[Eric King]

May you be comforted with memories of your mom and her long life. My dad died at 94 and my sense is that he had a good life. I hope you have a similar sense of your mom.
Take care.

[Eric King]

Thank you. I submitted application to the Fight MDS groups. Plus there’s a sub-group for low-risk MDS.

[Eric King]

Update 1/3/2023
I was doing the Aranesp every two weeks, but Hemoglobin continued to deteriorate. I talked with my Hematologist and we thought changing to Procrit every week was a good idea.

Unfortunately, after Thanksgiving, my Hemoglobin dropped from 9.5 to 7.9 in about a month. Because of Christmas holiday, my doctor was out of office. So his back-up recommended blood transfusion, which I got on Christmas day. My Hemoglobin went from 7.9 to 9.8 after the transfusion. I go tomorrow for my blood test to see where the numbers are now.

We also switched back to the Aranesp every two weeks.
I do feel much better. Mentally and physically better.
Would it make sense to push for blood transfusion when Hemoglobin gets to low 8s or high 7s?
It seemed like it made a big difference.
Thank you.
Eric King

[Eric King]

Thanks Michael and Roderick

My Hemoglobin used to be between 10.5 and 11.5 on a pretty regular basis. RBC was between 3.2 and 3.5 and Abs. Neutrophils between 1.5 and 2.9. I agree it’s a sort of punctuated equilibrium as your hematologist says.

I feel like my numbers are resetting to a lower level. I haven’t had any transfusions or drug therapy except Procrit back in 2010 and now Aranesp every two weeks. Aranesp is supposed to help boost RBC and Hemoglobin, but so far this year, it’s not doing much of anything.

Roderick, I’d say your numbers look really good, outside of the low platelet count.
Yeah, Michael. I would use caution as well with that low WBC count. But your other numbers look really good.

I sent an email to my hematologist to see if he could provide some insights into what he sees for me down the road. I haven’t heard back yet. I realize I’m in the low-risk category, and he has patients with much worse symptoms, but it would be nice to get some communication back to address my concerns.

Thanks again for your insights.

[Eric King]

Thanks Katie.
I will look up Vidaza. I’m 69 yr old. I too was on Procrit for awhile. I think the bone marrow option isn’t as viable of an option for those who are older. My Hematologist says that it’s like the cure is worse than the disease. At least while I was in the low risk category.

That’s what I need. A treatment plan that after a year has the MDS in remission.

[Eric King]

I have low risk MDS. I’ve been getting my Covid vaccinations via my PCP, and he won’t schedule me until the CDC approves the Moderna for 65 and over. I expect that will happen next week, then I can call them and schedule the booster.

[Eric King]

Thank you for your feedback. My Hematologist/Oncologist indicated that if my Neuprophils drop below 1200 than he would consider starting me on Vidaza. I’m going in later this month for a second opinion from another Hematologist/Oncologist who had previously treated me for my Anemia with Procrit back in 2010. I’m pretty comfortable with both of these Hematologist/Oncologist and their experience with MDS. Again, I’ve been lucky.

I was initially diagnosed with MDS and Iron Deficiency Anemia in 2010, so it’s been 9 years now. The “monitoring” has been good, but obviously my Neutrophils are declining and Hemoglobin last month was down to 10.5.

I have thought of getting an appointment at the Mayo Clinic in Phoenix. My concern is they may had the attitude that they have to do SOMETHING since I’ve traveled all that way to see them. They don’t want to just repeat the idea of monitoring the blood tests until they decline to a certain point. And I don’t know if I want to do something just for the sake of doing something. Has anyone gone to the Mayo Clinic in Phoenix? Wonder what their experience was like with Low Risk MDS.

I’m really in a confused state and your constructive perspectives and experiences in this arena are very helpful.

Thank you again for your comments.
More comments are always welcome.

[Eric King]

Hi Ellen et al.
I also have low risk MDS and doing the watching and waiting. My issue has been the recovery from the effort, not necessarily the effort. I can drag myself to the symphony or do the gardening or whatever. But it’s the next day, and then sometimes the next next day, that are the most difficult.

Now at least I’m aware of this pattern and can plan accordingly. I agree it’s challenging, especially when others don’t quite understand that we don’t look sick.

Good luck.

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