[bobderek]

Hi

The center in NJ is just the headquarters for the Foundation, not a Center of Excellence.

If you are near Philadelphia there are two centers near you. Typically there is a big difference when you go to a hospital that specializes in MDS.

I recommend you contact one or both of the centers right away. I posted the contact link for the head of each center.

Fox Chase Cancer Center
Philadelphia, Pennsylvania
Patricia Kropf, MD
https://www.foxchase.org/patricia-kropf

University of Pennsylvania Cancer Center
Philadelphia, Pennsylvania
Selina Luger, MD
https://www.pennmedicine.org/providers/profile/selina-luger?fadf=PennMedicine

• This reply was modified 7 years, 2 months ago by bobderek.

[bobderek]

You or the person you have to explain it to should see a doctor.

[bobderek]

I am so pleased that you have a good doctor. If you have not been there already, I recommend that you visit Marrow Forums at the link below. There are very active Boards, including a Board dedicated to transplants. You will likely find some who are willing to share their experiences.

http://forums.marrowforums.org/

Good luck!

[bobderek]

Is no one monitoring these forums. It’s bad enough there are so few responses. The best place to go for discussion and recent information is actually Marrow Forums http://www.marrowforums.org

[bobderek]

Here is the link about recent FDA letters to companies promoting CD Oil, for which there is absolutely no proof about its effectiveness. This post is a scam, and to the poster, if you post again without specific proof of your story, you will be reported and your anonymity on this board will be broken.
http://www.fda.gov/NewsEvents/PublicHealthFocus/ucm484109.htm

[bobderek]

I am not a doctor and I do not know what the results mean, but if it was me I would want to follow up with a expert hematologist at a hospital fully equipped to do further testing.

[bobderek]

What a terrible post. Do not believe and information like this without clear an convincing proof.

[bobderek]

U am sorry to hear of your father’s condition. What kind of injection does your father receive to increase what seems to be his hemoglobin?

[bobderek]

Hi:

Thank you so much for you kind thoughts. My wife is 70. The discussion my wife had was unexpected to say the least and I find that I am not sure what we know and what we do not know. Her specific recollection and the conclusions she drew are harder to separate. The only thing I am sure of is that the bone marrow test will be the deciding factor in her diagnosis. We hope for the best in the full knowledge that nothing can change what is in the sample they drew. I am so pleased for the level of your diagnosis and please accept our thoughts for a happy new year and hope in 2016.

[bobderek]

The best help I can give is this site, which you likely already know about.

http://www.mpnresearchfoundation.org/

Look Under “Living WIth” for recommended treatment centers.

Good luck!

[bobderek]

Thank you so much for your reply. We are just learning about the terms and levels and it is great that you are low risk. It is gratifying to hear about someone who went through a trial at MD Anderson seven years ago. My wife is with a specialist, and it is a matter of waiting now for the bone marrow test results to come back. As I understand it that will point the way. I avoid asking again for details but she said that two of the three blood counts that matter are good enough for now. So its waiting and gathering information and trying to get very recent reports. Much of what is on line seems old and your summary of things is extremely helpful. I will pass it on to my wife who does visit this site.

I will post her results here, although it apparently will take more time than usual during the holidays. Two weeks ago I had never heard of MDS and now it fills my world and makes me appreciate what I have. It is scary stuff and we hope for the best and prepare for the worst.

Thank you again and I hope that the current research will help free you from even the mild form of this.

Bob

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