Monday, August 31, 2009

Update from NIH regarding TIL and my case ...

I received a phone call today from Dr Hong at NIH. She was calling to get an update on my treatment plan. I told her about my intentions for the BRAF trial which hopefully opens in mid September, when I get back from Gerson. She told me that my case regularly comes up at their monday melanoma meeting. Today they decided that they wanted to put together a plan to reevaluate my case. They want me to call once I get evaluated at UPENN for their trial. If I am accepted I would wait until after the treatment to get results. It's nice to have options.

7 comments:

makinsr said...

That is great news. Did you tell Dr. Hong that you were going to the Gerson Clinic? I was curious as to what their take is on Gerson.

Mike Brockey said...

I have talked with my doctors before about the importance of nutrition and cancer. I try NOT to mention Gerson, when possible.

The closest that I have to support is by both Dr Boisvert and Dr Venna who have in fact recommended a healthy diet (in general) where my other doctors mainly focus on calorie intake. They would rather me bulk up and prepare myself for not eating while on their medication. There are real studies that show that nutrition does play an important role, but this is not part of the typical doctor's schooling. From what I understand, there are absolutely zero requirements for a doctor to take a course on nutrition. The basis of our health is not considered by the very people who are here to support us and make us healthy.

When I have brought up Gerson in the past, Dr Sharfman played ignorant while Dr Kirkwood at least acknowledged that it exists, but then quickly shoved it off.

Todd said...

Hey Mike, I'm glad I found your blog. My girlfriend, Agnieszka, is under the care of Dr. Hong at NIH for stage IV melanoma too. She had just completed her second round of IL-2 and is having some very interesting, site specific symptoms. 2 of her 4 masses are subdermal tumors...she also has one in her lung and one in her liver...but at the subdermal sites she is experiencing fever (hot to the touch), redness and pain...looks almost like a boil trying to pop up!! Have you heard of anyone else experiencing these type symptoms with IL-2 or is this just the normal progression of the disease. Any direction you could give would be great!!

Mike Brockey said...

Todd - I have not heard of this side effect. Is she getting both IL-2 and TIL? Maybe there is a connection/synergy with that combination. What are the doctors saying about it? Remember that fever is the body's way of healing so it is quite possible that her immune system is attempting to or is in the process of fighting off the malignant cells. Please send me an update when you know more, we would all love to hear about it.

Todd said...

Just IL-2...the team had actually identified her for a trial that genetically alters and then replaces her immune system, however, the High Dose IL-2 treatment was a requsite for that Phase III study. They are giving her other drugs prior to the onset of each treatment...so...TIL may be involved...She gets her therapy at NIH, so, since IL-2 is an approved therapy...maybe there is more!! I'll check...we are going up in a couple of weeks to do the pet...mri...the entire battery of tests to see what is next.

Todd said...

TIL therapy was started, a tumor was harvested, the TIL cells started to grow...then stopped. The Melanoma had invaded her liver and grew from a pea size to twice the size of her liver in about 6 weeks...I attend her funeral today. Mike, good luck with your recovery...Godspeed in your journey!!!

Mike Brockey said...

Todd, I am sorry to hear about Agnieszka. I hate this disease. It most unexpectedly ruins the lives of thousands of families everyday. Thank you for the update and your support.

Fuck Cancer,
Mike