I am just learning about this disease. I never felted so alone. I am the anemic type with 6.4 hemoglobin. I am getting my first EPO shot next week. Anybody can add more information?
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Hi @MDWHY and welcome to the forum.
You definitely come to the right place. I have a different blood cancer but the thoughts around diagnosis is something we all share and feeling lonely is something we’ve all experienced.
Im hoping that somebody else will be able to share their experiences with you regarding your questions and don’t forget, the Blood Cancer Support line is there if you need to talk through things.
Have you hit a supportive medical team and others around you?
The testing and constant appointments is really difficult at the beginning so please make sure you kept posting. We are all here for you and I hope that being part of the forum makes you feel that little less alone x
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Hello @MDWHY
I’m so sorry you’re having to learn about this disease - but you’ve come to the right place for support. Welcome to the forum.
It’s frightening getting such a diagnosis, and from my own experience (Myelodysplastic syndrome (MDS)/Acute Myeloid Leukaemia) it is indeed lonely as you try to process the awful news.
No one really knows why anyone gets Myelodysplastic syndrome (MDS). And you title your comment , ‘Myelodysplastic syndrome (MDS) survival rate.’ I can’t give you figures on that, but Myelodysplastic syndrome (MDS) is also known as ‘smouldering leukaemia’ and people often live with it for many years, before feeling there might be an issue. And then, treatment might be minimal for many years once diagnosed, because the consultants may want to see how the illness progresses. And should it have progressed significantly, Myelodysplastic syndrome (MDS) is sometimes treated with a stem cell transplant, which is a very effective treatment.
I don’t know if you’ve noticed, but doctors rarely talk about cures for cancers these days, but whether it is treatable. My consultant reassured me Myelodysplastic syndrome (MDS) was treatable, and when it was realised my Myelodysplastic syndrome (MDS) had become Acute Myeloid Leukaemia (this happened during the diagnosis) I was still reassured it was treatable.
I’ve had chemo, and went into remission straight away. I then had a Stem cell transplant to ensure I stay in remission, because my specific gene mutations suggested a greater chance of relapse. That was a year ago, and I’ve recovered well and am feeling my normal self. So it IS possible to get beyond Myelodysplastic syndrome (MDS) and look forward to a near-normal future.
It’s such a frightening time though. I advise not Googling for info, unless you’re looking at trusted sites like this or the NHS. And do speak to people here or ring the support line, if you need an ear. That’s why we’re all here.
Warmest wishes.
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So glad you found this community during what sounds like such a tough time for you @MDWHY. May I ask how you’re coping at the moment? We’re only at the end of the phone if you want to give our support line a call? The number is 0808 2080 888. In case it’s helpful for you we have a booklet on Myelodysplastic syndrome (MDS) which you can find here - Myelodysplastic-syndromes-MDS-Blood-Cancer-UK-MDS-0319.3.pdf (shopify.com) and also this section of our website for people newly diagnosed with blood cancer - I’ve just been told I have blood cancer | Blood Cancer UK. Take care
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HI MDWHY,
I was diagnosed with Myelodysplastic syndrome (MDS) in March 2021 and I was given the Blood Cancer UK book on Myelodysplastic syndrome (MDS) which I found very helpful. Since then I inject myself weekly with Aranesp which I think is similar to your EPO. It is keeping my blood count stable. I live a pretty normal life, go to WI meetings and see my family and friends, but keep away from busy places, and always wear my mask. I know that at 78 years old, I am too old for stem cell treatment, but it sounds good. There is also a Myelodysplastic syndrome (MDS) Patient Support Group which might be helpful. When I was diagnosed, it was a complete shock and it took ages to come to terms with it. Finding this forum and reading the posts for ages before I joined has helped so much, given me hope and also made me count my blessings. Good luck with your first shot of EPO and please let us know how you get on. very best wishes.
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Hi @MDWHY a great big welcome to our forum, others have said it all.
I have another blood cancer and I was diagnosed 18 yrs ago.
What I and others share is the fear, anxiety and isolation of a diagnosis.
I am so glad you have found us and perhaps you have found a reliable, informative and supportive website so just stick to it.
Nobody knows a survival rate and I definitely saw my life going on forever and the usual things happening.
The shock of a diagnosis throws that out the window and actually nobody in the world know what the future will bring, we just felt we did.
We are also very special unique people and treatment or watch and wait regimes are very individual.
I really look forward to hearing more about you so please keep posting and really look after yourself
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