Epo and GCSF experience?

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Nick
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Joined: 13 Apr 2011 17:01
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Epo and GCSF experience?

Post by Nick » 13 Apr 2011 20:46

Hello all,

My name's Nick and I'm a 48 y/o male living in East Sussex. I was diagnosed with MDS/RA/RCMD in July 2008 after getting a blood test at my wife's insistence as I was bruising like a peach, getting nose bleeds and felt knackered all the time. Being a typical bloke I put off three appointments as I was 'too busy'.

I'm being treated at Kings College hospital and Conquest hospital and was put on drug therapy (Eprex and GCSF) 9 months ago after fatigue and continuous infections started to impact on my quality of life. I will (probably) be having a BMT once the jabs stop working - I'm fortunate to have a sibling BM donor (sister) who has quoted me very reasonable rates for a couple of pints of stem cells!

It's been really useful to read the accounts of those of you who have already been through BMT and it's done a lot to demystify things for me in terms of timescales and what to expect.

Is there anybody else currently using (or who has used) Erythropoetin and GCSF? I'd like to hear if you had side effects with the GCSF and how long the therapy was effective for.

Regards all, Nick.
Graham

Re: Epo and GCSF experience?

Post by Graham » 25 Nov 2011 19:23

Hello Nick,

I have Posted on a similar topic but in ended up CMML folder (my ineptitude).

I am in MDS RCMD Group Diagnosed Intermediate 1. After suffering a Neutropenic Sepsis I was given Filigrastim and Aranesp (GCSF and EPO) I am now stabilised and have been on these drugs for a year with no side effects. I do feel aches in limbs at times but do not know if this is down to side effects.

I note you feel that the effects will start not to work and that you will need a BMT. My present Consultants act as if it will work for ever and have not planned ahead for this contingency.

Have you been told that BMT is the way forward or have you presumed that this is inevitable. In my case I am 69 years old and have no siblings.

i will keep self administering the injections and come to the next hurdle when I have to meet it.

Graham
steverichardson
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Re: Epo and GCSF experience?

Post by steverichardson » 19 Mar 2013 23:13

Can anyone tell me what the normal dosage is for EPREX for mds treatment.I was started on 10000 units twice a week for 6 weeks and my tiredness was much improved , but my heamotologist then reduced the dose to 10000 units once a week for 6 weeks and after 3 weeks I am now feeling bad again . Dose this dosage sound correct ?
Steve (62yrs) SE Essex
Under heamatology Basildon Hosp since 2010 for anemia . BM done May 2011 possible MDS but no confirmation , prescribed all the supplements but no improvement to hb 10.2 (lowest ). .Now on EPO and awaiting referral to kings .
chris
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Re: Epo and GCSF experience?

Post by chris » 21 Mar 2013 11:13

Hi Steve

I don't think there is a "normal" dose as the clinician will decide for any individual how much is needed to get the red blood cell counts to a level where symptoms improve. It could be dangerous to raise the levels too high too quickly so I think they try to find a minimal level to give optimal results. As always, do try to discuss it with your doctors and raise any concerns you have. Also ring Sophie if you have any queries.

If you type EPO into the search box you will find more posts on this subject from MDS patients on this Forum.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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