Looking for treatment info for poorly differentiated neuroendocrine.

 

 I posted this in another forum but thought it might get more attention if I started a new thread.

This is my first time posting on here so I'll give the whole story and hopefully someone will respond with some good ideas or information.

I took my 31 year old wife to the ER Dec. of 2008 she was having right side abdominal pain.  After several tests and 6 days in the hosptial they found she had spots on the right side of her liver and ordered a needle biopsy.  We received a phone call from our Dr. on Dec. 26th saying she had adenocarcinoma that probably originated in the colon.  In Jan. 09 she had a colonoscopy which revealed the tumor about 3/4 way down her colon.  By that time we had an appointment in St. Louis at Barnes Wash U with a Liver surgeon to look at the possiblity of a liver/colon resection.  A day before our appointment at Wash/u the path came back from the colon stating the tumor was a small cell carcinoma.  Slides and tissue blocks were sent to the path department at Barnes and they determined she had a poorly differentiated high grade neuroendocrine carcinoma.  We saw a specialist at barnes and he started her on a regimen of carboplatin and etopiside.  After six weeks of treatment she had a CT which showed very little tumor shrinkage (tumor is too large in liver and too close to artery to resect).  We continued with the regimen and had another CT six weeks later which showed about 1cm of growth.  We got the impression that the oncologist at barnes had kind of given up on us so we were referred to Mayo clinic in rochester by our local oncologist. Mayo also did a path and agreed with the poorly diff. neuro.  Mayo suggested a regimen called folfoxiri which is a combo of 5fu, irronotecan and oxalaplatin.  After six weeks of this treatment (rough treatment)  no growth no shrinkage.  Our next step is to add avastin in with the current regimen. 

 I've read some replies about sutent.  Is this more promising than avastin? Has it been used on Neuro tumors.  This tumor doesn't express hormones or blood markers like other cancers.  Several Dr.s that have seen the path reports say that this is a very aggressive cancer because when they look at it under a microscope it is very vascular.  That is why I'm hoping the avastin will work.  I think it looks more aggressive under a micrscope than it actually is biologically in her body.

 Has anyone heard of genotyping being performed on NET's?

Has anyone tried Rad 001 for this type of cancer?

Yes, your wife has a very aggressive canzer and has had very aggressive chemo treatments.  I hope she is doing well with the chemo.  She is lucky to have such a caring husband.  Thank you from all of us 'survivors' for being a lovegiver (caregiver).  YOU are the true heroes.  The ones that stick through and fight through all of this when you have a choice.  We didn't, but you do.

 Does your wife have squamous cell carcinoma?  Just curious, I guess.  Anyway, I was diagnosed 8/07 at 43.  I'm stage IV with mets to the liver and celiac lymph nodes.  I progressed on folfox and folfiri (oxaliplatin and irinitecan) w/erbitux.  My liver tumors grew to the point that I had one pushing on the hepatic artery in a very scary way.  My radiation onc started external beam radiation and my chemo cocktail was changed to mitomycin c (used for anal canzer), xeloda and avastin.  It was a very rough regimen but my latest PET/CT shows No Evidence of Active Disease.  The 6 liver tumors that were radiated have shown full necrosis and the ones in the left lobe showing 0% uptake, as are the lymph nodes.  Go figure.  Even my oncologists are stunned. 

Has anyone talked about radiation?  I was considered for both external beam and stereotactic (cyberknife) and we decided from there which was best for my situation.  I don't know why that hasn't been discussed but I do know that some docs won't add any treatments other than chemo until your disease is stable.  In my case, I was 17 months in and was still not stable.  We HAD to do something. 

I hope this helps some.  I don't have any answers, nor do I have the same 'strain' of colon canzer.  But if you keep collecting info you'll know what questions to ask and just feel more confident sitting in front of the doctor.  It all helps.

Good Luck,

Kimby

 

Her cancer is only referred to as poorly differiniated neuroendocrine carcinoma.  I've asked the Dr's about radiation and there reply is that it's very difficult to radiate the liver.  Her tumor is fairly large and is occupying about 50% of her liver.  It is aprox. 13.5cm in size.  She started her folfoxiri regimen with avastin so at this point we are waiting six weeks to see what the addition of avastin will do.

I agree that waiting to see what happens with this chemo cocktail is a very wise idea.  I also agree that it can be difficult to radiate the liver.  If they don't feel skilled in that area, I wouldn't want THEM doing it.  It has saved my life.  In January the liver surgeon was giving me 3-6 months to live.  After liver radiation, the large tumor that was about to kill me is dying and I have no active canzer cells.  I am continuing chemo, but I have not had good success in the past with other chemo cocktails.  Radiation/Chemo therapy has created a miracle for me.  Don't quit searching for the answers because one doctor or team of doctors decides to quit.

Kimby