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
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:
- EPO injections - Recent diagnosis - Blood Cancer UK Online Community Forum
- Low risk vs. High risk MDS and Treatments - #2 by Erica
Take care & keep us updated
Emma (Support Services Nurse)