Recently diagnosed with MDS with anemia and would like to connect

@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.

@shoch1957 I hear you. It's kind of like what came first, the chicken or the egg! MDS causes anemia which in turn causes these symptoms. The clinician probably identifies divisions in anemia: mild, moderate, severe where specific symptoms are "expected." Also, dysplastic cells are not good at carrying oxygen which leads to some of your symptoms. I would tell the Dr that those are your symptoms and that you don't appreciate the fact he/she is not acknowledging them. Otherwise, are you satisfied with your care?

@shoch1957 Myelodyplastic syndromes, or MDS are a group of blood disorders where the blood-forming cells in the bone marrow become abnormal, resulting in the marrow not making enough healthy new blood cells. This leads to low levels of one or more types of blood cells.
In your case it appears to be your red blood cells not keeping up the pace. They may defective, not be able to mature properly so they die off faster than usual, or not being produced in the numbers to maintain a normal level. This can cause anemia in MDS patients. Which you’re experiencing.

There are medications that can help with anemia such as growth factor drugs which promote red blood cell development. There are also drugs, such as Luspatercept, that help stimulate blood cells to mature which can reduce the need for frequent blood transfusions. So by taking that medication, more of your red blood cells may reach maturity. The life spans of the cells may vary causing the yo-yo in results and they may not all be healthy, effective cells. But because your hemoglobin remains consistently below what’s considered the normal range for a male (13-15 g/dL), those symptoms of anemia, being breathless and fatigued are also going to linger.

Not everyone will experience the same degree of symptoms with mild to medium anemia. For some of us, like you and myself, we may become aware much earlier of our lack of breath, (being air hungry) and heart racing at reduced hgb levels than others with the same numbers.

It’s certainly not helpful to have your doctor telling you that you’re the only one feeling this! Obviously, that’s not so. Many of us have gone through the same thing!

Wishing you continued success with the Luspatercept. I from what I’ve been reading it’s been successful for treating anemia in early treatment for low risk MDS patients!

Have a lovely holiday season!

@shoch1957
My husband was on Reblozyl when first diagnosed MDS . It only worked for him for about 6 months . Then doctor switched him over to Vidaza chemo . He had 19 cycles and now chemo seems to be less effective .
Has anyone tried Vidaza plus some other drugs to get back to good blood counts ?
Can you share your experiences besides being on blood transfusion support ?
Husband is 83 years old , always been healthy until MDS hit him 2 years ago

@shoch1957
My husband was on Reblozyl when first diagnosed MDS . It only worked for him for about 6 months . Then doctor switched him over to Vidaza chemo . He had 19 cycles and now chemo seems to be less effective .
Has anyone tried Vidaza plus some other drugs to get back to good blood counts ?
Can you share your experiences besides being on blood transfusion support ?
Husband is 83 years old , always been healthy until MDS hit him 2 years ago

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 ?

Thank you for your quick reply .
May we know what type of MDS you have ?
Since Vidaza is starting to not work after 19 cycles , his doctor suggested him to get his 3rd bone marrow biopsy to see what's going on to confirm new diagnosis .
I have heard some patients use Vidaza plus another drug to make Vidaza to work better .
I have heard of patients go for clinical trials .
All very scary and sounds disappointing after being on Vidaza and doing so well .
If you know of something that can be helpful for us , please share !
God bless you all and have a blessed holiday ......

Thank you for your quick reply .
May we know what type of MDS you have ?
Since Vidaza is starting to not work after 19 cycles , his doctor suggested him to get his 3rd bone marrow biopsy to see what's going on to confirm new diagnosis .
I have heard some patients use Vidaza plus another drug to make Vidaza to work better .
I have heard of patients go for clinical trials .
All very scary and sounds disappointing after being on Vidaza and doing so well .
If you know of something that can be helpful for us , please share !
God bless you all and have a blessed holiday ......

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 SF3B1 and my Hgb currently is 9.9 and I have those same symptoms. I have opted not to take any EPO meds at this time. I also have iron overload although I have NOT had any transfusions.