MDS RAAEB-2 and nupogent

[alyasa]

Thank you all for the generosity of spirit in sharing information on this forum.

My father had a transfusion. He received a nupogen injection but after 3 days his WBC neutrophil counts did not go up. He has just started on Vidaza (10days on, 5 weeks off - on day 2 now) and the Haemotogist said they would not give Nupogen as it may increase the production of blasts.

The generous and encyclopaedic Birgita said in one post that there is no data to support this (I cannot seem to find the post again - will keep searching). Is there a reference?

What are others experiences?

RBC 10*12 L: 2.90
Haemocrit %: 29.00
White Blood Cell Cnt 10*9 L: 1.10
Neutrophils: 0.22
Lymphocytes: 0.62
Platelet 40.00

Much obliged

[DanL]

Here is a quick data sheet that shares some information. I want to say that some of the research many years ago made a correlation between blast count and neupogen, but may have not been taking into account issues like disease progression appropriately.

http://medsfacts.com/study-NEUPOGEN-...ST%20CELLS.php

The link above does not give a lot of context, but does show that the correlation between neupogen and blasts is nearly non-existent. Given modern drug reporting, if there is even a possibility, it is reported.

Another possible concern of the hematologist is the amount of marrow stress that shows up at any given time. I know that when I took Vidaza, the number of immature blood cells that showed up in my blood increased at times, but with anything MDS, it is hard to see what is the cause and what is the effect, and much of it changes over the course of a cycle of treatment.

I would continue to ask more questions and see if there is a need to supplement with antibiotics, antivirals, and/or antifungals in the presence of a low white blood count as an alternative as needed.

[alyasa]

I will keep track of this and check with the treating doc. No need to gainsay them, but also they may be happy to receive this evidence!
Much obliged

[Sally C]

Hi Alyasa,
I agree with what DanL told you. My husband's oncologist was totally against giving him Nupogen as she also believed that it could increase blasts in MDS patients.
We are also patients at the National Institutes of Health. They were in total disagreement with our oncologist regarding Nupogen. After they discussed it with her, she changed her mind based on their evidence and started giving him Nupogen. It never failed to bring up his whites and never increased his blasts.
I wish you and your Dad well.
God Bless,
Sally

[Birgitta-A]

Hi Alyasa,
As the hematologists at NIH that treated Sally's husband said Neupogen should not increase blast cells in MDS patients. Here is a reference from my Professor (Hellström Lindberg) expert in MDS: http://www.ncbi.nlm.nih.gov/pubmed/18559873

I have been taking 1 - 2 Neupogen injections during long periods without problems with the blast cells.
Kind regards
Birgitta-A

[alyasa]

@DanL, @SallC and @Birgitta-A: Thanks so much for the information. I will pass the references on to the treating doc and see what he says.

It is such a fine balance: taking an interest in a condition and trying "to be the doctor". But I suppose this is necessary as some posts have shown that doctors can miss some things sometimes.

And determining what the prognosis might be is also difficult, but we wait for the cytogenetics reports.

God bless. May health, healing and peace flow to you all.

[DanL]

Being actively involved in treatment options is normally appreciated on some level by the doctor. With a disease like MDS, I wouldn't be afraid to ask and suggest and understand why. Many doctors only see only a few MDS cases per year and just are not specialists in the disease, so when they see a case, their understanding and treatment options may not be fully up to date. That is why many of the members on the forum have received 2nd and even 3rd opinions not only on diagnosis, but on treatment options - this is especially relevant because MDS is not one disease but a bunch of similar diseases, meaning that many patients respond differently to proposed treatments. There is a whole lot of art with the science.

[Cheryl C]

I can only share that my haemo/onco says that even though my WCC is my biggest problem, because I am not completely free of blasts neupogen would be a very last resort because of the possibility of increased blasts.

[alyasa]

@ CherylC - thanks for your input - it is the same we received.

But @Birgitta provided info and Sally C has had the same experience at the NIH.

I will share with our Clinical Haematologist next week. And keep y'all posted.