Hi @Laylaclark6293 I have Myelodysplastic syndrome (MDS) too and was diagnosed at 42 yrs old. It is an awful shock. Its great you have found this board. Myelodysplastic syndrome (MDS) is such a rare disease so its hard to find people in the same position as you but when you do they give you the best support possible xxx
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That’s good to know Ashob, wish it wasn’t so rare. Wishing you all the best.
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Thanks,
One thing puzzles me about your comment about my stomach ?
Surely you don’t have all your treatments in your abdomen? I’m on a 5day cycle and I’m dosed arm- arm- leg-leg then stomach. That is the usual way it’s administered. The only discomfort I get is when both my legs have been done when they both ache for a couple of days.
Best wishes
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Hi @Blackhat no I am dosed in alternate sides of tummy for 5 days. Never heard of it being put anywhere else!
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When I was diagnosed in November 2014 I was given a fact sheet about Azacitidine published by Macmillan which lists side effects and the various ways the drug is administered, including the way I have mine given.
I wouldn’t like having the whole cycle in my abdomen.
Rotating the treatment prevents soreness in injection sites.
Check out Myelodysplastic syndrome (MDS) Support Org online who are based at Kings in London, very informative.
Best wishes
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Hi Ashob, it’s so difficult to get any answers as there is not much information, I live in constant fear of infections and have no idea how many times
You can have intravenous intibiotics? Xx
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Hi @Laylaclark6293 I have had Myelodysplastic syndrome (MDS) for 5 yrs now and never had an infection or needed iv antibiotics (touch wood!). I know not everyone is as lucky but whos to say…
It is a very complex disease. I have been on GCSF injections for the last 4 yrs. They keep my wbc and neutrophils at a decent level to help protect me against infection. Are you on GCSF?
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Hi @Laylaclark6293 and @Ashob
I also have Myelodysplastic syndrome (MDS). Was diagnosed in 2018 and also have GCSF injections twice a week. I’ve been a little less lucky than Ashob as I’ve been hospitalised three times (got sepsis once) and needed IV antibiotics. Overall though tbe GCSF is doing it’s magic and keeping me out of hospital.
All the best, Peter
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Hi @Dyslexicprof and all,
Hope you’re all doing well. My name is Peter as well, I’m 27 and I just got diagnosed with trisomy 8 today. I am having prolonged cytopenia after a recent stomach infection, so I am being monitored by the haematologist’s clinic. I had low platelets and white blood cells which didn’t recover, so it was suggested I get a bone marrow biopsy done which revealed the trisomy 8 .
My blast cells are still <1% which is good but they are monitoring me in case it develops into Myelodysplastic syndrome (MDS). Waiting for more results from the biopsy in 6 weeks (i think my genes, and also testing for pnh)
The haematologist said that if I were to get Myelodysplastic syndrome (MDS) then a stem cell transplant would be needed, but it is apparently very risky. I am hopeful, but scared.
Kind Regards,
Peter
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A great big welcome @pnuts123 I would say just give yourself time to assimilate all the information you have been given today, it is a lot to take in.
You have got to wait 6 weeks for all your results.
I think hopeful and scared is a natural combination of thoughts and feelings. In my experience you can have very conflicting thoughts and emotions at the same time.
Mine went on high alert and 19 yrs later just the thought of a test, result or appointment starts them off again. I have another blood cancer.
Do you have any support?
I would say to really look after yourself, divert yourself by doing nice things and be very kind to yourself.
Please keep posting, you are never alone on our forum
The main thing you can do
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Hi @pnuts123 and welcome to the forum.
It’s great that you found us and that you have shared what is going on for you.
I can imagine it’s a lot to take in and an anxious time waiting for results. I think we all understand how difficult that can be.
Feeling scared us completely natural and I hope you can share how things are for you on the forum because we all understand.
Please - when you feel ready - keep posing and let us know how you are doing and the Support line is there if you need it.I’ll share the link below 
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Link as promised
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Hi @pnuts123,
I’d also like to welcome you to the forum. I’m sorry to hear that you’re going through all this at the moment but it sounds like you have a good team looking after you. I understand how you feel having been in the same place six years ago. While you’re going through the various investigations try to avoid “Dr Google” as there is a lot of scary stuff out there and it’s important to remember everyone is different. There is some great and reliable information on Myelodysplastic syndrome (MDS) here on the Blood Cancer U.K. website and the booklet on Myelodysplastic syndrome (MDS) has recently been updated with some really good detail on the condition and advice for newly diagnosed patients and their families. You can access this via the following link:
You have highlighted that your blasts are < 1 which is very positive so hopefully you’ll just need support treatment. I have been living with this since my diagnosis in early 2018, although I believe it had gone undiagnosed for several years before. I manage my white blood cell and neutrophil counts by having filgrastim injections twice a week and this has generally kept me out of hospital even having contacted Covid twice in the past year. I had to make some changes to how I live my life but I’m still working and overall have a good quality of life. As you go through the next few weeks try to stay positive and if it helps talk to others about how you are feeling. I had counselling in the early stages and also found this forum which was brilliant as I was able to talk with others who understand what I was going through. Also another tip is always to write down any questions you have prior to going to medical appointments and have a note book so you can record any information that you are given at your appointments such as blood counts.
As Nicola and Erica highlighted in their posts Blood Cancer U.K. have a range of brilliant support services including the helpline. Also remember we’re all here the help on the Forum. There is a really great group here who you can turn to and talk about anything you are going through in a safe and non-judgemental environment.
Take care.
All the best,
Peter
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How are you doing @pnuts123? X
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Hi @Erica, @Nichola75 and @Dyslexicprof,
Appreciate the quick responses and thank you all for the warm welcome. It is reassuring to have a nice community like this. I took a few days off work to recompose and spend time with my family and partner. Have my best mate’s bucks this weekend too so I’ll need to smile more haha.
My primary support is my nurse, she said I can contact her anytime for info while the haematologist looks into the issue. I’ve been told I have kidney scarring too, so they’re a little unsure what the main issue is. They said they’ll need all the results to put the pieces together.
I will try to stay positive and avoid the google rabbit hole. My fitness goals have moved from bodybuilding → powerlifting → sports → bulletproofing my knees → and now to health. I never paid attention to health when it comes to my training and nutrition, because I always thought it was too early to worry about it. But now my goal is to reach my peak health condition so that my body and mind are more prepared for whatever may or may not come.
Thank you all again for helping me gather my thoughts and intentions. Will update once I get some more news.
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