May 15, 2008 at 2:09 pm #20706Jack_dup1Member
This is end of second week after first Dacogen cycle. Last Monday my plt were down from 71 to 16.5.
I had my first ever plt tx, then on Wed my plt were 17. What happened to those plt. I know they only live 72 hrs, but why bother to give them. I didn’t want them because I have no symptoms, even cut my finger slightly (by accident) and had just normal bleeding.
JackMay 15, 2008 at 3:26 pm #20707
Jack…This is my first time on the forum. It has been a tremendous help in dealing with Ralph’s MDS. I am not sure how to post the info that appears on the bottom of the posts..
Ralph is 82, Dx CMML 10/07. Started Dacogen 1/08 with his platelet counts at 11, HGB 8.4. He has received Aranesp* 4 times to date. RBT’s and platelets tx have been ongoing since his diagnosis. Ralph is now getting his 5th Dacogen treatment. His HBG is 11.4, and his platelets counts have been rising rapidly. They are now at 354. This is a concern. Is there a danger in too many platelets? The WBC is very low (1.3) He is mainly dealing with that to keep infection free. This MDS is not an easy disease to understand. I appreciate any input….
By the way, Ralph has not had a platelet tx for over 2 months and it’s been 6 wks since his last RBT. Looks like the Dacogen is working !!
Marla (Marcla)May 15, 2008 at 4:36 pm #20708Jack_dup1Member
Just click on my profile, then edit profile, then go to the signature box.
What were Ralphs counts when diagnosed with CMML, usually one of them is high. With my the platelets were low, whites high, reds normal.
How are his monocytes? I don’t know about high platelets, I would guess it would be a lot easier to lower then than increase them. 354 is still in the high normal range. 150-400 is normal. Unfortunately CMML is not regarded as MDS. It is a combo of MDS/MPD and in a class of its own, making it harder to treat. I am optimistic about the Dacogen, it has had some success treating CMML.
I’m happy to see he is having some improvement and things may be a little easier for him now.
Jack SMay 15, 2008 at 6:04 pm #20709
Thanks Jack for your prompt response. To answer your questions….Ralph’s counts on 10/24/07
were WBC 6.3,HGB 8.1,PLT 27 and monocytes 2.
His last CBC on Monday 5/12 showed WBC 1.3,
HGB 11.4, PLT 354, & MO# 13. Ralph’s doctor is encouraged with his progress.
I’m not sure on the monocytes..the doctor never really talks about them..
I can understand your reluctance to do transfusions for platelets. When we were in Fla. Ralph was hosptilized to get PLT & RBT tx.
They kept him overnite to do a second platelet tx. I talked them out of this because his count was 19 & they wanted it to be above 20. Ironically, he has not had a PLT tx since then….
I’m learning more everyday, but this whole CMML takes a lot of research.
Hope you see good results with the Dacogen..
MarlaMay 16, 2008 at 6:21 pm #20710
Jack I was looking back on some posts about platelets and noticed one from Neil on 10/21/07 in response to a query from Bety.
This really explained a lot about platelets to me and I thought you might want to look at it.
I’m still researching for anything that will enlighten me on Ralph’s situation… It seems when one count gets OK..another one goes either up or down…..
This forum has been a blessing to me… I admire the fight and perserverance of the individuals and families dealing with this awful disease…. Their input with questions and answers is great.
What a way to vent frustrations…. Marla
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