How are people with liver mets doing?
Comments
-
Lisajo. Vent away. Your friends who get it, are here. I don't know anything about triple negative. I do know about liver mets , I have progression, just found out. This time I am not a candidate for any local treatment my IR told me on Monday. But, I'm just on my second line TX $( if you don't count the six other IV TX I've had during my 26 years). I spend a lot of time and effort trying to sound hopeful for my family and friends. It's exhausting.The only place I ever speak the horrific truth is here. And that is not very often because mostly I cannot even speak on those awful days. I don't answer the phone, texts answer posts. Just deafening silence. I get it for sure.💞
0 -
I had my liver biopsy this morning. Praying pathology doesn't botch the sample and use it up like a drunken sailor again. In 2017, IR pulled a large biopsy sample in order to run a genetic test to qualify me for a different FGFR trial. Pathology used entire sample to test my hormone and HER2 status and didn't leave any for the Caris genomic panel. Today, the IR and my MO were on top of pathology to confirm pathology knew what they are doing and what needs to be provided to Foundation 1. Now, the waiting game begins!
0 -
JFL I'm glad they didn't mess it up this time. You reminded me that I need to remind my MO and IR about that when I get my BX. I had the PET yesterday, I go see my MO on Monday. I'm hoping we are on the same page about a new BX.
She wanted me to start Afinitor four months ago, I bet she's going to want me to start it on Monday. Will that mess up my path results? I don't know how quickly I will get to have my liver BX. I think the best I could hope for would be next Thursday or Friday.
Did your BX hurt? Two years ago I had to be put out for mine. They were lots bigger last time also. Depending on what the PET shows, the one they are most concerned about is in my left lobe. I hope that's not hard to get to. It was 2cm last August on PET. Who knows what it will show this time.
Everything is a process, in the correct sequence, depending on so many different people, sometimes that's frightening.💞
0 -
Even after three years on these boards, I still get the shorthand confused. Is BX a biopsy?
0 -
Bx is biopsy. Dx is diagnosis.
Im finished withe second cycle of Xeloda and my markers are up. CRAP!!
What a weekend.
0 -
funthing42 - My markers went up after the first month but has come down every month since then. My onc said a rise was pretty common at first as things died off. Hoping that is the case for you as well.
0 -
thanks for the encouragement. I needed it Ive been pretty bummed out .0 -
funthing- my mArkers went up as well on Xeloda. After the third or fourth I’d get more worried. The doctor should tell usthese things so we don’t sit a freak out all the time. Of course it’s not them so they do not think about that. Someone once posted all their blood mArkers from a computer screen on the Xeloda thread. Was it blondie or jfl? They were on Xeloda quite some time and numbers were all over. High low high low. Sometimes I feel they pull you off drugs to fast.
0 -
Funthing, my tumor markers, alkaline phosphatase and liver enymes (AST and ALT) went up the first 4 months of Xeloda. During that time, I experienced the most effective response to to date. My liver was 70% mets when I started Xeloda - including nearly the entire left lobe being mets. By my 3 month PET scan after starting Xeloda, all of my liver tumors were inactive and had started to shrink. Don't jump ship before having a scan.
Grannax, the biopsy did not hurt. I was awake the whole time, talking to the doctor. I was knocked out for my first liver biopsy in 2017 before even being wheeled into the biopsy room (the procedure table reminded me of Y90!). This time, they didn't give me any sedation until the very last minute, a few minutes before the biopsy needle went in. I asked for local only but ultimately agreed to a mini dose of sedation - I think 25% of the regular dose. The IR had me hold my breath a whole bunch of times in the scanner so I don't know how they handled that the first time when I was asleep. The only reason I agreed to sedation at all was that I didn't want to disrupt the procedure in case I could feel something and was tightening my stomach, moving or asking the doctor to stop midway through procedure. I didn't want to botch my own biopsy. Given that there are no nerve endings in the liver, they only need to numb the skin/muscle/capsule around the liver with the local lidocaine. Given my mini dose of sedation, I was able to leave after 1 rather than 2-3 hours.
Grannax, I know you are not too jazzed about Afinitor. As far as both side effects and efficacy, I found Xeloda much more tolerable than Aphonytor (as LA Lady would call it) and it was much more effective as well. People think chemo and freak out but Xeloda is an oral pill and is my "favorite" treatment I have had to date. My only major side effect was manageable hand-foot syndrome. On Afinitor I had awful mouth sores and developed a mild - moderate chronic lung issue that had me on my toes, given Afinitor's risk of causing pneumonitis and serious lung issues. I only took Afinitor for 3 months as it did slow down the cancer growth but did not stop it. I also prefer Xeloda to Ibrance/AI/Faslodex from a side effect profile. Could that be an option for you? It is particularly effective in liver mets. It is in an inactive form when swallowed and activates in the liver due to a certain liver enzyme.
0 -
Grannax, I had twilight sleep with my liver bx and it was fine. I saw my liver on the ultrasound, then fell asleep before the needle went in. I didn't have a moment's discomfort.
I started the immunotherpy trial Tuesday and it's been a wild week, schedule-wise. So far, I'm feeling fine and this week will be more normal, only one appointment at MDA (which in patient lingo stands for Most of the DAy)! wish you and everyone the best week possible under our circumstances!
Katty
0 -
JFL. Yes I have heard Xeloda is better for liver mets. When I asked her, four months ag,o she said Afinator is newer. Plus I already have one bottle of it..
I'm glad to hear your BX was not painful. Which lobe did they go in? How many cm is yours? I'm just concerned that mine is in a hard area to reach, not like last time when I had multiple big ones in both sides. Plus, I'm allergic to CT contrast. Mine this time is in left lobe, on last PET it was 2cm. I don't know what new PET will say.
I had to be intubated last time because my sats would not stay up. I had lots of lung mets back then, I don't now.
0 -
Kattysmith- Good, you got into a trial? which one?
0 -
I agree with JFL that people should not frightened of Xeloda just because it is chemo. I prefer it to Ibrance + letrozole and to Faslodex + Afinitor. Better quality of life for me, with less treatment-caused fatigue and pain. have been on it for something like a year and a half and am doing very well.
0 -
Cure-ious -this is the one. https://clinicaltrials.gov/ct2/show/NCT03369223
Tumors are still ER/PR+/HER2-, and am not 100% sure why I was selected for this trial. I don't appear to have any specific mutations that would make me a good candidate. The study doctor did say that he has seen some promising responses in ER/PR+/HER2- when I asked him about the fact that I've seen immunotherapy trials for TN patients only. This is day 6 and I go for a follow-up on Tuesday.
0 -
Katty, did your tumor show many mutations or microsatellite instability? Grade 3 might do that. I see that the nivolumab / Opdivo (in trial arm 2) is an anti PD1 drug and if I remember correctly MSI is a good match for that kind of treatment. Looking up the other trial drug...
0 -
Ok the other drug in that trial (BMS...) is another immunotherapy drug that affects a different pathway called CTLA. (Sorry, hard to post a link at the monument. )
”Inhibiting the CTLA-4 pathway1,6-10:
- Enhances T-cell activation and amplifies T-cell proliferation
- Promotes the generation of memory T cells, thereby providing a long-term antitumor response” Using both drugs at once may enhance the effectiveness.
0 -
Kattysmith, good luck in your trial! Sounds very interesting. Nice that there is a trial permitting an ER+/PR+/HER2- profile. I am hoping experts crack the code on how to treat hormone positive breast cancer with immunotherapy.
Grannax, my biopsy was in my left lobe both times. Tumor this time was 1cm (which is on the small side for me). Left lobe may be easier because there is a lot less ribs covering it versus the right. Easier access. The IR didn't seem to have a problem. He took 4 samples, I believe, based on my counting - I heard 5 clicks - I think 4 were biopsy sample pulls and the 5th was an injection of the foam to block post biopsy bleeding. The body eventually absorbs the foam. I did develop is slight temperature for 1.5 days after biopsy (which IR believes is a reaction to the foam). Now, if my immune system attacking that foam could just notice the cancer cells right next to it! I didn't receive contrast with the CT either biopsy.
Shetland, 1.5 years on Xeloda - amazing. I hope you have many more.
I just officially passed my 4 year diagnosis of extensive liver and bone mets. My bones are light years better than they were when I was diagnosed and my liver is is better shape too, despite already going through 5 lines of treatment and awaiting my 6th right now. Praying I can continue to plug and chug along for many more years. My son will be turning 4 in a few weeks but I have many, many more years to go to raise him. He is not even in kindergarten or official pre-K yet . . . . . I still pray for a miracle every day.
0 -
JFL you are a fighter, girl. What a super mommy your son has. You give me hope.
I am so relieved to hear that your BX was in the left lobe, like mine. And that IR did not have any trouble getting to it. I will find out today how much my tumor has grown according to the PET. Then I hope to schedule a BX, for this week if possible. I was so out for my first one that I didn't remember about the CT not needing contrast for this procedure.
What would I do without this thread and my friends here? I don't plan to find out. I plan to have a few more Christmases as I plug along, one treatments after the next, learning what to expect from the ones here who are ahead of me. 💞
0 -
Grannax, the procedure was so fast. He said I would feel a bit of pain when he did the local lidocaine and then suddenly it seemed like he was done a minute later with the whole thing. I didn’t feel when he put the biopsy tube in - not even a bit of pressure. I thought he was still working on the lidocaine and then he said “all done”.
0 -
Katty- Great, I get so excited when I see them pushing for an immuno treatment that may work for ER-positive tumors, as its got the biggest upside potential for us (at the moment)!! As Shetland says, you might have some mocrosattelite instability, and another way you could be inherently responsive to immunotherapy would be if your cancer has a CDK12 mutation (about 5% of breast, prostate and ovarian cancers do), because that mutation increases PDL1 expression.
I was just looking at a trial at UCSF that involves Dinacyclib, which is a CDK inhibitor that inhibits several CDKs, and is a really good inhibitor of CDK12- taking this drug should be like having a mutation in CDK12, in that the cancer should becomessensitive to immunotherapy. The trial at UCSF tests Dinacyclib with Keytruda (immunotherapy), and so far is just for triple-negative, but if this combo works, it could very well work great for ER-positive tumors as well, so its worth keeping an eye on how it does- perhaps there will be a report at ASCO- other CDK12 inhibitors that are more selective are making their way into clinical trials, though, so they might drop the Dinaciclib
here is a link:Phase 1b, started June 2016 and trial will be over in Aug 2019
https://clinicaltrials.gov/ct2/show/NCT016767530 -
JFL & Shetland, you made my day by saying Xeloda is not so bad!! Also, since you had a great response, there is a clinical trials using it for combos, so you might consider to take it again in a different formulation.
0 -
I was on Xeloda for three years. Would go back to it in a heartbeat if I could.
0 -
I'm back on the boards - having had a bit of a break after a really horrible couple of weeks. I can t remember what I last reported but I have been feeling miserable, and desperate to get back onto chemo. Carboplatin failed me, I couldn't take Abraxane (could never get my white blood cells back to take it to the weekly schedule) Havalen sent me on a massive dehydration and constipation spiral and massively upset my white and red blood markers and other indicators eg Magnesium, Potassium etc ( all the 'isms') going too crazy low. and to two ER visits. On top of this I was miserably trying to balance blood thinning because they found small clot on my lung.(Oh for a simple life) I had a Pet scan and unfortunately my liver enlarged and also the spots of cancer grew. So I feel cramped and breathless. All in all a nightmare.
Finally settled down, and I'm back on Cisplatin (which I am grateful for the 3 week break and not weekly chemo which I have struggled to tolerate) This chemo brought me back when my liver went crazy in April - and my Bilirubin was so high (Max 21!!) Its one that can be used the if the liver is poorly and indicators high, goes through the kidneys so you get lots of hydration whilst getting Cisplatin. I had stopped it because of the effect only hearing so hopefully - so I hope I can get some benefit from it. Feeling not too bad a week after the first dose. Looking forward to a good Christmas before my next dose on 31st. Dec.
We brought out boys home early from college because I was so ill - and I do feel I have slipped a little more to more serious days. I am still unable to walk far (got a wheelchair from my insurance and a disabled parking badge - this feels odd but I definitely need this to be able to get out) I have had lots of family fly in from the UK to help, so my Christmas shopping has continued if that is all I an do in a day!
I wish all of you well and hope you are having great success indoor treatments. I wish I could send you personal best wishes as each day goes by, but my concentration and big fatigue has made it hard to keep up and both read or post here. I just wanted to let you all know I am chugging along - tolerating my current treatment (Cisplatin) well so far, and though I don't look much further than the next week or two have hope for some good times along the way.
With love
Sarah
0 -
Sarah, I'm sorry you've been having such a miserable time and I'm glad you're doing better on Cisplatin. I hope it really helps you and you have a good Christmas.
0 -
Sarah...sorry to read your news....May you experience stability on cisplatin for a very long time.
Happy new year!
0 -
Sarah, it's good to hear from you and I'm keeping my fingers crossed that Cisplatin keeps you stable. I'm so happy for you that your family has been able to be there! Happy Christmas or as John Lennon once said, "Happy Crimble!" Peace and comfort being sent from Texas to you.
0 -
Scwilly..yeah! I wrote down Cisplatin for future reference. So happy to hear from you.
0 -
Sarah, I'm on a three week break from Abraxane that has stretched to six due to a horrible cold I just couldn't knock. I see the onc. Today to see what my PET says absenteeism going next! The break was due to bad side effects. Was ready to quit!
0 -
My visit with MO was interesting. Seems like I have mystified four radiologists and my MO. Short story is that I do have progression in my lung, chest and liver. Also, the liver met that started all this testing and re testing is mysteriously gone. My MO said " bizarre", I said I do bizarre really well. My Nick name is zebra from many docs.
So, the plan: stop IL, schedule Liver BX for this week, Start AA on the 31st. She said We lost four months but all in all you're still in pretty good shape. The craziness of cancer defies any logic and becomes a guessing game! Grrr. I said that not my MO.
My biggest request was that I wanted a BX this week. I had to push a little for that. Thankfully, I found out earlier that day that my IR does have openings this week. I don't know which day yet.
So, unless the BX pathology comes back saying I have morphed to HER 2, I wil give AA a try. I have no confidence in that combo but I won't know unless I try. 💞
0 -
Hey Sarah, it's good to hear from you. Still sending lots of positive vibes and thoughts your way hoping to keep that effing cancer at bay.
Daniel
0
