October 5, 2015 at 7:44 pm #87978
Excellent news, Katrina, and so very encouraging to hear of the stable tumors and shrinkage. Based on my interaction with others I received negative and positive responses to the Cold Caps preventing hair loss.
This New York News article describes the success for one particular patient:
MarionOctober 5, 2015 at 7:25 pm #87977katrinaParticipant
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?August 18, 2015 at 1:39 am #87976katrinaParticipant
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.July 7, 2015 at 7:26 pm #87975knfarrowParticipant
Patty – thank you for this encouraging news. I also have an FGFR2 mutation in my tumor, so my oncologist made me aware of this trial. Right now, post-surgery, on my last scan in May, I had no tumor left. So, I’m not eligible for the trial currently. However, as she put it, it’s good to know that this is an option if we need it. Good luck to you, and I hope that the drug continues to work so well for you!
KathyJuly 7, 2015 at 6:15 pm #87974gavinModerator
What a great report, superb news!!! Thanks for this and let me say again, this is brilliant news, well chuffed for you!! And a doctor handing you money…. love it!!! And more to come from Dr Javle as well, superb! Thanks as well for the pic of the Dr and his children. Great that he sent you the pic and his kids look very happy with the book!
Hope you enjoy your holiday! A word of caution on Greece though. Not sure when you are going and I am sure you are aware of the economic chaos that Greece is in right now. Just in case you don’t know, the Greek banks have been closed since last week and IMO will not open until at least next week but who knows really, it could be longer. ATM’s in Greece are running out of physical notes and to me, this chaos shows no sign of ending anytime soon. My advice would be to take plenty of physical Euros for spending money as I don’t think card payments are being accepted now.
Not trying to put a downer on your holiday Patty but just thought I’d give you a heads up on what is happening in Greece on the ground as I like to follow things like this quite closely.
GavinJuly 6, 2015 at 12:38 am #87973patty-in-illinoisParticipant
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!!
June 10, 2015 at 1:14 am #87972patty-in-illinoisParticipant
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!
PattyJune 9, 2015 at 1:17 am #87971
One of the biggest complaint of patients is the inability of communicating with others participating in the same research study. It is great to see you connect and simultaneously allow us to follow your conversations as well. Thanks a bunch and tons of good wishes for an absolute, fantastic, and spectacular result.
MarionJune 8, 2015 at 11:59 pm #87970utahgal90Member
I am also in this clinical trial at The James Cancer Hospital and the Solove Research Center in Columbus, OH. I was diagnosed with stage 4 CC on 9/12/14. I started on Chem 9/16/14 and was on chemo for 3 months before it began to lose its effacy. I did genomic testing and was advised that this drug was specific to this genetic mutation and phase 1 results were promising.
I started the trial in February, like Patty I too struggled with managing my phosphate levels, I was obsessed with monitoring any foods with phosphate, but it did not matter, the drug itself causes the high phosophate levels. I was taken off the trial for week in Feb. and March, it was devastating to be taken off of the drug but once I got the first scan I see that it did not matter. Everyone in the trial has been taken temporarily off of the trial for the same reason.
I have had two scans and the tumor on my liver has shrunk by 40%. Tumor markers down by 50% in March; I have not checked the May numbers.
The only side effects that I have trouble managing the hand foot syndrome and my hair falling out initially. Additionally, recently all food taste bland-the exact same. Small price to pay to feel good.
I feel like my pre-diagnosis self 95% of the time, which is a blessing!!June 8, 2015 at 7:30 pm #87969
I believe that all major cancer centers initiate tumor type genotyping and I assume it to be comprehensive. Those treated in smaller centers may have to request their tumor tissue testing for genomic profiling by an independent research testing lab. By analyzing tumor tissue for certain genetic abnormalities, patients may then be able to be treated with a targeted drug based on the specific abnormality however; presently, not all mutations have a targeted drug for treatment and individual insurance coverage for testing varies. Similar to the NCI driven MASH initiative (Molecular Analysis for Therapy Choice Program) patients must no longer respond (or have never responded) to standard therapy and tumor is progressing. Please note: standard therapy for Cholangiocarcinoma consists of Gemcitabine and Cisplatin.
The MASH instantiated clinical research studies will be conducted in 2,4000 centers across the US however; as indicative to all clinical studies, patient accrual and launching of the MASH trial is a lengthy process and immediate results of the conducted studies may not be available for years to come. Speak with your physician about molecular testing and the upcoming MASH initiative.
MarionJune 7, 2015 at 7:27 pm #87968lainyParticipant
OMGOSH! Derin……a voice from Christmas past! So good to see you and thanks for that information. Good to see your smiling face and I hope you are doing well!June 7, 2015 at 6:27 pm #87967hamptonsarasotaMember
Quick question: How do you tell what mutation you have? I read FGFR in the above posts. Genetic testing? Don’t know if you’ve read of the NIH starting the cancer gene mapping trials but Sloan Kettering will do it and it costs you nothing out of your pocket nor does it cost your insurance anything. They are doing it to try to focus on those with mutations in the same gene to avoid trials of drugs on certain mutations that are not common…June 1, 2015 at 10:26 pm #87966vdaviscircaone-comMember
Hi! I haven’t posted in so long. I, too, am on the same BGJ398 trial that Patty is in. She has been my “run to” friend when I have a question about what I can eat or what to expect as this goes along since she is a bit ahead of me. Amazing and sweet person!!
I have my first scan this week with Dr. Javle at MD Anderson and am praying for the same positive results that she received.
I just signed in and popped right into clinical trials. Think I’ll browse around in all the areas and see what’s up with everybody.
Hugs and Love!
VickiMay 16, 2015 at 1:30 am #87965iowagirlMember
I think it’s just awesome that you guys are on these trials and are able to communicate how you’re feeling and results as time goes along. Thanks so much for sharing this with us.
Julie t.May 16, 2015 at 1:16 am #87964mbachiniModerator
Thanks for being in this trial and providing hope for others. Please keep us posted of your progress and information on the trial. Sending prayers to all of you! Hugs,
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