Aranesp Injections for MDS

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• March 19, 2018 at 6:15 pm #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.

  March 20, 2018 at 9:55 am #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

  March 23, 2018 at 12:22 pm #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.

  April 13, 2018 at 12:23 am #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?

  April 17, 2018 at 5:20 pm #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.

  July 31, 2018 at 4:08 pm #37042
  Ellen Jenner

  Participant

  Hi My name is Ellen. I live in the Chicago area. I was diagnosed with Low grade MDS-RS in Dec.2017. I have been on Aranesp injections since January 2018. I get 500mcg every 2 weeks and blood work also every 2 weeks. I have had only one transfusion and that was December 2017. my Hemoglobin usually is in the 8.7 range. I am always tired and do have leg pain, although I do not know if it is related to my rheumatoid arthritis.
  I started taking Yoga at the Cancer support center and it does seem to help.
  I was excited to find this site and am looking forward to the support it offers.

  August 1, 2018 at 1:09 pm #37053
  Allan Romriell

  Participant

  Ellen,
  I also have MDS-RS diagnosed in JUne of 2017. So far no treatment has been necessary and I hope to continue that for some time. Fatigue and joint and muscle pain, legs and hips mostly are my most common symptoms but I have been able to live life pretty much the same so far, a little slower than before but mostly normal. I wish you the best, this is a great site to get answers and support.
  A.

  August 19, 2018 at 8:14 pm #37216
  David Hollandsworth

  Participant

  Glad to find this group. My 88 year-old mother was diagnosed with MDS earlier this year and has been getting Aranesp injections every two weeks since about April. Doesn’t seem to be helping from what I can see. She went from a transfusion every two months and now is needing them about every 7-9 days. I wonder how worth the injections are to continue? Even with Medicare she pays $400-$500 for each one! Her current doctor never communicates much with us; so finally decided to move her to where I live and changed nephrologist. Hopefully he will have more insight into her condition. It’s always been kind of a mystery. She also has stage 4 kidney failure and congestive heart failure. So her days are numbered but I want her life to be as fruitful and pleasant as possible with what time she has left. She does admit she’s kind of starting to get tired of the transfusions but it’s the only thing keeping her alive.

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