Treatment with Erythropoietin for MDS?

Recent diagnosis
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Hi,
I was diagnosed with Myelodysplastic syndrome (MDS) 2 months ago, they are also investigating me for bowel cancer. I am a 71 year old woman and as I am new to forums I’m not quite sure what it’s acceptable and what isn’t to ask so please bear with me.
My consultant had started me on Erythropinoietin (EPO) injections a week ago for the effect the anaemia is having on me.
I’m obviously tired but more than anything its the breathlessness its causing I’ve had a look around some of the other posts and can’t see any mention of anyone using this treatment..
I walk for about an hour a day with my very energetic dog plus I’m a carer for my disabled husband and my son who is also disabled but does not live with us so you could say I’m quite active and was reasonably fit before all this started happening.
I hope this is making sense to you and thank you for any information you may be able to offer.
Stitch.

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Hi @Stitch a great big welcome to our forum and your post is fine
I copy this for your from Macmillan cancer support
Side effects of Erythropoietin | Macmillan Cancer Support
Perhaps you are underestimating yourself as it seems to me that you also have a lot going on emotionally, psychologically and practically. I find that all wears me out as well.
You have had a double shock with 2 protentional diagnosis, which also wears me out.
The Blood Cancer UK support team is also there for you on 0808 2080 888.
Please do keep posting and look after yourself as well as you look after your husband, son and dog.

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Hi @Stitch and welcome to the forum.
I can see @Erica has already given you some really useful information.
I can imagine it’s all very overwhelming, especially with the everything else you have going on for you.
The helpline are amazing so if to think it would help to talk things through, give them a call.
I hope others will also be able to share their experiences.
Please keep posting. We all all here to listen and support x

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Hello @Stitch. I am so sorry to hear all you are coping with and the two possible diagnoses. I had EPO injections a few years ago for anaemia caused by myelofibrosis rather than Myelodysplastic syndrome (MDS). I had no side effects from the injections but the nurse at my GP surgery liked to check my blood pressure from time to time because she told me the treatment can cause my blood pressure to rise. Unfortunately the EPO injections were stopped because they didn’t work but I met another patient at the hospital with a similar diagnosis for which the EPO injections worked well. Wishing you well with everything. Willow x

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Hello @Stitch
Welcome to our forum & thank you for your post.
We are so sorry to hear about your diagnosis of Myelodysplastic syndrome (MDS) and that you are being investigated for bowel cancer.
I can see others have commented with some useful information, please know that you are not alone and you can speak to one of our support services nurses on 0808 2080 888.
It sounds like you have a lot going on, so please be kind to yourself :heart:

Getting the balance right between exercise and rest can be tricky as sometimes people feel more energetic by moving around whereas others can find they feel tired very quickly. Make sure you listen to your body and if you need to rest or do less on other days that is okay. You may find our page on Fatigue | Blood Cancer UK helpful to read over as this includes helpful ways to manage this.

If you are anaemic this can cause tiredness as well as breathlessness, however we would strongly recommend letting the team know how you are feeling so that they are aware and can do their best to support you. Have you found that this breathlessness is new? Or has just started since beginning the EPO? We would advise telling your specialist nurse/ haematology team as soon as you can. They will be able to look at your blood results and tell you if this is likely due to your anaemia or if this is a possible reaction to the EPO.

Our colleagues at Cancer Research UK have some information on this on their page Your blood, bone marrow and cancer drugs | Treatment for cancer | Cancer Research UK under the heading ‘Red blood cells’ this gives information about anaemia and EPO injections.

If you type in ‘EPO’ into the search bar in the forum there are a variety of posts that mention this, but for further threads specifically on EPO, you can find some information of others discussing this medication here:

Take care & keep us updated :slight_smile:
Emma (Support Services Nurse)

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Hello everyone, thank you very much for your warm welcome and lovely replies.
@Emma_BloodCancerUK thank you. This morning I received some very confusing information mainly because I couldn’t really understand the Dr’s advice due to her accent and it being a telephone consult this morning about some hormone treatment I have been using since February and rang the number you gave me where I spoke to one of the nurses there who very quickly looked into it and gave me the correct advice. The nurse was absolutely lovely and very easy to talk to.

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