How to cope with MDS diagnosis fear at 78 years old?

A new diagnosis can bring up many overwhelming feelings, and it's completely natural to feel frightened when facing something unfamiliar. Many community members have found that connecting with others who understand this journey and learning more about their specific situation from their medical team can help ease some of the initial anxiety. Consider reaching out to share more about your experience or questions - this community is here to offer support and understanding during this challenging time.

Hi Gene… I’m Donna, age 69 & awaiting what looks surely to be this… “rare disease” myself. A few months back i was JUST like you… when it was even mentioned… BLOOD CANCER??? Completely shocked me. As I read on & the MDS foundation is a wealth of information- their exchange aka message board is wonderful when you’re up to going there… very much specific info & many have encouraged me when seriously I was on a real ledge… None of us wants this… or ANY cancer… but having lived with MS & truly found a NON DRUG management tool for life… I take zero meds… work out 3x a week… not superwoman style but what works for me… I live a good life. Personally I’ll never be a candidate nor would I ever choose a bone marrow transplant or.. whatever it is they do… I’ll not go anything aggressive, and potentially destroy the quality of life I still have! I’ve read about people who choose the route of “supportive care” otherwise known as palliative care. I’ll take that.. but I’m not even there yet. I’ve gotta get past the bone marrow biopsy before we get to a definite diagnosis. My doctor told me to look up the IPSS i think it is, scoring system… because he knows I read alot… that might help you too Gene. Please… don’t allow this to overwhelm you… there’s much to learn & over at the MDS exchange I read of many who live years on end with no real problems. Take good care!!

PS just had the bone marrow biopsy today. Thankfully it wasn’t nearly as bad as I’d imagined. Grateful for sedation!! Even though Light… it was all I needed ❤️ Now to wait.

Thank you Donna for your kind words of support. I had my first treatment, It was 2 injections one one the back of each arm, not to bad. I think every three weeks I get an injection. Again thank you for being such a kind and caring person.

Ohhh you’re more than welcome Gene. We’re all on this together! I’m so glad your injections weren’t too bad! Believe me I know how rough this is… we’ll be ok.

I am 75 and also was and still am scared to death. It is very overwhelming for sure. But you have low grade so should do just fine. I unfortunately have high grade with blasts with a poor prognosis. Like my kids tell me take it one day at a time but that's easier said than done . I was diagnosed in February and my jaw dropped. I have done 2 if 12 rounds if chemo then off for two months which was scary so i could build more cells. Had my second bone marrow a month ago and confirmed the first. My daughter's, granddaughter's and mine jaw all dropped at the same time. Lean on your family and friends. That's the best support. Don't get down if you cry or scream it get mad. It's part if the process. I feel you will be just fine with family and prayers.❤️🙏