being formally diagnosed. He was already being treated for many of the symptoms.
He started with the Aranesp shots and when that stopped working, he went through chemo, Dacogen, for almost a year (that did work for almost a year), then when Dacogen stopped working he tried Vidaza. Vidaza did not help, just made him sick. He has been transfusion dependent for about 2 years. The worse part is probably the fatigue. It is constant and his lifestyle has changed drastically, but he keeps a positive attitude and keeps telling his doctors he wants to live. He has a wife, 4 kids, and 2 grandchildren with 1 on the way.
He recently started the shots, Procrit, and that has seemed to really help his counts stay up. He is over 2 weeks out from his last transfusion and his RBC is 8.9. This will be his 2nd time to go 3 weeks between transfusions.
Stay strong.
Julie

Hi everyone. Saw the vampire Tuesday, & Hgb is back to 10.2. Seems that 11.5 count the time before was some kind of aberration. Regardless, I feel just as good with 10.2 as I did with 11.5, maybe better. Does anyone understand the connection?

Birdmom I don't understand it all other than we need the red cell goodies to keep everything going, give us a lack of fatigue and keep us breathing better and this junk we have doesnt' care abou that.

I"m hard headed in that I do all I can to stretch out the time between transfusions partly because I refuse to give into this junk and the other is that it delays any iron overload issues. My reaction to transfusions is wierd. I was at RBC 7.5 last week when they did the labs and was having trouble with the breathing as much as anything. the day or two after I have a transfusion I feel pretty good in the areas of breathing and fatigue. But afte that it all goes to crud LOL. It will stay down in breathing and fatigue for another week then start back up for the next 2-3 weeks until I need another. My doc is pretty cool in that he will tell me if I'm doing anything risky by waiting and insist I get the transfusion, other than that I'm a phone call away any time I feel I need or want one.

I also have realized that I can't do anything with exertion out in the heat now without getting sick - don't have a clue why that is.

God Bless and have a great weekend everyone. We havn't heard much lately so I hope and pray that all the leaky boat crew is doing good.

Mike

Mike, you talk about RBC, whereas I'm referring to Hgb. My RBC is 2.57, so I'm thinking you actually mean Hgb.

When Hgb goes down, so does everything else, WBC included. I do worry about infections, as the cough I caught months ago is only just now disappearing. I travel quite a bit, which puts me more at risk, but like our esteemed Cap'n Chris said, you can't stop living & give in to this thing. He went doing what he wanted to do, & that's what I plan for me.

good to see everyone holding steady! I am still around. I think reality is setting in now. I am having a hard time but hanging on. I miss Dad so much. 3 weeks ago today we buried him. Still can't believe he is gone.

Your right Birdmom I was looking at reversed numbers. RBC was 2 HGB was7.5 and one they seem to look at a lot is the HCT which was 21.8. I guess chemo fog bit me down south and more than usual messed up the ole thinking progress LOL. We were fairly active over the weekend. Friday was simply driving in a long escort to bring the KIA/MIA Korean War vet home. Stood only a bit. Sat we were out and about and I had to stop fairly often to get rid of the woozies and catch up on the breathing thing LOL. Yesterday went back out for a bit. It's been three weeks since the last transfusion and I'm just being onery in waiting as long as I can without any big risk. Much as I would like to wait till week 5 I suspect by the end of this week or the beginning of next I'll be headed for some hi-test refills.

Hey posh great to hear from you again - it's been to long. Keep after it. Even time won't take away all the good that is there ya know.

Have a great week every one. Do something to make someone smile it is contagious you know.

Mike

Mike thanks. I went camping for a few days last week. I really needed to get away from the house.
I hope your counts go up without a transfusion! good to hear from you.

Hi everyone. I can finally say that the arnesp shots seem to be working. Last week my Hgb was up to 10.0, which is really good for me. One more shot next week and then it's wait and see what my blood does for three months. Then back to the oncologist for consultation. I am very hopeful.
God bless you all.
Jean

Well it looks like the ole pop up fever dude got me again. It had been around a 100 for few days then yesterday afternoon jumped up to 101.5. It had dropped a couple of degrees by 10 PM so doc started me on Cipro I keep at the house just for these things (bad experience at ER last year caused the doc to set this deal up). After another night of night sweats, it''s back down in the 98's this morning but will have to finish the prescription. I'm blessed to have a really good doc.

He heard me breating hard and told me to go ahead and get a transfusion so will get the labs today and the hi test tommorow. It's only been two weeks so I figure the last batch was watered down. LOL

Have some fun this week and blame it on me.

Mike