Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

diagnosed 2 yrs ago.

This topic has 5 replies, 3 voices, and was last updated 9 years ago by Jackie.

Viewing 6 posts - 1 through 6 (of 6 total)

Author

Posts
April 14, 2015 at 9:50 pm #26725

simpsonshe
Participant

Hi, I am 57 yrs old and diagnosed 2 yrs ago. I have so many questions and wonder if anyone else can help. I am in the early stages and being treated with aranesp and neupogen injections every 2 weeks. Some days are better than others. I have some depression not knowing my future. There is no one I know that has this same condition. Would love to talk to someone.

April 15, 2015 at 11:24 am #26733

Anonymous
Inactive

Aranesp and neupogen are considered supportive care in MDS. Aranesp is a red blood cell growth factor that can help support the bone marrow and delay the need for RBC transfusions. Neupogen is a white blood cell growth factor used to simulate the bone marrow to help produce more neutrophils to fight infection. Please feel free to call the MDS Foundation at 800-637-0839 if you require any further information. We are happy to help.

April 15, 2015 at 4:55 pm #26734

Jackie
Participant

Hi, 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.

April 16, 2015 at 11:12 am #26735

Anonymous
Inactive

We have given our MDS Center of Excellence designation to 5 institutions in Florida. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to ahassan@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/.

April 16, 2015 at 3:54 pm #26737

simpsonshe
Participant

I am so glad to hear from someone who is going through some of the same thingsI am going through. The Aranesp feels like 20 bee stings. Have you triedtaking It in the stomach? I live in Ga. After my diagnosis and because I am only 57, I decided to go to the Mayo clinic in Jacksonville. This was to make sure I am up in all the new studies. You dont have to referred. I was feeling the same way you were. I would get the shot feel bad about a week and finally get an energy spurt then it was time for a new shot. I was going every 3 weeks here in Ga. Dr Faron at Mayo recommended I take the neupogen shot along with the aranesp every 2 weeks. It takes 3 months for the neupogen shot to get into your system to help. I must say the last 6 weeks of 2014 was the best I had felt since my diagnosis of 5/2013. I dont know what insurance you have but I would recommend taking the shot more often or discussing it with your oncologist. I am on the low scale of MDS RARS. I hope what I have relayed to you will help you. I have bouts of depression because I know I haveto live with this the rest of my life. My family is very supportive but only someone who has it knows how we feel. Prayers for you.

April 18, 2015 at 3:44 pm #26738

Jackie
Participant

Yes, 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.
Author

Posts