Recently diagnosed with MDS with anemia and would like to connect

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

@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 with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

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

Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.

It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?

I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?