Dear friends,
Forgive me but i am new to this forum and so nervous. Just been diagnosed with Myelodysplastic syndrome (MDS). My doctor says i may need EPOinjections. Does anyone have views, advice on this?
Wishing you all the best for the day.
Eddie
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Hi @Eddie1, a warm welcome to this forum. I really hope you’re doing okay since your diagnosis. In case it’s useful at all, we have an Myelodysplastic syndrome (MDS) booklet here Myelodysplastic-syndromes-MDS-Blood-Cancer-UK-MDS-0319.3.pdf (shopify.com) which you can download or order for free. Pages 42-43 has information about EPO injections. Hopefully someone on this forum can shed some light into their own experiences of these too.
In case it’s useful, we have a section of our website for people newly diagnosed - I’ve just been told I have blood cancer | Blood Cancer UK
If you want to chat things through with us on the support line, don’t hesitate to get in touch on 0808 2080 888 or support@bloodcancer.org.uk
Take care, Alice
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Dear Alice, thank you for your welcome and the link to the booklet. Both are appreciated.
Best wishes Eddie
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Welcome @Eddie1 and thanks so much for posting even though you were so nervous, and probably in shock after your diagnosis.
I think it takes courage to post for the first time.
You are now part of our forum family.
@Alice_BloodCancerUK has given you a brilliant response and I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses,
I have not had EPO injections, but I know people that have had them or administered themselves for different conditions.
Have you got any support?
The main things are that you really look after and be kind to yourself and please keep posting
Hi
I have been using EPO injections for 4 years. I don’t have Myelodysplastic syndrome (MDS) but an MPN (Post ET Myelofibrosis) and have persistent anaemia caused by the drug that controls it. For various reasons I can’t have any more blood transfusions and use EPO to keep my haemaglobin levels up.
If you need them you will be shown how to administer them and will quickly become proficient. I do one every 5 days and keep a note on my electronic diary so it pops up on my phone the day I have to do it. You will be given a sharps box to store used needles
It took a few months for them to work but everyone is different as is individual dosages and timing - I originally had a higher dose every 3 days.
They have to be kept in the fridge. When I first started them I had to travel frequently to visit an ill elderly relative. I discovered hotels - from chains like Premier Inn to a small local hotel - were happy to keep them in their fridges. They are used to storing visitors’ insulin I gathered. You can buy neat travelling cases online.
I hope this is helpful.
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Dear Erica,
Thank you ever so much for the warm welcome.
It means a great deal to know that help can be sought and obtained. Even the knowledge boosts the spirit and indeed the body too.
I hope I will be able to reciprocate.
Best wishes
Eddie
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Dear Juliet,
Thank you for your kind response. I was touched and found it very helpful indeed.
I shall take courage from your example! The idea of administering EPO myself feels unnatural! But your example gives me courage.
I hope you keep on an even keel and are able to enjoy the sunny day.
With best wishes and thank you again.
Eddie
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HI Eddie,
I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap two and a half years ago. I have a weekly injection of Aranesp 300 which is an EPO. . I inject myself in my stomach without a problem. Because of the MPN, I also take hydroxycarbamide and it is a balancing act to keep the blood count up and the platelets down. Good luck with your treatment,
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Thank you ever so much Kate.
Makes me feel I too may be able to cope!
Very best wishes Eddie
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Dear Juliet,
Your post was very helpful, my mother is due to start EPO injections for Myelodysplastic syndrome (MDS) and has Essential thrombocythemia (ET) … and I think the nigrolight for her Essential thrombocythemia (ET) which is keeping her platelets in order may be causing her anaemia. I was very pleased to hear that even after a few months the EPO worked for you, it has given me hope,
thank you @Juliet
Fanoula
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My mother has both Myelodysplastic syndrome (MDS) and Myeloproliferative neoplasms (MPN)/ Essential thrombocythemia (ET), has just started on EPO and also has been taking anegrolite. How long does it take for EPO to take effect and are there are other possibilities for balancing high platelets and low red blood cells?
This forum is so reassuring
Fanoula
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Dear Fanoula,
I have been taking EPO for going on six months. My blood count has improved after the first three months and is now on a plateau. I do feel better however! And so am delighted.
Please pass on my solidarity to your Mum.
With the very best of warm wishes.
Eddie
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Dear Fanoula,
Sorry I forgot to say that I don’t know the answer to your second question.
Best wishes again
Eddie
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Hi Eddie
I have Myelofibrosis and because the drug I was given Ruxolitinib has made me more anaemic I have recently been having blood transfusions every 3 to 4 weeks. To reduce the amount of transfusions I have been given epo injections which I do myself once a week.
It’s a bit early to tell how they are working as only been taking them 7 weeks. I have just returned from a trip to Spain for 3 weeks and took the injections with me in a chilled pouch until I got to my apartment there and they went in the fridge. The thought of doing the injections is worse than the actual injection. You do get used to them.
All the best
Nicola
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Hello Fanoula,’
I have been having Aranesp injections for three years. My blood count has improved recently and I have been able to reduce the injection dose from 300 to 150 weekly. I am on hydroxycarbamide to reduce my platelets. They came down to almost normal. oth the drugs have worked well for me, until other problems have upset things. During the last three years , I have collapsed due to low sodium, had pneumonia and heart failure caused by lack of oxygen and fallen and broken my hip which really upset things and kept me in hospital for 2 months and complications caused by an over active thyroid. But recently, I have been back on track and my blood results have been the best for ages. I have an appointment with my haematologist next week , so will see how things are going. I think that the blood problems make us susceptible to other problems, but I am looking forward to summer. Do pass my best wishes on to your Mam, take the drugs and just carry on.
Kate
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Hi @KateS yes, we do tend to be my susceptible to other conditions, don’t we.
Please do let us know how your haematology appointment goes not week
Look after yourself
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Hi Erica,
Appointment was good. Platelets up a little and blood count down a little so 1 extra hydroxy on Saturdays to try and keep the balance , so everything going well at the moment.
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