Monday, August 10, 2009

NIH to Me: Your doctor is wrong!

I got my phone call from Dr Hong at NIH. Ready for this? They disagree with Dr Sharfman's finding of tumor progression. There are obvious signs of progression in some cases, but there are more reasons to believe that the IL2 was actually working. It's all about timing and specifically how long will it take for the immune system to setup a response as a result of the treatment. They want me to begin another course right away. There is one problem with that, Dr Sharfman is on vacation and apparently cannot be contacted.

Since the initial meeting an NIH, I've been in contact with the Gerson Institute to figure out what updated medical records they need from me in order to re-qualify me for treatment. They wanted updated blood work since the previous report indicated high liver enzyme levels. Though this sounded pretty good to me, I did a little research. High liver enzyme levels indicate a poorly functioning liver. I looked back at the paperwork that I sent them, I believe I sent them blood count while I was on the IL-2. No wonder they we're high. Those counts make me appear almost dead.

I've been calling around all day today to try and get more blood work drawn so that I can get an updated result. In speaking with Dr Hong, I asked about the blood work they had taken while at NIH. She told me that they took a complete history and well now those results are being faxed over. I'm eager to see what my levels are considering that I've been eating nothing but organic food - no meat and no alcohol for the past several months. I'll let you know!

3 comments:

dougsmoonbaby said...

Well Mike, it seems like your opinion as far as the tumor progression was right on! That's great news. When is your doctor expected back in town to get the Il2 started again? Why are they always away when you really need to get things going?

Hang in there!

Mike Brockey said...

Thanks Ellen for all your support! I think he is due back in another week or so. I know the docs from NIH are attempting to reach out to him now. I also meet with my original oncologist Dr Boisvert at WHC tomorrow for my 3 month checkup. It has been recommended that I get all parties involved back in communication by starting sort of furry of phone calls. Maybe see if I can force them all to get on a conference call and talk about my case. I'll do my best! ;-)

dougsmoonbaby said...

No doubt in my mind that you'll do your best. Make a pain in the ass of yourself if necessary!

As busy as the doctors are, they will be able to manage a conference call. Do they all have a cancer board meeting on the same day, perhaps? If so, others on the team at each facility can also put in their two cents.

You numbers look good to begin another round, so the faster you can get things moving along, the better.

Ellen