MDS and anemia

@shoch1957 Normal Hgb for males is between 13 and 15 deciliter (g/dL). If your levels hover between 9 and 10.5 that’s considered mild anemia and certainly enough of a change in the amount of red blood cells carrying oxygen around your body to make a difference. Your doctor may not think this change is enough to have you feeling the side effects such as getting winded under load, but those of us who have experienced it, beg to differ. It’s similar to hiking at high altitudes. From my own experience (as a female) that was enough for me to start feeling something was off!

Moderate anemia (8 to 10 g/dL will have more pronounce symptoms such as looking pale, headaches, fatigue, shortness of breath, and heart palpations.
There’s not much that can be done at this point. Blood transfusions help but are generally only given somewhere below 8.
Has your doctor discussed a treatment plan for your MDS?

What really is aggravating is the comment “you’re the only one who feels like this “ but by the reactions above, I’m not. Why the lack of information to our hematologist?

@loribmt
Currently receiving luspatercept injections every 3 weeks. It seems to me that the injections cause my hg to go up & down like a yoyo with me being symptomatic at most levels. They won’t give the injections if I’m over 10.5 so up & down.

@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