Hi there I have just been diagnosed with MDS excess blast 2 and any help or advice or your stories would be really helpful, I am so in shock as it was just a routine FBC that found this and I did not realise i was actually ill, although now a few symptoms have come to light like my hip had been hurting for a while and i was getting a little out of breath, I just thought I was unfit after lockdown. The Doctors want to take me in for maybe 4 weeks to blast this, how have people found the treatments so far ? thank you any help greatly received.
Gosh @nicolasteeples 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 @nicolasteeples, as @Erica said you must be in complete shock. I’m so sorry you’re having to go through this.
Our MDS booklet might be helpful for you which you can read here (but just email firstname.lastname@example.org 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 MDS will also share some experiences soon. We’re only a phone call or an email away on 0808 2080 888 and email@example.com if there’s anything we can do to support you.
Sorry not to have been in contact about your post sooner. I also have 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
How are you doing @nicolasteeples?
thank you that is really helpful.
I am doing OK, start my second round of chemo tomorrow, concerned that my neutrophil is now 0.1 so very scared about infection.
Hi @nicolasteeples 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.