[Stan W.]

Re: My visit to NIH

by Stan W. on Mon Sep 10, 2012 1:50 pm

mrsv118 wrote:
> I'm going to NIH in October for my first visit. So nice to hear everyone
> seems to have a good experience. I'm hoping to go into the natural history
> study and learning more about my options.

Good Luck.
They're all great at NIH. I met with Dr. Rochewski.
Only thing that confused me was the differing in criteria that they had compared to my specialist at Mt. Sinai in NYC.
If you get a BMB make sure you have George do it. I've had two done by other doctors in NYC. George was by far the least painful.

[elizabeth104]

Re: My visit to NIH

by elizabeth104 on Thu Sep 13, 2012 9:48 pm

What is the benefit of entrolling in the MGUS/SMM Natural History Study at the NIH vs. being treated at a top cancer center such as MD Anderson, Mayo Clinic, Dana-Farber, etc.? Or, do you enroll in the study but still go to your original hem./onc. cancer center in the interim?

Sorry if these are dumb questions but I am interested in the study but not entirely sure how it works...

[Stan W.]

Re: My visit to NIH

by Stan W. on Thu Sep 13, 2012 10:10 pm

The NIH Natural History Study is a study to track the progression of the disease.
They also have a few clinical trials for those who qualify (high risk SMM).
It's all about research at the NIH.
I'm in the Natural History Study. But, I have a local oncologist/hematologist. And, Dr. Jagannath at Mt. Sinai in NYC is my Myeloma Specialist. They all share info. My oncologist is following Dr. Jagannath's lead.
I'm involved in a clinical trial called BHQ880 with Dr. Jagannath. It's a bone strengthening human anti-body that may also stop myeloma cells from progressing in the bone marrow.
Go with whomever you feel comfortable with. I didn't want to just "watch & wait". I did the research and formed my own "team".

[terryl1]

Re: My visit to NIH

by terryl1 on Fri Sep 14, 2012 9:42 am

Hi Elizabeth, I would echo what Stan outlined. I was diagnosed last summer with smoldering myeloma and entered the NIH Natural History study. I was also concurrently monitored at home at a major cancer center. The benefit of the NIH, even if you are not treated there, is that you get a thorough and free diagnostic work up and a second opinion by Dr. Landgren and his team. He can share that info. with your local expert whom he probably knows. The NIH also has several cutting edge clinical trials which may be available to people with SMM (high risk for progression) and the newly diagnosed. When I progressed to active myeloma this April, I chose to be treated at the NIH in the carfilzomib trial for newly diagnosed. It is one of only two trials, I believe, in the US for newly diagnosed using carfilzomib. I am doing fine but only time will tell since the trial is so novel.

[elizabeth104]

Re: My visit to NIH

by elizabeth104 on Sun Sep 16, 2012 8:28 pm

Thanks so much for the information Terry and Stan, I really appreciate it. I would love to go there to get a second opinion and join the study. However, I live close to Boston and that would be pretty far to travel over the next 5 years.

[angiebaldy]

Re: My visit to NIH

by angiebaldy on Mon Sep 17, 2012 3:55 pm

Elizabeth

If you are seriously thinking of the Natural Progression Study at the NIH, then you will want to go ahead and apply.

I sent them all of my records in July and was told just last week that they have a 6-9 month waiting list which I am now on. Hope this helps!


Angie

[elizabeth104]

Re: My visit to NIH

by elizabeth104 on Mon Sep 17, 2012 4:40 pm

Thanks for the information, Angie! Yikes, 6-9 months that is nuts...

I emailed Marcia Mulquin and she said I need to fax my info over... I guess I better get on that ASAP!

[angiebaldy]

Re: My visit to NIH

by angiebaldy on Mon Sep 17, 2012 5:45 pm

I too received an almost immediate e-mail asking for my labs, x-rays, bone marrow biopsy, etc. which I faxed to her within about 3 or 4 days. After about 6 weeks of not hearing anything I e-mailed her several times to let me know if there was a need or should I no longer worry about it. I finally received a return e- mail like I said last week advising me there is a 6-9 month waiting list, but I have been placed on the list. I was surprised because many others on here have gone within a couple of months.

Good Luck!!!


Angie

[mrsv118]

Re: My visit to NIH

by mrsv118 on Tue Sep 18, 2012 9:08 am

I just received the information for my appointment at the end of Oct. I was lucky to get in to the Natural history study it sounds like. From the information they sent me the Natural history study can only have 159 patients in it so I guess they are pretty much there and can only add people as patients drop off.

Good luck.

[elizabeth104]

Re: My visit to NIH

by elizabeth104 on Tue Sep 18, 2012 9:53 pm

Thanks so much for the information Angie and Kate!

On Sunday night I sent an email to the two email addresses listed on the clinicaltrials.gov page that has information re: the study. I got an email from Marcia Mulquin on Monday saying to fax my information over to the team.

And then, tonight, I got an email from Dr. Langdren (I guess that was the other email address I sent the original message to!) saying that he was going to have Mark Roschewski get in touch with me re: the study...and like a half hour later I got an email from Mark saying that they would love for me to particpate in the trial and would be able to discuss the details of the trial over the phone on Thursday or Friday.

I am totally impressed with how quickly all of these people have responded!

Anyway, I know that there is a 6-9 month wait, but I am looking forward to getting some of my questions answered in the meantime.