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jeremy88
@jeremy88

Posts: 6
Joined: Nov 15, 2018

MDS and Neupogen

Posted by @jeremy88, Dec 18, 2018

After an introductory stay in hospital about a year ago I have self injected expensive stuff, neupogen. One jab a week most of the time. $100 a poke. Also more careful about my personal hygiene. I have been okay since.

REPLY

Hello @jeremy88. I would like to invite @chattykathy to this discussion as she has used neupogen injections in the past as well, although for a different reason, but she may be able to share her experience with the injections. I would also like to invite @jaylevel1, @reibur1951, @evamarie1, and @ikampel2 to this discussion as they have all discussed having MDS or caring for someone with MDS on Connect.

@jeremy88, if you don't mind sharing, were the neupogen injections prescribed and are they meant as a treatment, or to get your ready for treatment? Am I correct in my understanding that neupogen (filgrastim) injections are meant to stimulate bone marrow and boost white blood cell production?

@JustinMcClanahan I must have prescriptions in both South Africa and the US, so visits to doctors are required to buy Neupogen. In my case my overall white blood cell level is normal, but my Absolute Neutrophil Count level was very low. Neupo fixes that. Neupogen requires refrigeration, and cannot be stored for a long time. So I must think ahead when I travel.

I was diagnosed with MDs in June 2016. My one cytopenia is neutropenia. Local hematologist prescribed Neupogen to boost wbc and anc. It works for me short term about 2 days and then counts return to very low levels. I have not had neupogen injection in about 2 yrs. counts remain low but no infections (knock on wood). My understanding is that because neupogen doesn’t have any overall survival benefit and has high cost it is not generally used as a prophylactic. I believe there is also concern that it may stimulate AML. My mds expert dr. tells me not to be concerned with low counts as I do not have infections. She says the neutrophils while not in the bloodstream are making their way to tissues. I’ve been on watch and wait since June 2016 with no treatments.

My wife has been getting Procrit injections since Sept 2013, twice switch to Aranesp briefly, but just recently Neupogen because her WBC went down but it supposedly has a synergistic affect to raise her HGB. Her MDS was caused by chemo for CLL. Shammer, I'm curious to know how you know it worked for about 2 days? Follow-up CBC? May stimulate AML???

@bradmm

My wife has been getting Procrit injections since Sept 2013, twice switch to Aranesp briefly, but just recently Neupogen because her WBC went down but it supposedly has a synergistic affect to raise her HGB. Her MDS was caused by chemo for CLL. Shammer, I'm curious to know how you know it worked for about 2 days? Follow-up CBC? May stimulate AML???

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My original MDS diagnosis indicated a higher level of risk. My local hematologist suggested treatment with Vidazza. Before treatment she used neupogen to raise wbc. Multiple cbc’s indicated that neupogen worked but the effect disappeared after 2 days with wbc falling back to low levels. After visiting an mds expert at a center of excellence my risk level of adjusted downward to low risk and all treatment halted. I have not suffered any significant infections although my wbc hovers around 1.5 and anc is nearly always less than 500. I’ve asked my drs. why not neupogen on regular basis in my situation and they indicated the no indication of overall survival benefit, high cost and possibility of enlarged spleen/ evidence that long term use of neupogen in my situation could promote AML. I’ve been living life for 3 years post MDS diagnosis without issue. I have monthly cbc’s and annual bone marrow biopsies which so far indicate no progression of my disease.

@shammer

My original MDS diagnosis indicated a higher level of risk. My local hematologist suggested treatment with Vidazza. Before treatment she used neupogen to raise wbc. Multiple cbc’s indicated that neupogen worked but the effect disappeared after 2 days with wbc falling back to low levels. After visiting an mds expert at a center of excellence my risk level of adjusted downward to low risk and all treatment halted. I have not suffered any significant infections although my wbc hovers around 1.5 and anc is nearly always less than 500. I’ve asked my drs. why not neupogen on regular basis in my situation and they indicated the no indication of overall survival benefit, high cost and possibility of enlarged spleen/ evidence that long term use of neupogen in my situation could promote AML. I’ve been living life for 3 years post MDS diagnosis without issue. I have monthly cbc’s and annual bone marrow biopsies which so far indicate no progression of my disease.

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We visited a specialist in San Antonio, Tx, and he raised her risk from low to moderate. Said it was based on a new formula. That set her back emotionally. We changed Onc's again because that one didn't seem to listen very well. He's a researcher and we were afraid that he was more interested in data than patients. That may have been unfair after just two visits but we now have one that's in the same city as where we live (short drive) and seems to listen and have compassion. Mind if I ask where your "mds expert at a center of excellence" was located?

@bradmm

We visited a specialist in San Antonio, Tx, and he raised her risk from low to moderate. Said it was based on a new formula. That set her back emotionally. We changed Onc's again because that one didn't seem to listen very well. He's a researcher and we were afraid that he was more interested in data than patients. That may have been unfair after just two visits but we now have one that's in the same city as where we live (short drive) and seems to listen and have compassion. Mind if I ask where your "mds expert at a center of excellence" was located?

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I live in Upstate NY and there is no MDS expert in my area. I drive 2.5hrs to New York City to see my MDS expert every 6 months. My next bone marrow biopsy is at my April 2019 visit. I am monitored monthly by a local hematologist.

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