Two questions for all

[Christina]

Hi Everyone,
It’s been awhile since I have posted. My dad Lou is awaiting a donor for a possilbe stem cell transplant. In the mean time I have a couple of questions:
1) How many of you have blasts in the marrow? My dad has 9%, I was wondering what the average rate of increase was.
2) Has anyone heard that Nuepogen or Newlasta could possibly not only stimulate the white blood cells but the bad cells as well? I read it some where and am trying to verify it. I have asked several doctors, they claim they have heard the theory but that is has not been proven yet.
Thanks for your input.

[patti]

Christina,

Yes, I have read that nuepogen and aranesp can stimulate bad cells as well as good. I think with that information you have to determine how much good the shots are doing and if that outweighs the possibility of bad cell growth. For us, we knew the aranesp wasn’t working so we just stopped it completely. However, the neupogen is working on keeping mom’s white cells at least a little bit in existance so we decided that risk was worth taking and kept her on it. The risk of infection with her white cells so low is so high that any bad cell growth from it isn’t as big a deal. You have to weigh what the shots are doing for your dad and go from there.

Patti

[Suzanne]

Christina, I don’t think there is any average rate of increase. Blasts numbers can plateau and they can also change a lot very quickly and unpredictably. Everyone with RAEB or AML has blasts in their marrow and sometimes out in their blood as well. In some places you see that up to 5% of immature cells in the marrow can be normal -immature blasts that will mature. When they look at the slides they can tell whether they are looking at healthy cells or MDS or Leukemia cells. Last I heard 20% blasts in the marrow is now considered transformed to AML. I went to one presentation that said that these markers of the diference between MDS and AML are really a grey area-It more important where the disease causes serious problems for an individual.

[eve]

hi christina

this is what is so damn frustrating about this disease – there is not one answer to a question

my dad was on procrit before he was offically diagnosed with mds – it didn’t work – doctor stop treatments because he felt there could be adverse effects

now that my dad is on vidaza he is on procrit again and the doctor seems to feel that in conjuction with the vidaza it is helping his blood counts – go figure

eve

[patti]

Eve,

My MIL has greater then 30% blasts in her marrow and she’s considered MDS. Her doctor said they wouldn’t consider her AML unless her white count shot sky high all of a sudden (only 1.4 = 1400, right now). So, like you said, go figure. None of it makes any sense does it?

Patti

[Sandy M]

Patti,
we were told that Joe, my fiance, was m.d.s RAEB at 14 % when he was dx. then within a year and a half he went to over 90 % blasts, he transfered into A.M.L and his WHITE count did NOT go up at all, it steadily dropped to 0.5 and stayed that way from dx. on, and we were also told that neuprogen would increase the bad cells as well as the good ones, but it didn’t change any of his counts in any direction.

[patti]

Sandy,

That’s interesting. I do not like mom’s doctor and honestly don’t think he has a clue when it comes to MDS. It looks like your fiance went about two years with his MDS? We feel grateful to have had a year when we originally thought it was only going to be 4-6 months. Mom is just now starting to have tx every few weeks. I’m assuming that means her disease is progressing. Who knows though? I hate this thing. Day to day it’s something new. Never stable.

patti

[John in GR]

Welcome to the world of MDS. If there were a lights out cure we would all be flocking to it. Instead the doctors, the nutritionists, the alternative practitioners and in the end we, the patients all take a shot at our best guess. There is a risk if we do something and a risk if we do nothing. If I could guarantee that what I am doing is a universal lights out cure I would do all I could to cram it down the throats of everyone. Since I can’t, I find it impossible to be overly critical of other approaches or even no approach. That’s not to diminish the fact that I’m very comfortable w the path I have chosen.

When it comes to MDS, however, we’re all a bunch of pilgrims doing the best we can; and, for most of us, hoping that God will bless our efforts.

John

[Suzanne]

My blasts also went from about 9% to 19% in less then a year then jumped to 75% and AML. My white count was the first effected by MDS and from the beginning went down. By the time I had AML I believe all my counts were down but white was the lowest. Others I have know have had high white.

[Terri]

Bob started around 9 when first diagosed after a few trips in the hospital battling a severe bronchial infection. Dr got him on the Vidaza before approved compassionate basis. His WBC were increasing (that is always our sign with him) They were close to 20. After six rounds of the vidaza at that time counts got to normal (except the plts never get to normal and hgb hovers close to 12 but won’t hit 12)
After 7 months doctor looked at the blood smears on the slides at one of our visits and did not like what he saw and did another BMB – (at this time bobs Whites started creeping up again)
Blast were now at 14%. So now he has been back on the Vidaza again since Last November. His Whites are normal, Reds norm and the hgb is holding its own, Just those darn plts. Dr feels he is maintaining and is not seeing anything on the slides to warrant another bmb yet. The vidaza has been spread out a little further now every six weeks rather then every 4. I know I have repeated this all before, But for those that have not been on the boards for a while thought It worth repeating.
We also have bob on a Lot of Vitamins and supplements.

[Christina]

Hi,

I just returned from vacation and read all of your replies.

First I want to say “Thank you” for responding and sharing information. Although this is all very frustrating it helps to hear from all of you.

I do agree that it is better to take the neupogen rather than develop an infection but what upsets me is when the doctors claim there is no proof of the neupogen raising the count of blasts. Sometimes I feel like the doctors are withholding info. or are afraid to speak their minds. I get so many wishy washy answers from them. The doctors told us my father has 6 – 12 mos. until it progresses to the last stage.

Suzanne, I have been following you and you seemed to have done great on Zarnestra. Do you know if it is a closed trail?

To those of you who have heard that Neupogen will increase the blasts, where did you get that information? I am looking for it in writing or from a Doctor and can’t.

Once again, thanks to all who reply!!
Christina

[Suzanne]

Christina, the Zarnestra trial I did is still open. However it is for patients recently in remission aftter chemo therapy. Zarnestra is also used for older patients or those they feel cannot withstand the “heavy chemo”. That should now be going into phase 3 trials because the last I heard, FDA was ruling not to approve it on a fast track basis that would skip doing the phase 3 level trials. I believe Dr. Karp at Johns Hopkins should be able to give the latest on that as I think she is coordinator for the Zarnestra trials-even those in other locations.
My doctors also said they did know of the concern that that any of the growth factor drugs to encourage white counts would also encourage the blasts to be produced. They also said they had not seen proof of that. But that discussion was probably about 2 years ago. I did take GM-CSF as part of a trial before I progressed to AML and I tried one shot of either neupogen or Newlasta, at my request, but it was so expensive and any effects would be so short lived that we did not pursue that. I did take a preventative antibiotic whan my white count was low-probably norfloxin. I was lucky in that I never had any infections until I was in the hospital for the 1st round of chemo.

Some Doc’s are just not good communicators, some don’t have much knowledge of MDS and AML, and those that do have knowledge can sound “wishy washy” because they don’t know the answers. Even those of us in the same classification have diseases that develop differently and react to treatment differently so they just can’t predict what will happen or what will work except with the statistics they have gathered. There has been a tremendous amount of progress in the almost 3 years I have been dealing with the disease but there still is a long way to go before they will have the answers-both in understanding the diseases and in treatment.

My doc’s took slow steps until I progressd to AML-always weighing all the alternatives with me.
With the AML there were not but 2 alternatives-chemo or supportive care. by that time they knew me and my body strength pretty well. But even now, after a year and almost 9 months of remission we don’t know what my monthly Cma on Friday will show or the BMB i have every three months until i am 1 year out from the end of taking Zarnestra-end of March 06!

[patti]

Christina,

I saw the neupogen thing on the web somewhere. I’m kicking myself for not printing it because mom’s doctor doesn’t believe us either. You know what, I wouldn’t worry if the doctor believes you or not. Just tell him what you want to do and tell him you’ll change doctors if he won’t let you. I don’t think you’ll find a doctor that will admit any of these bone marrow drugs will do harm. It’s the big pharmaceutical thing. There’s money to be had and no one is going to tell the negative. Just look at all of the drugs they’ve had to pull off the market in the past few years. I will do a search again for the neupogen/blasts info and see if I can find it and get it posted here. I would just encourage you to do your research and then tell them what you want. Our doctor jumped as soon I said I would find a doctor who would do what I wanted.

Good day,

Patti

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