Transfusions

[Kathryn]

Hi everyone,

my father’s platelet count was at 8,000 on Friday, had a transfusion that day, on Monday they were at 19,000. On Tuesday he rec’d. 2 units of blood and started his second round of Vidaza (a week early). On Thursday his platelet count was down to 12,000.

Can anyone give me an idea of what this might mean? Is the Vidaza probably not working? Did they give him the units of blood, after which he felt a lot better, because he was probably anemic as well?

Just from what I have read, this really isn’t a good sign. I am sorry to ask so many questions… some are probably repetitive, but I have no where else to turn for answers. I am an optimist, but also a realist, so please let me know what you think… I really would appreciate it.

Kathryn

[Suzanne]

Kathryn, They gave him the units of blood(packed red cells) to increase his red cells. Low red cells are what make people feel tired so I am sure he felt better. Platelets are necessary for blood clotting. Different people tolerate different counts without having trouble with bruising, bleeding gums, etc. and being in danger of bleeding somewhere. Many doctores use below 10,000 as a marker to transfuse.After a while your body can reject platelets and tx’s stop working so they try to reserve tx’s of platelets to when they are really necessary. Seems to me platelets have a fairly short lifespan. Neil or somebody will know more about that. chemo’s that kill the bad cells often effect platelets so it is not uncommon to get a tx of them when you are having some types of treatment. I don’t know if vidaza typically causes a problem there but I believe it does lower counts and they hopefully improve between treatments. People with experience with that drug can tell you more about that.

[Terri]

Kathryn, Bob is ready to start his six round for this go of the Vidaza. He is in what the doctors are calling a mtc stage. Primary reason he is On vidaza is for the blast and the High WBC. The Vidaza seems to help BOb with that his whites are now normal, he is producing Neutrophils so the doctor believes his blast are doing down. Not seeing much abnormalties on the Blood smears that they do. I know this is not answering your questions about plts, Bobs will do down a little but mainly they have been hanging anywhere from 50,000 up to 70,000. Naturally the higher counts are when he is not getting the Vidaza. The drug works differently for everyone. He takes a lot of Supplements too and Nutritionist recommended for all of his counts.

[Kathryn]

Hey Suzanne & Terri,

thanks so much for your replies. You guys are always so good.

His platelet count “bottoms out” at 10,000. If it continues to be a problem will they continue to do the transfusions as needed? I know at a certain point the body won’t make them and becomes dependent…..

Well, last night my questions were answered and my suspicions confirmed. My dad has progressed to the acute phase. The doc. told my step. a few days ago and she just told my sis. last night. My heart is so very heavy right now…. The doc. told her also that if the Vidaza doesn’t work he will have to go into the hosp. for chemo… but that he probably wouldn’t survive it. I wonder how much time he will have otherwise…. I just can’t imagine him not being around anymore……

Thank you so much for your support though this.

Kathryn

[Suzanne]

Kathryn, I am so sorry that your Dad has had so many problems. Let’s hope at this point that the vidaza works. It might be one of those drugs that you need to take more then once before you see results.If it doesn’t work have your Dr. check on zarnestra. It is being voted on for approval for chemo for those who might not survive the reg. chemo within the month of May I believe. When I talked with Dr karp who heads the research on it and the study nurse on Friday the also mentioned that they have opened a new study combining it with something-VP16 I believe!(one of the 3 drugs I took as induction chemo) They said the Zarnestra dose level for chemo is now close to the dose I took as a trial to see if it would work as a maintenance drug for patients in remission. I took it for a year with almost no side effects. There was a lot about Zarnestra at the Hemotology conference in Calif a few months ago.
If you want more information email the study nurse.
Jackie Greer
jgreer6@jhmi.edu

[Kathryn]

Thanks for the info. Suzanne. He is going to the doc. tomorrow and I will pass it along to them.

I hope that you are doing well and are having a nice Sunday eve..

Kat.

[Suzanne]

Yes, I am doing well. last Friday a few more of the “little things that don’t matter” on the CBC fell into the “normal range. all major things are normal.I don’t have to be rechecked for a whole month! I am planting flowers,taking a photography course, sleeping well and enjoying each day.

[sarah]

Kathryn, will keep your dad in my thoughts and prayers. You hang in there.
Sarah

[Terri]

Kathryn, So sorry to read the latest on your Dad, I do hope the Vidaza will help slow the progress. My thoughts and prayers always

[Kathryn]

Hey everyone! Well, I am cautiously optimistic, but my dad’s white count has gone down some more from 66,000 to 33,000. His platelets also are down to 9,000, but the doc. wanted to wait on the tx.. He is going back tomorrow for another check. I know I should feel good about the white count going down, but for some reason it worries me. I still have so many questions, especially since the doc. said that he had moved into the acute phase and his platelet count is continuously so low. What exactly does that mean for my dad? They dont’ seem to want to know, but I certainly do! After his visit tomorrow, I may need to call the doctor’s nurse confidentially…… His last shot of Vidaza was on Monday, so only time will tell.

Suzanne-gardening & photography! How wonderful! Two of my favorite acivities!! Good for the soul!

Thank you all for your thoughts & prayers; mine of with you & yours as well.

Kathryn

[PaigeS]

That’s great news about his counts.

My dad didn’t respond to Vidaza, but the doctor did say that it is very normal for your platelets to go way down before they will come up when taking the shots.

Hang in there!

[Suzanne]

usually I think CMML patients have a high white cell problem . If that was the case you do want them down so there is room in the marrow to produce reds and platelets. You do need white cells but you want healthy ones. So hang in there and take one step at a time. Seems to me that there is a possibility that this is moving in the right direction. If you have questions, see if you can make a call to the Dr. I know mine said my children could call with questions any time.

[mommachkate]

Kathryn,
When George was on Vidaza, the plt always went low by the end of the round. But about 8-10 days later they went back up. George wbc was always a little higher than normal, but went really high only when he had an infection. Your father may still have an infection. I hope he is getting better, and the Vidaza treatment will work for him. Best wishes,Kate
Hi Suzanne,
I am so happy to read about the good news. Enjoy your gardening and fotography. I also love gardening, and start working in my garden , it is helping to ease my pain. Thinking of all my friends of the forum a lot. Kate

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