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At first it started with about 7 of us messaging each other via Facebook that were at MD Anderson on the trial. Then other people wanted to join it. I started it just so the first 7 of us could see each others posts about phosphate levels, scans, side effects, etc. I in no way intended to keep it from anyone. People feel at ease that no one but "our little group" could see the posts. There are currently two new people who have just recently went on the BGJ398 in conjunction with another agent/drug. I now wish I had put it on your site because it would have been there for everyone to find......any suggestions on how to transfer it to the CC page. I would contact all the members to make sure they were ok with me doing that. I do not have a problem with it one bit!!
Hope we can get it on the CC website for everyone to see......what's your suggestion?
Katrina, It is GREAT you are doing SO well on this trial. I made a private web page so we could all share our experiences. If you friend me on Facebook, I can send an invite to you to be in the group. You can then accept and be a part of this private group. NONE of your Facebook friend can see your posts ONLY people who have been on this drug. Good luck on the trial. I was on it for 8 months with great success before they found a few enlarged lymph nodes and took me off the trial.
I was 'ousted' from the MATCH Program basically since I do not fit into any of the "arms" of the trial. Dr. Javle says he thinks immune therapy would be the next step. The only mutation of interest in the report is the TP53 mutation. ANYONE who can chime in here with news about an immune trial for TP 53 would be greatly appreciated. On all the other genomic testing, I had the FGFR2 and P-Ten mutations. They are gone and we have changed to TP53. It's hard to keep up on what you have and don't have :-) Feeling anxious and now need to redirect my studying of mutations now to TP53!!
Happy New Year!!
Patty in Illinois
I had the liquid (blood) biopsy done about a year ago, and it basically came up with nothing. It was done by Guardant 60 also.
After being on the BGJ 398 trial, I had a lymph node that shrunk then started to grow so was taken off the trial at MD Anderson. I was on it for 8 cycles and it was a good ride with few side effects. Just time to move on. So, Dr. Javle and the clinical trial team really wants me to try BAY 1187982. It is an FGFR2 antibody-drug conjugate. Since the BGJ 398 trial quit working, this drug will target FGFR patients with tumor progression, neoangiogenesis, and chemo resistance. The antibody drug conjugate carries a microtubule auristatin. It is in phase one but showing great promise so far. I first, before anything, want the MATCH program done so I have that information as a backup plan IF I decide to proceed with this trial. It would require visits to MD Anderson every 3 week for liquid chemo. Coming from Illinois....that's a toughy but we will march on. There are four sites total doing this trial so I am limited to places closer to home to have the chemo every 3 weeks. Anyone else know much about this drug or anyone on it with any input on how they are doing. I have searched Bayer (drug company) and they had about a page of info but no real people to talk to who are on this trial. They are very highly recommending I consider this trial. I am just looking for any patients on this trial. I searched the CC site here and came up with nothing. Anyone out there with knowledge about this is encouraged to message me or call me at 618-392-2239. Thanks for reading all this jibberish~~
EVERY DAY IS A GOOD DAY!!
Patty in Illinois~
I posted in the Clinical Trail section of my last scan in Houston. Check in that section to see my report....so I don't have to rewrite it all. :-)
I would like to update everyone on the trial I am on (BGJ398). I was at MD Anderson on June 29 & 30th for scan/ lab work. eye dr visit, EKG and a visit with the great Dr. Malind Javle. My scan shows that my aortal lymph node is less active (FDG avid) and that I had two other small places that no one had ever mentioned but the clinical trial drug just erased them. GONE....like air.
When Dr. J entered the room, we exchanged money (as he has bought 7 of my children's hardback books that I have painted/had printed myself with all proceeds going to cancer charity). And he still needs another one!! :-))
He looks at me and says "Patty, the first thing when I got to work this morning was sit down at my desk and your scan/report was the first thing I read. I am very pleased with the results." He then states he hasn't looked at m CA 19-9 yet and pulled up my labwork which he said looks great. I can stay on the 75 mg dosage and then he saw my CA 19-9 on the labwork and just smiled. Dr. J states my CA 19-9 is probably lower than his or my husbands. He stated that my CA 19-9 when I found out I had this cancer was 886. At the end of April, my CA 19-9 was 7....which is really great. Today (June 30th) my CA 19-9 was 5.8. Dr. Javle put it in graph form on the computer and showed me the inclines and declines of that number. I believe for some people, that number might not mean a whole lot....but for me, it is tried and true of when my cancer is more active and when it is less active. So....I will continue on this trial and hope it keeps me stable and working until immunotherapy has all the bugs worked out of it for our type of cancer.
My husband just booked a trip for us to visit Venice, Italy for a few days, then boarding a ship for 7 days to explore the Greek Isles...then back to Venice for a few more days before flying back to the U.S. Doctors orders were to book our trip and have the time of or life! And that is exactly what I plan on doing!! I will leave you with a picture of Dr. Javle reading my children's book to his children. Very special of him to send me the picture!!
Hi UtahGal90......always great to see "another one of us" . My CA 19-9 was 7 in late April. I am at 75 mg but still on the trial...and I, too, feel great! Bike riding, walking, kayaking....with a lot of trips to MD Anderson in there also. My husband has researched phase 1 of BGJ398 and it seems the patients who have a lot of trouble with high phosphates are the ones seeing results. I pray it continues for everyone on this trial.
Not throwing in the towel!
I guess I have some catching up to do. After no treatment for 15 months, my scan showed a new aortal lymph node that was 20mm X 16 mm. Dr. Javle decided it was time to start something to stop this nodule from getting larger OR spreading. We discussed a few options and after much research, I was approved for the BGJ 398 trial. I started the trial in March of 2015 and after two months of being on the drug, having the drug reduced due to high phosphate levels, I had my first scan approximately a week ago. My nodule has shrunk to 13mm X 9 mm. The main tumor is mostly dead but still one spot that remains stable BUT still there. I am hopeful this trial drug will shrink that main live part of the tumor while on this drug. My kidney and liver functions are good. My CA 19-9 is 7.9! I started at 125 mg dosage but after two weeks, I had to go down to 100 mg. Two weeks later and I had to go down again to 75 mg. That is what I am on now. I take a pill once daily for three weeks and then one week off. The diet is a little bit of a lifestyle change when you take the pill. It is a low phosphate diet and that means no nuts, dairy, chocolate, potatoes, no wheat. I try and stay around 600 mg of phosphate a day but in the beginning, I tried my darndest by weighing my food, measuring it, but the dosage was just too high, therefore, we had to keep reducing the milligrams I took a day. I am headed back to MD Anderson next week for blood work and to see Dr. Javle. I pray I am able to keep on the 75 mg. I also take a phosphate binding pill called Sevelemar (Renvella) (with every meal) and that helps the high phosphate bind to your bowels and go out of the body "that route" instead of through the kidneys. Thus, lightening the load on the kidneys hopefully. So far, my kidneys are in good shape as is the liver....well, besides that pesky tumor in the middle of the liver! My liver enzymes were a little high before going on the trial but they have settled down and back into normal range. I feel great...I bike ride, I was in a 5K in Houston in April. I have noticed slight hair loss and maybe a little burn feeling (in the belly) about an hour after I take the trial pill....I just mentally tell myself it is eating at my tumor or nodule!! Thanks be to God I have never had pain with this cancer for the most part. I still have the original hydrocodone the doctor gave me in 2011. There are close to 15 people in the trial at MD Anderson....and two people in the trial at Mass Gen. That's about all I can update you with about the drug. Oh...YES, you must have the FGFR mutation. I am into my fifth year with this cancer....no surgeries...no resection....just the best doctor and God right beside me!!
Appr. two weeks ago, all was stable. My CA 19-9 has been 9 for two months. My white count is good. Platelets are good. ALL numbers were good and I have been off all treatments since November 2013. OK...I will back up and give a brief overview of my journey thus far. I was diagnosed in Feb. of 2011 with IHCC. I am treated at MD Anderson with Dr. Javle. I have had different chemo's and two separate rounds of radiation. My tumor is mostly necrotic although on my last scan in October of 2014, they found "suspicious nodules" in the lung. So small they cannot measure or biopsy them. So, I was sent home to enjoy the holidays and rescan in Feb 2015. Fast forward to the last few months.....I still do monthly blood work with my local oncologist and all had been fine until about a month ago. I noticed my liver panel levels started going up. Slowly at first, so I did nothing and the dr didn't even mention it to me. A week later, the enzymes were up even more. So, I asked to have them re-checked in a week. They were higher...then higher. I had a CT scan from chest to pelvis last week. All was clear. Blood work and dr visit yesterday shows levels are higher yet (into the 600's for the Alk Phos. The ALT and AST are high, also (and are rising). You might think bilirubin? It is .3 The dr believes I may have viral hepatitis or some sort of virus making these levels raise. I do not have any forms of hepatitis but my dr states I do not need to have one of the forms to have the VIRAL hepatitis. I am itchy at times...and a little pain in the liver area (it is rare but has happened a few times). They believe the pain is due to the liver or gall bladder being inflamed from the virus. My local dr talked to Dr. Javle per a phone conversation yesterday and he totally thinks my local oncologist is spot on and to NOT send me to Texas for an emergency visit. I am looking for anyone who has had this experience or any suggestions that it might be something different. I take lovenox due to blood clots when I first got cancer, I take a multi vitamin....and that is about it. I used to take milk thistle, selenium, etc but stopped when everything became so stable. I juice a lot and eat mostly vegetarian diet. Just unsettled and looking for ANYONE who has had anything like this happen. Yes, I trust my doctors...but I also know there are thousands of heads on this site....so that is even better than 2 heads! :-)
I have had IHCC for 3 years and 8 months. My local oncologist said I have the slowest growing CC he has ever seen in his life. Dr. Javle (at MD Anderson in Houston, Tx.) who I see every 3 months says I am very lucky to have a slow growing cancer.....otherwise, I would most likely not be here today with stage 4 cancer. Celebrate every day.....and may God always be right beside you!!
October 6th and 7th, I had checkup appointments at MD Anderson. It has been 11 months since IMRT and I was considered very stable with a CA 19-9 of 9.2. No treatments whatsoever since November 2013 and I must say, it has been a GREAT HOLIDAY of sorts. It had been 4 months since my last scan and (4 months ago) there was just a small pea sized uptake in the CC area. But at this most recent checkup, there was no uptake anywhere.....just death.
But, where there is sunshine (with cancer) sometimes there is rain. And....it rained on my 11 month holiday.... I have had previous nodules in the lungs since 2011 but they were of no concern. Today, numerous nodules in the chest that have been there since 2011 and have never been of any concern, today they had a slight uptake from the scan in July 2013. I had a few new nodules in the lungs and they ARE of concern and very likely represent metastasis. Dr. Javle states he is sure they are cancerous but so small to even measure them at this point. They are so small they cannot even biopsy them.....so, we wait. My CA 19-9 is now 10.2.
I am bummed to say the least....the report states that there is 1. Enlarging nodules suspicious for metastasis. 2. Indeterminate mediastinal nodes.
Just when the CC seems to be in hibernation or dead....only showing some scar tissue from radiation....this pops up. Dr. J states I will return in four months for scans and if we need to attack then, we will. He is also going to discuss my case with a pulmonary specialist/surgeon to see if they want to go in and get the nodes NOW....or wait. He states the protocol for lung chemo is very toxic.........he stated it twice. (once was enough :-).... Getting the news was almost like getting the diagnosis for CC. I am scared a bit. Dr. J states I am stable at this point but mets to the lungs does not sound stable to me. My faith has not been shaken....I know God is with me. But we all know that God will always be with us....on earth or in the afterlife. I am just not ready yet~~but are we ever :-)
I am walking 2 - 3 miles daily with no breathing problems.....eating fairly well. Juicing in the am adding flax seed. Taking several supplements...
So.....I am looking for advice on what to expect.....what do patients usually go on as far as chemo (if that is what the good dr decides). I am allergic to platin drugs. Anyone who has had mets to the lungs, chiming in here would not hurt my feeling a bit. I have NEVER smoked although both of my parents did. I am trying to stay as positive as possible as negativity gets a person nowhere. Is this where my battle starts going down a hill and I cannot climb back up it? I have probably read about mets to different places before but didn't pay that much attention since I could be of no help. Any words of knowledge are appreciated right now. I am sure this is just a curve in the road.......and we will be on straight paths soon!
Looking forward to some examples of mets from people....or what you that have been on here since ....well, a long time .....can give me for advice or where to search.
Since radiation in November, I have not been on any treatment because my CA 19-9 had dropped to 12. Well, after bloodwork, it shows my CA 19-9 has again dropped to 9.2!!! My tumor is slightly turning the same color as my liver......it is so stable that we were sent home with no orders for another 3 months!! Dr. Milind Javle says I am as stable as can be......its not usual to be as stable as I am...and the fact that my cancer marker is still moving in the downward direction. My liver and kidneys are in great shape....and the liver is regenerating from the radiation.
I asked Dr. Javle about Immunotherapy and since my tumor was so stable wouldn't it be a great time to attack it? He said he agreed it made sense but that is not how it would work. First off, Immunotherapy is still in clinical trials but has been approved for melanomas and lung cancer tumors. GET THIS: He stated he believes and hopes that Immunotherapy will be approved to start using in about a year if it is approved for CC. He truly believes it will work on CC and that it will be approved. I asked that if it was approved....could I immediately start getting it....he stated NO...you would THINK it would be like the Measles shot (you get the shot BEFORE you get the measles) but with Immunotherapy---you have to have an active tumor/tumors to start the process of Immunotherapy. I left feeling so hopeful and that it is just a matter of time (which we all know is sometimes NOT on our side) before we can squish cancer (even for our rare CC)!! Feeling blessed to hear all of this first hand from one of the top drs in the US. at MD Anderson for cholangiocarcinoma!!!!
Hi Iowa Girl!!
I am on Lovenox injections twice daily 12 hours apart. I have blood drawn every two weeks called an Anti XA (pronounced Anti Ten A) and I try to keep it around .50 to .75. At first they did not monitor it and I had a brain bleed. Coumadin is harder to regulate as it stays in the bloodstream longer. My heart dr who sucked out all of my clots (hundreds) said my blood doesn't like the cancer so it wants to clot...I was told no PICC lines, no port (I had it removed while in the hospital) no filters (and who needs them if you are on Lovenox). I hope you have good drug coverage...it's about $1000 a month but due to my husbands insurance, we pay $12. Feel free to call me if you have more questions at 618-392-2239. God Bless!!
Thank you all for the positive comments! I AM ALIVE and today as I sat outside sipping on my coffee, amidst a woods with birds chirping, squirrels shimmying up and down trees, wildflowers blooming everywhere.....and a few weeds..... that God is always there. I just said a silent "Thank You God!" We all have no choice but to march on until we can march no more. I am blessed with the CC Foundation....and all of you on this site. Keep on Marching!!!
https://www.youtube.com/watch?v=DBH4Wwx … ture=share
Please feel free to click on the link above to see my Inspirational Speech at our Annual Relay For Life. A $1,000 donation is given to the Cholangiocarcinoma Foundation from our funds raised for the ACS. We came in first for most money raised at just over $10,000.
Yes Marion, I received an e-mail from you. WOW....I feel honored! I e-mailed you back and will check my e-mail for updates from you. Chicago......Hmph! ;-)
Marion, our Relay is on May 3 but I would LOVE any and all info I could get my hands on. I am adding the symptoms of CC in my "talk" and anything you can get to me...Hooray! I had a call this am I'd like to share....I had a man from Israel call me today and said he read my blog and wanted to ask me some questions.....I answered them all as honestly as possible but told him I wasn't a dr.....I also talked to his wife. So delighted my blog reaches SO many people out there. God is good ALL the time......ALL the time, God is good!
Another update since IMRT 5 months ago. Tumor is inactive....no lymph nodes are inflamed except for some due to chronic sinusitis. All lymph nodes are clear and my CA 19-9 went from 10.2 to 11. My CEA is .09! This is the best report to date. Dr. Javle at MD Anderson has sent me home with no restrictions and just live life to the fullest. Hoping it does not spread or wake up for a loooooong time! It is mostly necrotic so lets hope for continued death!! Enjoyed trips to St. Thomas and Hawaii (each one was 10 day trips). Biking and doing my first 5K this past weekend. Life is good! I am the keynote speaker for our Relay For Life this year and we take a portion of that money (whether the American Cancer Society likes it or not!) and send it to the CC Foundation. Going to see a dr this week about my sinuses.....a dr other than a cancer dr...hmmmm, that's a new one in a long time. I'm 3 years, two months into this battle and have had many bumps in my journey but I feel better now than I have since getting CC. Glory to God in the highest!!! I have now reached across the nation to people in New Zealand and Venice, Italy to CC patients. Thaks to this site, I believe we are all drawn together and woven into an army of our own!! Thank you all for that!!
I finished IMRT in Early November, then returned to MD Anderson in January for a PET scan. It was clear and my CA 19-9 was 10.2. Dr. Javle said I was clear to go three months with NO treatment. I came home and felt the best ever in a very long time. I just returned for a checkup after that (3 months later) and scan are still clear....no lymph nodes are bothersome to them or any concern. Tumor is mostly necrotic and inactive. My CA 19-9 at now at 11. The dr said it was the best report ever since coming to MD Anderson. I was diagnosed in Feb of 2011 and started seeing Dr. Javle in April of 2011....after going to Mayo who gave no hope whatsoever....this wasted a few months but totally worth it with the expert care I receive from Dr. Malind Javle and MD Anderson. I am biking 10 miles on some days and walked in a 5K over the weekend. Feeling better and better every minute of each day. Feeling very blessed and thankful!!
I know I read a lot on this site but do not post nearly enough. I was diagnosed with ICC in February of 2011. Doctors said I had this dreaded cancer for appr. 3 years before I was diagnosed. After going to Mayo Clinic and not being the happiest with their thought....I turned to MD Anderson...and I have never looked back! After Gem/CIS...and an allergic reaction after 7 months, I had 28 treatments of IMRT (Spring 2012). At my 3 month checkup after the radiation, things did not look much better....so I was placed on Irinotecan. At the next 3 month visit, my tumor (too large to remove) was necrotic and I was considered stable and was advised to just stay on the Irinotecan. I was on Irinotecan until my last dose on September 30, 2013 (all the while remaining stable and CA 19-9 reducing each time). I went for a checkup in October to MD Anderson and I had a small growth at the dome of the liver (attached to the necrotic tumor). We decided to do IMRT again (13 days of treatment-twice daily......so 26 treatments in all) and target that little booger! I just returned from MD Anderson where a PET scan showed that the new tumor now shows no FDG avidity and is RESOLVED!! There are a few scattered nodular opacities in the lungs but Dr. Javle is not too worried as he believes that it might be from the radiation. The opacities are not FDG avid at this time. My CA 19-9 is now at an all time low at 10.2!! I was told to go home, live, no chemo or radiation. Just enjoy life and go back in 3 months and hope for more stability. Tumor removal is not an option (and I have been to 4 different well known doctors who have all said the same thing) but Dr. Javle states I am doing so well, why would I want to do that. Dr. J states that I have a chronic disease and we will treat it as problems arise.
As he was leaving the visit, he said "By the way I had this guy from New Dehli, India call me and somehow knew I was going to be in India next month for a Multi Disciplinary Conference. He pleaded with me to see his mother who has been diagnosed with cholangiocarcinoma." Dr. Javle told the man that he just didn't know if it was possible to see his mother as he had no office, no use of equipment, etc. The man pleaded and Dr. Javle finally agreed to see his mother. Dr. Javle asked the man..."By the way, how did you get my name?" The man stated "Patty's blog!" Dr. Javle didn't quite understand until the man said "Patty, your patient from Illinois" So...now Dr. Javle says I am known internationally in the CC community through my blog. Dr. Javle also said...."I believe people who are members of the CC Foundation are like a very close knit family....and I just said "YOU BET WE ARE!!!! God is good....all the time!!
BTW......my blog is over 94,000 hits at this time......I love knowing so many people are following my journey......from all ends of the earth!
I just got back from MD Anderson where I was told my tumor had shrank but it was slightly more FDG avid. I am currently on Itrinotecan every two weeks. Dr. Javle at MD Anderson (after meeting with a group on doctors to discuss my case in a conference)is suggesting IMRT....for the second time.
Last summer I had the 28 treatments and at first, they thought it didn't worked but later decided it had made the majority of my mass inside the liver necrotic. Basically it is very low - activity wise. BUT at the dome of the liver there is a spot that is still showing up FDG avid. They would like to do IMRT again for 13 days (just on the spot showing up brighter)...getting it twice a day-once in the am and once in the pm. Has ANYONE or does anyone know anything about doing this. The oncologist said it is not done a lot but they feel it will be of benefit to me. Dr. Das, the oncology radiologist says they HAVE did this in the past as MD Anderson but not ALOT. Dr. Javle has tried to get the oncology team to agree to do the IMRT for the past 6 months but since it shrank a little more this time, the oncology team is ready to say yes (the shrinkage made the tumor a little further away from my heart). They say NOW is the time. My CA 19-9 is at 19.....3 months ago, it was about 24.6. I am confused and worried about scar tissue....heart damage....any additional info or comments is appreciated.
I talked to another MD Anderson patient who alerted me to a new machine MD Anderson is trying to get FDA approved right now. She said it has already been tested on alot of different animals and is now built to hold up to 800 pounds. I Googled it and it is for pancreatic cancer but also VERY promising for liver patients. I would like any other input if people have heard of this machine "in process"
Hugs to all you CC patients and survivors!!
Well, time has came and gone....I have 3 days left of IMRT. My only symptoms were tiredness starting about day3 and lasting to Saturday evening. I also has some side pain where liver is located on right side. I also had a feeling that my belly was on fire about Thursday to Saturday so I just drank ALOT of water which is key anyway with this cancer. I have never had nausea or diarhea during the treatments. My care at MD Anderson and the radiation team I saw every day.....5 days a week, is what kept me so positive!!
So ready to start home this coming week. I will return in 6 weeks to see if it did any good at all.
Somethings I learned after starting treatment:
1. IMRT only treats the mass/tumor so it can spread to other parts of the liver or body
2. It might not work at all but to hope for stabilization to buy me more time
3. Do NOT eat for 3 hours before your IMRT and there is a less chance of getting sick.
4. Drink LOTS of water before treatment up to minutes before the treatment helped me to NOT get the "belly burn" feeling.
5. Hope and pray for the best!!
Patty in Illinois
I have stage V ICC. I was diagnosed in March of 2011 after a trip to the e-room for what I thought was gall bladder pain. After CT and MRI, it was confirmed I had a tumor in the liver. I then went to Mayo Clinic for a second opinion, where they offered pallative care. I didn't like that so I contacted MD Anderson and met with Dr. Javle. I had NO pain, no itching, no weight loss although I was very active and rode my bike up to 25 miles a day or walked. I also went to the gym. Dr. Javle stated I had the ICC for atleast 3 years. Mine is slow to grow but slow to shrink. For the first year (after diagnosis) it was pretty stable....I had Cisplatin/Gemzar for almost 6 months along with Tarceva. I then had an allergic reaction to Cisplatin so we switched to Xeloda and Gemzar along with Tareva. (In between all of this, I had blood clots, was put on a blood thinner, had a brain bleed due to blood getting too thin (I was in the hospital for 9 days)so they pulled me off the blood thinners completely, then I got the blood clots again. Now I take Enoxaparin as a blood thinner and it is tested weekly for clotting factor). I then had a reaction to Xeloda and they just put me on Tarceva and Gemzar. While on just the Tarceva and Gemzar, my tumor decided to get "brighter" and I had two lymph nodes close to the liver that were FDG avid. After a biopsy, they showed to have cancer cells in them. So, I am moving to Houston, Texas to get 5 1/2 weeks of IMRT starting April 23rd and will also take Xeloda again and an allergy pill to hopefully keep from having an allergy from it. I still do not take any pain meds. So I basically had it for 4 1/2 years total with no symptoms. I have been told I will never be a candidate for a transplant nor a resection (unless my tumor shrinks alot). I NEVER ask when my time is up or how long I have to live. I don't like deadlines and I would just feel like it was a ticking time bomb. Live each day, let the little things go by the wayside and just stay positive!
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