Hi!
I've posted on this extremely helpful and supportive discussion board before for advice regarding my 58 year old friend who was diagnosed with a klatskin tumor approximately 4 x 5 cm in April 2012.

He was deemed unresctable, and turned down for LT. Starting Aug, he was undergoing a low dose chemo at Moffitt cancer center in Tampa (gemzar 600 - 800 mg). In the meantime they were in touch with other centers, and also Dr. Sonnenday (thanks to folks on the board for introducing us to him).

He had a follow up CT on Oct 15, and while the doctors at Moffitt cancer center deemed no change and wanted to continue chemo, the doctors at MD Anderson in Orlando indicated that they had seen the good side of his liver - the left side - had grown to the size of the tumor afflicted right side. They felt they would be able to resect the right side, and reconnect the left side to the small intestine. Dr. Sonnenday independently seconded the opinion of the doctors at MD Anderson.

The good news is that everything went as planned. My friend had a successful ten hour surgery this month (they also removed his gall bladder because of gall stones), and is now back home recovering well, stent free and bile drain free. He only has one drain in the stomach for now.

Of course, it's fingers crossed going forward but at least he's in partial remission for now. I wanted to share this good news with the wonderful people on this forum. One never knows when there can be something around the corner. I guess we've to just stay hopeful and try what we can, in terms of second and third opinions, reading up on treatments, asking questions and staying healthy.

A very happy new year to all of you.

Warm regards
venkat

Eli,

Thank you for the info. I guess it will be fingers crossed for now, to see how this treatment pans out.

regards
venkat

Hi!

I've been on these forums before on behalf of a friend who's battling a currently non-resectable klatskin tumor CC. His wife researched Kanzius and brought it up with me today. As always, the first thing I do is rely on this forum for wisdom from shared experience.

I noticed this was the only related thread - does anyone have any new news regarding when this treatment is going to see light of day?

thank you very much
venkat

4

(8 replies, posted in Chemotherapy)

Kris:
I hope that you'll get a second chance at resection soon! I've begun to realize how much that hope means..

dmj4ctj:

I just thought I'll chime in. My friend who's 58 years old has been battling CC since Apr 2012. He's not a LT candidate due to size of the tumor, and surgery is ruled out at present because of portal vein involvement.

We are also hoping that the chemo will shrink his tumor and relieve itself from around the portal vein to where resection is an option. He's getting chemo (only a couple of sessions of gemcitabine so far) at Moffitt, and they have never mentioned this as a possibility. However, when we went to see the doctors at Mayo Jacksonville, they asked us to go ahead with the chemo, and said they would be willing to review his progress via the CT scans to evaluate surgery as a possibility.

As to your other concerns, my friend was also denied chemo initially for an aggravating period of a month on account of elevated bilirubin counts. In his case, what eventually helped was repeated tries at stenting, first internal ones that slipped into the intestines, were removed, then replaced with external drains, one on each side of the liver. Those leaked twice, more delays, but finally now, the external drains seem to be holding up (touching wood as I type this)

Most recently he was held off chemo due to elevated creatinine levels. It's been a frustrating road for him and his wife, and I wonder at where they get their strength and resilience from.

Stay strong and as others on the forum have advised, don't hesitate to get second and third opinions, and continue to ask questions. Never hurts to ask.. write down the questions as they pop in your mind in the wee hours of the night, so you have them handy to barrage your husband's doctor with!

I wish your husband the very best.

venkat

Hi

I have posted earlier on these boards on behalf of a friend (58 years old) who found out in April 2012 he had a klatskin type 4 tumor, deemed unresectable because of portal vein involvement, and both sides of the liver impacted. He's had no treatment so far because of infections with the stents at first and then issues with his two external biliary drains. Finally now, his bilirubin count is down to 3.2, where he can start treatment.

Until yesterday, we were hopeful of a liver transplant (thank you so much to all the folks on this forum who replied and sent me the contacts), but on visiting Mayo Clinic in Jacksonville, we were told that he would not qualify for a LT anywhere because of the UNOS criteria of the tumor being <= 3cm and his tumor size is 4x5 cm. In any case, we have reached out and sent the reports to Dr Sonnenday at UM and Dr. Chapman at Barnes Jewish also to see what their take is on the possibility of LT, but it seems remote.

So, today, my friend is back at Moffitt Cancer Center in Tampa where they are starting him on systemic chemotherapy (no radiation yet). They are starting him off today with Gemzar only 600 mg/m2 once a week for 3 weeks, then nothing for 1 week, with no radiation treatment. The radiation oncologist wants to see how he responds.

They have ruled out Y-90 theraspheres because of the location and size of his tumor.

I'm a tad anxious about the mono drug chemo since it's already been three months with no treatment and would welcome any opinions and advice, and shared experiences, about the following:

1. Why are they not going with a combination of Gemzar with Cisplatin or some other combination?
2. Why are they not considering simultaneous radiation (either systemic EBRT, or localized brachytherapy)?
3. What about other options such as photo dynamic therapy (PDT) - Is this applicable only for extra hepatic CC?

I know these are questions for the doctors, but it's been hard to get a lot of information out of them sometimes.

Again, thank you so much for all the support and advice so far. It is definitely a comfort to be able to share and discuss these concerns.

venkat

6

(45 replies, posted in Hospitals)

Eli and Cathy,

Thank you so much for Dr. Sonnenday's and Dr. Chapman's references. Cathy, your story is inspiring - thanks for sharing.

I have passed the details on to my friend, and we are all so very grateful to you for your quick and detailed responses

thanks again
venkat

7

(45 replies, posted in Hospitals)

I'm posting on behalf of a friend who's recently been diagnosed with cholangiocarcinoma. He was diagnosed in April 2012, he has a single tumor that is impinging on the bile ducts, including secondary ducts, on the left and right sides of the liver (which is why the doctors at Moffitt Cancer Center have presently ruled out resection). It has not metastasized.

The initial internal stents seemed to work for a week or so, but then the doctors deemed the stent to have slipped, and inserted two internal stents, one each on the left and right sides. That didn't help much either, and now my friend has two external drains. The good news is that his bilirubin is finally dropping this week, slowly (now 8.5 or 8500).

We have been wondering why liver transplantation has not been considered as an option for him, and I came across this topic as well as this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/
that references the "Mayo protocol" and it's success.

Since no one seems to have posted on this topic for a year now, I was hoping to rekindle the discussion - any recent experiences related to liver transplants, advice and/or opinions will be most welcome.

Again, thank you very much for all the help and support.

venkat

Hi! Lainy,

Thank you so much for replying. This is an extraordinary family indeed, and a very inspiring one!

I have done some research, which indicates that HDAC inhibitors such as Belinostat are in very early stage clinical trials for CC, but have been in trials for other cancers in recent years.

As for my friend's CC, he was diagnosed in April 2012, he has a single tumor that is impinging on the bile ducts, including secondary ducts, on the left and right sides of the liver (which is why the doctors at Moffitt Cancer Center have presently ruled out resection). It has not metastasized.

He did have an infection in the early days, but not any more. Just slight fevers in the evening, that he controls with ice packs and the occasional motrin.

The initial internal stents seemed to work for a week or so, but their the doctors deemed the stent to have slipped, and inserted two internal stents, one each on the left and right sides. That didn't help much either, and now my friend has two external drains. With the drains in place, we are still waiting for the bilirubin levels to drop from 13 (or 13000), no luck yet. That's where the possibility of the belinostat trials was raised.

As you correctly indicated, there is not much by way of experiences with CC and belinostat. That is why I was hoping there was someone here on the forum that could shed some light or share their experiences with it.

Also, anyone willing to share their experience about care at the Moffitt Cancer center at Tampa, FL will be very welcome. Perhaps this is not the right discussion board for that, though?

Thank you
venkat

Hi! everybody, I want to first thank the moderators of this forum, as well as everyone on it for sharing their experiences.

I'm posting for the first time, on behalf of a friend who's recently been diagnosed with cholangiocarcinoma. He is seeing doctors at Moffitt and was told that since the tumor had affected both sides of the liver, and was impinging on the secondary ducts, resection is ruled out.

They have re-stented him once, then placed external drains on both sides twice, in an attempt to get his bilirubin count down, but no luck yet.

Now, they are considering enrolling him in the active clinical trial with belinostat. I was wondering - does anyone on this forum have experience with this trial or opinions about it. Any information will be very welcome, since we are quite worried about the implications of signing up for it.

thank you very much
venkat