Connect
Comment receiving replies
@katgob
I am no meds. I'm told there are no meds. Since I'm 77, they tell me a bone marrow transplant is out of the question. Sounds like you are in good shape. I did a search for side affects and under certain conditions with low red blood cells my legs don't have enough oxygen.
How old were you when you had your bone marrow transplant? What was it like right after? Long recovery?
Replies to "@katgob I am no meds. I'm told there are no meds. Since I'm 77, they tell..."
Mornin’ @twitt1949 I’m still mystified that your doctor has told you there are no medications for MDS besides a bone marrow transplant.
While a bone marrow transplant offers the only potential cure, there are treatments for MDS patients which may help control or slow the progression of the disease. There are also medications to promote red blood cell growth which may help with anemia. If platelets or red blood counts get low, there are also transfusions to make up the deficits.
To help with that blood circulation in your legs, I mentioned a while ago about elevating them a couple times daily. Making sure your legs are actually above your heart. It is really helpful to lie on a sofa and then swing the legs up onto the back of the sofa while you’re resting. Just takes 15-20 minutes. Good time to nap or read a book.
You have an upcoming appointment with your hematologist/oncologist in a couple of weeks. Doctors want to know things such as:
Have your symptoms changes since our last visit?
Have your symptoms been continuous or occasional?
How severe are your symptoms?
What, if anything, seems to improve your symptoms?
What, if anything, appears to worsen your symptoms?
So think about answers to those questions. From what you’ve shared here, you’ve noticed a few changes since your last meeting with your doctor.
Have your list of questions ready to go. I think you have a few things to discuss. Some suggestions from the Mayo website:
What type of MDS do I have?
Will I need more tests? What is my prognosis?
What is my risk of leukemia?
If I need treatment, what are my options and what do you recommend?
I have other health conditions. How can I best manage them together?
Are there restrictions I need to follow?
Just tossing those ideas out there for you. When is your appointment?
Connect
@twitt1949
I was 63, heading to 64. The first 100 days were not bad for me. It has now been 2 years, and i have had few issues