Sutent didnt work.....

[NS8000]

well everyone... for those following myself and sutent, it did not work for my pathology or something went really wrong. In the 2 weeks off sutent my BHCG went from 2000 to 23000 then 4 days later it was at 43000, but my AFP is normal. So, i'm no longer going to Russia and Africa to climb, i'm heading in for my first ever BEP cycle on monday July 30th (my 10th Chemo so far) so this should be a bundle of fun! Although i've heard BEP's are vastly easier than VeIP and VIP cycles. Well take care everyone! I'll give an update on the difference between cycles when I can stare at a computer monitor again!

P.S.... It sucks that I no longer have a Central line! Back to good old fashioned IV's for everything

[Lori]

I'm sorry to hear the news. Good luck with the start of BEP and keep us posted. we are thinking of you!

[dadmo]

NS8000:
Well that stinks. Where are you beinmg treated? Don't forget that I'm counting on your help to get my old busted self up Mt. Rainier.

[NS8000]

i've had all 10 treatments and all the other fun and games done at the Tom Baker Cancer Center, in Calgary, Alberta, Canada. (Also known as the Foothills Hosptial). I call it my place of work

[dadmo]

Calling it work doesn't do justice to how difficult treatment can be. It's more like a week of hard labor with two off for good behavior times how every many cycles.

[Karen]

NS8000,
I'm sorry to hear that about Sutent...and the postponed climbs. Please keep us posted on the BEP. You are one tough fighter and we're pulling for you all the way!!!
Hugs,
Karen

[Scott]

Hang in there. I'd also suggest joining the TC-NET mailing list for additional support in your fight.

[boyce]

That Mountain

Is right there....waiting to be scaled by a cancer free you!

I almost (almost!) feel sorry for that cancer that dares to invade you. It doesn't know what it's in for.

Commit, Endure, Survive!!

[Fed]

Hey Man,
It's a damned shame that sutent didn't do the trick. Has there been any monitoring other than HCG levels to see where the beast is located? You have been through a lot, and yet I can still feel you strength through your posts. Best of luck with the BEP. You have a huge family here waiting for you to make this next climb.

[Already Bald]

Tough news.
Keep us posted on your BEP protocal.

[dbo]

Very sorry to hear.

Hallo Nikki,

It really sucks what has happened, I looked at your website last week to see if there was anything on your trip. I saw everything was organized to go.

On your previous message you indicated that your dr's though your CT showed bleeding of the tumor cells (while on sutent).
Was that an incorrect conclusion?
Was the fast rising HCG the only reason to stop with your sutent trial?

I really hope that you will do better on the BEP.

>P.S.... It sucks that I no longer have a Central line!
>Back to good old fashioned IV's for everything.

They can always put in a new one if you insist.
But the old fashioned IV's have the advantage of not having a risk of creating serious troubles. (infection, blood clots etc.)

Regards
David

[dannysbrother]

Nikki,

Very sorry to hear about this. I am wishing you better progress and success on BEP.

dbo, I sent you a private message regarding the study that Danny is currently on at Sloan-Kettering. You might qualify for this. Nikki, this might be something that you want to look into as well.

Here is the link to the clinical trial.

http://www.mskcc.org/mskcc/html/2270.cfm?TAB=All&IRBNO=03-146&SelectedDisease=All

Wishing you well,
Michael

[sldl1106]

I'm so sorry to hear about the sutent and your delayed plans.

Good luck with the BEP, I hope it goes easily for you.

[NS8000]

Thanks for the support everyone!!!!

In regards to figuring out what went wrong. The BEP is just to make sure that nothing major is going wrong in reference to the cancer in my body. In the wait period after they will try to figure out what happened. The current best idea floating around with the doctors is that the Sutent demolished all the tumors but left behind the germ cells. I've got no idea what exactly this means, but it apparently is positive and negative. Another leading argument is that the mass breakup of my tumors in my lungs has artificially increased the BHCG levels in my system. I got to mention, i'm no doctor and dont pretend to be one! And of course, the bad idea argument is that sutent did not do anything in anyway to the cancer cells. Guess only time will tell!

Thanks agian!

Niki

[Fed]

The current best idea floating around with the doctors is that the Sutent demolished all the tumors but left behind the germ cells.

This argument is perfectly reasonable. Germ cells are very undifferentiated, so it is likely that they don't produce the tyrosine kinase Sutent is meant to target. The good thing is that you hit the cells that have "evolved" and spread out; the bad thing is that you may be leaving behind the cells that caused this chaos to begin with. The only problem with this argument is that it will be difficult to prove unless you actually do cell-based work on this in the lab.

Another leading argument is that the mass breakup of my tumors in my lungs has artificially increased the BHCG levels in my system.

That is also possible, and this argument can be verified by bloodwork: if the bHCG levels go down in accordance to their half-life, then this hypothesis will hold.

If anything, the BEP combo is less specific than Sutent, so everything will take a hit. In essence, you're covering more space here, so if, in fact, germ cells were left behind, BEP should do the trick.

Hope this helps clear things up.