My goodness, this BGJ398  is still working for me after 12 months of taking it..  I lost a good percentage of tumor with it, then it more or less stabilized it.  But my last CT/PET could not see any sign of a tumor in a lymph node in my gastric area.  Amazing.  They are going to re-reviewi the radiologists notes on the small lymph node near my left clavicle.  I'll report on that later.  But this progress even after I needed to take an extra week off for 3 months due to some side effects that had built up.  I'll update you after it goes to the Tumor Board!  Course, this will make the scientists scratch their head.

Looks like the posts after 2014 are inaccessible at the moment.  I was going to add some good news.

I should restate that my other doctors have asked me to try not to go into a Phase I trial.  Also, that there are usually many Phase II and up trials in San Antonio.  I also thought I understood that Keytruda wasn't limited to someone with a certain gene alteration at this time.  That's why they are doing these trials all over the world to see if a certain gene mutation that it works with does show up or not.

Are you saying that our gene mutations don't stay the same?  That your went away and another one cropped up based on a new tumer sample?

Hi Patti,
I do not understand the "ousted" from the Match Trial.    Was that an MDA verbal report?  Shouldn't have you received a report saying what all gene testing they compared it to?  Or at least how many genes?  I think that is a government match and if so, I heard on radio that one may or may not get the resport for a long time.

Mine was done through Foundation One (in Boston).  I got a nice long report, they named the mutations found (4 of them in my case), how many they tested against and what they were, any meds that are approved for use with those mutations, any trials that include people with one of your mutations.  I remember reading that you can receive updates on it as time goes by.

Then they named over a dozen more genes that they are not sure on.  Was it not strong enough or ?, I don't know.  My Medicare even paid for this private genetic trial.  My MDA surgeon, Dr. Jeffrey E. Lee, requested it.  I had heard from a rep at UT Southwest in Dallas that they used them all the time and they were recommended.

Yahoooooo!  Awesome news

I disliked my side effects so much that I sought specialists in that area to fix or help it.  Podiatrists, dermatologist, nutritionist, psychiatrist for chemo brain meds (like Prozac), etc.  Feel free to message me in case I have found help or fix.  But no insurance and financial security would suck, as does loss of making some progress.  I'd call American cancer society to ask questions too for side effects, financial aid, insurance, disability $, anything and everything.  They can have a highly experienced and empathetic oncology nurse check into it and call you back.

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(4 replies, posted in Introductions!)

Please get references for a far more experienced doctor.  I believe that they are specialists in GI departments.  Recommend of going with the same doctor.  Mine does it with some kind of viewable ct at the same time to see everything inside.  My first plastic Stent lasted 2 months.  When that is blocked, you get lots of side effects including extreme fatigue and chills.  2nd Stent was a bit too short and lasted only 2 weeks.  I researched and found that plastic covered metal stunts are safe and last up to 8 months.  You both Wil feel safer in the hands of a truly experience doc with the latest eqipment,highest sanitary standards, and confidence.  Ask any doctor candidate how many they have done, percentage of complications, and what they think about lplastic covered metal stents.  (NOT JUST METAL STENTS)  I am definitely a grandmother's age too.

Initially I worked with my very good local oncologist near Dallas and my local surgeon.  They have shown in some many ways how they really care about me but they do not do trial research.  I had asked if there was someone we could pay to sort them out.  He didn't know.  I called the American Cancer Society, who will transfer you to a nurse that does that kind of thing for a living.  They study about it and get back to you in a week with answers.  At MD Anderson, when my surgeon there took my reoccurrence to the "Tumor Board," the onoclogist there was involved with a Trial that seemed helpful to cholangio patients with an FGFR gene alteration.  I had heard from a nurse/frient at UT Southwest in Dallas that Foundation One did all of theirs.  They are in Boston and very good.  So they sent off a piece of a former tumor (that the hospitals keep) to hae it tested.  After a few weeks, they send it back with what all your gene alterations are (that they currently can test for) and what FDA approved treatments there are (none) and what Trials are for Cholangiocarcinoma with one of my mutations.  So, I'm in a Trial at MDA for it for 8 months.  The first 4 months had significant reduction in tumor size.  And the last 4 months have had little reduction or stable.  But hey, who isn't good with stable as long as it isn't in an organ that they can't mess with.  Another way we searched was asking our doctor what all the terms were we could search the clinical trails page for.  He came up with a lot more search words that I had thought.  So that is good to know too.  Then of course, on this website, they are listing new trials out there.  I recommend a Genetic Test if they have any malignant tumor sample from you.  (Also, second opinions from surgeons and oncologists who work frequently with this kind of cancer can help much more too.  That's why 2nd opinions at the best cancer facility you can get to is a very good idea.  I have lived on 6 years, starting with a successful surgery and having a reoccurrence here and there is a gland.  Off and on chemo now trial and surgery 3 times has kept me with a great quality of life.  More than great.

Thank you so much for letting us know.  I have kept one eye on Keytruda for many months.  I was discouraged when I heard that the FDA cleared it only for a few types of cancer, but it opened the gate of promise for Trials.  It sure would make all the headlines if it works well for many.  I  also wonder how long Keytruda has been in any trials in other countries?

Two people said they heard that it was only tested on people with a certain gene alteration.  I hope and pray that isn't true.

I am sure that I misunderstood something regarding Gem/Cis but I don't know what it is.  Back in December of 2010, we found out that a large study had been done (some other country) and found that GEM/CIS had a better outcome than Gem along.  And that it gave extended time.  I took that after my successful liver resection with clear margins, and nothing came up.  Then about 6 months after I stopped treatment, a bit came back to a lymph node.  We hit it with Gem/Cis and just a small amount disappeared but we were able to get that with an MDA operation to remove it.  That's not the end of the story, but the part that relates to Gem/Cis.

And another late March CT Scan.  My last scan at MDAnderson showed mild improvement.  Course, the difference between mild -- and having more metastases is a long, long way so I am grateful.  Very grateful.  I connected with the Facebook's BGJ398 posts.  I see a few new and many former trial members.  It covers a bit more re: Did you get this side effect?  That's the mystery when on a trial.  They don't tell you about them in advance of course, but it can be hard to know what to blame it on sometimes.  Having it affect your thyroid counts has been a relatively recent thing.  So check those counts with your home doctor until and unless the manufacturer has enough evidence to call for its testing.

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.

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(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.

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(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.

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(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.

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(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!!