How are people with liver mets doing?
Comments
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Oh, I am just overwhelmed with treatment decisions. Found a trial combining parp inhibitors and immunos which looked perfect but now symptoms of quick progression cast doubt there is time to wait to get in a trial. How can you even stand the waiting? New respect for all you strong ladies. Where the hell is my crystal ball? How can there not be a better way for is to know what we should do next? Feeling tired and angry. Thanks for allowing the rant. Mom you remind me that Opdivo and abraxane is still an option and a good one. It will be okay one way or another.
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Shetland and Mom, thanks for the info re: ERBB2 mutations / HER2 equivocal. Mom, my recent primary liver biopsy indicated HER2 equivocal with a note that said it would be sent for FISH. No FISH results yet. When I was early stage, my primary breast biopsy said HER2 +2 but when sent for FISH, the FISH was negative. I may end up in the same situation now. Regardless, I think HER2 treatments would help me, especially since the nature of my BC is super aggressive, fast growing. Everything seems to be amplified. I am hoping something will come out of this.
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Hi K - for what it's worth, I'm doing ok on Abraxane (just finished 3rd round), my numbers are improving and thanks to cold caps I have my hair. But you have a lot to consider with TNC. Z - I have been working from home and reading up on the future; immune therapy, abembaciclib, etc. Very interested in the latter if it can be a mono med without an A/I for those of us who have become hormone resistant - or even for someone like you wanting to keep a little estrogen around. lol Big question is whether it can be approved and/or useful after an Ibrance CDK 4/6 fail. I am very curious. My onc told me ribociclib was a no go after Ibrance. Any thoughts? As for Abraxane, I am set for 9 rounds and then 9 more if I do well. That's an upside down reward.
Then what? So far my liver is behaving, but jaw met and some bone ache still a problem. (()) Claire roasting in CA
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Ugh, Kaayborg, that we have to make these decisions without enough info and when we are under progression stress is so hard. So maybe you go with what is readily available and quick while you keep doing research? Ask yourself and your onc for gut feeling about the best treatment? Is there any way to get fast-tracked into the trial?
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Bluebird-DE and others on washing your hair
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kaayborg - trial sounds interesting. can you post a link. the way to handle that is to jump on some reasonable standard of care regime while you deal with vetting trials and completing the intake process. do you have any reasonable standard of care option?
>Z<
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z- I will ask about that but our thinking was that if I jumped on Xeloda in the meantime and it was effective, why would I switch to the trial? Also another line before immuno seems to decrease likely effectiveness of immuno. And, this trial requires I have new progression before beginning. I wish there were a fast track. Here's the study and the abstract from Ph1...begin at smiley face for the good part. I think those great results may be in a population of mostly BRCA mutations but still, they look so good.
https://clinicaltrials.gov/ct2/show/NCT02484404
Abstract
Purpose Data suggest that DNA damage by poly (ADP-ribose) polymerase inhibition and/or reduced vascular endothelial growth factor signaling by vascular endothelial growth factor receptor inhibition may complement antitumor activity of immune checkpoint blockade. We hypothesize the programmed death-ligand 1 (PD-L1) inhibitor, durvalumab, olaparib, or cediranib combinations are tolerable and active in recurrent women's cancers. Patients and Methods This phase I study tested durvalumab doublets in parallel 3 + 3 dose escalations. Durvalumab was administered at 10 mg/kg every 2 weeks or 1,500 mg every 4 weeks with either olaparib tablets twice daily or cediranib on two schedules. The primary end point was the recommended phase II dose (RP2D). Response rate and pharmacokinetic analysis were secondary end points. Results Between June 2015 and May 2016, 26 women were enrolled. The RP2D was durvalumab 1,500 mg every 4 weeks with olaparib 300 mg twice a day, or cediranib 20 mg, 5 days on/2 days off. No dose-limiting toxicity was recorded with durvalumab plus olaparib. The cediranib intermittent schedule (n = 6) was examined because of recurrent grade 2 and non-dose-limiting toxicity grade 3 and 4 adverse events (AEs) on the daily schedule (n = 8). Treatment-emergent AEs included hypertension (two of eight), diarrhea (two of eight), pulmonary embolism (two of eight), pulmonary hypertension (one of eight), and lymphopenia (one of eight). Durvalumab plus intermittent cediranib grade 3 and 4 AEs were hypertension (one of six) and fatigue (one of six). Exposure to durvalumab increased cediranib area under the curve and maximum plasma concentration on the daily, but not intermittent, schedules.
Two partial responses (≥15 months and ≥ 11 months) and eight stable diseases ≥ 4 months (median, 8 months [4 to 14.5 months]) were seen in patients who received durvalumab plus olaparib, yielding an 83% disease control rate. Six partial responses (≥ 5 to ≥ 8 months) and three stable diseases ≥ 4 months (4 to ≥ 8 months) were seen in 12 evaluable patients who received durvalumab plus cediranib, for a 50% response rate and a 75% disease control rate. Response to therapy was independent of PD-L1 expression.Conclusion To our knowledge, this is the first reported anti-PD-L1 plus olaparib or cediranib combination therapy. The RP2Ds of durvalumab plus olaparib and durvalumab plus intermittent cediranib are tolerable and active. Phase II studies with biomarker evaluation are ongoing.0 -
Shetland, another crappy part of the thing is so many immuno trials (all I have found) exclude you if you have a prior immunotherapy history. So no doing the off-trial immuno in the meantime.
Oh, well, another...it is what it is. Thanks all for thinking of me. I do feel better this morning, but belly swells so much at night and pressure increases that it sets me in a panic.
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Bluebird, your hair looks great!
Lalady, I think that after you are off an AI for sometimes you will respond to it again. The abembaciclib I believe they are testing if it's effective without hormone suppression.
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Kaayborg - note that durvalumab plus olaparib had a significantly better disease control rate ... so shoot for the olaparib arm.
One option is to vet and get evaluated for this trial ... and then stay on Xeloda until it fails. Only then switch to the trial. You may have to play the system a bit ... pretend you intend to switch immediately upon acceptance and then don't switch. I am sure they will take you later and process will be accelerated. This trial will be around for a while. The way they make you delay before entering trials is so dangerous for patients. I don't have problems gaming the system when what they are doing is so wrong.
Alternately, why not move to this trial once you get in, even if Xeloda is working? IMO, that's awesome because then you know exactly what to do if the trial fails you.
The final option is to go on Xeloda and then start the vetting process for this trial after it fails. It will go faster at that point simply because you have a specific trial in mind, you know who to call and what you have to do to get in. You can start at the earliest signs Xeloda is failing ... This trial will be going on for years and will be there for you when you need it.
There is strategy for lining up and getting into trials. I wish people would routinely think ahead about what trials they want to get into, what's involved. Odds are we are all going to progress but the routine is to scramble for a plan when are emotionally and physically vulnerable. We need a plan or we will miss the best options. Doctors won't plan ahead because it takes too much of their time exploring hypothetical options, so patients think they shouldn't. But they should. <end rant>
In any case, I am breathing a sigh of relief watching solid options are falling into place for you. This is looking good. I am blown away by the outcomes they are seeing on this trial ..
Two partial responses (≥15 months and ≥ 11 months) and eight stable diseases ≥ 4 months (median, 8 months [4 to 14.5 months]) were seen in patients who received durvalumab plus olaparib, yielding an 83% disease control rate.
It hardly matters whether you do this now or later. You have an ace in your pocket.
Everyone should have this trial on their radar, even though it only accepts TNBC patients. I don't see why it would only work on TNBC and the combination of immunotherapy and PARP inhibitors is well understood to be a promising direction for immunotherapy. If I am right eligibility will expand with time. Now, if they would add a chemo or hormone therapy component that more cancer cells making the cancer even more visible to the immune system we could have a winner... There are thousands of people dying each year ... and yet they plod along.
MomATT- this is an another reasonable immunotherapy treatment that Dani might consider. As I write this, I can't imagine how tired you are of considering options. At the same time, I know you will never give up. So here is an option. I wish they would let her do Herceptin at the same time ... oh these freakin trial restrictions.
Hang in there everyone.
>Z<
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Z, your extensive, wise, and caring responses are so appreciated and you are helping me compile many good questions for tomorrow. I also sent a few more to the study coordinator. I really like what you said about the importance of exploring hypothetical options before progression. Too true.
I would be in the durvalumab-o arm...which all the further makes this study hard to pass up. You have me reconsidering Xeloda next. Any pulse on the current info regarding heavily pre-treated cancers and immunos' effectiveness? My previous understanding was immunos are best earlier rather than later, which is why we were really hoping for immuno next. Atezo's single agent effectiveness drops from 27% to 7% from first line to second line, for example.
Not sure how tomorrow's going to shake out but I have feeling I'll either end up doing Xeloda or going for Opdivo off-study, alone or with Abraxane. Doubt I'll be waiting for durvalumab.
Anybody know if Abraxane sometimes works if Taxol did not? No way to know for sure but having had Taxol at stage 1a and ending up with a liver choke full of cancer 6 months later leads me to believe it maybe wasn't so hot.
Also, anyone experience "heartburn" as a result of an angry liver? I've got pain right under my breasts, upper rib cage area and through to my back in same area, and it's worse in the evening when I have more abdominal bloating, though today, it was fairly uncomfortable even during the day. This happened right before my mets diagnosis so I think I just need to get on treatment and fast. Will see what the numbers are with tomorrow's blood draw.
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Sad to see that Raewyn's (rgc77) husband posted her passing in the TNBC thread yesterday. She passed away on August 14th.
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Kaayborg - thanks for letting us know about Raewyn. Very sad to hear.
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Kaayborg, Thank you for posting the sad news about Raewyn. I am glad that she was able to make that recent trip with her family. I was touched by her attitude and spirit. My sympathies and thoughts go out to her family.
Hugs from, Lynne
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Kaayborg - I read a couple of your posts mentioning abdominal swelling and pain in your back/rib cage. Is there any change that you are having ascites? I had it a year ago and it was a gong show to get diagnosed. PM me if you want more information. Anyway, I was responding to treatment but we believe that I was actually an over responder to the treatment.
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It's surprising that so many drs don't even consider the ascites possibility.
Pressure, bloating, pain...that would be my first guess.
Idiots!
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My onc mentioned she may do ultrasound tomorrow to check for fluid. The funny thing though is that at dx while I did have ascites and was very uncomfortable it wasn't even enough to drain. It was nearly all liver enlargement. Feeling a bit like a weird one. Wish you could just lift a flap and look inside to see what's up. Skip all this scan nonsense. Except that sounds really gross. While we're wishing might as well come up with something better than that. How bout we just wish the whole drama gone?
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Yeah, everything...the bone crap, the liver shiz, the brain 'effery.
I'm done 😜
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Hugs and the strength to do whatever you need to do coming your way in endless waves. Are you able to sleep?
>Z<
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I'm sleeping more but still really tired. Not a good sign. I even fall asleep watching TV.
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Lita, today's the day for the MRI, right? Seems like you had to wait too long for this day. Which leads me to my next beef. I think I should get priority readings on my scans if this beast of cancer is going to progress at such a speedy rate. I lost a whole week lead on making treatment decisions and potentially landing a trial just waiting for test results. I think I'm going to request as much today. Grrr...best wishes, Lita.
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Lita and Kaayborg, you are both in my thoughts and prayers today. Praying for good results and sound treatment options.
Claudia
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Sad to hear about Raewyn. So wonderful she had that amazing, cross-country family trip rightbefore she passed. I was amazed anyone had the stamina for that trip, I didn't realize she was that close to the end. She certainly finished strong
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Z you are amazing ☺️
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It's hard to write this, but when it comes to cancer, most people go pretty fast at the very end. It was that way with my mom (she had soft tissue sarcoma), the last 2 wks were the worst, and it was that way with VYW (won't use full names out of respect for families' privacy). VYW was driving to her onc appt, had a horrible pain in the side (liver imploded or something) and she passed in about 5 days. JF was on hospice for only about a week (but she had slowly been declining and sleeping a lot the last month). AD with brain mets was on hospice for only 2 wks, too.
I hope it's REALLY fast for all of us, too, but MANY, MANY months (dare I say YEARS?) down the road, and we can still enjoy life for as long as we can.
I'm off to my brain MRI. Wish me luck. Hopefully it will be something that is easily treatable.
Someone at my live group said, "If you have to get cancer, THIS is the time to get it...so many new procedures and new Rx's coming down the pike."
Somehow, that doesn't really comfort me at all.
Sigh...
L
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Lita - We're all driving over to the MRI with you. The wonderful prospect of more procedures doesn't get me excited either. That said, brain mets are treatable. Scary though.
Let us know how you are feeling when it is over.
>Z<
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MomATT and everyone with HER2+ - Here is a trial for HER2+ at MSKCC and sites around the country. The drug is a cytotoxic compound attached to a HER2 antibody. Think cancer smart bomb. They are getting a 90% disease control rate in heavily pre-treated patients who are HER2+. They were approved for fast track designation by the FDA today. Something to keep in you pocket ...
>Z<
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Kayborg and Lita,
Sending hugs and hopes for good treatment options. Sometimes people don't know what to say and therefore you get something popping out of their mouths that's supposed to be comforting but really isn't.
My evil twin's response is your're nuts, it's NEVER a good time for BC, or if it's such a good time why not join in, but then I get a grip, and my other side less then saintly just smiles.
On another topic, a few nights ago, I watched an interview with Dr Uzma Yunus, a psychiatrist and BC stage IV patient. She has a blog which covers the last four years from the initial diagnose to the present. For those who might be interested she is a great speaker and many of her experiences were similar to mine own.
She also has a sense of humor, her blog is "Left Boob Gone Rogue".
Kathy
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First, Lita, I completely agree with you about it being fast in the end. That is what I have gathered from those I have known as well. It's good and frightening all the same.
As for my appt, one thing I know for sure is Z, you would love my oncologist. When she left my husband and I looked at each other, both thinking the exact same thing. ""She said everything Z said" ...before we could even ask it, even the part of about not telling the trial coordinators I'm starting another treatment. She was funny about this, not wanting me to think her shady in any way but clearly she is frustrated as well with the bureaucracy and said as much.
So it's Xeloda. Happy to have a plan but bummed for the first time ever to be facing a three day weekend. One more day delay in getting started on something. Gosh, I hope it works. The speed of this cancer just freaks me out.
Liver enzymes were elevated some over last week but not so very much to have to go with a bigger gun than Xeloda. I'll do blood tests weekly for a while to keep check. All in all I feel good about the decision and the appt. The one crappy piece is that the cancer may have escaped the liver. Have a palpable nodule just north of my navel. Could be just fatty tissue. I think I already know it's not. Please Xeloda, stop this train.
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Kaayborg - Keep that oncologist. I see a lot of people doing well on Xeloda. I have seen studies that show that lower doses of Xeloda give the same outcome as higher doses. I've seen people ramp up onto Xeloda until the side effects appear and then they drop a notch and stick there. I don't think it has to be a hard treatment to work, but the max tolerable dose seems to be different for different people. I think Xeloda will most likely stop the train, but anytime you want to move that trial, just do it. It's a very interesting trial. It's important not to be living at the edge of a cliff. I am glad you have some territory ahead mapped out.
I think the palpable nodule will be gone in a few weeks. Then what is now a source of stress will ultimately give you some confidence and peace.
>Z<
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