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Jackie
ParticipantI have been getting 300 mpg Aranasp shots for 2 years. During the Summer of 2015, we were in Illinois for 3 months. I had to have procrit shots while there. The only difference that I found was the Procrit shot had to be given more often than the Aranasp shot. I got Procrit every 2 wks. When we returned to our home, I went back on my monthly Aranasp shot without any problems with either one, other than having to have my blood tested and the Procrit shot every 2 wks rather than monthly while in Illinois.
ParticipantYes, it seems like RARS is one of the less common forms of MDS? Getting Aranasp in the stomach seems worse than in the arm. Nice part is that the pain does not last very long (at least for me).
I also got a second opinion last October 2014 from Shands Bone Marrow Center in Gainesville, FL. My diagnosis is high risk, but my stats have been pretty stable for 2 years now. Dr Randy Brown from Shands said I was a candidate for a Stem cell transplant but my oncologist disagreed and they then seemed to concur not to do one.
I know several people that have had a transplant and survived it (one for 6 years now-she is your age) and another that was 70 last April 2014 when he had his – he is doing OK but did have a recent Host/Graft issue? setback. Did your Oncologist or Mayo ever suggest a stem cell transplant for you?
Since I am on Medicare, my shots and monthly visits are free so far.
I have called and gotten the “Building Blocks of Hope” that the moderator suggested and they have sent lots of good reading material. I also contacted the Cancer Foundation and got booklets from them.
From my research it seems you are on the younger side of people diagnosed with MDS? Ironically, I have tried to be healthy and active for many years and still try to walk (I wear a Garman Vivofit and love it) as much as possible and do some daily yoga exercises each AM. I also try eating as healthy as possible and read labels for bad ingredients etc. Trying to eat fruits and veggies with less meat.
Stay positive and remember God has plans for all of us-some which we don’t quite understand.ParticipantWhich Mayo Clinic do you go to? The one in Minnesota or the one in Jacksonville, FL? I am in Florida and have gone to Shands in Gainesville, FL. My regular oncologist is in Thomasville, GA.
ParticipantHi, I am 74 years old and I was diagnosed with MDS / RARS in March of 2013. I was monitored every 3 months by my Oncologist to check my hemoglobin level and started on Aranesp last September 2014. She now monitors me monthly and I get my monthly Aranasp then.That shot certainly hurts 😉
Had my 7th shot March 27th. It seems to help my energy some, but I am always exhausted the day I get the shot and it does not seem to kick in for several days.
This last time when I was there, she mentioned that I could have the shot more often, if I thought I needed to. It is an hours drive for me, since I live in a small town in Florida. You mention Mayo clinic – is it the one in MN or the one in Jacksonville, FL?
Would love to hear from you.ParticipantHow long have you been getting Aranesp shots? I just had my 7th one. They seem to help some, although there are no miracles. I have slightly more energy within several days of receiving my shot. I am told by my Oncologist that when they stop being effective, they can add something to the shot to help raise my Hemoglobin level.
What does you hemoglobin usually read?
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