Kelly, northern VA, new MDS dx

[kmiller]

I posted in the tell your story section as well; still learning how to navigate around! Just diagnosed w/MDS, RAEB 1, trisomy 8 and planning to meet with Dr. Gore at Hopkins and open to other ideas for good doctors, centers for MDS near me. Thanks!

[Steve P]

Kelly-
Well I suspect you like I feel that we have a lot to learn. Let's stay in touch and share what we can as that seems the best way. I am meeting with Gore in early December. Certainly there are people on the site who can help us along also. Good luck & stay positive!
Steve

[Steve P]

Kelly-
Forgot to mention that Gore is very busy and they sort of put you through a routine at JH but don't get discouraged. I think my appointment was 3 weeks away when scheduled but Gore actually called me 2 days after I inquired about seeing him. One thing he does want are the actual slides from bone marrrow work. Also want complete history to date so it pays to start putting that all together earlier rather that later. Just FYI-
Steve

[choijk]

Kelly and Steve,
Dr. Gore is the guru on MDS. You will be in great hands. I had the opportunity to hear him speak at the MDS convention that was held in Las Vegas earlier this year (in August). I would love to take my father to Dr. Gore if I had the chance. Unfortunately, we live all the way out in CA. Please keep us updated. God bless.

[kmiller]

Originally Posted by choijk

Kelly and Steve,
Dr. Gore is the guru on MDS. You will be in great hands. I had the opportunity to hear him speak at the MDS convention that was held in Las Vegas earlier this year (in August). I would love to take my father to Dr. Gore if I had the chance. Unfortunately, we live all the way out in CA. Please keep us updated. God bless.

Thanks for the feedback on Dr. Gore; looks like I'll be seeing his colleagues on Dec. 13th. Best of luck to you and your father. Kelly

[Steve P]

Kelly I saw Gore and he is a very nice guy who will spend whatever time you need and answer anything you ask. I met for a full hour with him and for an additional hour with his associate, a fellow from Ireland. The entire experience at the Kimmel Cancer Center is extremely professional and they are really focused on the patients. A very positive visit and experience.

[kmiller]

Steve, thanks for the feedback; glad thing things went well. I'm going to Hopkins tomorrow morning. We're actually meeting with Dr. Jones, who is a colleague of Dr. Gore's. Did they have any treatment suggestions for you? Are you seeing other doctors? Remind me of your diagnosis? Best, Kelly

[Steve P]

Kelly,
Hope your visit to Hopkins went well or as well as you expected. I was diagnosed with low grade MDS RA with Multilineal Dysplasia. Interesting enough Gore looked at my bone marrow slides and doesn't necessarily agree with the Dysplasia portion. He ordered a couple of more tests and actually said that I may not have MDS but something else closely related. Results back in about a week. Said that it was a little unusual that the only thing he is seeing with me are the very low platelet counts while everything else is at or close to nomal.
As far as treatments I'm trying to get into a NIH phase 2 trial for something new that Amgen is testing that is specific to platelets. Gore said he had heard good things about it and he was the one that actually told me about it. My doc in Phila also agreed. If I don't get into trial then Gore has suggested something else and basically told me that what the doc in Philly suggested next was not going to anything but waste 3 months. Been there and done that - so I guess I'll have to make some decisions about that in the not to distant future - but going for the trial right now.
The way I look at it now I really think you need to be at a teaching and research hospital with the best people available. If I can end up at Penn and Hopkins I certainly think I'll be in good hands and they will be aware of anything cutting edge. Penn is doing a ton of work on stem cells and devouting lots of resources.
The one very obvious thing to me - we have to be informed and we have to manage what's next. The Docs even the the good ones don't have all of the answers. Maybe soon but not right this moment. Hope you are doing well!

[KellyDIL]

Steve P

I read your last post about Dr. Gore not being sure about your exact diagnosis. My mother-in-law sounds similar to your case. What was your final diagnosis and I hope you are doing well!

Kelly, Daughter-in-Law to Mother with Severe AA