high white cell count

[DianeB]

It’s been a while since I’ve posted, but things are starting to change and I wonder what’s next. My dad is 71 and was diagnosed with raeb-1 4/07. Since then his platelets , whites and red all have been low, he did 3 rounds of Vidazia (think last one was July)and had to quit because of infections, he has been in and out of hospital countless times for infections, the last one was to get a port put in to appease the nurses who hate poking him so much for transfusions.He got a staph infection that time and was in hospital 2-weeks. He has been doing really well the month of Nov and Dec. He still gets platelets 3 times a week usually his numbers are in the teens on them (7 today)and gets reds every 2-3 weeks when his count is 8.5 but now his whites are 14, even after getting Vidazia last week. Their usually 1-2 and he gets a shot of neulasta to boost them. Doctor wanted to wait and see what the numbers do after the chemo but today said he would like to do a bmb next week. Can anyone tell me what happens if it goes into leukemia? What can I read up on to learn more. I know it won’t change anything but I can’t stand my dad’s attitude of waiting to see what the doctor says. He doesn’t like to hear about info that I find but I guess it’s my way of dealing with it.

Thanks
Diane

[jaxem]

Diane
your dad’s disease and age is very close to my wife’s. platelets always take the biggest beating when undergoing various chemos especially the demethylating drugs, vidaza & dacogen although 2-3 x/week is a lot. I wonder if doc is trying to keep a high profile with platelets (greater than 25K). neulasta will show a doubling of whites but only for a short time & then go way down. Neulasta will last fairly long compared to its sister neupogen. only difference between mds & aml is blast count where 20% is threshold. there is a wealth of info available by using your browser & Googling things like MDS, NMDP, american cancer society, aml, etc. use the SEARCH feature here at this Forum to learn what other patients are going through. good luck in your learning; keep in touch at this Forum & keep asking questions here and your dad’s hematologist.

[Russ P.]

Diane,
Just want to add some words of encouragement. I went from MDS to AML and can’t say it has really been much different. Prayers of family and friends have been so helpful and it has been a year since my leukemia dx. Wish I could say this or that treatment would be better but we all react so differently even when having the same diagnosis. Personally I have not have had a good experience with Neulasta or Aranesp but apparently it works for others. My only recommendation would be to get your Dad to a place like MD Anderson in Houston if at all possible. A prayer has been said for your father.
Russ

[DianeB]

Thank you both. Dad’s whites are down to 14 now. He is on anti-biotics for what we hope is just a cold. Not in the hospital because his whites are high. Someone told my sister not to really worry until they get over 25. He went out to eat with us last nite, sounded congested and his back is hurting him, but he looked pretty good. Said he was going to go home and get in hot tub, I’m not sure if he did. We live in N KY., and he says he is happy with his treatment and doesn’t want to travel. I’d like to get him to go to a center of excellence, but he just tells me it’s his disease, he’ll make decisions as long as he is able.

Thanks again.
Diane

[jaxem]

diane
you know, all through my wife’s sickness period (and it has been going on for 2 years now), I’ve heard the proverbial “It’s the sickness” which I’m sure comes from others such as medical professionals. make sure he doesn’t lose hope even though others have. yes, you must respect his choices for his own like and his dignity, but don’t let him give up. his “sickness” is manageable. and don’t get hung up on centers of excellence. how far from Cincinnati are you? there must be good institutions there. remember he’ll need at least 6 rounds of vidaza if it’s going to work.

[DianeB]

He’s right across the river from Cincinnati. He is happy with his doctor. I just wanted him to get a second opinion. The reason for that is because after being diagnosed and deciding what treatment to do the doctor said that with his numbers already being so low he wouldn’t have much “wiggle room”, and he also mention his oath or whateber it’s called is first do no harm. The following week he did a 360 after reading some reports, that his odds were no worse if they went with doing Vidaza chemo.He is a very likeable doctor as I pointed out to my dad, I really do like him, but shouldn’t he had done his homework before saying supportive care. I asked him (the doctor) point blank, what would you do if it were you, He replied supportive care. I don’t mean this as dad should be happy with supportive care, but that the doctor may not be the best in this area. Dad is happy with his care. Loves the nurses he sees almost everyday and they all enjoy him. I’m trying to focus on just enjoying him, and not lecturing him on how to take care of his self. It’s hard to do. He just started vidaza again last week. Back in summer 3 rounds was the most he got in before getting all kinds of infections, maybe with his whites being too high, it will take a while for the chemo to knock them down to where he starts with infections.

Thanks again.

Diane

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