Everyone,

Thank you so much. Mira is a precocious kid - I've seen her grow up from the very day she was born. There is money with her to help out families of those diagnosed with CC.

Marion, please do call me. Unfortunately, as I am quite busy during weekdays with lectures, meetings, etc. there might not be enough time slots during the day for discussing with you. Weekends are fine too.

Also I haven't heard back from Amanda yet. I hope that it's because she might have obtained other means of travel.

Warmly,

Sanjoy

kris00j wrote:

Sanjay, what a wonderful thing!! Tell Miss Mira she is our hero!!

Thank you so much Kris, Yes, Mira is a truly wonderful kid! She turned 11 only a couple of months ago. I'll pass on your message to her right now.

[added later] Mira giggled over the phone and said "Thank you" to you.

mannaribbit wrote:

I'm looking for any resources anyone might have that may assist family members that live long distances from recently diagnosed patients. My father was just diagnosed with stage 4. He is in Oregon, I am in Georgia. I have 2 children, 12 & 13. We have not seen my dad, their grandpa for 6+ years.

Our finances are very, very tight. I want my dad and my kids to reconnect while he is still feeling ok. My children are his only grandchildren.

Any suggestions are greatly appreciated!

Dear Amanda,

I am so sorry to hear about your father's diagnosis.

My good friend passed away this January after a 2 year struggle from CC. His 11 year daughter Mira Bhandari has set up a website (not complete yet) where she has raised money for this sort of thing: engineers4cancer.org. There have been some donations made, and I think that there should be enough money for travel. She could help you with financial help for family travel. You can contact me and I'll help you get in touch with Mira. I sent an email to you with my tel #s.

Sanjoy

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.)

Mira Bhandari, age 10, a (very gifted) fifth grader at Frank V. Bergman Elementary School, Manhattan, KS has set up a website to help cancer patients:

http://engineers4cancer.org/

She is the daughter and only child of my dear friend, Prof. Alok Bhandari & his surviving spouse Nidhi. Alok passed away on Jan 30, 2013 after battling CC for 2 years.

When she grows up, Mira plans to be an engineer just like her papa, whom she loves and misses so much, was.

Warmly,

Sanjoy

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.

It is with a heavy heart that I am logging in. I decided to resurrect the very first thread that I started in this message board.

My good friend Alok passed away exactly a week ago. Alok - Dr. Alok Bhandari (age 44) was Professor & Chair of the Civil & Environmental Engineering Department at Kansas State University, an outstanding person, and my very close friend.
http://www.engg.ksu.edu/files/engg/imag … andari.jpg

Alok was the second person with CC to participate in this Phase II trial at the NIH: http://www.cancer.gov/clinicaltrials/se … d=11220695

Tragically it did not work. His first CT scan (Nov 2012) following the NIH treatment showed that the tumor had spread extensively to his lungs and liver. Alok's health started deteriorating rapidly shortly afterwards. He passed away last Wednesday, shortly after 12:00 PM. He suffered a great deal during his final two days.

Sanjoy Das

Dear Marions, Maria, and everyone else,

Al completed his 12th and last cycle of Erbitux+GemOx very early in September.

He had his follow-up PET scan done this week. His oncologist didn't have great news. It looks like the tumor (which was not noticeable around the middle of his chemo) is showing renewed activity in the PET scan. It has further metastized in one of the lungs, and also elsewhere close to an armpit (lymph?). sad

Thus, Al's treatment did keep the disease in abeyance for only this long - about 6-7 months.

We're not sure what else to do, as only 2-3 months back, we were certain that Al's chemo was working like a dream. Today's news was really disheartening. I'm beginning to learn to expect the unexpected when it comes to this horrible disease.

Any ideas what to expect? Any suggestions about other treatment options?

Meanwhile, as we/our loved ones journey through this tortuous path leading to somewhere unknown, I wish everyone else here the very very best. I'll keep you updated as things happen.

SDas

Thanks Marions for your kind words which mean a lot to me, my friend, and his family.

My friend has only 2 cycles of Gemox/Erbitux left. This targeted therapy is a part of a study that is being conducted in Austria [*]. As everyone here probably knows, Erbitux is the commercial name of Cetuximab, a monoclonal antibody.

Here is our story.


ABANDONED WHIPPLE:

My friend was diagnosed in January 2011 with distal CC. Initial tests suggested that the tumor was only at an incipient stage and that a Whipple would take care of it. We were very hopeful.

Unfortunately, our joy was short-lived. During the Whipple surgery at Sloan-Kettering, it was found that the tumor had spread quite a bit and infected the aorta. Thus, the surgeon abandoned the resection procedure.

Later, my friend opted for the GemOx/Erbitux treatment, based on the good results reported [*].


GEMOX/ERBITUX TARGETED THERAPY:

A CT scan before the GemOx/Erbitux chemotherapy began, did show activity in the lungs and neck, indicating the possibility of distal metastatis. Luckily, towards the middle of his treatment with GemOx/Erbitux, the lungs and liver did not show any more signs of tumor activity.

We were elated as the CA 19-9 marker plummeted from ~3000 to only 125. However, it seems to have settled at that level, instead of going below 60.

In short, the GemOx/Erbitux worked remarkably well, but the horrible disease will remain in his body. At the end of his 12 cycles, he'll undergo a complete PET scan to examine the extent of the remaining tumor.

The question now is what to do after this GemOx/Erbitux therapy is over?


AFTER TARGETED CHEMOTHERAPY GETS OVER:

Oncologists/surgeons in the US who were consulted, consider resection to be off the table, as before chemo, the disease had shown signs of distal metastasis.

Thus, my friend will (in all probability) continue on with Erbitux (but not GemOx) forever. As the dosage will be lower, hopefully the side effects (rash/hiccups) won't be as severe and my friend can function normally.

While Erbitux has minimal side-effects compared to Gemzar or Oxaliplatin, it still is a powerful drug, and its long-term effects unknown. Will my friend be able to withstand Erbitux forever?

Furthermore, there is no guarantee that this dreadful disease will remain manageable forever. The CC tumor cells keep mutating, and eventually might develop their own immunity to Erbitux - maybe in months, maybe years. This eventually will render Erbitux ineffective.

The big question is what will happen when Erbitux no longer is able to control the CC?


LONG TERM OPTIONS:

My friend's spouse and us too are looking at alternative treatments (Ayurveda, herbal treatment). Although I am aware that the chances of this being effective is like 0.01%, there is no harm in exploring this recourse.

Moreover as I am sort of a scientist (but not a doctor), I manage to glean out basic information from the various research papers on Cholangiocarcinoma (through scholar.google.com). There seem to be other targeted therapies being studied:
(i) Sorafenib (Nexavar);
(ii) Bevacizumab (Avastin);
(iii) Erlotinib (Tarceva).

I'd really appreciate anyone sharing any information on alternative treatment (e.g. Ayurveda/diet) as well as any experience or information on these other drugs (Sorafenib, Bevacizumab, Erlotinib, etc.).


REFERENCE

[*] Gruenberger et al.  "Cetuximab, gemcitabine, and oxaliplatin in patients with unresectable advanced or metastatic biliary tract cancer: a phase 2 study" 11(12), Dec 2010.

Best wishes to all,
SDas

I am logging in after Feb. My very close family/personal friend was diagnosed in February 2011 with distal CC, which turned out to be unresectable (possibly stage-IV but formal staging was not done). He is on the 9th cycle of a 12 cycle treatment of Gem/Ox + Erbitux. His CC-19-9 tumor marker dropped from more than 3,000 before the treatment, to about 125 now.

The Gem/Ox had horrible side-effects. Initially he felt awful, but he learnt to aggressively take medication to arrest nausea before it began. He seems to handle the side-effects better now, but it still causes him to suffer a lot. sad

Erbitux has significantly less side-effects. But it produces an measles-like rash throughout his body and is very itchy. It also causes him to hiccup uncontrollably at times.

After he completes the 12 cycles, in all likelihood, there'll be no resection, and he'll continue with Erbitux, although Gem/Ox would be discontinued. How long? Nobody can tell.

Gavin wrote:

Sdas,

I am very sorry to hear this news about your friend. I can so understand why you want to be alone right now, but please know that if you want to come here then we will all be here for you.

Gavin

Hi Gavin, and thanks a lot. What is the prognosis now, with chemo? What I got off the web was gloomy, but that does not reflect the latest advancements.

Thanks everyone... we'll FIGHT it. There is always hope.

Kate,

Thanks and I am glad to hear that your dad is doing great. As for my friend, we just heard terrible news that the tumor has spread all over and unresectable. He went to surgery earlier this morning, but the whipple was NOT performed. He'll be on chemo. The initial assessment based on the CT scan was inaccurate. I don't know if I'll be able to continue here.... We'll try our best to handle this ordeal. We are so attached to them, they're practically family. Right now I badly need to be alone.

Warmly,

SDas

Yes Kathy, Marion is quite correct. My friend's CC is quite close to the pancreas and away from the liver. (Klatskin's / Hilar is the one that is closer to the liver but still extrahepatic).

In fact, in my friend's whipple procedure, no part of the liver is expected to be resected (not sure about the pancreas). It is scheduled in 2 days, and hopefully we'll all be breathing a sigh of relief.

Warmly,

SDas

Hi everyone,

Thank you all for your warmth - Gerry, Marion, Cathy, Gavin, Ron, Malc, Penny and everyone else. Your advice is indeed very helpful. It is difficult to be cheerful, but my friend is really taking it well. In fact his demeanor has been amazing. As you have suggested, Penny, Cathy & Gerry, Nancy, I will try to be more of a listener. I don't offer sympathy to him as I know he would not like it. My friend wants to talk about this ugly disease, but his wife (she's quite delicate) gets so gloomy when the subject is broached that it is rather difficult to balance the conversation.

Malc, thanks for the offer of contacting another person, but as my friend's prognosis is highly encouraging (see below), I'd rather he not hear about the gloomier possibility. Perhaps later....

Here is some really good news from my end:

Earlier this month, at MSK, my friend did not have to undergo the formal TNM staging process. (It is my understanding that at MSK, they do not use the TNM process anyway for staging.) But based on his CT scan, the surgeon was quite certain that the carcinoma has not metastasized yet (M0), that the lymph nodes are unaffected (N0) and that his pancreas is intact.

I'm not trained in medical sciences at all but I read through some literature. I am guessing that is possibly a early stage tumor (between T0 [in situ] and T2). Therefore my friend's carcinoma is in only about stage-1 and fully curable! I really really hope that I am right.

The surgeon's also said that my friend would probably not even need adjuvant chemotherapy/radiation therapy after the Whipple.

At this point, we have reason to speculate that my friend will enjoy a quite normal life after all, after this ordeal. Of course things will become clearer after his Whipple, scheduled later this week. Only time will tell, but there is a lot of hope for us.

I will keep you posted. Meanwhile, my thoughts are with you all.

Warmly,

SDas

My very close friend was just diagnosed with distal CC. I know he is not a sibling or blood relative, but I really care about him as they are way too close to us.

Anyway he had been itchy for a month. Initial diagnosis showed mild jaundice, but Hepatitis tests turned out negative. The bilirubin level was 3 when he got tested. The doctor discovered a bile duct blockage. A metal stent was inserted and a biopsy performed less than two weeks ago. We were horrified when the biopsy results came back. He has been diagnosed with distal cholangiocarcinoma. His staging will be done this week at MSK.

Naturally, there are some things I do not know as I am uncomfortable asking him.

We are anxiously waiting for the staging. Because
(i) his only symptom was (rather severe) itching but no other symptoms,
(ii) as the initial CT scan showed a clean pancreas,
(iii) he is rather young (mid 40s),
(iv) the bilirubin was not all that high,
we're hoping that the cancer hasn't metastasized or lymph affected.

We're expecting that the Whipple procedure to be done later this month. What are we going to expect? Having read a lot of the literature on CC, I understand that he is in for a traumatic and painful experience.

I have not dealt with this kind of situation before. In what possible way can I help him (other than the usual household chores, car lifts, etc.)? Would he feel comfortable if I discussed his cancer? Or should I ignore all and act as if nothing happened, chat, watch movies, etc., to cheer him up? Any Do's and Don'ts?

Any suggestions, tips welcome.

Thanks in advance.