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Retacrit + Venofer for B-thalassemia

Blood Cancers & Disorders | Last Active: 6 days ago | Replies (6)
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@katanaguy

Diagnosed with "MDS" Aug of 2024...I have been getting the Retacrit injection weekly to generate more Red Bllod Cells. I had underwent a Bine Marrow Biopsy & it showed a 7q deletion in my body cells, since my Hemoglobin rate was way,way down in the low 6's. I am now up to 9.2...& my doctor says she wants to get me to a Hemoglobin rate of 10.

I am having more energy, etc, however I am wondering why reach only a level of 10....is it possible my Hemotopogist-Oncologist is setting goal to low or does she think at my age of 73 also diagnosed previously with Chronic Heart Failure that will prob be my best ever possible Hemoglobin rate to get to achieve with these 2 conditions I have.
I also have had Sepsis 4 diff times (1st case was a bad one ) in 9 years as well...once you get Sepsis....you have a much greater chance of getting it again. I think Sepsis has shot holes in my overall body immunity as well. I have to really watch anu new skin cuts, etc & immediately clean it well.
I am just to give you an overall picture right now of where I stand with MDS...MY Oncologist has always said I am a mild case of MDS....sometimes I wonder if she is being straight up about this...I told her to be & I do not like playing any niceties about MDS...want truths .

Anyone feel--only reaching of a level of Hemoglobin rate of only 10....is too way to low for me? I want back up to at least 13 if possible for me. At the moment I am only at a 9.2 rate...it stayed same 9.2 for last 2 weeks...1st time it did not advance a little after the standard Retacrit injection each week....all injections beginning...since mid August

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Replies to "Diagnosed with "MDS" Aug of 2024...I have been getting the Retacrit injection weekly to generate more..."
Lori, Volunteer Mentor | @loribmt | 6 days ago

Hi @katanaguy, You’ve been through the wringer the past couple of months! With your very low hemaglobin, I suspect you were feeling pretty sloggy for a few months even before your diagnosis of MDS.

MDS (Myelodyplastic syndromes) refers to a group of cancers that keep your blood stem cells from maturing into healthy blood cells, either red, white or platelets. Without enough healthy blood cells, you may develop serious conditions like anemia, frequent infections and bleeding that won’t stop.

With a hemaglobin reading down in the 6 level, you were certainly anemic and felt the side effects from that with extreme fatigue and probably shortness of breath. You also mentioned recurring sepsis infections which can happen when an immune system is compromised. I’m not sure the sepis is what ‘shot the holes’ in your immune system. It was likely that your ‘shot’ immune system caused by the MDS is what’s allowing for the frequent infections.

Your hematologist has you on a medication to help increase the production of red blood cells. From what you’ve mentioned, it seems to have brought your hemaglobin level up considerably from the low 6 readings to 9.2
If your body isn’t able to make enough healthy red blood cells on its own, there may be a limit to how much the Retacrit can do. Maybe the goal of 10 is a realistic number that your doctor is projecting. This will be good question for you to ask at your next appointment.

There are several (I think 6) types of MDS classifications which help determine the risk of the disease, which in turn can determine treatment options. Your doctor has the results of the BMB so she’s using that information to guide your treatment going forward. Getting your hemaglobin back to a near normal range was the crucial. From my own personal experince with AML, I know changes in our blood health with treatments can take time. So my gut feeling is that your doctor is being straight up about your MDS with you.
What you can do for your next visit is get a list of questions together that you’d like answered. You can ask if 10 is a realistic number for your hemoglobin? Will it ever go higher?
Will I need a blood transfusion? Are there lifestyle changes I can make to help my numbers get higher?
Don’t be hesitant to ask questions of your doctor.

When you had your blood work run, were your white blood counts and platelet counts normal?

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