Just wanted to say Hi, newby to the group here.
I am not really one to talk about myself or join forums, but I’d like to share my odd journey how I got here.
After being gradually more tired through April, it finally caught up with me the middle of May while me and my wife were gardening, was told I looked pale and to go and rest. Went to the doctors the next day where they took bloods and thought nothing else of it, until, 4 missed calls and voicemails through the night from 111 doctor saying I needed an urgent blood transfusion as my HB was at 56!! naively I went in that morning and ended up staying all week in side room having multiple blood and platelet transfusions, CT scans and a bone marrow biopsy, finally 6 weeks later, I was diagnosed with Myelodysplasia with 8% blasts. Once I had the diagnosis I could move to my private health through work, fortunately I got a same day appointment at The Christie, another bone marrow biopsy with results back within 10 days showing almost 15% blasts and moving aggressively towards Acute myeloid leukaemia ('AML') due to the mutations I have/had.
I am heading for my 4th bone marrow biopsy tomorrow (15th September) after already receiving a round of Azacitidine and Venetoclax in August, which after just one cycle, has killed all leukemic cells and surprisingly put me in a remission status and now booked for a double umbilical cord stem transplant on the 14th October, which is both scary and exciting at the same time. No matches on Anthony Nolan or DKMS due an anomaly gene but 2 Umbilical cords found and my name on them.
Think I have got my head around this and trying to stay strong for both myself, family and friends.
Good luck to anyone who is currently going through this awful disease, the only thing I can recommend and have done myself, is consistently think positive (always someone worse off than you) occasionally still enjoy a glass of red wine, get out and walk every morning for about half n hour, my HB is currently between 75 and 85 so it is tiring but will help you get those lungs and heart pumping.
All the best. Marky74. 
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Hi @Marky74, thank you so much for sharing this. What a journey, and what a way to write about it - I really admire that you’ve kept such perspective throughout.
Sounds like the Azacitidine and Venetoclax did exactly what you needed it to, and it’s great that you’ve got two cord matches lined up for October. Good luck with tomorrow’s biopsy, and thank you for the encouragement you’ve left for others further back in their own journey.
If you ever fancy a browse, a couple of threads might be of interest and relevant to you:
Keep us posted however things go.
Ceri - Blood Cancer UK Support Services
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Thank you Ceri,
I will keep you posted.
Just one more thing, if people are having lots of blood transfusions and have low platelets like myself, I found that if you apply ice for the first 48/72 hrs afterwards where the needle/cannula was put in, it will help the hematoma go down and help vein recovery a lot faster, then apply a hot water bottle after 72hrs to encourage blood flow.
Thanks again.
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Hi @Marky74 and a warm welcome to the forum.
You will find that everyone is so supportive and understand the challenges from their own experiences.
It sounds like a really challenging few months and I’m so pleased that the Azacitidine and Venetoclax produced such a great result so quickly.
It was one of 3 different chemotherapy regimes I had for Myelofibrosis and the combination that got me to the point where I was considered for Stem Cell Transplant.
I’m over 17 months post transplant thanks to an anonymous donor. The Transplant and recovery is challenging and worth it.
With your HB levels so low you are going to get tired so go easy on yourself.
Take care
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Hi @DuncanB thank you so much.
And congratulations on being 17 months post transplant, certainly very encouraging knowing this and so pleased the Combination also worked for you, amazing story and so pleased for you, I’m sure you had a few bumps on the way, but sounds like you are navigating this and come out the other side.
I totally understand re the HB level, whenever possible, I walk my dog most mornings, although slower and shorter walks but do navigate the fields whenever possible, fortunately, still working full time (from home due to being neutropenic) but the company has been extremely supportive, which I think also helps and one less thing to worry about and keep positive mindset.
Thanks again, it means a lot and now looking forward to being reborn on the 21st October. I am certainly going to milk this and celebrate 2 birthdays.
Take care.
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Hi @Marky74
So pleased to hear that your employer being supportive. Makes a huge difference.
Yes plenty of highs and lows on the road to Transplant. It was 16 months after diagnosis before admission for Transplant.
Then 9 weeks in hospital for Transplant rather than 5 to 6 weeks they had hoped for.
I wasn’t in remission and Consultant said that it was now or never for Transplant.
I think the fact that I was still reasonably active and a mindset which Consultant said was realistic and informed helped.
I was 59 when diagnosed and approaching 61 when admitted for Transplant. Had retired 7 months before diagnosis.
Diagnosis, treatment and Transplant have made me appreciate simple things in life, especially the outdoors.
Take care and feel free to ask any questions you might have.
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@DuncanB @Ceri_BloodCancerUK
Thank you so much.
Bone marrow biopsy went well, sedative definitely helped this time and apparently I was talking a little rubbish, fell asleep and didn’t even know it had been done.
Got my blood results back after half n hour, platelets up to 148K, neutrophils at 1.9 and HB up from 80 to 86. I’m feeling very positive going in to this transplant, I know I’m going to get “zero’d” again but hopefully with my own bone marrow creating cells, the donor cord cells can graft and I can slowly move forwards afterwards.
I was telling my wife about you @DuncanB and what a journey you have had, a lot of time in hospital but currently 17 months post transplant, inspirational.
Due to me not being neutropenic anymore and for the past 4 months I have invited 3 of my life long friends to join me for a beer this weekend, not seen them in months and could be even longer once I start my transplant process, so excited to see them and catch up in person rather than messaging all the time.
Thank you again, and anyone else reading this, please stay as positive as you can, it’s tough, it’s horrendous, it’s heartbreaking for family, it’s tiring and stressful, but maintaining a strong mindset will help you, I promise.
Take care for now.
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Glad you found the responses helpful and even inspirational @Marky74
Everyone’s journey with blood cancer without a doubt is different. Even when it appears they have the same headline diagnosis.
Great to hear you are having some beers with life long friends.
Just a word of caution. If any of your friends has any kind of sniffles or colds, suggest they miss out.
The last thing you need is any type of infection at this point.
I basically went into hibernation about 6 weeks before planned admission on the advice of Transplant team. Did it as I knew the clock was ticking in terms of getting the Transplant.
So message is enjoy and be careful too