After being diagnosed, I started treatment with 3 injections a day for 7 days. After approximately 2 years treatment was cut back to 3 injections a day for 5 days. After approximately 3 years of treatments I received my first transfusion, a treatment that will occur periodically now. While I can directly relate to the fatigue described in the original post, it was mild compared to the fatigue I experience when selected counts dip to the point of my needing a transfusion. I simply adjust and move on.
I wrote the original post and cannot even imagine the fatigue that you are undergoing. I have an immune disorder (IGA) and they are concerned about blood transfusions. I was on oral chemo for 6 years and then the shots for 1 year and there was a huge difference. I think you are amazing for continuing on in spite of the transfusions. You are right - mine is mild compared to that and I only hope I can maintain your attitude of adjustment and moving on if and when the transfusions stage arrives. My point is that no one who has not had any type of chemo really understands... Thank you for sharing! \r\n
I owe you an apology. I didn't intend to imply that the fatigue you experience is minor. You described exactly what I still experience 90% of the time and it's not by any means trivial.
During the couple of weeks prior to a transfusion my wife and I laugh at my needing to sit and rest after a shower prior to getting dressed.
I was diagnosed in 2013, I thought my fatigue was due to my age. Our family doctor thought otherwise and sent me to a Hematologist. He confirmed that I have MDS. He sent me to the local teaching hospital for a second opinion, again confirmed. Having served in the Marine Corps at Camp Lejune I scheduled an appointment with the local VA hospital. Diagnoses confirmed again. My MDS is officially determined to be the result of the contaminated water at Lejune. I harbor no ill will towards the Marines, I am proud to have served. MDS didn't develop until after I have enjoyed a full career in the private sector. In fact I have been retired for 10 years and for 7 years enjoyed volunteer work driving a mobile medical unit to health fairs and disasters.
Again please accept my apologies for implying that the fatigue you experience is minor, I know for a fact that it is not. We both have learned to deal with it.
I wish you all the best.
Hi My Dad has been diagnosed with mild form of MDS and he has been receiving blood transfusions every two to three weeks based on his hemoglobin count, he has also been taking these injections( I do not know the name) but they have not been very effective it seems and they plan to increase the dosage, my question is, is there an alternative therapy that anyone has tried out or does anyone have any information that I could use to read more on this to help my dad, any diet changes, any alternative therapy, if you could point us to any direction that would be really helpful.
Or if you could help me understand what he is going through may be will help me deal with him and be more patient towards him. I pray God gives you strength you need to deal with this disease and hope that you are able to recover soon.
Thanks and God bless.
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