Diagnosed in February but too scared to think about it…

[IBCB24]

I am 51, with good physical fitness, no symptoms whatsoever, stats are below. My bloods are pretty rubbish but I feel fine, workout every day, run, no fatigue or tiredness so it’s cone as a complete shock. Hospital consultant did the ‘we are so terribly sorry’ but it feels like an out of body experience. Mean survival is 3 years…. Could they be wrong? Will I just go downhill super fast? Anyone out there of a similar age with similar stats and still feeling fine a long time after a diagnosis? I’ve put in a critical insurance claim but sure they’ll find a way to wriggle out of it….I know I am very lucky to be feeling well but I’ve parked it and just pretending nothing is going on because every time I actually think about it I get very tearful and I don’t want any of my loved ones worrying about me

MDS with low blasts possibly evolved from aplastic anaemia
Blasts 4-5%
Karyotype trisomy 15 in 45%
IPSS score 1- intermediate-1
IPSS-R - intermediate 4.5
IPSS-M - 0.22 moderate low

[chris]

Hello there. I’m so sorry to hear of your diagnosis and how scared you are by it. Many people diagnosed with MDS feel a similar sense of shock -particularly when they are still feeling well and keeping fit and active.

You seem to have received a lot of detailed information about your disease from your clinicians. These different risk factors are helpful in knowing which treatments you might benefit from as your symptoms become more bothersome. You are quite young to be diagnosed with MDS (median age is 72-ish) so, on the plus side, you could be a good candidate for a stem cell transplant which is the only curative treatment for MDS. Has this been discussed with you?

I’m not sure where you received your diagnosis, but you should know that there are specialist centres for MDS which can be helpful as they have more experience of this rare disease. There is a list of specialist centres on our website

https://mdspatientsupport.org.uk/what-i ... s-centres/

Coming to terms with a diagnosis is really hard sometimes and it’s understandable that you don’t want to worry your family and friends. However, you do need support for yourself as keeping things secret is quite a burden. Hopefully you have joined MDS UK and have received the Patient Handbook which has a lot of good advice in the section about the emotional aspects and how to cope with them. Another suggestion would be for you to come along to an online patient support meeting. Many people who come derive great comfort and support from sharing coping strategies and being able to be open about how they are affected by MDS or CMML. There is a meeting tomorrow afternoon, 31st May, and here is the website link to register:
https://mdspatientsupport.org.uk/event/ ... -scotland/

Please also remember that the survival times given by these prognostic scoring systems are medians ie the middle values in a range. This means that some people will survive a lot longer. They also do not take account of different treatments that are available. In my case, I read a leaflet which gave median survival for my disease as 12-18 months and I was totally devastated as I knew I had already had the disease for longer than that so I felt I was on borrowed time. As it turned out, my disease had thankfully remained quite stable and I am now 15 years post diagnosis. Do it is well to remain hopeful.

Hope this helps. Do come back into the Forum or join a meeting. I feel sure it will help you.

All best wishes

Chris

[IBCB24]

I am at Addenbrookes in Cambridge and they are an MDS specialist centre. Consultant said transplant team won’t consider stem cell partly due to my aplastic anaemia and mainly i think because I am well and symptom free and it’s not without risk, so it’s a watch and wait. I had considered joining the call but worried it would be a lot of poorly people and I guess I am blinkered to not wanting to know what’s potentially coming down the line… I also received the booklet from the hospital, which I read, and a load of newsletters from the charity, still to be read…I just feel like I oscillate from thinking I want to be very knowledgeable so I can speak with some confidence at hospital appointments to pretending it’s not happening… sonny post yesterday was a tiny, baby step to coming to terms with things but hoping that maybe I’ll stay symptom free for many, many years!!

[chris]

Hi there.
I'm also at Addenbrookes (though since Covid all consultations are by phone - which is fine by me as I know Prof Warren well after about 13 years and saves the planet a 3-4 hour round trip of fuel!). I went to Addenbrookes as my local hospital was not helpful and referred me to Barts who were pushing me for a stem cell transplant or a clinical trial and I didn't think either would be beneficial or without risk for me, so I opted for Addenbrookes, having spoken to Prof Warren at the first patient support meeting I attended in Cambridge. He was very much for being cautious about stem cell transplant and suggesting he monitored me to see how things would shape up. I've been thankfully on Watch and Wait for 15 years so am very lucky!

I do know what you mean about the meetings. When I went to my first one, I thought exactly the same: it will be a lot of people, older than me (I was 59 at the time) who were very poorly. But when I got there and heard everybody speak, it made me realise that, although there definitely were some people who were worse off than me, many were actually younger than me and they were coping and getting on with their lives. I went into the meeting feeling quite depressed and down, but came out feeling much more hopeful and optimistic. Only my personal experience but it is what lots of our patients tell us about how helpful they have found the meetings. They are not all doom and gloom either as sometimes we "find the funny" in awful situations!

I'm a glass half-empty person and tend to catastrophise but the stability of my CMML has been a real positive and I do envy (and try to emulate) others who deal with these diagnoses in more helpful ways. But we are all different and coming to terms takes time.

I'm going to today's meeting so if you do decide to come along, please say hello! (Sorry I don't know your name!)

Best wishes

Chris

[IBCB24]

My name is Isobel. Might join as a spectator as I don’t feel much like contributing atm..

[chris]

Hi Isobel

Good to see you today and thank you for being brave and contributing to the meeting.

All best wishes

Chris