Hopeful Response from Vidaza

[maueenh]

My father just got his CBC results two weeks after finishing the second round of Vidaza. Everything is up!!
Before Vidaza Today
WBC 2 6.1
RBC 3.2 4.02
HGB 10.9 13.3
HCT 31.3 39.9
PLT 67 250

I am cautiously optimistic. Given his 7 del I was concerned that it wasn’t going to work so I will keep my fingers crossed. I just want to pass
along the good news.

Maureen

[sdrake]

Maureen,

Great news! I hope things continue to improve for your dad.

Shari

[Jerry]

Maureen …

SUPER numbers …. with his Hgb that high he must want to go play golf or jog a bit … keep it up … good luck …

Jerry

[Suzanne]

What wonderful results! Like I have said before, these drugs don’t work for everyone-but some people have to be in the percentage that get good results! I am glad to see each and every case that gives us all some hope!

[nelson67]

That is really encouraging..I see that you are from Boston. Do you mind telling me where your Dad goes for treatment? My Dad- a youngish 78 is newly dx and we’re trying to sort out all the info. He’s seeing his MD next week. Right now he is seeing a MD in Providence but I want him to go to Dana Farber. He’s requiring weekly plt tx for counts around 9,000 and occasional procrit. His latest #’s..Thanks for any info..
WBC 5.9
HGB 11.4
HCT 34.9
PLT 9

[Neil]

Hi Nelson67,
Does your dad have any symptoms of low platelets— bruising, bleeding, petechiae?

[franm]

Hi:

Husband is starting his 3rd round of Vidaza and I think his counts have been going up. He will be having a Port put in tomorrow so he can get IV if needed through the Port instead of the veins.

As of the 24 of July his:

WBC 7.2
RBC 3.89
Hgb 12.9
HCT 37.5
RDW 15.5
EOS 0.6

Hoping he will not get an infection again.

He starts his Vidaza on the 3-4 of August for 7 days.

Thanks to everyone for your support and prayers.

Fran

[TEMBO]

Hi Fran;

Wow your husband’s counts sure look good to me after watching my husband’s. I have not followed your husbands CBC’s. Has he experienced a significate improvement since the vidaza treatments? Thank you for posting your experience.

Praise God,
Karen

[nelson67]

Hi Neil…my Dad has always bruised easily…he doesn’t seem to be worse-he says he isn’t anyways. No bleeding gums or anything you would expect with such low counts. He has been as low as 3,000. I’ve offered to donate my plts for him but they say it wouldn’t make a difference..I say lets just give it a try…I feel pretty helpless at this point,and he seems to be getting more depressed snd frustrated. Hopefully an opinion at Dana Farber will shed some better info.
As always..thanks for listening…

[Neil]

Hi Nelson67,
Have a couple thoughts for you to discuss with his docs.
It is imperative that he be treated by a hematologist that is experienced in treating MDS! He needs that experience since no two MDS patients are alike. We respond differently to the disease and to treatments. What works for one may or may not work for another.
Thrombocytopenia is very difficult to handle. It is very often pigeon holed and all patients are treated alike. This can be a mistake. Some docs automatically transfuse at 10,000. It may not be necessary since some of us can get by with low counts and live a fairly normal life.
The equipment used to measure platelets is accurate within 15000 on counts between 150000 and 500000. When they get lower the accuracy leaves much to be desired. It takes a series of CBCs to establish a pattern and an actual level you can count on. When I hit 3000 my doc has a slide made and he counts them manually. The manual count has resulted in a 10000 actual level!.
MAny of us have our cells cloning. We produce huge numbers of abnormal platelets (and RBC and WBC). They are identified, killed and flushed. BUT many of us have some normal cells that produce normal platelets (and RBC and WBC). Often there are enough normal platelets to handle clotting needs. Under such circumstances the need for plt transfusions (TX) is questionable. If there are no symptoms why TX?
The average body has about 5 liters of blood. If separated you would find about a shot glass full of white cells and a teaspoonful of platelets. Not the easiest quantity to measure. They live around 5 days or so before being replaced.
My “normal” plt level has setteled in at about 10000. It frequently goes to 8000, but considering the equipment tolerence is 8000 any different than 10000? I doubt it. I have been at this level for about 5 years. Was DX 3/97 and was at 32000. Slipped to 10000 over the next few years.
Have had 2 plt TX. Once when some dental surgery was necessary and once for a hernia repair (in 2004). The TX boosted my counts to the 53000 range and the surgeries went off fine.
SUre the lab techs go berzerk when they run a blood sample that provides a 10000 level, but they have become accustomed to it. They check the name before they order up platelets for a TX.
Also remember that a patient can have X number of plt TX before becoming refractory and the TX becomes useless. There are some steps that can be taken to extend the time they will remain effective.
If TX is really necessary, ALWAYS get plts that are irradiated and leukocyte filtered. This will keep antibodies from developing and make matching easier over time —among other reasons.
Try to get single donor platelets whenever possible. If multiple bags are given, try to have them come from the same donor. Patients respond better to single donors. They get higher counts and they last a bit longer. Platelets last around 5-6 days. We want to milk every extra day possible out of a TX.
Is a TX really necessary at 9000? Not sure, but would discuss it with a hematologist. Some of us do get by without them.
Another thought is the use of low doses of prednisone. It has helped a number of patients. Prednisone has some nasty side effects that should be considered, but in low doses they are less obvious. Prednisone may provide some boost in plts, but it is temporary. Does not last for extended periods.
By all means get him to Dana Farber. They have some outstanding docs thathave plenty of experience. If possible get him to see Dr Richard Stone.
There are a few other messages on platelets in the archives for this site. You can find them by clicking on search at the top of this page and typing in platelets or my name or member number.

[nelson67]

Neil…I can’t thank you enough for your reply. We are encouraged. I plan on contacting Dana Farber this week and getting my Dad there ASAP. He is pretty stubborn and in a bit of denial, I think. I’m now being quite a bit more matter of fact with him…wish me luck!!
Thanks again.

[maueenh]

Nelson67,

My dad is being treated at Dana Farber. I will email you the info.

Maureen

[LorettaV]

Positive Vidaza Response
Congratulations on your Dad’s Vidaza results. I began Vidaza a year ago. After 3 months of Vidaza, I became transfusion independent (I was being tx every 3 wks with red cells.) The first 3 months my counts fluctuated wkly. but have been good since then. My blasts decreased from 10%-16% in 6/05 to 6% blasts in Dec. 2005. In June, blasts were in normal range at 3%, and my onc. actually said, “remission.” I just finished my 10th session of Vidaza and am afraid to quit those shots! Any similar Vidaza news? How long have people stayed on Vidaza?

[eve]

hi loretta

my dad has had 28 treatments of vidaza – his first treatment was november 2003 – he is not in remission, but he is not tx dependent – his current dosage is lower than the original one and he only takes shots for 3 days every 4-5 weeks

good luck
eve

[maueenh]

Dad just started his third treatment of Vidaza this morning. His CBC was great just about everything is in the normal range. They also said that they will stop the weekly Procrit since his HGB was 15.2. On the way home my father asked me if this means he’s in remission and I don’t know the answer. Is remission based upon blast %s and does this mean you stop the Vidaza? The nurse administering the Vidaza said that he will continue Vidaza and after the 4th round they will probably do another bone marrow test.

Eve, that is wonderful news about your dad. I didn’t realize that Vidaza could work for such a long period of time. Has he been on the Procrit from the beginning of the Vidaza treatments?

Maureen

[Author]

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