I started in the trial on Tuesday. I was nervous I wouldn’t be approved because of a preexisting liver issue. But thank God, I’m in. I had been off all meds including the monthly zolodex shot (last December 4) and no meds since January 8.
The molecular sequencing cake back w 5 mutations and 81 (!) trials. Good news for all of us is that there are lots of trials out there which means good news in future - near I hope! The MATCH trial is nationwide in phase 2. It was being run at my cancer center with 30 patients. My oncologist is directly involved with this one.
The medicine I take is Erdafitinib. From what I googled, it’s previously been used for bladder cancer. But it works to block an amplified gene FGFR1. This gene is responsible for cell proliferation.
No side effects. If it works, I should already show improvement in 2 months. I haven’t had any side effects. In the meantime, my oncologist is insisting on a brain mri. I’ve had nausea since November that I’m certain is from liver Mets...but I guess she wants to rule anything else out. I go Tuesday.
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Snowcone16
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I am Her2- but ER+. But remember that this trial isn’t addressing the hormone status and even Her2 status. It’s possible other breast cancers have the FGFR mutation. I read it’s found in 14% of breast cancers.
I was also eligible for TAPUR trial which looks like it runs pretty similarly. But since my own oncologist was leading MATCH I went with that one too.
You really are a Sister Warrior ! I hope it all goes well for you. For your MRI, Remember to get a washcloth over your eyes and just keep them closed for a while and relax. 😴
Thank you for being a brave soul..it gives us all hope for future meds that work from different fronts. I pray this new approach will work to eradicate cancer cells and restore your health.
Good luck with your MRI and let us know how you are doing. I’ve never had one so can’t offer any advice...
sister/warrior I pray this trial is a Godsend, where your supernatural results will be NED. Yes I am waiting your praise report, that will help so many of our other sisters/warriors. Amen XoXoXo
I have stated my interest in trials as soon as I got diagnosed with met stage 4 breast cancer. My form of it is very rare so I wanted to put myself out there in hopes of helping cure this dreadful disease. More treatments are great but we want a cure! I have an appt to see a dr in reference to HIPEC procedure. Which has cured some women in other countries. Because it has not been used for this here and there are so few of us out there no-one is pushing to get this procedure to be one of the standards of treatment and therefore used for people in my situation. It is so frustrating to know there is surgery out there that might cure me not treat me cure me. Yet is not a available, drs won’t try on breast cancer here, not enough data, how will they get the data without performing on breast cancer patients. Note - there will never be a large study because too few people present with my specific met only. There was a small (5 women who presented just like me) study in Italy. I am not wealthy, single and my insurance is Medicare. The cost of 1-2 months of Ibrance would most likely cover the price of the procedure. I am aware of and willing to take the risk. But have been unable to find a doctor grrrrrrrr. Sorry for rambling half asleep.
So are mine and that’s why I was asking because it is pretty rare I’m having a terrible time. My chemo stopped working and I’m going to begin Xeloda hopefully next week. Please let me know how your treatment goes we do need a cure for this.
What chemo were you on previously? I was on Xeloda for 4 cycles - did not work for me. My cancer marker bloods were the worst they have ever been. How ever I felt better than I have felt in a long time so it was a nice break. My ascites actually started coming back around cycle 3. I hope it kicks butt for you! Make sure you have really good lotion and cotton socks and gloves to help with the dryness it warns of in these areas. What was your original cancer neg pos, infiltrative ductile carcinoma? Is oddly exciting to run into some with mets to peritonuem only!
I was on letrozole and Ibrance for 18 months that did great until it stopped working. then I had a visceral crisis and went on Abraxane. My cancer is lobular carcinoma ER PR positive Her2 negative.
I have Invasive Ductal Carcinoma mets. The mets to the peritoneal cavity is more common with the lobular cancer. Mets to the peritoneal cavity alone (the only mets I have and that it’s IDC based) are what makes it pretty rare. I have not met a single person on any board or in person who presents like me. I am also ER/PR pos and her2 neg.
Hello Juliandrea, I don’t know that the peritoneal cavity itself has nerve endings or feels pain, discomfort on it’s own. The organs and flesh around it and contained in it are however - hugely impacted. To start with I have the same kinds of things happen as one who goes from 0 months pregnant to I would say 7-9 months pregnant 1x a week every week and it lasted for several (4) months. So you get huge around your belly, with all the muscle stretching, pushing out on your ribs, up on your lungs (making breathing work to impossible if you let it go too long, it could kill you), it shuffles about all your innards, makes them not function as they should, kidney pain from pressure and possibly from handling all this extra fluid can be quite severe, you, it messes up your waterworks making you retain water in other areas of your body also, you feel like you have to pee all the time and lots of times there is little there, your digestive tract gets very overcrowded and my stomach is made tiny with pressure ( when at its worst I can only eat 2-3 TBSP at a time) you have to eat many times a day to have any hopes of not losing all your fat stores as well as it starting to burn away at your muscles. The first time (I am now going through my second bout of ascites) I lost all my fat and my muscles were diminished. I am about a month and a half into this bout. When you stomach is so crowded, you live with heartburn reflux whether you eat or not, Nausea (I have vomited the last 4 nights with nothing but fluids in my stomach), your stomach can’t work as it should causing air/gases to get stuck there causing pain and burping. Probably some of the worst pain and discomfort come from what it does to your bowels and intestines, because of the denormalization of the pressure in my belly I have developed severe diverticulosis, the pain being bad enough occasionally to make me wish I would pass out and crying for my mother. I am gassy even when not eating those type of foods. Bloated with gas on top of the pressure caused by the ascitic fluid ( has been up to 4.5 liters drained at a time for myself but, I understand can get well up into the teens) so your intestines are being smushed in some areas and bloated in others, they don’t work right. Last time I had constant diarrhea this time I seem to be bound up. Although very unladylike flatulence seems like it is always there and actually a blessing as the pressure lessens. With the pressure up I feel like it is crowding my heart and liver also. Much like when you are pregnant energy is low, clothes don’t fit from day to day and sometimes minute to minute, the bulk of your belly pulls at your back and hips. Fluids in your legs leave them heavy. This all happens as the fluid builds up. Then you get drained once every couple weeks to start with, but the more you drain, the more often you have to drain and the fuller you become in a shorter time. Draining for me is starting to be a week apart at this time after 2 x e 2 weeks. The process is called a pericentesis. You go in into a radiologist, using an ultrasound, so as not to rupture your organs, they examine your belly for a large pocket of fluid) and mark with a marker, they then clean the area, put down sterile surgical surround with a hole in the middle, give you a bunch of shots of lidocaine to numb the surface layers, wait a minute or so make a small 1/4 inch slice and insert a long needle through your flesh and into the p cavity itself (you feel the pop) they remove the needle leaving a plastic canulla inserted connected to a plastic tube that is inserted into a vacuum bottle and draw fluid off. Sometimes is sucks onto your intestines and needs to be repositioned, as the stream of fluid eases they/you press on your belly trying to get as much fluid as possible out, when fluid is no longer being pulled out they remove the canulla and clean the area and bandage and you are done. You can feel the relief while this is happening but also the ribs without pressure feel sore and like they are being let go back to normal. You might be able to eat a bit more for a few meals but by the next day the cycle begins again as you are refilling. This is encredibly hard to face for me this time as I know I might feel all this for months to come and possibly longer if the new chemo they put you on doesn’t work. It is absolutely miserable enduring this and there is little to no quality to your life. It is the worst thing I have ever had happen to me including my first bout with cancer and the 4 months of infusion chemo I had.
Becca, thank you for your response. I am sorry you have to go through this everyday and especially so soon after the draining. This is the only place you have Mets? How old are you? I am asking as I have similar symptoms and I just had scan which I will be getting results for the end of February. The way I feel I am expecting anything. But I also hope and pray they have another treatment for me, this stress is unbelievable. I was diagnosed feb 2018 with Mets from the beginning in the bones and I have been on ibrance and letrozole and felt great. Then something changed. Are you on treatment now? Or is possibly surgery the only option? I am praying something helps you to at least live your life pain free. There isn’t anything they can give you?
I am now on Ibrance and faslodex. Other than the HIPEC there is no surgery that would help me. I am understanding that if the Ibrance does not work I will have to have infusion chemo as my oral chemo drug options will have run out. I have pain meds they do help with pain I have meds to help with most of the other things that stem from the ascites. Nothing works all that well. Yes this is the one and only location of my mets. I am 53. The petscan is the only test that showed the mets. While they were trying to figure out what was wrong with me I had 3 ct scans an mri and every other test they can think of. Not one of the other big expensive tests showed my mets. The cancer marker tests were showing large increase. I will pray for you too. The stress and anxiety waiting for results is off the charts!
I just did a Google search on the HIPEC surgery you mentioned and UPMC hospital I think it’s the Hillman Cancer Center comes up I’m going to call them if you want to leave me your phone number I will call you tomorrow.
I have gone to a few. Have been to drs in Ithaca, NY, Vero Beach Florida, Chambersburg, Pa. These are only local cancer doctors. I will be going to Roswell Cancer Hospital in Buffalo NY in March. Have been in contact with Drs who perform HIPEC in all three states I have lived in since being diagnosed, as well as Drs in a few other states. Mets to the peritoneal cavity are usually an end of disease (life) met and ones body is riddled with other mets. The prognosis 1-6 months. I am told I might be able to obtain this surgery as palliative care, but since it is not considered “standard” treatment my insurance is unlikely to cover it.
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