[LeAnn Duke]

Hi Lisa,
My name is LeAnn and I am 58 yrs old. I posted a few days ago that I have Refractory Anemia with Ringed sideroblasts. I have been categorized in the low risk category for MDS. The Dr. suggested we try injections of Aranesp so I have been taking 500 mg every three weeks since June 26. Tomorrow is the day we find out if the Dr thinks the injections are working. He said if Aranesp works (“IF it works” and he said that twice) that I could do that for several years and my prognosis is 8.8 years and then we would look at a transplant (when Aranesp stops working). But I have had a transfusion about every three and a half weeks since we started the injections. I feel like my hemoglobin counts are dropping even now, but won’t know until tomorrow of course how low. I usually drop to between 7.4 to 7.0 and it has gone as low as 6.7 with hematocrit at 21. I can say that since I started the injections I am not as symptomatic. I have had some changes in my body which confuse me because I beigin to think it’s working the I go back and the hemoglobin and hematocrit level are still low enough to send me in for more blood. Of course I don’t know enough about blood counts to know what this means other than it worries me that the shots are not working. It is very unpredictable and when I think they are holding, they show up low again. Did you take Aranesp or Procrit and did it work for you?

The Dr. mentioned the next step would be a medication called Vidaza. Did you take this med before your transplant? Were there any bad side effects? How did they administer this med? Daily shots at the Drs office or IV in the hospital? We live about 2 hours from my dr and the hospital and am wondering if we will have to drive every day for a shot. And from what I read some say the shots are 5 days a week and others say 7 days a week. The closest Cancer Center is not connected with my dr and they closed on the weekends anyway. I guess every place is different though!

The good news is I have a twin sister that is going to be my donor and they say that is a very good thing. They say that is like having gold to the doctors!!! Did you have a sibling donor or a stranger donor? I guess my question for the doctor tomorrow will be (if Aranesp is not working) is what are my chances with the Vidaza, how long will I be on it, and after the stem cell transplant what is the normal prognosis for a transplant patient with an identical twin donor?

Another thing is that my twin sister’s husband has undergone a stem cell transplant for multiple myeloma almost 4 yrs ago so she knows first hand what to expect in helping me afterward. She of course was not a donor then. They were able to use his own stem cells.

Thank you for taking time to read this and if you can offer any help I would appreciate it. I don’t feel very brave when it comes to chemo!! That scares me!! I feel like I am positive about this disease and the disease itself doesn’t scare me. Actually, death doesn’t scare me. It is the being sick with chemo frightens me the most!! I don’t want to sound vain, but losing my hair scares me and then whatever ill effects my body suffers after chemo scares me!!

I am glad you have done well with the transplant and that you are alive and doing as well as you are. Would you mind telling me what GVHD is?

[LeAnn Duke]

Hi, my name is actually LeAnn. I sent Shea a message to see if I could talk to her about her MDS diagnosis. I live in Tennessee. I have recently been diagnosed with MDS as well (RARS). I am hoping to connect with someone who can correspond with me about this disease. Thanks so much!

[LeAnn Duke]

Hi Shea,
My name is LeAnn and I have recently been diagnosed with MDS too. June 1st of this year to be exact. I am a white 58 yrs old female. I have the Refractory Anemia with ringed sideroblasts. I have been taking the shot Aranesp for the last 12 weeks, one shot every three weeks with the hope that they will help my bone marrow to produce more red blood cells. Right now my Red blood cells are all that is involved and since June I have had 4 transfusions. I look forward to talking with you and being able to share whatever we may have in common with this disease.

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