Hi all, I hope you’re all doing as well as you can be. It’s 2 years since I was diagnosed with Myelodysplastic syndrome (MDS) and have been on W&W with regular blood tests. After a recent ’ probably a good idea we take another bone marrow sample’ I was advised that the Myelodysplastic syndrome (MDS) had gone beserk and to try and stop the imminent Acute myeloid leukaemia (AML) I am to start chemo treatment soon in preparation for a transplant. I’m 67 years old, I have COPD (I don’t smoke), and live alone. Has anybody been through this and come out the other side reasonably unscathed? I’d be very grateful to hear your honest opinions so I can weigh up the 16 months it’s been estimated that I’ll survive without a transplant versus the time I may survive, (and quality of life I can expect) with having one. Thanks if you’re reading this. Sending hugs to all.
Hi @sallyspix
I am so sorry to hear about the changes to your health and diagnosis you are experiencing. What a scary time for you
I have no wise words but hopefully someone will be able to help and wanted to send you love and best wishes
Hello @sallyspix, welcome back to the forum, although I bet you wish you didn’t need to be.
Wanted to second @DottieB and say I’m really sorry to read of the testing and uncertainty you’re going through. Maybe have a look around the forum for others who have first-hand experience, you could check via the search box for Acute myeloid leukaemia (AML) and Myelodysplastic syndrome (MDS) and I’m sure others will have wisdom in abundance to share.
Do please keep us posted about how you get on.
Hi @sallyspix I am glad that you have posted again and I hope others can help with their experiences, obviously everyone is different but it gives you a flavour of things to consider.
Perhaps it will help you formulate some questions for your medical team, I would say add your fears and practicalities too.
Please do let us know how you get on and be very kind to yourself, it is a dilemma for you.
Hi!!! New here, recently been diagnosed with Myelodysplastic syndrome (MDS) and just today started with azacitidine inyections. My doctors told me that I’m high risk (39 yo) so it’ll be about 7 month of treatment and then bone marrow transplant. I think if you are able you should opt for the transplant, I’ve read that without it the life expectancy is about 1 year if it’s already progressed to leukemia. I pray for you to find your strength!!
Hello there @ParMaro, welcome to the forum. I’m really sorry to read of your diagnosis and being at high risk as a young survivor, how are you doing with it all?
It’s helpful to hear everyone’s experiences of living with blood cancers, but of course we are all individuals with different illnesses, comorbidities, and prognoses that really should come from our own specialist doctors.
Dr Google is notoriously generalistic and actually pretty inaccurate when it comes to blood cancer information so I’d say be mindful not to rely on anything a search engine shows. When I first checked my own diagnosis of Polycythaemia vera (PV) online it gave me a prognosis of 5 years which is totally wrong!
Perhaps have a look at the Blood Cancer UK research about Myelodysplastic syndrome (MDS): Myelodysplastic syndromes (MDS) | Blood Cancer UK
Keep us posted about how you get on @ParMaro.
Hi welcome @ParMaro to our forum.
@Duncan has already said that Dr Google can give some confusing information I have Chronic lymphocytic leukaemia (CLL) and that gave me a life expectancy of 5 - 10 yrs and that was 20yrs ago.
You say that you are recently diagnosed, I was in shock for a long time.
I would say only listen to your medical team and write down your fears, questions and practicalities for them.
I say this as they know you and your medical history best, we are all unique.
Treatment programmes are also very individual too.
The Blood Cancer UK support line is also there for you on 0808 2080 888
I hope someone will be able to share their experiences too.
Be very kind to yourself and please do let us know how you get on.
Hi everyone and thank you so much for your replies and kind words. Apologies for the delay in responding too! Duncan, I found an older thread relating to Alastair C and was saddened to find that he had passed quite quickly after what appeared to be a successful transplant. I’m not sure of his age but he did talk of getting back to work. He seemed like such a cheerful and optimistic man and I was really shocked when I read of his passing. We’re all so different in how we cope with our conditions, physically and of course, mentally. I’ve never had a fear of dying but I do like to know what’s going on!
Unfortunately the ‘nitty gritty’ doesn’t often get recorded due to the sheer grief and raw, human emotion if all those involved. I’m giving my daughter my password and details for this site and I’ve asked her to write on here when I’ve gone and to answer any questions for present and future members of this wonderful support group. I believe the more we know, the easier the process but of course, this isn’t one size fits all so private messaging will probably be the way to go. 
I intend to update my adventures until I leave this world with a massive bang! So far, I’m having a wonderful time! Sending you all some massive hugs wherever you may be. Try and keep smiling and watch some British comedy shows. It really does help.
Thank you so much for the kind words, yes, it is a shock receiving the diagnosis but I have a good team of doctors. I try not to google things anymore but my doctors just gave me the broad strokes, I learn the disease through medical sites like Mayo Clinic and such, and thank God I’ve found this forum, we don’t have support groups in my country so to find these space has been a blessing
Hi ParMaro,
I’m shocked that you have Myelodysplastic syndrome (MDS) at such a young age and yes, you absolutely must have the transplant! Being so young you will cope with everything so much better, and that’s a bonus for sure! Where are you from ParMaro? Warm regards, Sally
I love this and given me a great idea about my kids taking on where I leave off 
So true @sallyspix, we do all have such individual reactions to these various diagnoses and living with whatever prognoses we may or may not be offered.
Have to say, it’s refreshing to read your comments about facing the reality of passing away, whenever that may be. After surviving a heart attack many years ago (likely the first obvious sign of my Polycythaemia vera (PV) as it was caused by a clot) I’ve been far more open to the realities of my morbidity, namely that I could pop off this mortal coil at any moment for any number of reasons, which has been weirdly freeing.
I’ve only been here on the forum for a short time in the whole scheme of things and yet feel so connected to so many people here and really root for everyone to live as well as possible. It’s really sad to read of another forum member having passed away after being such a positive influence. Unfortunately I don’t think I ever interacted with Alastair C, but I will look him up.
Perhaps a way to accept these horrible losses of other members is just like you say @sallyspix—to celebrate their influence on us, around the forum, and for us to remain here to keep the momentum of this community going.
Totally agree with @2DB, I love your idea of passing your forum account onto your daughter. Funnily enough I’ve asked my other half to come on here and let folks know if I pass away first—I trust he’ll be welcomed to the forum just as well as I have been. Maybe our posts around the forum will even come to be fond mementoes for our loved ones? Must remember to add my forum membership to my will.
I’ll look forward to your future posts @sallyspix.
Oh you’re most welcome @ParMaro. As a fellow “young survivor” of a rare blood cancer it has felt at times for me like some kind of heavy burden over the rest of my life, and I can empathise with the shock of it all. Sometimes I wake up having forgotten about my diagnosis and re-remember it all over again with the accompanying body horror of it all!
But I also find more humour and motivation through the anxiety and notice my emotional and behavioural patterns a little better as time passes. Hopefully you’ll notice your own patterns and come to roll your eyes at it all, or find other tricks for not letting it rule your life.
Not to dismiss how hard this all can be, of course. The loneliness of not knowing anyone else in my life who really gets my symptoms or feelings about living with a weird chronic form of cancer can sometimes be frustrating. Or having to remind loved ones for the millionth time about stuff I need to be more careful about… Had to turn down some wild camping recently with a friend as I just couldn’t figure out how to make it less risky, being miles from phone signal let alone a hospital! The joys of becoming more sensible 
Sounds like you’re outside the UK too, @ParMaro. I’m glad you’ve got good access to your specialists and hopefully they follow the international consensus regarding treatments for Myelodysplastic syndrome (MDS). Maybe have a look at the LLS information about Myelodysplastic syndrome (MDS) too, they’re the closest American equivalent to Blood Cancer UK: Myelodysplastic Syndromes | Symptoms, Treatments, FAQs | LLS I’m over in California, for what it’s worth, but prefer to seek support with fellow Brits as I don’t have to censor/change my language here!
Oh @Duncan I am sure your other half would be welcomed and supported on our forum, whether you are around or not xxx
Aww @Erica He may even already be on here, but it’s very comforting to know he’d be supported should I peg it first!
I think I’m in love with you Duncan!! 
Is it too soon given that you haven’t even bought me dinner yet?? I love the way you write! I for one would welcome your partner on here. Is he as brave as you in dealing with this flaming inconvenience? Do you find that there just aren’t enough hours in the day anymore? I have a book inside me that’s just waiting to be written. 
Big hugs to everyone, Sally
Thank you for commenting Dottie B. I hope you’re doing ok, much love, Sally
Thanks Erica! You do a wonderful job of supporting everyone on here. I hope you’re well. Love Sally x🥰
Ha ha ha @sallyspix, why thank you! Who’d have thought I’d be so politely propositioned on a blood cancer forum!!! I showed my husband your message and he loves it and says you should head on over for dinner!
Also, I’d love to read your book, when it’s ready 
Hi Sallyspix, we spoke two years ago. are you still living in New Zealand ? I am sorry to hear that your Myelodysplastic syndrome (MDS) has gone haywire. I wonder what treatment you have been on so far? It is now almost 4 years since I was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap and so far I am ok. the The weekly aranesp injections are keeping my blood count pretty stable, but the Myeloproliferative neoplasms (MPN) (Essential thrombocythemia (ET)) has gone out of control. My hydroxy has been increased to 2 every weekday and one daily at weekends. I have also had my next appointment brought forward to next week. There was talk of another bone marrow biopsy, so I will find out more next week.I will not be offered a transplant because I am too old (81) and have other health concerns. I hope that you get good advice and support. I have read many positive things about transplants. Keep smiling and get on and write that book!! Keep in touch KateS xx