So do I start a new thread under sticky or add to where the agio 120 trial has already been introduced?  Where do I go specifically to start a new thread :-)

Discussion of specific trials?

Is there a place where patients undergoing specific trials can compare notes? See what's working what's not?  For example my mother is undergoing the agio phase 3 clinical trial at Sloan? I'm wondering how many on this forum have participated in that trial? Their experiences? Also on the topic of Keytruda doctors have said that it does not work on all patients? Wondering how many of you on this forum are currently taking Keytruda and having success? Anyone out there have negative outcomes with Keytruda? There is a woman in town who is having great success with it I do not believe she is on this forum.

If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?

If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?


What are the side effects of Keytruda if any? Any how long will you be on the treatment!

This June will mark 4 years since my mother was diagnosed with ICC She was told she was in operable and given less than a year. Fortunately she was operable and had a resection, she followed up her surgery was six months of gemniside. Over the last four years she's had a few reoccurrences and has also enjoyed many many months of remission. At one point she did gem/cis cocktail which I must say it was horrible for her. She also had stereotactic radiation six treatments she weathered that very well. Last fall when she had her newest reoccurrence she received typical radiation 30 treatments. That was the worst of all of the treatments. Her recent scan this week showed a couple small lesions that are new in the lungs. We have not met with our oncologist yet we are meeting with him tomorrow. I am working with cure forward and we are being possibly offered to participate in  phase 3 clinical  trial targeted towards her mutation... challenges it's a blind study so I have the participants will be on a placebo. She would be monitored under this trial and if things are not looking good they will put her on the actual medicine in the event that she was placed on the placebo. I don't have all the details at this time but that about sums it up.

Another option would be to ask our oncologist to put her on Keytruda A lady here in town is having an exceptional results with it it would require her doctor getting off label use.

And lastly I'm sure another option that will be proposed to us will be additional radiation to zap the new lesions. If we do this we will not be eligible for any clinical trials?

I am looking for anyone's thoughts or input regarding the decisions that lie ahead of us...

Thank you in advance for your help and support.

*** ending this with good news mom feels great and just enjoyed a cruise with my father. She's back to running!

My mom is having radiation to a couple of lymphnodes that lit up....she has undergone a resection and did  chemotherapy twice! She has even had SBRT however now she is having  30 sessions of radiation on her nodes and she is in constant pain? Her fatigue is worse than ever?? She had a recent scan so he cancer hasn't progressed as a matter of fact the radiation was a proactive measure because she was considered stable?

Is this type of pain and fatigue normal? Doctor seems to feel it's par for the course....when compared to my friends who had radiation for breast cancer this seems much more difficult to endure??

Thank you in advance for your time:)

She doesn't seem depressed at all, just constantly tired. It frustrates her that every time she goes to a doctor appointment they ask her if she's depressed and want to put her on antidepressants. I sincerely mean it I do not feel that that is our issue. I think the lack of sleep is a huge causing the fatigue as for the muscle aches that I am unsure of.

Hello All,

My mom has been feeling  extremely tired and very achy. Her most recent scan showed a tiny suspicious nodule on her lung and her lymph node that lit up recently  is considered stable.  Our doctor seemed pleased actually and felt that we should sit tight and wait. Her tumor marker numbers are at an all-time low so things should be good?? Sitting tight and watching has  never been our game plan battling this cancer we've always been proactive not reactive. We are seeking second opinions however our immediate concern is her lack of appetite, extreme fatigue and muscle aches. She's also not sleeping well which certainly  has an effect on her energy. She has no appetite.... The only advice the doctors offer is asking her if she's depressed. That is so not her mojo, she pushes herself no matter what. During chemo she was able to run and now undergoing NO treatment can barely make it through 3 miles of walking per day.   Sleeping pills make her super tired the next day?  Any thoughts on what's cooking? I looked at her most recent blood test results her vitamin levels are very low, she is now taking vitamin B 12 and a multivitamin. I am wondering if receiving vitamin B injectiions could help and any advice on tricks to help her sleep.


(0 replies, posted in Members' Cafe)

Hello All,

My mom and I went to Mass General and I man happy to report that she is stable. She had a nice light up a while back went on 1 round of. Gem/cis then after 9 months of remission it lit back up. We had a scan 2  months ago and the radiologist and onc both said to sit back wand wait....I am a firm believer of being proactive....lets radiate, cut it out???? Anything,,,, I feel like waiting is nuts? They said that even if they got the node no guarantees it would spread else thoughts everyone??? Personal experiences???

Thank you all in advance:)

Ps we are super happy that this thing it moving slowly.....just not a wait and sit back kind of person.

A new friends father has been diagnosed with Cholangio. She has registered to be a member of this forum but is waiting for approval. I offered to post this question knowing she would be able to read everyone's responses.  This is all brand-new to her and I told her the forum would be her number one source of valuable information. She is looking for guidance in choosing which hospital to work with. She was referred to Sloan-Kettering. Her father lives in Nutley, New Jersey they are 20 minutes from Manhattan. One surgeon that was already recommended from Sloan is a Dr. Jarnagin for the oncologist Dr. O'Reilly. Any thoughts or personal experience with any of these doctors or perhaps recommendations for any others would be greatly appreciated.

I am asking on behalf of my mom....she had her resection 2 1/2 years ago and she still feels pain in the area. We are aware that this was major surgery, her question is ....will it ever be completely healed? Possibly scar tissue forming?

On another note....she white blood count numbers went down from 5 to 3.4. She is not currently undergoing any chemo and just had a scan done a month ago,  we are not concerned that this is because of the cancer possibly coming back not that it couldn't be however all her other numbers were great? She's not sleeping well no more than two hours at a clip wondering if anyone has any similar experiences orca perhaps shed some light on what's going on. Could there be a relationship between the lack of sleep  and her blood count being low? She said she's constantly tired?

My mother had her first scan since her SBRT treatment.....the tumor that was radiated continues to shrink. We were told the tumor is dead but will take a while for the body to absorb it and it may actually remain on the scan but the cells are dead. No new growth anywhere else. Just wanted to keep everyone updated:)))))

Hello All,

I used the search tool but I am not finding exactly what I was looking for. We got the results from the genomic testing and my mom has the IDH1 mutation. I am wondering if there is anyone on this forum who is currently on a trail or was on a trial or who has the same mutation? Mom is stable still just trying to stay ahead of the game.

Thank you everyone smile

Let's think about this....this hospital and others similar have doctors that claim to have found cutters for cancer but because of the bog pharmaceutical companies not making any money their theories got shut down. Doesn't sound to far fetched does it? Cancer treatments are a huge money maker. I am not buying into anything  no one is more skeptical than me. I have been through 7 hospitals with my mother because I am extremely proactive and never take no for an answer. I ALWAYS  want to know why??. I am sure there are many gimmicks taking advantage of desperate people every day. Today we are not desperate but I am sure the day will come.  I am going to follow this gentlenman named Ryan D. Luelf on Facebook he just returned from the Chipsa hospital after being diagnosed with stage IV Lymphoma. I am curious how he will do after his month there. 

I am reading so much that diet, juicing  and supplemnts have helped many....our body is comprised of living cells that feed off of enzymes. The enzymes come from what we eat...I think it makes sense that our diet could help??? Possibly cure I don't know but not ruling anything out. The one thing I know is the gem/cim is not the holy grail it is the standard of care and the results stink. Thinking out of the box is why my mom is still here I need to learn more about all of the alternative treatments. 

What I wondering if anyone knows anyone who went there and experienced first hand good or bad experiences??

I am just curious about the Chipsa Hospital in Mexico. There is a man named Ryan D. Luelf that I follow on Face Book and he is there treating his stage 4  cancer. The whole concept between diets, oxygen chambers seems interesting? Anyone have any input on this?


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

Very exciting! Thank you all for your kind words!

My mom had her 1st scan since her SIRT....she has now been off of chemo for 4 months and had her first scan. She is stable no new growth and the Tumor is dead:)

I just received my mothers genomic sequencing read NO CLINICALLY ACTIONABLE DNA SEQUENCE VARIANTS WERE DETECTED.

This report was done at Barnes Jewish Memorial...sample taken from actual tumor following surgery.

She had another test done at Yale...still waiting on results.

The rest of the report is jibberish to be but the front pages interpretation says what I wrote above. Does this mean they were unable to pin point the specific mutation she has therefor finding a targeted therapy would not be possible.

Anyone know how to decipher this report?

She is doing great right now....she ran 7 miles yesterday! She will have a scan in a few weeks to see how the SIRT worked. I'm just trying to stay one step ahead.

September 4, 2015 -- Tracking liver metastases on follow-up CT scans is a critical task for clinicians, but the process is time-consuming and often inefficient. A new automated method for detecting and segmenting liver metastases may help, according to an article published online in the Journal of Medical Imaging.

Designed to operate as a radiologist would, the algorithm identifies, tracks, and segments lesions to assess changes between baseline CT exams and follow-up studies. In testing, the technique yielded high sensitivity for detecting metastatic liver lesions, in addition to a 90% accuracy rate for tracking tumors on a set of follow-up cases, according to biomedical engineering doctoral student Avi Ben-Cohen and colleagues from Tel Aviv University and Sheba Medical Center in Israel.

"The initial results presented here look promising," they wrote. "We achieved high sensitivity and high Dice segmentation results as well as a high matching rate. ... Using the [Response Evaluation Criteria in Solid Tumors (RECIST)] diagnosis criteria, we obtained a success rate of 88%. Additionally, expert ratings of the automated system segmentation results were in strong agreement."


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

Just want to clarify....the chemo killed the nodes. Radiation next week for the tumor. I will keep you all updated.


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

5 years WOW!! You give all of hope and inspiration!! With out you and Cathy this journey would of been a nightmare. You are a companionate mentor and have helped so many with this cancer. THANK YOU from the bottom of my heart for all that you do for so many!! ,


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

I tried to see if I could copy a picture of my mom luck. It's been 2 years since her surgery and while the cancer has returned we are no longer living in a hopeless place. On 2 short years I have seen so much advancement with this disease that I wish anyone being diagnosed would never read old is so dated!!! People can and are living longer with Cholangio....the trick is this....BE YOUR OWN ADVOCATE!!!! doctors have old info. IF THEY ARE PUTTING YOU ON THE TYPICAL GEM/CIM... Be sure that all of the options have been well thought out. I feel that everyone needs to stay proactive and educated. This forum is the place not face book pages. Face book is great but with a limited amount of time this forum is the best resource!! So the cancer is back the chemo did work on the lymph nodes and now radiation for the tumor. Then off to Florida she goes for a couple of months of no chemo and we will hope and pray the cancer doesn't return. In the meantime I will stay on this forum watching for the latest advancements.  Mom is doing great....back to her running and picking apples with the grand kids...(I tried to upload pic....not sure it it worked:)


(2 replies, posted in General Discussion)

Anyone have any personal experience at Mass General? My moms going for a second opinion for radiation there on Thursday. She has been on Gem/cis for 3 months after a year and a half of remission. The chemo worked on the nodes but the lesion remains the same. Our hopes are that she receive radiation for the lesion and she could technically be back in remission....maybe maintenance chemo?? So off to Mass for a second opinion hoping to,get any inside info on people's experiences.


(15 replies, posted in Introductions!)

Hello Michael,

Welcome! We are from CT too. Please get a second opinion about resection! My mom had 5 doctors say no including one at Dana Farber.  Dr. Chapman at Barnes Jewish Memorial did what everyone said was not possible. You can send you scans you do not need to go in person. Nothing to loose. He is the expert at this surgery. Any questions please feel free to contact me. 860-836-2600 my name is Rosetta you can read about my moms journey under my user name Daisy