NIH called me!

[Snowcone16]

A very nice nurse personally called me from the National Cancer Institute just moments ago. It’s interesting because you hear bits and pieces and I guess you have to pull it altogether. I emailed Dr. Rosenberg on Tuesday requesting to participate.

*40 people are in this trial with 3 showing results. Still early...

*I am currently on a therapy and it’s unknown if it works or not. They are seeking those that have NOT had success with a line of treatment

*it requires a solid tumor 1-2mm and probably w organ, lung or brain involved. I am in my bones and a spot on scalp.

I thanked her for the work she was doing (it seemed to make her day!). Told her that this news gave a bunch of us hope that we will see a cure in this lifetime.

❤️

[Snowcone16]

Also I follow Metavivor Research on FB. Another new med out there! I know most have heard the link between sugar and cancer. This, I believe, is a diabetic drug that treats I-BET-762. It’s so interesting the off label successes w drugs no matter what the original intent.

More info google: C-Myc and I-BET-762

[Snowcone16 in reply to Snowcone16]

I am not sure if it’s only relative to lung..more to review

[blms]

I live right next to NIH and know many docs there because of the community for so many years. I can tell everyone that NIH has many trials all the time and it is always prudent to check them out, know what you may qualify for, etc. These are always considerations, especially when your treatment is not optimal at any given time.

[SeattleMom]

Thanks so much for updating all of us! Hope abounds! XO

[RomanChariot]

Good for you, Snowcone! You took the initiative!

[Clair19]

I forgot to tell you! I wrote Dr. Rosenburg but never heard anything back. You where very lucky to get a response. My husband composed the letter and it sounded very good, but never got a call back. Might be my age. I always use that. Your so young to bad they would not consider you. I think it would heal you and you could have a great outlook. I don’t understand just because your on medicine for stage 4 at your age why wait. I understand she had 2 weeks to live but I think that was her last chance. I don’t believe they should pick you on that. They must understand what a huge burden we are going through. I say just because someone is basically healthy and responding well should still qualify for this trial.

[Snowcone16 in reply to Clair19]

I used the email address on the NIH site. His nurse called me back. I guess they have to prioritize people who have failed one therapy PLUS they needed a solid tumor. Guess they dissect it and work with it. My Mets are bone and spot on scalp.

[Lordmandy in reply to Snowcone16]

Solid tumor needed because They need to measure to track effectiveness.

[Snowcone16 in reply to Clair19]

I think you’re definitely a candidate. I would definitely try again. You’re young too —but age wasn’t listed in the criteria on the website.

I heard back the same week but there were tons of people talking about it that week. They could be backlogged.

Sweet husband to write a letter. It’s a blessing our husbands are supportive. I’ll never take that for granted.