patty-in-illinois
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Well….the time has come that I have been ousted from the MATCH Phase 2 Study of the PK13 Specific Inhibitor GSK2636771. After being on it for four months, I had growth in the peritoneal lining and also a couple small nodules by my ovary that doubled in size. It sucks but we all know this cancer does suck!
I will go on Irinotecan, leucovoran, and xeloda and it will all be administered over a 48 hour period while wearing a fanny pack. This will happen every two weeks. Ahhhh…..I hate going back to chemo after I have not had bad side effects for so long….and they will more than likely be coming back to visit me. Get out the boxing gloves!
Well, two months ago (2- 28 day cycles) after taking the ECOGEAY 131 treatment arm P trial in the NCI MATCH Program. I just returned from MD Anderson from a scan and bloodwork. I had 6% shrinkage and stability. My bloodwork has not been affected by the trial, and it has actually improved every month!!
Other than diarrhea, slight abdominal pain occasionally, and fatigue that just started in the last couple of days, I do not have any other ill effects from the trial.
I am the first CC patient in this arm of the MATCH Program….and I am just skipping…skipping….skipping right along!!
Actually looking forward to my next scan!!Side note: Arm P is for the Loss of P-TEN
Well, two months after taking the ECOGEAY131-treatment arm P trial in the NCI MATCH Program, I just returned from MD Anderson from a scan and bloodwork. I had 6% decrease in node sizes and also stability. My bloodwork has not been affected at all….actually it is looking better every time I have a lab draw. Other than diarrhea and some slight abdominal discomfort occasionally, I have not had any other side effects. I am the first cholangiocarcinoma patient in THIS arm of the NCI MATCH Program….and it IS working! Skipping….skipping…..skipping right along in life!
Marion;
I just had a tumor sample done in November FOR the NCI Match Program. That is when it showed I had the loss of P-TEN. I believe they will not do another biopsy but go off the one already taken. I have read up on the drug I believe they are going to use and it also mentions the TP53 gene…which I also have. Seems like a perfect fit for me to try and bide my time until immunotherapy is a more viable option. Thanks for your input….and yours also Lainy!!Hi Mike; There are people on the trial and it seems to work for 8-10 months with few side effects except bothersome high phophate levels. After the above said months (which is an aveage), people have growth or new tumors/lesions. While on the drug, patients have reported 30-40% shrinkage of tumors or stability of disease. I was on it for 8 months before an arotocaval lymph node popped up.
I have received IMRT with Xeloda (capecitabine) and have had a great response every time. Some people have good results but I have talked to people that it did not work for them. Worst side effect for me is tiredness…sometimes lasting up to a month after you complete your IMRT. It really depends on the amount of GY’s (gamma rays) that are “cooking” the tumor or lymph nodes with. I rarely felt nauseous but just popped pill for nausea and it went away.
Marion~
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?
Best Regards,
Patty CorcoranKatrina, 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 had the liquid (blood) biopsy done about a year ago, and it basically came up with nothing. It was done by Guardant 60 also.
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!
Patty
Hi Serena~
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!!Hugs~~
PattyHi 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!!!
Hugs,
Patty
