[Beth Stanaland]

Hi Alan. Thanks for your well wishes and yes, all is well. I do not need chemo, thank goodness. I have switched to an MDS specialist at M.D. Anderson and had a second BMB which confirmed my original dx and mutation. My treatment remains the same – – a blood draw every three weeks and an Aranesp injection if my Hgb drops below 10 ( with my previous doctor I got Aranesp when Hgb was below 11). My Hgb has been trending downward and is in the nine’s. They increased my Aranesp dosage so we will see if that will push me back into the 10s. My prognosis remains excellent with little likelihood that my low risk will move into a higher risk but that is because of my specific mutation. I know that you have not had the genetic testing but many cases of MDS with ring sideroblast are associated with the mutation that I have, SF3B1 so hopefully that is comforting news for you. I do not need chemo now and it is not likely that I will ever need chemo, according to my doctor. He did say that eventually I may need transfusions. I’m certainly hoping to avoid that because of my high ferritin levels So hopefully the Aranesp will continue to do the job. Long story why I was asking about Vidaza and Dacogen but the good news is that I don’t need it. Hope all is well with you!

[Beth Stanaland]

My oncologist said it is OK for MDS patients because it is an inactive virus. I’m going to get the vaccine. MDS patients need to avoid vaccines that contain a live virus but vaccines with in active virus are OK.

[Beth Stanaland]

Allan, did you see Stacy‘s post about accessing transcripts from the forums?

Let me know if you’re not able to access the transcripts and I will post here what I learned at the forum.

[Beth Stanaland]

I noticed shortness of breath when my hemoglobin dropped to 8.9. My doctor is going to increase the dose of my Aranesp injections and hopefully that will help to raise the Hgb

[Beth Stanaland]

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?

[Beth Stanaland]

Sherry, I just emailed you because I am interested in hearing your thoughts on getting a second opinion. Thanks! bethstanaland1@gmail.com

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