Hi all.  Surprised we don't have more BGJ 398 people chiming in here.  I would love to know how the rest of you are doing that began before I did (August 2015 I believe).

My 3rd CT results are in.  This time, my results seem to be one smaller, one stable.  Both of them are under 1 cm.  Yea.   I must say I find MDA's CT reports are rather confusing as they are talking about one new one in the last few months, they can't see the original one where the bile duct stent is, and the one at the collarbone area. 

Anyway, I do wonder how folks are doing when they started out with larger tumors on this Trial. 

As a volunteer for a few survivor groups for one on one phone conversatn for someone having been there, done that -- or is around the same age group --  I find myself saddened that many of them are still being told to start chemo,  "make your final plans," but no mention of a surgical option or opinion.  It isn't discussed nor are the scans explained.  I struggle to find the right words to ask if they know the details and when they don't, to get them and check 2nd opinions to be sure that a more experienced surgeon can't tackle it now or follow you to see if it becomes surgical with some treatment.  I had three calls like that in one day.

Hi all.  On the BFJ 398 trial at MD Anderson: Just a quite note as I'll have more test info in a few weeks.  I have been using BFJ 398 Trial at MD Anderson since about mid (?) August 2016.  My second scan in early December showed further reduction of the 3 malignant metastasized lymph nodes.  A clinical nurse said that is about 40% reduction total.  I am not sure about her estimate as the 1st time, some of them were just called "stable," but I am therefore optimistic about my next test.  I frankly don't know much about their expectations, or if anyone has gotten to zero and how long they continued treatment after that -- or went on a "maintenance" dose.

On side effects: My top hair thinned more on top and I just heard about Toppers and a few lower extensions I might investigate.  I have learned what all to help avoid or treat those little mouth sores (with white heads). in mouth or tongue.   I have lost 30 pounds which looks good on me, but I (and they) don't want me to lose one pound more and I really have to make effort to find the things I can eat that are 1) okay to eat 2) don't taste bland or 3) don't sting in my mouth 1/2 through the 3 week out of 4 treatment.  Also, some things that help preserve my nails.  I always turn to the internet and then specialists to address it as the oncology people aren't as much into side effects as they are into saving your life.  :-) 

I heard there was a Facebook site for our BBGJ 398 trial people, but I don't know how to find it.   Does anyone know?

10/02/2015 update:
My first CT scan after starting BGJ 398 in this trial was promising.  One tumor shrank and the other two are stable.  I believe the doctor was surprised because I have been taken off this treatment several times due to my blood labs being off or I needed a stent replaced. 

Gosh, my hair is thinning.  Anyone else experience that or have a tip?

Hi Maria,

There are more reasons now than ever to have hope.  I'm still here 6 years later.  A woman I know has beat back her liver metasticized cancer for over 20 years -- utilizing the next newest thing that came along.   Keep learning and keep your oncologist on his toes!  :-)

Even though this question is years old, I would like to offer some updated information in case someone is currently seeking same.  When I had to have a stent in my bile duct, it had clogged up in 2 months.  They replaced it with a slightly longer plastic stent and that lasted 10 days.  We are presuming that the length was too much.  So we changed it out again for a plastic stent.  Two months later, I have the uncomfortable signs that it is clogged again.  This time, my GI asked if I wanted a COVERED metal stent.  I knew from reading online that the regular metal stents were hard if impossible to remove, but studied have shown that this plastic coated metal stent is easy to remove and should last 6-8 months.  We aren't going for palliative, we are trying to diminish it with this new Trial medication that I'm on (See BGJ 398).

My oncologist said that the doctor handling that combination on a trial said that it wasn't going so well.

Hi there.  I am a new member to the BGJ 398 Trial at MD Anderson.  After the 1st week, I was taken off for a week as my phosphates were too high and I was dehydrated.  (Nothing like cancer treatments to get you dehydrated without even knowing it.)  So we'll try again this week. 

I already got some side effects:  red sore spots on my tongue after I ate a tomato but it went away after swishing several times with baking soda and salt in warm water.  The ball of the foot on a few toes hurt like there is no padding.  Many foods are tasteless or off.  Some are not at all affected.  I got diarrhea for 2 days with some chills but no fever -- then used two times of Immodium which cleared it up.  From taking Xeloda and having Hand Foot syndrome before, I soak my feet each night in warm vinegar water.  I use roomy soft padded shoes.  I'm going to check to see if they will let me use Biotin and RevitaDERM as I was recommended that before and it helped.  So far, they have nixed hair vitamins. 

I wanted to answer HamptonSarasota's question about how to get the genetic testing.  A few years ago, MDA did it in house for me but they could only do it on 50 genes and nothing showed up.  This time, I heard about the Foundation One in Boston from the head of the TargetCancer Foundation (for research for rare cancers including cholangio).    So when I asked MDA surgeon who would do the actual test, sounded like they sent it out to one of two places, with Foundation being one of them.  I asked for them..  They test against 350 genes.  This trial is a fit for certain types of cancer, including ours, if they have the FGFR ones.  Mine is FGRR 2.  I have 3 other alterations but they have no targeted therapies yet.

To Patty, just FYI also.  The Greek Isles many times are at a steep incline.  Some have transportation; some not.  If you do go, ask your host about which ones you can or can't do if walking up very long steep inclines are tough with this treatment.  Hmmm, if Banks are closed, I wonder if the hotels and restaurants would even take your credit card?

Thanks to everyone for sharing tips and treatments and support.


(14 replies, posted in General Discussion)

The only true cure for now is when it is resectable (can be removed by surgery).  Many doctors use chemo or radiation to weaken it, slow its spread beforehand if there is time).  Many oncologists I hear aren't getting these patients into surgeons.  They take for granted that the surgeons won't be able to help.  I recommend a surgical opinion.  My surgeon, Dr. Jeffrey E. Lee, Chief of G.I. surgery, woudl be a great one.  Their procedure is to ask for an appointment asap from him.  They will ask for some of your records and scans to re-evaluate.  Then they will let you know if htey think they can help or see you (your condition) in person.  They may take it to the Tumor Board to get everyone's assessment (radiology, oncologist, etc) to get a second opinion from them.  Dr. Javli here is an oncolgist who does a lot of work with our cholangio and is involved in research and trials.  Their department was the one that wanted gene testing to see if I was a candidate for the Phase II BGJ398 trial which has shown some hope of large reductions in the past.  Only people with a FGHR gene alteration would be helped by this one.  It is a pill form but you still have to comet here weekly so it may be better to find that trial closer or where you have family for mid-week housing.


(5 replies, posted in Introductions!)

Thank you.  I survived all that with Xeloda and then surgery to remove it.  It was in a very precarious position.  And I was cancer free for 1.5 years.  But, hello ICC again as of 5/15.  This time, it showed up in the bile duct in the pancreas and a few lymph nodes near my shoulder.

This time, we got some really good gene testing (checks 350 types).  I have 4 alterations, one of which has 2 targeted treatments that are fair and 1 that is showing promise in a Phase II Trial at MD Anderson:  BGJ 398.  One one week and the treatment shot up on phospherous sky high.  So no treatment this week.  Will lower dose and increase the phospherous blocker.  It's very slow growing but must admit that I do fear it may one day increase in its speed.


(18 replies, posted in Chemotherapy)

My experience with Gem/Cis was that my premeds with some kind of steroid gave me energy that day.  I'd plan shopping or fun those days.  Then the next 2 days might be low energy and fatigue days.  I slept whenever I wanted to (preferably in the media room on the recliner).

As treatment went on for months, I'd be energetic for a bit, but I couldn't go over 40 minutes of activity without resting.  At the end, I found myself drifting off during my favorite television shows.  Big deal for me was my doc watching over my blood tests each week, eating foods that were good for me, not getting around foods that made me nautious (garlic roasted chicken, things with tomato sauce, spicy stuff).  Always drank a bit of Sprite before dinner.  Hope this helps some.


(2 replies, posted in Chemotherapy)

I have had Xeloda by itself two different times.  I had more problems with Hand-Foot Syndrome and how heat affected me.  I can tell you much about that.

But Headache?  If I had it, I must have been able to get rid of it with an Excedrin or asperin as I don't remember that being a big issue.  As always, telling your oncologist, nurse, clinic nurse about it should give you some benefit.

I have had some good luck asking doctors via e-mail for any suggestions.    It was hard to find out which cancer centers specialize in this, or if it is just is an advanced GI issue, but I did get thoughtful responses.  I've even written to the contacts of a trial.

So happy for you!  This is terrific.  I must look up Cyber Knife.  I've been away from this site for too long!!


(5 replies, posted in Good News / What's Working)

Wow, 7 years.  Did it get into the lymph system?


(12 replies, posted in Good News / What's Working)

Amazing news.  Yea!!!!!!!!  That is hopeful.  Would love to hear about how things are post-Whipple too.  If I have to have one, I just don't know what changes after that.


(12 replies, posted in Good News / What's Working)

Congratulations!!  What was your chemo combination?  Do many people get help with chemo/radiation?

(continued response to Matt....)

Going to Seattle on vacation from (hot) Dallas.  Call cell 214*734*5023.  My husband can speak on medical level too if you want to talk to him.

Aug 11, 2013
I am now 65 and in "excellent" health (besides ICC).  I hope this info gives you and perhaps others some bit of hope. 

Diagnosed 11/09.  (Caught it before it spread beyond the liver.) 
60% of liver resected, clean margins.  (Dr. Rohan Jeyarajeh, Dallas, TX)
Gem/Cis preventatively.                       (Dr. Vikas Aurora, Grapevine, TX)
8 months remission. 
Reoccurrence to a local lymph node. 
Gem/Cis again                                      (Dr. Vikas Aurora, Grapevine, TX)
Removed the rest by surgery.              (Dr. Jeffrey E. Lee, MD Anderson)
1.5 years remission. 
Reoccurrence to a slightly more distant lymph node. 
Taking (oral) Xeloda now.                     (Dr. Vikas Aurora, Grapevine, TX)
CT next week (mid Aug 2013) after 3 cycles.

Side effects never a big deal to me but I did get/use a dietician specializing in cancer care to give me more tips on preventing side effects)  Recommend.

Cancer hormones can cause depression not to mention the fear of the diagnosis.  So make sure either of you don't become trapped in anxiety, depression, or fear of making a decision.  If so, seek help (e.g. meds, stress mgmt education, mind/balance steps, no secrets.  I even have an upbeat personal trainer come to the home to keep my core strong, energized, good circulation, big smiles)

I'm impressed with your medical saavy and research.  Your wife is lucky to have you in her corner.  My husband (former pharmacist then lawyer) was/is great at that too.  If you ever need/want to talk to someone who can talk to you on that level, feel free to call 214*734*5023.  I haven't posted much here so I don't know if I'll know if you reply on here.  Going to Seattle vacation this week... That's my cell.


(5 replies, posted in Introductions!)

My oncologist doesn't know of anyone like me so we're walking an unknown path.  If there is anyone in my situation, let's compare notes, please!

I have interhepatic CC.  I'm 63 and very healthy.  The large liver tumor was successfully resected; no sign left.  Did Gemzar/Cis just in case.  No sign.  Then, 8 months later, one lymph node near there doubled in size and was malignant.  Tried Gemzar/Cis again.  It remained stable with only a little shrinkage.  PET doesn't show activity but node is still enlarged and the "SUV"  background was a bit brighter than they would have liked and could have concealed seeing activity.  (So, what to do?)

Went to MD Anderson (Houston, TX) for an opinion.  An endoscopic sonogram shows also something dark between lymph node touching/encroaching on pancreas, portal vein, and CBT.  It didn't light up in PET at all but its darkness on sonogram suggests something is there (scar tissue from operation, dead or almost dead cancer, infection -- don't know).

Almost all doctors suspect it isn't dead in the lymph node periffery but they didn't take another biopsey (as intended) to prove it.  The MD Anderson surgeon can't meet with me for two weeks to say what he'd do.  The IMRT doctor won't comment til the surgeon does.  My home oncologist was considering 5FU to see if it keeps it stable.  My home surgeon thinks surgery  is a bit risky (and he is a risk taker!) and was hoping for radiation.   But the radiation doctor had said before the endo that  IMRT is the only radiation possibility and he would strengthen the dose which has a 25% chance of hurting the duodenum.

Anyone else out there like that now or in the past?  I can't be the only one who got rid of the liver tumor but am living in a world of don't knows.....  I rather fear surgery if it involves the pancrease (perhaps whipple procedure) which has an abundance of potential complications and doesn't spell CURE according to posts I've seen.

Sorry, but I could almost throw up over being in this current world of "I don't know for sure."  I've always been symptomless from the cancer to date but whenI read all tehse posts, I fear I'm just living on borrowed time for now.

Dear Fatima,

I have been treated twice with Gemzar/Cisplatin (which kept it stable).  I had no problem with either drug either time (other than needing a Nupagen shot the day before chemo to raise my white blood cells back up each time).  Some people have trouble with that shot too.  I did not.

However, my late husband who has another type of cancer was treated with Gemzar at Sloan Kettering in New York City in 2001.  It caused him a great deal of pain.  The doctor couldn't figure out why.  As the tumor was pushing the skin out, we noticed a remarkable shrinkage of same the next day; however, he did not wish to return to that therapy.

I know that if they put contrast dye in your veins rapidly during a CT scan, it will cause a sharp pain a few inches up the arm initially.

Wish I could help more.  I am pursuing a second opinion for the next treatment type at MD Anderson in Houston.  It was successfully resected from my liver, but eventually metasticized to a lymph node and possibly to the pancreas...  Can't tell if it is active or dead (neucrotic) yet.


(25 replies, posted in Introductions!)

I can relate to both sides.  My late husband died in 2002 of mesothelioma, a fatal cancer almost always caused from his exposure in his teens to asbestos on a summer job.  He lived only 5 months from diagnosis.  I am a strong advocate, but inside I was terrified, angry at the cause, I didn't get any sleep, and we had the potential to lose everything.  Aspects of his illness nearly killed me.  I got help with antidepressants/anxiety meds.

So, five years later, I meet a wonderful man and marry him.  Two months later, I get a diagnosis that included the words "most people die from 3 months to 12 months" with no known cure.  Well, certainly back to the antidepressants.  I also chose to spare myself and my family by asking them to help me conduct life as normal:  Lots of love, laughter, get togethers.  No sad faces to see each and every day.  We can talk about tests and stuff.  I just don't want it to be worse than it has to.  And I jumped through hoops to get my Will wrapped up so things could change hands immediately.

I feel your pain.  Everyone's different and every situation.  Certainly one with young children to raise is a big difference and another is economic security.   Sad but true, I do hope that she has her will updated and if not, please drum up the courage to ask her to do so for the just in case so the kids will be covered and there won't be additional grief from any hang ups in paying for the mortgage, etc.  This is not a time to worry that she will think she's definately going to die.  But she knows that she has that risk and she might be shy to bring it up in case that makes you emotional.

I like the idea of writing notes or recording messages.  If she is able to record or express to you or write, perhaps she could leave notes or letters for them to be read or heard on certain birthdays and events like graduation, marriage, being a spouse, certain big birthdays -- and for you too.  It doesn't have to be prophetic, sometimes the best is showing her recognizable sense of humor.  Also, don't be afraid to flirt or show her your sense of humor.  They miss that.  At times when I thought my late husband was just "out of it," some nurse would come by, touch his shoulder, smile, look happy to see him, and kid him.  He lit up like a lightbulb and started talking.

Oh yes, get enough sleep.  When caregivers are exhausted, it is too much of a load to bear.  Ask for help so you can get teh rest.  Even if she doesn't want you out of her sight, this you must do, one way or another.  I don't think I could give any more important advice than this.  I didn't and it was like having post traumatic syndrome.  Don't let that happen.


(11 replies, posted in Introductions!)

Dear PLJC:

Mmmm, I think I have some good news for you.  Even though you have been treated poorly, the fact that your tumor was resectable was the rare best opportunity that most people don't get.  Secondly, it looked like they got it all.  The chemo combination you were given is one of the best studied for any kind of help with this cancer.  I know, I read the large study that just was released last Spring.  Most studies are only a handful of people.  this one was about 400 people.  As I understand it, the gemzar is in large amount, the cisplatin small.  They both help each other be more effective while at the same time, lesson the bad side effects of each other.  I know because I had an amazing surgeon, caring oncologist, and am looking as if I've been cancer free since the surgery, taking the chemo as a preventative (adjuvant therapy).  I did amazingly well with the chemo.  MD Anderson also agreed with my oncologist on the best treatment.  The radiolotist said it was too dangerous for me.  I had a tumor that was about 55% of my liver (they earlier thought it was 60% or more and had to think twice about giving me the surgery).

Now, you just need to insist on a caring oncologist hopefully taught in a good school and internship.  (Mine had internships and were doctors in  Chicago's finest hospitals.)  If they aren't caring, then for me, they are depressing and frightening.  I experienced that before with my late husband's doctors. 

Best of luck to you.  I don't think I've visited this board since late last year when I found out what I had.  I'm doing great, holding my breath, and I hope you are too.  Just kick those uncaring doctors to the curb.

This is just what I was looking for.  What to do if I see any sign of cancer after I finish my treatment with Gemzar and Cisplatin soon.  Last CT was still clear.  Next one is in early August.  I'll ask about Tarceva.  God bless and glad I came across this site.  BTW, my surgeon is awesome if anyone needs a reference to one.  His nickname is "Dr. Angel Hands."  Are you still diong well, Houston Mom?  What were the side effects of Tarceva?