Can vidaza cause big drops in counts?

[run4peach1]

My father (78) is on his fourth round of vidaza. Was doing well with it, but not this time. It's now 14 days from the first of five vidaza treatments, and he has already needed a RBC transfusion, and his platlets today are at 16000.

Two weeks ago the doc looked at his marrow and said it was improving, and decided to try the fourth round of vidaza. I've read that days 10-14 after the first treatment can be the worst. Any truth to that? This is the first time he has received 4 consecutive 5 day treatments (you know, once a month).

The nurse has blamed it on the vidaza. My Dad is really down in the dumps. Can the vidaza effect his counts that much for so long?

My Thoughts and Prayers are with everyone battling this disease.........and any illness for that matter.

[edo288]

Hi run4peach1:

I am taking Vidaza. I'm starting my second 28-day cycle next monday. Just got a two-unit transfusion today (the beginning of the 4th week). The staff at oncology say this is normal, i.e., a significant drop in blood counts, for the typically three to six 28-day cycles. Here are my current stats: hemoglobin down from 9.3 to 8.5g/dL; Absolute Neutrophil Count (ANC) down from 800 to 500. After three to six cycles, some patients are transfusion free.

See my site at Vidaza Chronicles

[Vera W]

My counts were really low the first couple of months. If i was below 1000ANC he would wait till my counts came up. He lowered my dose for a couple of months and eventually i was back to my original dose. Then my counts were sletter and my 13% blasts were undetected!My doc said the counts were suppose to go down and that showed that the drug was working. He said it was a war between the good and bad cells so after the good cell army got strong it would defeat the bad and that is exactly what happened!

[Birgitta-A]

Hi Edo288,
If my Neutrophils were as low as 500 I should ask for Neupogen or a similar drug - the risk for infection is very high with such a low Neutrophil count .
Kind regards
Birgitta-A
Neutopenic fever Sept 2007 after three infections - since then 2 injections Neupogen/week with good result

[jerryo]

Originally Posted by edo288

Hi run4peach1:

I am taking Vidaza. I'm starting my second 28-day cycle next monday. Just got a two-unit transfusion today (the beginning of the 4th week). The staff at oncology say this is normal, i.e., a significant drop in blood counts, for the typically three to six 28-day cycles. Here are my current stats: hemoglobin down from 9.3 to 8.5g/dL; Absolute Neutrophil Count (ANC) down from 800 to 500. After three to six cycles, some patients are transfusion free.

See my site at Vidaza Chronicles

HELLO,
I FINISHED THE FIRST SEVEN DAY CYCLE OF VIDASA ON OCT. 27 WITH LITTLE OR NO SIDE AFFECTS.

I RECEIVED AN INJECTION OF NEULASTA (SUPPOSED TO IMROVE MY WHITE BLOOD COUNT) AT THE CONLUSION OF THE VIDASA TREATMENTS. (MY WBC JUMPED FROM AN AVERAGE OF 2.2 TO 15.2 YESTERDAY.) IT COULD CAUSE SOME BONE PAIN BUT DON'T THINK IT DID ON ME. HOWEVER, MY LOWER LEG MUSCLES BEGAN TO BE SORE TO THE POINT I HAD A HARD TIME BEING COMFORTABLE, AND I HAD A HARD TIME SLEEPING MORE THAN THREE HOURS AT A TIME AND THIS CONTINUES UNTIL TODAY BUT WITH SOME HOPE FOR RELIEF. I RECEIVED A NEURONTIN PRESCRIPTION YESTERDAY AND THINK THIS WILL PROVIDE SOME RELIEF. THE BAD NEWS IT MAKE YOU DROSSY BUT THAT IS BETTER THAN THE LEG PAIN. I HAVE TAKEN TWO PILLS SO IT IS TOO SOON TO TELL IF THIS IS A GOOD THING.

I WAS DIAGNOSED WITH A MILD CASE OF PERIPHERAL NEUROPATHY IN 2000 AND WE ARE WONDERING IF THE VIDAZA SOME HOW IS EFFECTING THE NEUROPATHY. WE WILL SEE HOW THE NEURONTIN DOES IN PROVIDING SOME RELIEF.
MY RBC AVERAGES AROUND 3.7 BUT SLIPPED A LITTLE YESTERDAY DOWN TO 3.6. WHAT CAUSED MY DOC TO BE CONCERNED WAS MY PLATELETS DROPPED FROM 67K FOR A WHILE TO 44K LAST WEEK AND DOWN TO 11K YESTERDAY. I GO IN FOR MY FIRST PLATELET TRANSFUSION TODAY. I VISIT MY DOC AGAIN ON THURSDAY TO REVIEW MY BLOOD COUNTS.

I HAVE ALSO BEEN RECEIVING AN ARANEST SHOT EACH WEEK HOPING TO BUILD UP MY RED BLOOD CELL COUNT. SO FAR IT IS STAYING ABOUT THE SAME.

ANOTHER RESULT OF ALL THIS IS I HAVE SORES ON MY TONGUE. MY DOC SAYS THIS IS A RESULT OF MY LOW RCB. I GARGLE FREQUENTLY WITH SALT AND BAKING SODA.

THAT IS A BRIEF DESCRIPTION OF MY CONDITION. IT PROBABLY DOESN'T TRACK WITH ANYONE ELSE BUT IT SHOWS HOW UNIQUE WE ALL ARE.

[edo288]

Birgitta:

Thanks for the tip. I got a CBC at the end of yesterday's transfusion. I'll check on it by phone today and if my ANC is below 500, I'll call the oncologist.

I start my second cycle of Vidaza on Monday, November 16th. I'll get a CBC before starting. I'll watch the ANC carefully. What is the trigger-point for ANC that indicates the need for Neupogen?

Jerry:

Sounds like you're struggling with some uncomfortable side-affects. Hope the situation changes soon for you.

Kindest regards,

[Birgitta-A]

Hi edo288,
There are many sites about neutropenia. Here is one: http://www.lrf.org.uk/media/images/W...iet07_5348.pdf

As you can see they think you ought to be careful if you have a neutrophil count of 0.5-2.0 x 109/litre (or 500-2000 as you call it) and very careful with a neutrophil count below 0.5 x 109/litre.

If you get an infection all counts will decrease.
Kind regards
Birgitta-A

[run4peach1]

Thanks for the insight........

My Dad is feeling a tad bit better. Thing is his upper back is bothering him. I think I've read that the neulasta can cause bone pain? He always gets a shot the Monday after his last Friday Vidaza treatment.

I am a bit concerned that he is only to get his blood checked once a week. I guess they are thinking that his weakness is temporary and should bounce back. I sure hope so. I imagine this may be his last vidaza session (his 4th) for a while. It's kind of been the norm........they give it to him until he has a problem tolerating it, then they tend to keep him off of it for a while. I hope, in time, his counts come up.

Anyone know how long it takes procrit to work? My Dad got a shot of what they called "something like procrit but it works for a longer period of time" (I'm thinking EPO). I just wonder if this too can account for part of how he feels. I guess the plan is "counts go down at first, then back up". I am Praying this is what happens.

I'm also Praying for all that are fighting this, and any illness. Thanks for the support.

[run4peach1]

A week after my Dad got a transfusion (2 units, which brought his HBG up to 9.2) it's down to 8.5, and they are giving him two units tomorrow. I thought this was a little high to get a transfusion, but he isn't feeling the best.

Now, for what I think is some good news.........his platlets went from 16000 to 540000 in four days. I know that is high, but his original diagnosis was MPD, which changed to MDS about a year or so ago. I am hoping that the big swing in platelets will be followed by a boost in hemoglobin as well, as I think that is how it worked for him before. He has to wait for the blood until tomorrow because it takes a long time to match the antibodies. Apparently the more transfusions you get, the more you build up antibodies, and the longer it takes to get an exact match. I'm glad they are so careful.

Anyone have any insight on this? I don't think I've come across anyone on here that has such swings in platlets. I am hoping this starts a trend and means the supressive nature of the vidaza is wearing off and it will start working and swing the counts up.

Thanks again for allowing me to ask questions on this wonderful forum. My Prayers are with you all.

[Birgitta-A]

Hi run4peach1,
Yes, Neulasta can cause bone pain – I thought pain in the long bones was more common but obviously pain in the back is common too: http://www.communityoncology.net/jou...es/0407455.pdf

As far as I understand most patients respond to Procrit within 4 weeks – if there isn’t any response within 8 weeks the drug should be stopped. As you perhaps have read it is important that you know your father’s EPO value initially - if it was high (more than 500) few patients respond. My EPO was a little more than 800 initially so I never got Procrit or similar drugs because my kidneys made enough EPO without effect on the bone marrow.

The swing in platelets is really not often seen in MDS patients and as you think it is probably caused by your father’s MPD – there are mixed cases. Good that you don't have to worry about bleedings .

I got a dx of the MPD myelofibrosis during 15 months but probably had MDS from dx. I have so few blood cells in my bone marrow with severe fibrosis that it is difficult to see if the cells are dysplastic. I have read about MDS patients with high platelets before and they are not treated in some special way.
Kind regards
Birgitta-A

[run4peach1]

for the article. His back is still hurting, so I hope this is what is causing it. It's been 16 days since his last vidaza treatment (4th cycle) and he is still not doing well. Two transfusions in 8 days, platelets are good but hemoglobin must still be low. How long does it take for the two units to make him feel better? It doesn't seem to be taking hold yet.

Is it possible that the vidaza can make him feel so poorly so long? Then again, it hasn't been three weeks yet.

[Birgitta-A]

Hi run4peach1,
As far as I understand different patients feel the effect of transfusions differently - I can't feel the difference between HGB 8.0 and 11.5 (after 2 units). The nurses have told me that nobody feels the difference the day they get the transfusion but most patients do feel better the day after transfusion.

Yes, Vidaza can give adverse reactions during the whole treatment. Let us hope that your father will respond with increased HGB after his 4th cycle with Vidaza!
Kind regards
Birgitta-A

[run4peach1]

we are Praying for that.........seems to be a bit better today....

Thanks again...........my Prayers are with you all........

[run4peach1]

with that severe back pain, no energy, he just doesn't look good. They say his blood is ok, that's not what is causing the back pain. Looking into his lungs, some sort of a clot may be causing the pain. Not the best of days, Praying for a better tomorrow. As always, Praying for you all as well.

[Birgitta-A]

Dear run4peach1,
If it is a clot in the lungs we will hope it will dissolve - several of my relatives (without MDS but with other diseases) have overcome clots in the lungs.
Kind regards
Birgitta-A

[run4peach1]

for the third time. This time it's in both lungs. He does look a bit better today. He's on pain killers and of course an antibiotic. I hope it works. I guess he is just much more susceptible to pneumonia that most people. I know it's serious, but at least they have a diagnosis and can treat something.

Keeping you all in my Prayers....

[Birgitta-A]

Hi run4peach1,
As far as I understand most MDS patients are susceptible to infctions - I am so afraid of infections that I live like I have neutropenia. My doctor thinks it decreases my quality of life but I prefer to be very careful and avoid infections. You know all counts can decrease when we have an infection.

We hope that your father will get effective treatment for the pneumonia! He did get Neulasta and that should have given him enough white blood cells to fight infections but there are infections for example virus infections that the white blood cells really can't fight so effectively.
Kind regards
Birgitta-A
Neupogen 2 injections/week since 3 infections July-Sept 2007

[run4peach1]

depressed, and the pain killers he is on makes him drowsy. It's tough to see, but we're Praying he fights this thing off.

Thanks for the support. In my Prayers always.

[run4peach1]

My Dad has been in a transitional care unit for about 12 days after 10 days in the hospital. He has been fighting off the pneumonia, but this one was a bad one. Double pneumonia. Third time he had pneumonia in 7 months. His lungs are improving, but it's a slow process. He has lost about 30 pounds. He is starting to do better. A week ago, his hemoglobin was 10.9. It was going up on it's own, so we were happy. Five days later, it was down to 8.5. Today it was 8.1, platelets down to 22. He is probably getting about done with two units and a bag of platelets as I type this.

Does anyone know if they can do anything for his RBC now, is his weakened state? Honestly, he was doing better at 8.5 than he was at 10.9, but that must have had something to do with the pneumonia. I was hoping the 8.5 was in error, because I've been with him when he was that low, and he didn't seem like he was 8.5. The 8.1 today kind of confirms it.

Does anyone know if you can get procrit while he is weak like this? I know vidaza is out of the question. I'm Praying that his counts go up on their own. How about thalidomide? Is this something that could be possible?

Thanks again for the support. I am Praying for you all.

[Birgitta-A]

Hi run4peach1,
Good that your father is recovering from the pneumonia !

You know the hemoglobin can have increased to 10.9 one week ago because your father had not got enough to drink and had fever. When we are "dry" we always get a false high haemoglobin value.

When I do blood work I try to drink the same volume of tea etcetera at the same time in the morning and then I go to the hospital at the same time of the day because I want to be able to compare all values.

I don't think Procrit will make your father weaker.

Thalidomide gives adverse reactions in many patients and I can’t find any new studies on Thalidomide. Here is an older study:
http://www.nature.com/leu/journal/v1.../2402330a.html

Second generation immune modulating drugs like Revlimid and Pomalidomide (not yet approved) give less adverse effects but Revlimid gives best effect in patients with isolated 5q- chromosome aberration.

Vidaza is still considered the best drug for MDS patients.

My transfusion interval increased when I started with Desferal for iron overload during about six months and the same thing happened when I started with Exjade for iron overload Sept 2009. This is not so common and not really a treatment method but a positive effect of the drugs.
Kind regards
Birgitta-A

[run4peach1]

Yesterday his platelets were 72 up from 22 (had to make some on his own, he only got one bag) HBG was 10.5, up from 8.1. Not bad from 2 bags of RBC. Now, if they can only stay that way for a while. I hope the 4 Vidaza treatments can kick in and start working. It was almost three weeks since his last transfusion, so that time span did increase.

No one has mentioned his iron level, so I guess that is ok for now. I know he had one of two shots of procrit, but I don't think it was enough to see if it can really work for him.

I really want to express me appreciation for this website and forum. I've done my share of "googling" and visiting other websites, but none has educated me as well as this one. It's given me hope, and taught me what things I can possibly expect. Again, I thank you.

As always, you are all in my Prayers.