MDS and anemia

@pixiesusan
I am so sorry for your circumstances…everything is magnified especially when we feel so bad. One thing our healthcare system has taught me is we have to be our own advocates! We are our only patients…our MDs sometimes have so many they are stretched thin and pulled in many directions.
I don’t know how old you are however your team has options to treat you. Especially if a BMT is out of reach for you. It was presented to me and I elected to pass as the 100+ days of 24 hr care wasn’t doable plus the “cure” rate was 50/50. I am on maintenance and really feel great most days…in this my “new normal” life.
I pray things work out for you!

@bradycardia Welcome to Mayo Connect! Sharing positive stories like yours of being in remission for 9 years after treatment for HCL (hairy cell leukemia) is such an inspiration for others.
I hope you’ll consider popping into some of conversations for members with HCL. Being able to offer hope to someone who is newly diagnosed can make such a huge difference in their perspective going forward.

Here is a link to the HCL conversations: https://connect.mayoclinic.org/search/

As for comments regarding collateral damage from our treatments for blood cancers, many drugs, from OCT meds, supplements, to Chemo may all have the potential down the road to cause some side effects. When you think about it, really anything we put into our bodies leaves an impact of some description.
Chemotherapy isn’t a treatment taken lightly by patients or the doctors who prescribe it. When it’s used, there is the goal of controlling the progression or hopefully eradicating cancer cells with a risk vs reward factor.
From my own experience, seven years ago I was in the fight for my life with AML…aggressive chemo for an aggressive leukemia. Believe me, I wasn’t worried about ‘the future’ of what those drugs may cause because I was more concerned about the immediacy of the situation! There would be no future without receiving the chemo. These drugs can buy us precious time.
Having talks with my hematologists and transplant doctor, I’ve learned to not focus on ‘what if’ scenarios. IF something happens, we’ll deal with it then. But the risk is low and I’m not going to waste a moment worrying about that possibility. I’ve had 7 amazing years at this point which I would not have had without the chemo; I’d have been long gone. And you’ve had 9 wonderful years in remission as well! These nasty drugs can achieve miracles for so many of us.
Wishing you a Happy New Year and continued excellent health! ☺️

Considering it’s almost a decade ago, you may not recall but what were your symptoms when you were diagnosed?

@loribmt Thank you for sharing and caring.

@justmeb5 You know the quote, “It takes a village to raise a child.” I feel it isn’t limited to children. It applies to all of us. We have to take care of each other with support, kindness, patience…the list goes on. I’m just very grateful to be in position to be able to encourage others with blood cancers; To offer a bit of hope when life feels overwhelming. ☺️

How is your husband? Is he still receiving reblozyl injections?

I have MDS too. Anemia is being treated with Procreit shots every 2 weeks. Started eating beans & spinach. We'll see if that helps. Cannot reach 12!
Bjw

@katgob
I guess I should’ve mentioned also that I am a male. I was diagnosed 4 years ago. My symptoms have always stayed about the same with some days better than others. I am currently receiving REBLOZYL injections every 3 weeks.