NIH trial – still working!

Hi SDAS,

I know everyone is different in their religious beliefs and everyone has that right. When I say God bless I mean it as a caring thought. I sometimes say I will pray for this or that to a person and I do say a prayer for that person because that is what I believe is a kind, caring thing to do. I do not mean it in any way other than to offer comfort and caring. So, if I ever say God bless or I will pray for you, please don’t be offended. I am with Lainy in that I would never discuss politics or religion on the internet. It starts up arguments quicker than the blink of an eye. On a different note, I would like to say that I am very sorry to hear of the passing of your dear friend.

-Pam

Thanks PCL1029, my intention was to provide this information so that one could indeed make an informed decision on these clinical trials. Although nothing except the Gem/Ox treatment worked, this clinical trial was rather painful for Alok who had to stay at the NIH facility in Bethesda for 3 weeks.

(Please feel free to delete this sentence after reading it if inappropriate: Both Alok and I are firm atheists, and I was surprised how Alok stuck to science & reason throughout this ordeal. With your permission, may I post something to help our fellow atheists during similar trying circumstances? I will also have to ask Alok’s spouse, Nidhi, who is a firm believer, if she agrees. Apologies to others in advance as I well understand that most of us would place our faiths in divinity.)

Hi Melinda,

I am so happy for you.

Tragically, my friend Alok (Dr. Alok Bhandari), who was only the second person diagnosed with CC, to undergo this very same NIH phase-2 trial treatment, passed away on January 30 2013.

The treatment did not work in his case. After undergoing the treatment, Alok never managed to return to Bethesda, MD for his first follow-up CT scan. His scans had to be done locally at Manhattan, KS as his health deteriorated so rapidly. By then, the cancer, which had spread all over, was terminal. Alok remained with us for 8-9 weeks after that before succumbing to the monstrous disease exactly 2 weeks ago. We had such high hopes…..

Looks like there were some differences between your situation and his. Alok’s CC was distal (in fact very close to the pancreas). He could not undergo a whipple procedure as the tumor was unresectable. Then of course every case is so different. Overall, a 50% success rate looks promising.

I hope that you continue posting good news here for a long long time.

Sanjoy

PS: What worked best for Alok was another treatment based on Gem/Ox+Erbitux which was undergoing phase-3 trial back in 2011:[list=*]
[*]Gruenberger et al. “Cetuximab, gemcitabine, and oxaliplatin in patients with unresectable advanced or metastatic biliary tract cancer: a phase 2 study,” Lancet Oncol. 11(12), Dec 2010.[/*]
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Hi Melinda! This is wonderful news for everyone! This was the trial that I was researching for my brother Bruce…and one that he desperately wanted to get into. Unfortunately, he was precluded from entering the trial due to one thing: the fluid retention in his abdomen. If only we had been able to convince him to go for the trial last July when he was “fluid-free.”

My advice and lessons learned from this is to move fast with entering a clinical trial. Don’t wait until it is too late and you are not physically able to be a part of it.

I believe, and my brother Bruce believed as well, that this particular trial holds great hope. If anyone here is interested in talking with Bethesda regarding viability for being part of this trial (they were still recruiting when I spoke with them in early January), the contact info is:

Contact: June Kryk, R.N. (301) 451-1929 ncisbirc@mail.nih.gov (I spoke with June multiple times.)
Contact: Steven A Rosenberg, M.D. (301) 496-4164 sar@mail.nih.gov

Links to more info on the trial:
http://clinicaltrials.gov/ct2/show/NCT01174121?term=cholangiocarcinoma&recr=Open&rank=48

http://www.cancer.gov/clinicaltrials/search/view?cdrid=683241&version=HealthProfessional&protocolsearchid=11144799

Wishing you all of the best! We are all cheering you on, Melinda!

God bless,

Patti

Melinda:
What wonderful news! Stable is a good thing! I love that word.
Prayers for continued “stability”.