EPO

Please post here your experiences of MDS as a patient, carer, family or friend

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sandygourlay
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EPO

Post by sandygourlay » 07 Feb 2013 09:51

Hi, I'm Sandy (thats a male Sandy!) and I have had MDS officially since December 2010. Actually its secondary MDS following radiotherapy after surgery for removal of an N-H lymphoma. Been on EPO and GCSF since diagnosis of MDS. Currently have 3 EPO 20000 injections and 2 GCSF injections each week (self administer). I'd like to hear of others experiences following this regime and in particular how long it has proved beneficial to them. I ask because quite suddenly two weeks ago I was overwhelmed again by tiredness and fatigue which doesnt seem to want to go away. Is this a sign that EPO is being less effective in encouraging production of good red cells? Also would like to understand what happens when EPO and GCSF stop being effective? In terms of classification I believe I am RCMD with ringed sideroblasts. My marrow blast %age was 4% last time measured so that puts me as INT-1 but almost INT-2.
chris
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Re: EPO

Post by chris » 11 Feb 2013 20:20

Hi Sandy

Sorry but have no personal experience of EPO but didn't want your post to go unanswered. Have you contacted Sophie Wintrich on the helpline yet as she is a great source of information? And, of course, it would be something to ask your specialist about at your next appointment and maybe your blood counts might indicate whether the EPO/ GCSF was not working as well? Also, have you tried searching this discussion forum? Just click on Search at the top of the page, type in "EPO" and it brings up all the posts which contain it. Then you might be able to private message an author - just in case they are not active on the forum at the moment. The Private message goes directly to their e-mail account so less likely to be missed. I know Graham has been using EPO, self-administered like you I believe.

How are your platelets?! Have you ever had to have any transfusions or has the EPO avoided that? You seem pretty genned up on your diagnosis and what a blow that your MDS was caused by treatment for NH Lymphoma. Check Janet's posts as I believe that was what kicked off her Aplastic Anaemia too?

Hope you find something helpful.

Best wishes

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
janetstanford
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Re: EPO

Post by janetstanford » 12 Feb 2013 09:14

Hi Sandy and Chris
EPO i had my first course Sept 2009 for 4 weeks it had no effect on blood cells but at this time my platelets where no higher than 40 and white cells around 2.5 and newts ( did i have any ???) i was still on antibs and anti virals daily at this point ....the main symptom i had with this was an ache in the small of my back which appeared within a couple of hours of the injection this over the next few hrs got worse andspread downwards to my legs ???? i have no idea why :shock:
this lasted a few days at its worst i would lie down for hours and sleep in the afternoon ...over the next year or so all other counts increased esp the white cell counts and platlets 80-90 range ....then in 2011 i ask if i could have another course as i had improved so much ...my doctor agreed as it could do no harm i had another 4 week course again the ache appeared as before and my energy was sapped and i did sleep sometimes in the afternoon over the next few months my platelets improved approx 20 percent every blood test ( i so looked forward to those numbers) and for the last 18 mths white cells are between 5-7 newts normal range and for the last 12 mths plateles normal highest being 196 :) ....maybe both times the epo kick started growth ?....who knows
Sandy i did have Chemo and yes the Doctor has informed me the Chemo could have caused the AA( as i call it ) but also as i was a sickly child and was treated for anemia i could always have had it and in turn the AA could have caused the cancer of the bone marrow
Chris why do we never get a STRAIGHT ANSWER frustrating always if maybe and but !!!!!!
Well i am little pushed for time a numerous things to do and a lunch date as i hada transfusion at the end of the week so this week is the week i can be normal lots of energy ect and can go out lots .... :)
Any questions please ask hope this helps even a little ??/ if not i apologise in advance
Both take care hear from you soon Janet
Graham

Re: EPO

Post by Graham » 14 Feb 2013 11:03

Hi Sandy,Chris and Janet,

As some of you know I am on both EPO ( Aranesp Darbepoetin 500 micrograms ) now increased to once every 3 weeks and GCSF now increased to three times weekly. The effectiveness is starting to wear off but this has happened over the last 28 months. As the effect is gradual in my case and probable others, The clinicians will look at your general health Sandy before deciding on plan B. They do seem reluctant to even contemplate plan B informing me that if Ill with infections etc. will cure illness. Treatment is going to be reactive not proactive. It could be that your consultants are thinking on similar lines. Treatment though can depend on age.

The blood readings cannot measure the malformed or ineffective cells according to Prof Vyas Oxford Forum. My Neutrohils were down to 0.6 hence the increase. The ache that you may suffer as I do is well known and comes from the injections, equally it could come from the illness. Having had M.E. (chronic Fatigue). I have got used to it . I am now seventy and do get tired at times and have afternoon naps. At times though they can be more than that. Not practical if you are working.

The body can adjust over a long period to running on low blood levels. I can still manage the odd 15 mile walk but am tired for a few days afterwards. hb 103 does effect me on hills. Both injections have proved beneficial in reducing infections and improving stamina.

My blasts have varied taken within a week of one another, depends on sample and tester as is hand counted.(no machine) and is open to interpretation (again Prof Vyas)

A lesson to us all is not to worry too much re numbers,blood counts etc. it is how you feel.

Sandy please confirm the doseage of EPO of 3 X weekly of 20,000 as Red blood cells have a life of 28 days, so would seem high. Has this been queried. would seem to have same profile as you but never really understood what ringed siderblasts are.

Graham

Graham
sandygourlay
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Re: EPO

Post by sandygourlay » 14 Feb 2013 15:47

Hi Chris, Janet and Graham, and thanks for your replies. Let me try to answer your points and apologies if I miss some.
Yes I have spoken a couple of times to Sophie and discussed the frustraing nature of not really knowing where we are going with this treatment. I find lack of clarity very depressing and emotionally destroying. I clearly need to challenge my consultants (yes there are three and I never know who I will see!) about where we are heading. I started having EPO and GCSF over two years ago and it seems I need 3 Eprex 20,000 injections a week to keep red cells up in the 11 region and 2 GCSF to keep white cells up about 4. The problem of course is that these measures dont really tell us if the cells are any good as both these treatments just encourage the bone marrow to produce more of each kind irrespective of quality.
I dont appear to have a platelet problem. But this last month I have experienced extreme fatigue from the moment I get up and just cant stop myself falling asleep at anytime of the day. I also seem to ache in arms and legs as if I was getting flu. And oh yes there are frequent headaches. To be honest I am a little frightened of contacting consultants and have decided to wait till my next appointment in two weeks time. (I see them every six weeks).
Anyway many thanks again for replying to me. I know my MDS is not one of the more serious variants but it still manages to mess up my life big time!!!
janetstanford
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Re: EPO

Post by janetstanford » 14 Feb 2013 16:06

Hello Sandy

I do relate to your frustration and you are quite right it is frustrating depressing and all consuming and i also do agree that we never get a straight answer ....At least i see the same doctor all the time (except a couple of times a few years ago !!! issues)... maybe you could request to see the same 1 all the time ....Do you have a nurse specialist who you ring and discuss any issues or answer any questions you may have
And Sandy if you need to sound off please post we may not be able to help but we can sympathise (spelling) with you
Please take care
Janet :)
chris
Posts: 594
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: EPO

Post by chris » 15 Feb 2013 17:53

Dear Sandy

As is my wont, I have just googled the side effects of Eprex and found the following. Read the section under Warning! From what is mentioned here, I think both your frequent headaches and fatigue should most definitely be mentioned to your doctors as a matter of urgency and not ignored. If you are concerned about contacting them before your appointment in 2 weeks' time, maybe it is something your GP should be told - though to be honest the GP may not be as familiar with this medecine as a haematologist. I presume they have been monitoring your blood pressure? Not sure how old you are and if you have any other medical issues but if you have real concerns over your health, you shouldn't worry about raising raise them before the appointed date.

http://www.netdoctor.co.uk/cancer/medicines/eprex.html

Best wishes

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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