Anybody here have Myelodysplastic Disorder?

Gosh @nicolas you must be in complete shock, you are suddenly on this rollercoaster that must seem so out of control, a new language.
I felt in a bubble at your stage with the world going on around me.
I cannot help with your medical query, I hope others might be able to share their experiences.
What we do on this forum is support each other as we often seem to share similar fears, thoughts, feeling and practicalities and if you would like to talk to someone the support line details are above.
Have you got any support from family and friends?
I find I can be more honest sometimes on here than with family and friends as I can just say it as it is without someone trying to fix me.
Now might be the time to write down all your fears, thoughts, feelings, practicalities and questions for your medical team to make sure you cover everything you want to.
I look forward to hearing more about you and take care.

A warm welcome to the forum @nicolas, as @Erica said you must be in complete shock. I’m so sorry you’re having to go through this.
Our Myelodysplastic syndrome (MDS) booklet might be helpful for you which you can read here (but just email support@bloodcancer.org.uk if you’d like copies posted to you, some people find hard copies useful for writing notes in and taking along to appointments).
What also might be useful is the ‘Just Diagnosed’ section of our website which talks through some things people find useful to know after a blood cancer diagnosis.
It sounds like a really difficult time for you so please do feel free to share how you’re doing on here - hopefully others who have gone through a diagnosis and treatment for Myelodysplastic syndrome (MDS) will also share some experiences soon. We’re only a phone call or an email away on 0808 2080 888 and support@bloodcancer.org.uk if there’s anything we can do to support you.

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Hi @nicolas

Sorry not to have been in contact about your post sooner. I also have Myelodysplastic syndrome (MDS). My particular variant is trisomy 8, refractory neutropenia so it’s my white blood cells and neutrophils that I have problems with. I was first diagnosed in 2018 and am being treated with twice weekly injections of filgrastim which generally keeps my WBC at a manageable level, although I have had to have a few stays in hospital as a result of infections requiring IV antibiotics. Overall I have a pretty good quality of life and have been able to continue working full time, although I did step down as Head of Department when I was initially diagnosed as I was having serious fatigue issues.

I’ve found this forum to be tremendous support and there are a bunch of really great people here who understand the challenges and issues you face following a blood cancer diagnosis. If you have any questions or even just want to vent (I know I have) we’re all here to support you.

All the best, Peter

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How are you doing @nicolas?

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thank you that is really helpful.

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I am doing OK, start my second round of chemo tomorrow, concerned that my neutrophil is now 0.1 so very scared about infection.

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Hi @nicolas I hope your 2nd round of chemo goes as well as it can.
Perhaps tell your medical team how scared you are of infection and see what they say and really, really look after yourself you and your body are going through a lot.

How are you doing @nicolas?

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Hi @nicolas

How are you now? I hope everything’s going ok?

I unknowingly had Myelodysplastic syndrome (MDS), possibly for a few years. I wasn’t diagnosed until it tipped over into Acute Myeloid Leukaemia, which I understand 30% of Myelodysplastic syndrome (MDS) has a propensity to do. I’m sure your team will have told you whether your Myelodysplastic syndrome (MDS) was likely to do this.

But the treatment I had remained the same, even though the Myelodysplastic syndrome (MDS) had become Acute Myeloid Leukaemia- 3 rounds of chemo. And because of the RUNX1 gene mutation I had (which made relapse more probable) I also had a stem cell transplant. I personally found the chemo very rough, but not everybody does. I hope you have tolerated it better than me.

I’m 10 months post-stem cell transplant now, and I’m feeling great, and very positive 99.9% of the time. So I hope you can arrive at a similar place soon, with the worst behind you.

If you have any questions I can help you with, please just ask.

Sending you best wishes and good luck for your treatment. X

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I just wanted to say, ‘hi,’ and wish you luck.

My husband is recently diagnosed with High Risk Myelodysplastic syndrome (MDS), although we’re still waiting for the cytogenetics test results to come back.

He’s just started his chemo (day 2 today. I’m writing this whilst waiting for him to have his treatment. Hospital canteens can be lonely places!)

Fingers crossed both you and he will respond well to treatment. :crossed_fingers::crossed_fingers::crossed_fingers:

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Oh @SueD hospital canteens sure can be a hive of activity and extremely lonely places.
I hope your husband’s treatment goes smoothly and that you are also holding up as well as possible. Look after yourselves.

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thank you I am going for transplant this week and found your other posts really helpful, if i feel great in 10 months I would be mega happy, i am positive but have the odd negative thought as its getting closer.

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@nicolas, I always think that the waiting and unknown is the worst. Hang in there.

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It’s a very daunting experience to face, isn’t it? It’s natural to be nervous. We’ll be thinking of you here, and you can of course talk to us at any point while you’re in hospital.
I must admit, this last year post-transplant has flown by for me, even though I’ve been shielding at home. You’ll be at this point before you know it, hopefully.
Hope the chemo goes ok. And very best of luck with your transplant. Let us know how you are.

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Hi Nicolas, me too exactly the same, am in complete shock.

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Hi @Laylaclark6293 a great big welcome to our forum.
I think a great thing about our forum is that feeling of not being the only one, feeling alone and isolated. You are now part of our forum family.
It sounds as if you are in complete shock and I expect your thoughts and emotions are all over the place.
I think the waiting game is so, so difficult too.
Do you have support from family and friends (who are probably in shock too and not knowing how to be or what to say or do)?
We are here for you and the Blood Cancer UK support line is also there if you would like to talk.
I look forward to hearing more about you and be kind to yourself, you are in shock.

I’ve only just seen this,
I have Myelodysplastic syndrome (MDS) RAEB2 I’m too old for stem cell transplant (77) but have been treated successfully with Azacitidine for 7 years, my next monthly cycle no.95 starts in 2 weeks time providing my pre chemo blood test results are ok.
The only side effect I get is fatigue and sinusitis, also sleep disturbance. I also have Peripheral Vascular Disease which makes me less mobile, this is due to years of heavy smoking, nothing to do with Myelodysplastic syndrome (MDS).
The clinic I attend for treatment 5 days in every 28 plus 1 day for pre chemo is superb although understaffed.
I’m the longest survivor on Azacitidine in the clinic.
I consider myself very lucky it’s still working for me.
Good luck and best wishes
Anthony

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Dear @Laylaclark6293, welcome to the Forum. As our wonderful forum members have said please do reach out for support and if you would like to talk anything through do contact the Support Services team who are happy to help: Blood cancer information and support by phone and email | Blood Cancer UK. Take care Gemma

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Well @Blackhat, being the longest survivor on Azacitidine in your clinic, that really is a badge of honour.
Look after yourself

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Oh wow @Blackhat …95…I am in awe. Cannot imagine how your tummy has withstood that but that is amazing. I am just finished round 4!

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