Hello there @Cathy62, welcome to the forum and may I say you’ve posted very clearly. I’m really sorry to read of that Myelodysplastic syndrome ('MDS') diagnosis from earlier this year, I imagine it’s been a steep learning curve, to say the least!
I’ll share the great Blood Cancer UK information about Myelodysplastic syndrome ('MDS') for your reference here: Myelodysplastic syndromes (MDS) | Blood Cancer UK and from Macmillan here: Myelodysplasia or myelodysplastic syndrome (MDS) | Macmillan Cancer Support
I’m glad to learn your diagnosis is low-risk and your treatment is helping. My own treatment for a different type of blood cancer called Polycythaemia vera ('PV') was pretty slow at first but did come to stabilise my blood cell numbers, and perhaps a gradual change can be less stressful for us than a sudden one? It gave me more time to read up on what to expect at least.
Those symptoms of fatigue and breathlessness can’t be much fun though, and I wonder if you’ve let your specialists know? Do mention the breathlessness to them if you haven’t. Always worth keeping our specialists up-to-date with any new and changing symptoms as they can adapt our treatments to suit us better that way. Keep note for yourself too I’d say so you can build up an idea of any changes and when they started.
Sadly that fatigue you mentioned is so common for those of us living with blood cancer that it has its own acronym of CRF, cancer-related fatigue. I read that something like 80 % of us will experience CRF! Have you received or found any good tips for ways to offset the fatigue? Here are some ideas from Blood Cancer UK which I found really helpful after diagnosis: Fatigue | Blood Cancer UK and from Macmillan: Tiredness (fatigue) and cancer | Macmillan Cancer Support
Rather counterintuitively I found keeping as active as my body allowed actually improved my energy levels! I took up yoga in front of the TV again for when I was too fatigued to get out walking and this helped in so many ways, including my breathing and helping calm some of the very understandable anxiety. Pilates and other slow forms of movement can also really help with fatigue from what other forum members have shared. This Blood Cancer UK information about living well with Myelodysplastic syndrome ('MDS') has further tips: Living well with myelodysplastic syndromes (MDS) | Blood Cancer UK
We forum members can’t speak to medical aspects of these illnesses and their treatments but like you’ve already found we can absolutely compare notes with others here who have shared their own experiences. It’s lovely that you’ve reached out to @Leew67 and I’m sure you’ll find others here who know what you’re going through.
If you’d like to find others or specific topics simply use the search box at the top. I hope you don’t mind but I checked for other threads about living with Myelodysplastic syndrome ('MDS') and here’s a lovely one: Newly diagnosed with MDS
Perhaps you would like to join this highly rated Myelodysplastic syndrome ('MDS') support group via MDSUK: MDS UK | Support & Info For Myelodysplastic Syndromes (MDS) Patients & Families.
Do keep looking around the forum @Cathy62 and when you reach out to others just pop an @ before their username and they’ll get a notification from you.
And finally, if you’d ever like to talk medical stuff over with the lovely specialist Blood Cancer UK nurses then give them a free call on 0808 2080 888.
Do please keep us posted about how you get on @Cathy62, I’m so glad you found the forum.
