AAMDS Patient Conference in DC

[Hawaii Bill]

Anyone else going to this conference?

Can anyone tell me if it is possible to get a consult with Dr Young while I'm in the area? Has anyone done this?

[Neil Cuadra]

Ruth and I will be there, Bill. Are you bringing any of your family along?

I don't know whether or not you can get a personal appointment with Dr. Young for the same week you'll be in Washington. You could call his office at the National Heart, Lung and Blood Institute to ask about it.

However, patients and family members at the conference get to talk to all of the physicians who attend about issues of concern. Since there are hundreds of attendees, we don't get to monopolize the doctor's time, and they can't do diagnoses or direct our treatments without reviewing a complete history at a private appointment, but it's amazing how many questions they can field in such a short time and how much general advice they can offer.

In open question-and-answer sessions, patients put the doctors on the spot, and it gives you real confidence in the experts that they have so much information on the tips of their tongues.

[Hawaii Bill]

Thanks for the reply and the info!

I was having doubts, but your reply makes me want to attend the conference even more! I will post here if I take the final plunge. It would be nice to meet everyone I can!

I'll try to contact Dr Young's office to see about his availability before/during/after the conference. Would like to meet Dr Young, get his assessment, and present myself as a possible participant in one of his trials should my current regimen end up being ineffective. No harm in hanging around for an extra day or two, if necessary, in one of my favorite areas! (With this disease, you have to take time to enjoy every opportunity that crosses your path!)

My visit with Dr Paquette was really worth the effort; should know if his treatment plan was effective in the next 2 months or so.

[Zoe's Life]

I am going with my mom. I hope to get to meet some folks from the board. I have to reveal a deep, dark secret though. I feel funny having to do this. When I join boards I use a fake name because I am not sure what I am getting into at the beginning. I did that here, and now after all this time I have kept using the name Zoe (who is actually one of my dogs ) The phrase Zoe's Life is a play on words, as Zoe is Greek for abundant life--that's why I named my dog Zoe. Real name is Barb. Anyway, there is my little secret, and I feel safe enough to let folks know. I have been thinking about the conference and meeting folks, which made me think about the name thing. If we have name tags, maybe I should put Barb--aka Zoe.

Barb--aka Zoe

[Ruth Cuadra]

I'm glad you feel comfortable enough to "reveal" yourself to us, Zoe You're right to be cautious online. It will be great to meet you and your mom.

For everyone who is planning to attend the conference: don't forget that we're having a get-together for all the Marrowforums folks on Monday evening. Details are here and will be in the conference program.

See you soon,
Ruth

[Harold P]

Hi,
My husband, Pete, who was diagnosed with secondary MDS 2/08, & I are going to attend the conference. Please let me know the names of all of you that are going to attend & we will try to find you. Thanks.

Pete & Sandy Peterson

[Margie]

I have decided to go to the conference if the option is still open and I can get a flight. I need to check somewhere to see what airport to use.

[Margie]

OOPs! I should have known I could go sooner. There are no more rooms.

[Ruth Cuadra]

Margie,

I know they are still accepting registrations for the conference, but if the Crystal City Marriott is now full, you might consider the Radisson Hotel at 2020 Jefferson Davis Hwy, which is just next door.

Hope to see you in DC.

Ruth

[Anne-Marie]

I found out too late about this conference.

Bill, were you able to see Dr Young?

can someone share the highlights for MDS

All the best

[Hawaii Bill]

I still have not signed up for the conference, as getting in to see Dr Young really makes it worth the exhorbitant airfares.

I spoke with Dr Young's staff, got a list of records he wants to see, and called my doc to have the items faxed. Once Dr Young sees the records, he will determine if he will evaluate my case even further. I might get to see him on my birthday, Aug 1st.

[Harold P]

Hi to all attending the conference,
Pete (Harold) & Sandy Peterson are our names & we are very anxious to meet anyone who is going to attend the conference. I will plan to look up Ruth & Neil Cuadra, & Barb. Barb if you don't feel comfortable providing your last name then please look us up. We will have our cell phone on. My cell number is 515-710-4999. If we don't anwer please leave us a messge with your room number. I would welcome all who are planning to attend to look us up through our room at the hotel or via our cell phone. I will be happy to share what I learn & provide any handouts to anyone interested that will not be able to attend. Our thoughts & prayers are with all you diagnosed with MDS or AML & your families.

Sincerely,
Pete & Sandy Peterson

[Margie]

Thank you Ruth for the information about the Radisson Hotel. I did book a room there, but I won't know until tomorrow when I see the doctor if it is feasible for me to go. My white count is low enough that I know I should not travel by plane or get into crowded conditions where I can't move away from someone with a cold or something. What do the rest of you do about travel with low neutrophil counts? Harold, I would certainly like to have any materials possible from the conference if I cannot attend. I think am looking forward to our Monday night meeting most of all.

[Neil Cuadra]

There were some comments about the risks of airplanes in a Flying thread here in 2006. (No, I don't remember every thread at Marrowforums. I used the Search page!)

Each year, people at risk of infection and coming from far away may want to wear a mask on an airplane. People within driving range may consider that to be safer than flying. And those at highest risk may decide not to attend. It's a practical question for each patient with low neutrophils and worth asking the doctor about.

[chris]

Hello everyone,

I volunteer for the Aplastic Anemia & Myelodysplasia Association of Canada and this will be my first year at the conference. I've heard great things from patients and family members who have gone to past conferences and am really looking forward to it. I wonder if there are any other Canadians on marrowforums who are planning to attend?

Chris.

[Hawaii Bill]

Found out today that I could see Dr Young at NIH.

So I am going to the conference too. It will be nice to meet folks!!!

[Margie]

I will also be at the conference. See you there.