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Aranesp Injections for MDS

HomeForumsPatient Message BoardAranesp Injections for MDS

This topic contains 4 replies, has 4 voices, and was last updated by  Marcy Bohannon 4 days, 13 hours ago.

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #35979

    Marcy Bohannon
    Participant

    Hi, I am Marcy. I was diagnosed with MDS in December by a BMB. I had biopsies in 2007 and 2012, both of which listed the possibility of MDS. My hematologist/oncologist at that time was only concerned with my neutrophil levels for a diagnosis of T-large granular lymphocytosis. Nothing was mentioned about the MDS. I took it upon myself to see a local specialist in December of 2017 to request another BMB as my CBC results were not good. He told me the diagnosis is MDS but not to what degree, high or low risk. He didn’t mention the TLGL but I believe it is still present also, as my neutrophils are still low, now at 20. I was going to be treated with chemo if my neutrophils dropped to 9. They were at 5 on on blood draw but went back up somewhat the next time. I am being treated with Aranesp injections, 300 mg, every 3 weeks and monthly CBCs. The first injection brought my counts up a tiny bit but they are back down now and I just had my 3rd injection. I have not seen my doctor since January so I have a lot of questions for him, like “Do I still have the TLGL as well as MDS and doesn’t this make me at a higher risk”. My rbc is 2.7 and my hgb is 9. MCV and MCH are high. About the only normal count is my platelets. They were at 72 but now back up to low normal. Some days I feel really good and other days, I feel tired with aching in my legs and pain in my low back. There are other things that don’t seem right but I don’t know if that is just my mind playing tricks on me. I pray that I will get the answers I need when I see my doctor.

    #35981

    Allan Romriell
    Participant

    Marcy,
    I am sorry you have joined us in the MDS camp but this site can be of some help in getting support and a few answers. I was diagnosed in June of 2017 with MDS-RS a mild form with the main problem of low RBC count and low hemoglobin, mostly in the 11-11.8 range. My platelets like yours were as low as 75 but have been back in low normal for several months now. I feel pretty good for the most part but am more tired than normal most of the time and have trouble with shortness of breath when I exert myself. I also have aches and pains in joints and lower back as well. I hope you get some answers from your dr as it sounds like you have not been given adequate information on your condition. This is a confusing disease as everyone is effected differently. All the best to you.
    Allan

    #35991

    mdsfound
    Moderator

    Dear Marcy, Thank you for your post. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We hope you get the answers that you need but it is important to seek the opinion of a doctor who is an expert in the field of MDS. I hope this information helps.

    #36192

    Beth Stanaland
    Participant

    Hi Marcy. I, too, get Aranesp injections, 200 mg. I have a blood draw every three weeks and if my Hgb is below 11 (and it is always below 11) I get an injection. When I was first diagnosed in August 2016 my Hgb was nine point something. After starting the Aranesp the count went up into the tens for over a year but it has been back in the nine’s for about the past three months. Last count was 9.2. I also have high ferritin levels and last blood work showed slightly elevated billirubin. I have felt generally well throughout except for some fatigue and lower stamina.
    I hope you will be able to get the answers you’re seeking from your doctor. Have you considered getting a second opinion?

    #36219

    Marcy Bohannon
    Participant

    Thanks, Beth.

    I had my first bone marrow biopsy in 2007 and the second in 2012. My oncologist at that time told me that I had TLGL, which is a T-cell large granular lymphocytosis (a form of chronic leukemia). She did not tell me that the low-risk myelodysplasia was showing up at that time. She was only interested in watching my neutrophils. We now have an oncologist in town so I took it upon myself to get another opinion. His diagnosis after another biopsy was the myelodyspasia, or MDS. I believe I have had this disease for many years dating back farther than 2007 because for as long as I can remember, my blood counts, especially my Hgb and rbcs have been low. I only remember one time that my Hgb was 10. For the most part, it has been 9.9 and below with the lowest being 8. I have had 4 Aranesp injections with no real change in my counts. I too get more tired than I used to but that is probably contributed in part to getting older (72 this year). I still work as a school secretary when my services are needed as it gives me something to look forward to. I see my primary care doctor in May and hopefully I will have some more answers.

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