Hi Vineet,

My wife is also a patient of Dr. Kelley at UCSF.  We have met with many doctors, and we are very happy with Dr. Kelley.  I think Anju will get world-class care from UCSF. 

I think there is pretty good research linking liver flukes and cholangio carcinoma.  Pesticides would make sense as well, but I have not read about that link. 

However, my understanding of cancer is that getting rid of the triggering "cause" (i.e. either pesticides or liver flukes in this case) would not cure or even treat the cancer.  As I understand it, cancer occurs when the DNA of a particular cell gets so messed up that the cell starts replicating uncontrollably.  The original cell DNA could get messed up by chance (e.g. just random mutations during cell division) or the DNA could be more likely to get messed up under certain conditions like inflamation from liver flukes.

Anyway, once the DNA has mutated, and the cell growth begins, removing the contributing factor such as liver flukes or pesticides would not stop the out of control growth (but I guess may make future mutations and cancers less likely)

Keep in mind, I am not a doctor, so I may not have all of that exactly right, but I did want to at least describe my understanding.

If you are interested in more information, the national cancer institute has this description of cancer:

http://www.cancer.gov/cancertopics/canc … -is-cancer

You are a great brother for trying to figure out ways to help your sister.  I wish her and you all the best.

Jason

In the paper, they define major hepatectomy as:

"resection of more than three segments defined according to Couinaud’s classification"

If you are not sure, I would ask your doc or surgeon if your resection fit this criteria.

Jason

I am a little bit confused.  "Early stage pipeline data" sounds like Lily was going to release some data from their phase 1/2 trial.  However, "preclinical evaluation" seems more like mouse model type results.

Here is the AACR abstract:

http://www.abstractsonline.com/Plan/Vie … 6446874d93

Looks like cell lines and mouse models.  Still good stuff, but I was hoping for some good news data from their trials.

Jason

Thanks Marion.

Very interesting.

Jason

5

(4 replies, posted in General Discussion)

We did travel during my wife's chemo, but we never got chemo administered some place else.  She was doing the Gem/Cis combo with a 21 day cycle, and chemo on day 1 and day 8.  To the extent we did travel, we would do it during the "week off" between day 9 and day 21.

Jason

Hi Lisa,

You can still contribute to the hepatobiliary registry.  That registry is much broader than just younger colangio patients. 

The CITY project plans on looking on the subset of people in the registry that are <50, but with a big enough registry, I hope many other research projects get off the ground.

Jason

I just saw this on the Cholangiocarcinoma foundation home page:

Urgent Need for Research Participants!

http://www.cholangiocarcinoma.org/

This is a project that is trying to help narrow down the genetic causes of CC by looking at younger patients.

I wanted to post a notice on the forums, because I surf the forums a lot, but rarely look at the foundation home page.  I didn't see this notice, and this is research from my project team (Cholangio In The Young -- CITY)!  Moreover, my wife is under 50 and could contribute to the effort (so we are a target consumer of the bulletin)

In case others are also more focused on the forums, I wanted to bring this important bulletin to your attention.

Jason

8

(26 replies, posted in General Discussion)

Hi Kris,

Andrea finished her last IMRT treatment about 2 weeks ago.  Her nausea symptoms sound similar to Mark's.  After the first couple of weeks, she had an upset stomach that prevented her from eating or drinking much.  She actually threw up most days.  She said it was a weird form of upset stomach in that food sounded good to her, but she still could not hold anything down.  Also, even a swallow or two of water was about all she could handle.  She would feel "full" and would have to fight throwing up just to hold down a couple of swallows.

The only thing that helped during treatment was to go to a totally bland diet.  She had broth, mint tea, popsicles, jello and a little bit of toast.  That at least let her keep a small bit down.  She lost about 20 pounds, and it wasn't until about 1 week after treatment ended that she started to feel a little better.

During the first week after treatment, they did give her a steroid.  That made an amazing difference with what she could eat and how she felt.  I didn't understand it fully, but for some reason they did not want her to keep going with the steroid unless she absolutely needed it.  She took it for 3 days and then stopped.  I think she should have kept it up for at least 7 days.

Anyway, maybe a bland diet with popsicles for hydration will help Mark as well.  I am not sure if a steroid is allowed during treatment, but if it is, I would consider that.  It made the most difference.

I hope Mark feels better soon,

Jason

I wonder if there will ever be a clinical trial where half the people simply continue to do whatever their oncologist says, and the other half follow the advice of "Dr. Watson."

I bet it is coming, but that would be surreal...

Jason

Hi Percy,

I am very sorry to hear this turn.  Constant stomach and back pain sounds awful, and lack of sleep for a month must be terrible.  I hope you find some relief soon.  Being miserable for that amount of time changes your perspective. 

Given all you have endured, I completely understand the decision to focus on quality of life.  I have no experience with hospice, so I can't really help there.  One thing I have given a lot of thought to is what would I want to do if Andrea fails the more standard treatment regimes.  I am sure you have pondered this much more than I have, but I want to write it anyway in case it is even a little helpful.  Here is my rough plan:

1. Add losartan to a previous working chemotherapy.  Based on my understanding coagulation sometimes helps cancer cells develop a tolerance for chemo.  As a blood pressure medicine, Losartan combats this tolerance.  In the specific research I saw, Losartan + 5FU was much better than 5FU alone treating a pancreatic cell line.

http://www.nature.com/ncomms/2013/13100 … s3516.html

I am not sure if you would consider more Xeloda (and I can't tell if it went from working to not working for you).  If Andrea were tolerating Xeloda, I would try and add Losartan since it seems to me it has upside with very little downside.

2.  Immune response trials - I was encouraged by the lecture Dr. Ferrone gave at the stakeholders meeting.  I did not realize that cholangio triggered a relatively strong immune response.  This leads me to favor immune based trials if available.  The NIH TIL trial is out due to age, but Dr. Ferrone mentioned MGH was soon to be opening a new trial based on their research.  I have no idea how long "soon" is, but perhaps there is a way to find out if this is imminent or not?  If so, that would be a trial I would strongly consider.

3.  Genetic marker trial - You said you had TP53 and CDKN2A/B.  Dr. Javle mentioned a couple of trials.  Are there any trials that might target these mutations but maintain a good quality of life?  Perhaps you could start and stop if you react badly?

I really hope you are able to treat your symptoms and feel better soon.  Due to stomach pain, Andrea was only able to tolerate tiny amounts of food/liquid for 3 weeks during her IMRT radiation.  With those types of symptoms nothing matters but feeling better.

All the best Percy,

Jason

Hi Heather,

My wife is finishing up her last 3 IMRT (out of 28) treatments this week.  Her main symptoms were fatigue and nausea.  The nausea was the worst however.  After the first week, she became unable to keep anything down.  She took meds and ate small meals, but it did not help much.

The only thing that ended up helping was to change to a completely bland and mostly liquid diet:  broth, popsicles, jello, crackers, and bagels.  She also had to alternate liquids and solids since combining them seemed to make things worse.  She has not been able to eat much, but it is at least staying down.  She has lost about 12 pounds over the last 3 weeks, but hopefully that is slowing down.

Anyway, I wanted you to know that Andrea has easily spent more time in bed than out, and that she is experiencing terrible nausea.  To my knowledge, she has not had any low grade fever.  I don't think fatigue and nausea are at all uncommon with IMRT.

Best of luck to you and Gordon,

Jason

Hi Rose,

Fatigue, nausea and anorexia are listed as common side effects of capecitabine (Xeloda), but infections don't seem to be commonly reported.

Table 4 of this paper reports the incidence of various side effects. 

http://www.ncbi.nlm.nih.gov/pmc/article … po=42.5000

My understanding is a 20%-25% dose reduction of xeloda can reduce symptoms.  Your oncologist will know best about that though.

Hopefully you can figure out what is going on,

Jason

I can't get access to the article, but it looks like it is discussing (summarizing?) this research:

http://www.ncbi.nlm.nih.gov/pubmed/24485665

Jason

If you use Amazon to buy things, you might be interested in this.

I just found out that you can have 0.5% of each purchase made at Amazon donated to a charity of your choice.


To set this up, you have to do the following:

Do this one time to set it up
-log into your amazon account as normal
-go to smile.amazon.com
-select a charity to donate to (they already recognize cholangiocarcinoma foundation)

Once it is set up, do this to make a donation:
-Start at smile.amazon.com
-Shop as normal

The only catch is that you have to start off at smile.amazon.com.  Set that as your amazon bookmark and you should be good to go.

If it is working, the top left will indicate that your donations will benefit the Cholangiocarcinoma Foundation.

Jason

Many people reply to questions by posting links to forum search results.

Unfortunately, many of these links do NOT link to the desired search.

I finally figured out what was causing some links to work and some to fail.  It has to do with the type of search that was performed.

Performing a "regular" search creates a search page that only works for you.

For example, if I search for "radioembolization" using the search function, I get the following link:

http://www.cholangiocarcinoma.org/punbb … 1930539370

It may not be visible, but the link only references something called a "search_id."  That "search_id" identifies the search, but as far as I can tell, the search_id is associated with my account and will eventually expire.

HOWEVER, if you use the "advanced search" function (an option on the search page), then you get a link that is available to anyone.  For example, if I use the advanced search function to look for posts with the keyword "radioembolization" I get the following link:

http://www.cholangiocarcinoma.org/punbb … rch=Search

Again, the entire link may not be visible, but the key thing is that there is no "search_id" in the link, and instead there is a "keywords=radioembolization" in the link.

The second link should work, and the first link will not.

Bottom line:
If you want to post a link to search results,
-use the "advanced search" option, and
-make sure that your link does not have a "search_id" embedded in it*

Jason

*Just to make it complicated, the advanced search function can sometimes create a "search_id" link.  Weirdly, it only happens rarely.  If it happens just try the search again until you get a "keyword" link.  I will update this post if I figure out a more foolproof method.

This would be a big improvement if you could get mutation information from a cheap blood test instead of a biopsy.

http://venturebeat.com/2014/02/15/if-it … your-life/

Catherine,

Here is a thread on some SIRT research that I found interesting.  You might also be interested.

http://www.cholangiocarcinoma.org/punbb … p?id=10537

When I was looking into this for my wife, the main thing I was concerned with was whether the SIRT treatment was "whole" liver of "partial" liver.  To treat the whole liver, some institutions will do it all in one procedure, and others will do it over two procedures. 

I personally think the research indicates that using two procedures is safer, but I am not a doctor, and I know that opinions amongst interventional radiologists vary.

Hopefully this is helpful to you.

Best wishes for your mom,

Jason

So much great news on clinical trials...Maybe this is what progress feels like!!

Kris, I am so glad you are doing so well.  I remember asking about multi-year survivors w/o surgery.  When I heard your story, I thought it was very inspirational.  Keep on keeping on!

I'll add this info to the wiki tomorrow. 

congrats,

Jason

19

(11 replies, posted in Clinical Trials)

Hey Marion / Melinda,

Here is the timeline I put together for the wiki (leaving out the Jan. 2014 info in this thread):


August 2012
It has been a very long time since I have posted to this site. I was diagnosed with Intrahepatic CC on 12-1-99. I had a 2/3rds liver resection only to find mets to my lungs 3 months post surgery. I have done chemo for past 2 yrs. Started with Gem/Cis combo which was very toxic to me, tried Gem alone with no success and then did Avastin until the toxicity build up again. I have numerous mets to my lungs and about 6 or so 3-6cm tumors on my liver again.

I have always kept my eyes open for clinical trials but found it very hard to get excited over more chemo. I believe that my discovering this trial at National Institue of Health was meant to be. It is called the GI-TIL trial. It is a tumor infiltrating lymphocyte immunotherapy trial. They have been using it successfully for melanoma for quite some time and have just recently opened it up for GI cancers. I am the 9th person to try it, but the first with CC. The first 8 people were unsuccessful.

I met with the research team in March and was accepted into this trial. There is certain criteria and I can't remember all of it, but you had to have been off chemo for a month and are showing signs of progression. The information is online and you can call a nurse specialist to get all the details.

My husband and I returned to Bethesda, MD about 2 weeks later and I had 4 tumors from my left lung removed. The docs then take the lymphocytes from these tumors and grow them in a lab for about 30 days. We then returned again for a 3 week hospital stay. The first week they give you 2 chemo drugs, not to treat the cancer but to suppress your immune system. The first drug was rough and the second was not as bad. The second week they infused 42.6 billion of my lymphocytes they had grown back into me!! They also give you a drug called IL2 at the same time for up to 15 doses or as many as you can handle. I only made it to 4 doses. The 3rd week was recovering my blood counts enough to go home.

I just had my 3rd monthly checkup and I have had a total of 23% overall shrinkage since this treatment. They consider 30% successful, so I am hoping to hit that mark next month! This is a one time treatment, and all I know is everyday that I don't have to do chemo is a GREAT day!
I have been leary to share with you all in case it didn't work, but then I thought it was worth sharing and let you all check into it as you seem fit.
I am almost 44 yrs old, married and have 6 children. It was worth it for me to try this treatment. The 3 weeks in the hospital was hard, but about a week or so after I got home, I started to feel better than I had in years. A chronic cough I had disappeared, my energy level increased drastically and overall just better.

We live in Montana and the good thing about this trial is that it is a Federally funded trial so they paid for all the medical costs plus my travel airfare and give you $50/day towards expenses, which doesn't cover much in that area, but was better than nothing. I also have a brother that lives 30 miles from the hospital so it all worked out well for us.

I just thought you should all know about it.....God Bless!!
Melinda Bachini

Sept 2012:
I just returned home from my 4th checkup since my initial treatment in April on the GI-TIL trial at National Institute of Health. I have officially reached the partial response rate of 30.06% and am now considered a success and the first one to be successful!!!! I seem to be averaging about a 7% shrinkage rate on my tumors each month without any treatment other than the initial treatment in April. I feel amazing and am so happy this has been working! I just wanted to update with the news! God Bless...Melinda

Dec 2012
I just returned from National Institute of Health where I am doing the TIL trial. My check up was great!! No new growth and some small shrinkage overall in my lungs and liver. The docs and scientists are excited with my results, not as much as I am though!! It has been 7 months since I have completed the treatment. I have had no further treatments or chemo of any kind and am still going in the right direction. I hope and pray that my healing continues and that the scientists can find a cure for all of us!!!! Working hard to do my part and thinking of all of you daily!!! Melinda

Feb 2013
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

April 2013
Hi all,
I just returned from my latest checkup out at NIH. It has been one year now since I have received this TIL treatment. Scans this month still showed no growth. Stable it is......since November. While I would sure love to hear the word shrinkage again....I am still feeling that this has been successful for me. Considering that I have not had any chemo or radiation or any treatment what so ever in the last year, I feel like I have to celebrate these results!

I feel extremely blessed to have had such an amazing year with my family. While the 3 week hospital stay for treatment was not fun, I would do it again in a heartbeat to get another year like this one! I don't know what my future holds anymore than anyone else but for now I am happy with stable - I can definitely LIVE with stable!!!!!
God Bless you all!!!
Melinda

May 2013
Hi all,
I just returned from NIH this week. My scans showed minimal growth, like in 1-2 mm in only a couple of tumors in my lungs. Considering I have several tumors in both lungs and I think 4-6 in my liver...that have not grown, I am still happy with this news. We are just watching for now, I go back in the middle of August for next checkup. They have a formula for everything and won't consider it progression of disease until a certain percentage of growth. At that time I could possibly repeat the treatment, depending on the consensus of the doctors, or look for a different trial.

I am still happy with the trial results for me, I only wish that it would work for someone else as well. There is still so much of the unknown. I know for me, not having to do chemo, gave me great quality of life this past year and amazing time with my family. I still don't know what the future holds but I remain optimistic and hold on to my faith. Always thinking of you all, my fellow cc fighters....God Bless.....Melinda

Jason

Hi Caroline,

I am starting to compile a list of clinical trials who have Cholangiocarcinoma patients participating in them.

This is only the third one I added, but it is a start smile

Check it out here:

http://cholangiocarcinoma.wikia.com/wik … cal_Trials

If you click on the Cabozantinib trial link, you can see the information I included from a quick forum/web search.  I couldn't find any other first hand patient information, but I did find some research papers on the drug. 

If you are aware of other research, or want me to update your mom's experience reported on the wiki, please let me know. (You can even edit the wikipage yourself if you are feeling up to it...it's easy!)

I am trying to make a webpage where CC patients can go and get a consolidated look at various trials that may be of interest, as well as see how actual patients are getting on.  Eventually, I am hoping to move the wiki page to these forums, but when and if that will happen has not been decided.

In any event, thank you very much for letting us know how this trial is going.  I am sure it will be very helpful to future patients considering this drug / trial.

Jason

21

(11 replies, posted in Clinical Trials)

Wow Melinda,

Your treatment sounds very tough but also seems to be really helping keep the cancer at bay.  That is awesome!

I went back and searched the forums to get your previous updates.  I collected them into a timeline on a wikipage.  I also added this latest update.

If anyone is interested in the older updates, they are here:

http://cholangiocarcinoma.wikia.com/wiki/NCT01174121

Thank you so much for communicating your clinical trial experience!  Any information is so helpful to other patients.

I hope you continue to do so well, and please keep us up to date.

Thanks!

Jason

Thanks Marion!

23

(9 replies, posted in General Discussion)

Michele,

I can't really give you advice on what to do.  All I can say is I hear my own feelings echoing so many things that you have said.  My wife is unresectable, we have two boys and I can't imagine life without her.  Even though I can't provide advice, I can say you are not alone. 

I am hoping for the best,

Jason

24

(20 replies, posted in Introductions!)

Regarding diet and lifestyle changes --

Well, this is just my opinion, but here goes...

I think it is incredibly easy to be fooled by randomness.  A good illustration from finance is the "stock picking newsletter" scam.

That scam goes like this.

Pick 1000 people and send them a "free stock pick of the month."  The scam part involves sending each one of the 1000 people a DIFFERENT stock pick.

For illustration, assume half the stocks go up after 1 month and half go down.  At this point, there are 500 people that got a "winning" stock pick from me the first month.  Take that group of 500 and send them another "free stock pick of the month."  Again, send all 500 a different stock pick.  After another month goes by, do the same thing to the 250 that have now got two "winning" picks in a row.

Now, after 3 months, there will on average be 125 people that have, for three straight months(!), gotten a stock pick that has turned out to be a good pick.  To this 125 people you send them a special offer to subscribe to your newsletter for the introductory price of $10,000 or some such nonsense.


Anyway, the idea is that the people receiving the stock picks only see the picks made for them (not the picks made to other people).  By shear random chance, a good fraction of them will see a sequence of good picks and will be inclined to buy the newsletter.  That is the stock picking newsletter scam.

In medicine, the same issue arrises.  It is not at all a scam, but rather the issue is that each patient mostly only sees what is happening to them.  For example, suppose 10 cancer patients add a "no sugar" rule to their diet.  Perhaps one of those 10 has a very good response to treatment.  It would be very natural for that patient to attribute some of the good response to the "no sugar" regime.

Similarly, 10 patients might decide to add lots of exercise (or olive oil, or anything really), and again perhaps 1 has a strong positive response.  This person is likely to suspect that exercise played a role in their response.

Now it could just be that one in 10 patients have a strong response by shear chance alone (even if they don't make any major lifestyle changes).

How to combat randomness?  In my opinion, the best way we have to guard against getting fooled by randomness is the clinical trial.

While it could be that certain diet changes have an effect on cancer outcomes, it may not.  Just as the people receiving the newsletters could be fooled by randomness, so can cancer patients.

For me, the take away is to try and be healthy, but don't do things that seriously negatively impact quality of life unless there is good supportive evidence. 

I also believe that participating in a clinical trial plays an incredibly important part in trying to improve patient treatments.  Without clinical trials, randomness can slow down treatment innovation to a crawl.

Again just my take on things.

Jason

Thanks Lainy.  It was fun meeting "the gang"  All really nice / great people!

Cathy - I am sure Dr. Gores was talking about ICC.  Mayo seems to be a big advocate for transplant of the other cholangiocarcinomas.  If I remember right, he reported 5 year survival rates for ICC transplants at 40-50%.  He did say "relatively" low survival rates.  I took it to mean survival rates for other potential transplant patients was substantially higher.

Jason