My NIH Experience

Betsydoglover · March 2006

Hi all -

Today I completed 3 days of testing and consultation at NIH for purposes of evaluating me for participation in a Stage I trial involving RFA and the delivery of a heat activated liposome encapsulated chemo drug (doxyrubicin) directly to the liver. (Note to Claudia - Libutti is the PI - Brad Wood is the interventional radiologist who actually does the RFA).

Anyway, I had enough blood drawn to make me anemic, had EKG, chest x-ray, PET/CT, CT scans, and dynamic MRI (MRI with contrast).

Today I spoke with 3 docs at NIH. The good news is that my CT, MRI and PET all show NO sign of liver disease! When they put my PET and CT together, however, there is an area that is "slightly brighter" in the left liver lobe near the stomach. Their conclusion after much rumination is that it is 75% likely to be normal stomach wall activity (has something to do with the attenuation correction of the PET using CT and the stomach having moved (since stomach pretty much moves all the time).

So, I at this moment am not eligible for the trial. But what a great way NOT to be eligible! And, they want to follow me. So, they will repeat the tests in a month and if something shows up, we'll do something. And if nothing shows up they will keep watching. And if something shows up and the trial is "filled up" at that time, they still do continuing studies of RFA for liver tumors, so they will treat me if that seems like an appropriate treatment.

So, for now I have even more future test anxiety to live through than I expected, but it also sounds as good as it gets. And BIG BONUS I won't have to fight any more with my insurance company about paying for PETs (they still haven't paid for my December PET or my February PET - keep asking for more justification).

So, after these three days I feel even more NED than I did before! Still have that damn sword of Damocles hanging over my head, however.

P.S. NIH is a quality place. I feel in good hands and given I will still be seeing my regular oncologist, it looks like I have a good shot at more the one opinion on a regular basis.

Betsy

spongebob · March 2006

"Sword of Damocles hanging over my head" - I haven't heard that phrase since the last time I saw the Rocky Horror Picture Show - how apropos that I should read it on a Friday evening!

Congrats on your NED liver! Party - in fact go to the midnight showing of Rocky Horror - does it still play in Georgetown? Since yuo're over at NIH, we should meet up and see it together!! I promise I won't wear my fishnet stockings and corset...

Cheers!

- SpongeBrad

PS - if your reference to the sword of Damocles is purely biblical and you have no idea what I'm talking about, just focus on the "Congrats" part of this post - that's the most important part anyway!

pink05 · March 2006

Betsy,

That's great news!!!

I don't know too much about your history, but I'm just curious...was there some suspicion of liver disease before the most recent scans you had?

Also, this may sound like a dumb question, but what does NIH stand for?

-Lee-

Betsydoglover · March 2006

spongebob said:
"Sword of Damocles hanging over my head" - I haven't heard that phrase since the last time I saw the Rocky Horror Picture Show - how apropos that I should read it on a Friday evening!

Congrats on your NED liver! Party - in fact go to the midnight showing of Rocky Horror - does it still play in Georgetown? Since yuo're over at NIH, we should meet up and see it together!! I promise I won't wear my fishnet stockings and corset...

Cheers!

- SpongeBrad

PS - if your reference to the sword of Damocles is purely biblical and you have no idea what I'm talking about, just focus on the "Congrats" part of this post - that's the most important part anyway!

Sponge -

MANY years ago I went to one of the first midnight showings of Rocky Horror etc at a theater in the Montrose area of Houston (where I lived at the time).

However, I also have a classical background and so my "sword" reference is more related to classical mythology. And also to a conversation I had today at NIH with a clinical social worker there.

Getting together would be great - although I think I could do without the fishnet and corset!

Betsy

Betsydoglover · March 2006

pink05 said:
Betsy,

That's great news!!!

I don't know too much about your history, but I'm just curious...was there some suspicion of liver disease before the most recent scans you had?

Also, this may sound like a dumb question, but what does NIH stand for?

-Lee-

Lee -

NIH = National Institutes of Health (http://www.nih.gov) - made up of many institutes studying and helping to treat many diseases, One of the institutes, National Cancer Institute (NCI) studies and treats many cancers. It is part of the Department of Health and Human Services and is essentially a research facility. The main campus in Bethesda MD conducts much medical research and they run clinical trials at various locations throughout the contry and centered at their Bethesda MD campus.

You should search for info about NIH and NCI to become informed about clinical trials etc. Where do you live?

Good luck.

P.S. Diagnosis 5/05, probably Stage IV based upon CT, sugery 6/05, confirmed Stage IV with one liver met, 6 cycles of chemo, excellent response. PET/CT almost completely OK after 2 cycles, negative after cycle 6 and 2 months later. And again as reported by NIH today.

Good luck!

ccartwri · March 2006

Betsy
I am glad you had a positive experience at NIH. Libutti is so wonderful. Isn't Brad a cutie pie? They are both very good at what they do. Did Geoff Seidel arrange everything for you? I am so glad you are still NED and have further confirmation of that. I did not realize Steve Libutti was doing a stufy on RFA. He is the Liver guy.
Claudia

Betsydoglover · March 2006

ccartwri said:
Betsy
I am glad you had a positive experience at NIH. Libutti is so wonderful. Isn't Brad a cutie pie? They are both very good at what they do. Did Geoff Seidel arrange everything for you? I am so glad you are still NED and have further confirmation of that. I did not realize Steve Libutti was doing a stufy on RFA. He is the Liver guy.
Claudia

Hi Claudia -

Yes, Brad is GORGEOUS! Really!

I met Geoff, but Michelle Eugeni actually arranged everything for me - she is wonderful, organized, good communicator etc, - I have the feeling she may work for Geoff, but I could be wrong.

Betsy

kangatoo · March 2006

Betsydoglover said:
Hi Claudia -

Yes, Brad is GORGEOUS! Really!

I met Geoff, but Michelle Eugeni actually arranged everything for me - she is wonderful, organized, good communicator etc, - I have the feeling she may work for Geoff, but I could be wrong.

Betsy

Hi Betsy...good to hear that some things are working out for you and we hope that you continue to get the best possible news.
I hate hearing about you guys having to battle insurance issues. One would think that logically it is far better to spend a few dollars now in prevention than 1,000's later to cure something that could well have been nipped in the bud. Pretty much false economy if you ask me. Of course we all know it revolves around who is making how much.....such a shame that priorities are so lost in medical politics.
All the best from oz, Ross and Jen

Betsydoglover · March 2006

ccartwri said:
Betsy
I am glad you had a positive experience at NIH. Libutti is so wonderful. Isn't Brad a cutie pie? They are both very good at what they do. Did Geoff Seidel arrange everything for you? I am so glad you are still NED and have further confirmation of that. I did not realize Steve Libutti was doing a stufy on RFA. He is the Liver guy.
Claudia

Claudia - one more response.

The study Libutti is conducting is a Stage I trial involving RFA to liver tumors, but with the addition of a chemo drug. The chemo drug - good old fashioned doxyrubicin - is "micro-encapsulated" with liposomes. That's apparently been done before, but the twist here is that the the liposomes are designed such that they are heat activated. Thus, in theory, there are few systemic side effects. The drug is administered into systemic circulation, reaches the liver, the RFA is done and the heat "activates" the drug so that it attacks the liver tumor. Idea is that while ablated tumors recur about 40% of the time, administration of chemo directly to the tumor during ablation, may reduce the recurrence rate. Being Stage I trial, it of course is really just investigating side effects. But, since the RFA has been around a while and the doxyrubicin is an old drug, only the liposome encapsulation is truly investigational. And even if I never make it into this trial, as part of NIH's mission to study disease, they will treat me with conventional RFA alone if that ever becomes necessary.

So, Brad (that cutie-pie) says they have done RFA on about 300 patients. If I end up having to go that route, it's great to know I am in good hands.

Betsy

pink05 · March 2006

Betsydoglover said:
Lee -

NIH = National Institutes of Health (http://www.nih.gov) - made up of many institutes studying and helping to treat many diseases, One of the institutes, National Cancer Institute (NCI) studies and treats many cancers. It is part of the Department of Health and Human Services and is essentially a research facility. The main campus in Bethesda MD conducts much medical research and they run clinical trials at various locations throughout the contry and centered at their Bethesda MD campus.

You should search for info about NIH and NCI to become informed about clinical trials etc. Where do you live?

Good luck.

P.S. Diagnosis 5/05, probably Stage IV based upon CT, sugery 6/05, confirmed Stage IV with one liver met, 6 cycles of chemo, excellent response. PET/CT almost completely OK after 2 cycles, negative after cycle 6 and 2 months later. And again as reported by NIH today.

Good luck!

Betsy,

Thanks, I will do a search for the NIH. We live in Buffalo, NY and my dad is currently being treated at Roswell Park Cancer Institute.

Thanks again!!!

ccartwri · March 2006

Betsydoglover said:
Claudia - one more response.

The study Libutti is conducting is a Stage I trial involving RFA to liver tumors, but with the addition of a chemo drug. The chemo drug - good old fashioned doxyrubicin - is "micro-encapsulated" with liposomes. That's apparently been done before, but the twist here is that the the liposomes are designed such that they are heat activated. Thus, in theory, there are few systemic side effects. The drug is administered into systemic circulation, reaches the liver, the RFA is done and the heat "activates" the drug so that it attacks the liver tumor. Idea is that while ablated tumors recur about 40% of the time, administration of chemo directly to the tumor during ablation, may reduce the recurrence rate. Being Stage I trial, it of course is really just investigating side effects. But, since the RFA has been around a while and the doxyrubicin is an old drug, only the liposome encapsulation is truly investigational. And even if I never make it into this trial, as part of NIH's mission to study disease, they will treat me with conventional RFA alone if that ever becomes necessary.

So, Brad (that cutie-pie) says they have done RFA on about 300 patients. If I end up having to go that route, it's great to know I am in good hands.

Betsy

Betsy
That is so interesting!!!
My funny story about Brad is that he was the interventional radiologist who injected my rectal tumor under sedation once a week for five weeks. I was so devastated by my diagnosis and dealing with a lot but I still had the vanity to be a teeny wee bit embarrassed because he was so handsome! my husband thought it was very silly!
claudia

My NIH Experience

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