• From: Billings, Montana
  • Registered: Fri, 22 Oct 2010
  • Posts: 18

Topic: NIH trial - still working!

I returned last week from NIH with stable results. No change from scans done two months ago. I am happy with stable! I am even more happy that stable came without chemo!! They say as long as there is not growth - the cells are still doing their job. I go back in March for next checkup and will keep everyone posted.

I have really enjoyed talking with so many of you over the past few months, it has been great to put voices to names. It helps to share our stories, and I want to be able to help answer any questions that I can. My prayers are with each and everyone of you...stay strong, keep the faith and God Bless you!!

Lots of Love,
Melinda

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 774

Re: NIH trial - still working!

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

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,169

Re: NIH trial - still working!

Melinda...fantastic news.  This trial is still recruiting:
http://clinicaltrials.gov/ct2/results?t … rch=Search
I am wondering whether other Cholangiocarcinoma patients have joined?

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Registered: Sat, 28 May 2011
  • Posts: 65

Re: NIH trial - still working!

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/NCT0 … mp;rank=48

http://www.cancer.gov/clinicaltrials/se … d=11144799

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

God bless,

Patti

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 774

Re: NIH trial - still working!

Patti:
Thank you for the contact info. I will be meeting with my onc and surgeon again in early March and have not had treatment since radiation in July. I am getting nervous about the lack of treatment, although the last scan showed stability. I will talk to my surgeon and onc about this study and what their thoughts are.

Kris

Don't just have minutes in the day; have moments in time.

6 Reply by sdas (edited by sdas Thu, 14 Feb 2013 00:28:54)

  • sdas
  • New Member
  • Offline
  • From: Manhattan, KS
  • Registered: Mon, 07 Feb 2011
  • Posts: 13

Re: NIH trial - still working!

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:

  • 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.

sdas's Website

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: NIH trial - still working!

Hi,
The Gruenberger eta.trial as you mentioned above in 2010 is proven by the same team and an  article along with the session post remarks had been appeared in 2012 ASCO by this team indicated that Gemox+cetuximab is no better or superior than Gemox (gemcitabine+oxaliplatin) alone.

But thanks for your suggestion especially the observation of the current NIH clinical trial on TIL. You provide a different outcome of the trial and in this way provided us, the patients who want to join this clinical trialthink twice before making their final decisions.your contribution now and in the future to come will always be welcome.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • sdas
  • New Member
  • Offline
  • From: Manhattan, KS
  • Registered: Mon, 07 Feb 2011
  • Posts: 13

Re: NIH trial - still working!

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.)

sdas's Website

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: NIH trial - still working!

Dear SDAS, first I want to say how sorry I am about  Alok, he fought a valiant battle and is now at Peace. As for posting "religious" or "non religious" beliefs we do have many diversified beliefs here as we have Members of all religions the world over. Except for the mostly nondenominational caring statement of "God Bless" we tend to steer clear on this site from Religion and Politics. This is all about CC and religion is such a private matter. I hope other Moderators will join in on this. Again please accept my condolences on Alok.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: 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

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website