How are people with liver mets doing?
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I know Bev's partial hip replacement was a week ago, and later that week or this week the second procedure was to be done, so it would not be surprising if she is sleeping a lot as Nicole says. But I have been worried too, and my email has not been working for five days.
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So IJust completed my 5th cycle of Abraxane (3 txs a cycle) and will be done after my 6th. And by done I guess it’s technically a break if my scans are still showing improvement/ned. I don’t know if I will be ned but last scan showed most lesions gone and the biggest tumour had shrunk by Atleast 50%. Then the plan is endocrine therapy, likely tamoxifen or estrogen blocker since letrozole failed very quickly. I just find it wild that it seems many of us here are on chemo until it stops working , and then on to the next line. My experience so far has always been 6 cycles and then a wait and see approach, but also endocrine therapy (which is technically a treatment).
I’ve always wondered why that is. I know that they’ve discussed giving my body a break and a chance to rebound a little . They also mentioned that if it appears by the end of six cycles that it’s still effective , I can still have that in my pocket to try again if need be. I guess I’m curious why for some it’s indefinite chemo and others it’s a different approach.Thoughts?
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B-A-P, let me go look in the NCCN guidelines and see if they say anything about this. Give me a minute.
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B-A-P -- Thank you for providing some details of your Abraxane results so far. My wife, Polly, is starting Abraxane in the next couple of weeks and your story is so encouraging to us because Polly's prior treatments (e.g., Ibrance, Xeloda, Piqray, and Lynparza on a CT) really haven't slowed down her tumors all that much. Fingers crossed we can see some similar results as yours on Abraxane.
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so yes, B-A-P, they do talk about it. I have the guidelines in PDF. If you want a copy, pls pm me an email address & I can send you the whole thing.
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Hi BAP,
Interesting. Can you remind me where you are being treated? There seems to be two camps, those that continue a chemo regimen until it stops working and those who hit it and then shift back to endocrine therapy. My MO falls into the latter camp. He wants me to do six cycles of Xeloda and then switch to another endocrine treatment knowing that I have responded to Xeloda.
I am still researching to see if I can get to the heart of the strategy (beyond confusing the heck out of the cancer). I suspect part of this is trying to provide the best QOL possible. In his words, it would only drag me down to be on chemo continuously and we can hold it in reserve. I have two more cycles (just finishing cycle four) so nothing carved in stone but I will be having a long chat with him to better understand where he is going. It certainly is a different approach than many but I have to say that I wouldn’t be unhappy to leave the fatigue and HFS behind for a little while. Of course, I’m also running low on options for endocrine therapy....
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Thanks Moth ! I’ll send you a message !
Mike , I hope so too ! I hope it’s still works for me. I have a scan at the end of May once I’m done my 6th cycle. I had diffuse Mets throughout my liver and my halfway scan said that most were no longer able to be seen anymore and that the largest that was 4cm, was now no bigger than 2. So if the treatment has been effective and following the same trajectory the whole time , then I would hope and expect it to be mostly gone *fingers crossed* Definitely hoping that Polly has the same result . It’s a quick infusion too. About 40 mins from start to finish.
Sadie , I’m on the opposite coast , in Newfoundland. We are a little behind on the times here and def don’t Have the same access to things that other parts of Canada do which is frustrating. For example, I asked about Parp inhibitors because I’m BRCA2 and she was like “they’d be great to try but we don’t have access”I think our MO’s are likely thinking on the same lines to be honest. the first time around I was being treated with curative intent after having a complete response to chemo and only one 5 mm met so ending chemo then was more clear.
I have a friend on these boards who has a similar story to me but when she finished iv chemo, she was put on ibrance even though she was NED. I asked my MO why that approach wasn’t being taken and she said she wouldn’t know what she was treating being that I was ned, and that if I had bad side effects and couldn’t tolerate it after a while , then we would be eliminating a treatment forever. She also said I’d likely not feel well and so I imagine QOL is a factor as well.
Granted I have no idea how long the break is supposed to be , but My understanding is that endocrine therapy is next. I only hope it’s effective this time. I don’t know if AIs are even an option anymore since Letrozole failed very quickly. I think my only real option is tamoxifen .All that being said, I do like that I’m not on chemo indefinitely, but there’s definitely a vulnerability because ya know, we are all trying to survive as long as we can. My recurrence was aggressive so I worry that if I recur again, it’s going to be worse.
I guess it’s one day at a time right ?0 -
BAP
I'm so glad to hear you have had response to abraxane hopefully your next scan is even better!
Faslodex is a SERD. It could be a good choice especially Combined with a cdk 4/6 like Verzenio. That combo has very good statistic results for PFS and OSR. For many it is a first line therapy now (edited to add “for metastatic disease. I'm not sure why your friends MO would not use the ibrance combo at NED.
I did not see Afinitor on your list. That could be an option with aromasin or Faslodex.
My trial doctor is of the opinion to try all the targeted therapies before moving through the chemos when the tumor burden is not high. Maybe your MO wants you to have a break from chemo since you are limited to just the liver to see if you can get stability on a targeted therapy.
Dee
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Hi Dee, BAP and Moth, you all bring in an interesting conversation about how each MO handles the treatments. My current MO believes in QOL but also recognizes that sometimes aggressive treatment is necessary to stop the progression in the liver. As long as the treatment is tolerable, she will continue it till there is a progression. I get scans every 3-4 months or earlier if necessary.
I started on Trodelvy last week and hope to see some positive results, without my QOL going downhill ! Hoping to get a long run on this.
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Sorry to hear about your friend. I am newly diagnosed with mbc to liver and it's just a little uncomfortable. Had port put in yesterday but not started treatment yet. Where is her pain? I'm anxious about the discussions of pain and wondering what's ahead. Where and when to expect pain?Thanks.
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Alamaba Dee
Actually it was my MO that didn’t go to the ibrance combo after my first boot with BC . I think the big player there was that they were going for curative intent then because I was oligometastatic with one 5 mm met to the liver which resolved on FEC within four rounds (but I did 6) . I brought it up to her and she didn’t want to eliminate it as an option (the combo) .
This time around I do understand why I was put on IV chemo first. It was an aggressive recurrence. I went from ned in august to my liver full of tumours in early December. So I know the role Abraxane has played and why. I know endocrine is next. I do know they just said “then a break “ so perhaps they just want me to rebound a little bit before doing targeted therapy. She just said “definitely endocrine therapy” I just don’t want to get to the point of something super aggressive again and go on another of chemo. Where I live , I've only heard of ibrance being used and she said that oral chemo could likely be used at some point.
mom just so in the dark and that’s all the info she’s ever given. I see her next week for chemo follow up so perhaps I shall ask for my clarification again to get the whole plan. Just basing on how it was last time it was basically endocrine therapy and surveillance .0 -
What was so brutal about docotaxel (sp)? I will be praying for all on here.
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hi all,
what would you recommend for my mom (49 y/o, originally had TCHP chemo before 2 years NED, then failed kadcyla and enhertu back to back): she's been given a choice of paclitaxel (taxol) or doxil. she responded well originally to docetaxel with very mild side effects but her liver met has only kept growing and is stubborn.
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I don’t remember if I checked after my second infusion of Navelbine. I was really shocked when the scales showed I had lost eight pounds in one week after my first TX.
Nothing has been tasting right, completely off. They just told me to eat whatever tastes good, like ice cream. I know I’ve eaten more this week so the scales should show it. It’s been hard though.
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Grannax wow that is a lot of weight for a week....I know it's actually hard to gain weight I have that issue.
Macbook sorry I have no answer for you...I did do doxil it was easy but didn't work for me....
Still haven't heard from BEV...but hoping she is just getting lots of rest.
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macbookair - can you post your mom's full details pls? ER PR HER 2 ? Where are her mets? Have you done genomic testing? I think we need more info to offer good suggestions.
granna - wow, that's a lot of weight loss. Hope you can manage to eat more!
i'm struggling recently with maintaining weight as nothing tastes good. I log my food on My Fitness Pal to keep track of calories but I'm not quite sure what number I should be aiming for -- I picked one randomly & I think it's not quite enough so that means even more food. Blergh. I figure it's my job now to eat and to try to do exercise to maintain muscle and some fat reserves. It is something under my control unlike most of the rest of this stupid cancer train
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Dear Macbookair, as Moth said, could you please post more details? Is there only ONE met? How big is it? Was it biopsied? Were cryo-ablation and cyber knife completely excluded?
Dear Grannax, Moth, our MO says you should eat whatever you can and whatever tastes well in these situations. Hope you'll get adjusted to the drug soon. Can they lower the doses a bit?
Yes, Bev, we are worried about you and sending you all our prayers...
Saulius
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ok all I heard from Bev. She is feeling pretty bad..she is still in hospital ..may go to short term rehab later. So let's just keep her in our prayers for quick recovery. I will cross post.
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oops, i didn't realize everything was private but i just changed dx and treatments and status to public. dx with liver met a few months ago at 5cm but grew to 9cm !!!! it's just one spot, but a few lymph node involvements as well (stable on kadcyla/enhertu but the liver one just kept growing like crazy) they did radiation for 2 weeks but it was too big for y90 or ablation, maybe in the future??? just finished that and looking at next steps.. i think the doc is scared so he wants to do move towards chemo which makes me nervous as well
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grannex- hang in there. I hope you find something you can tolerate. I am at my infusion spt snd tge nurse just said she didn’t recognize me I’d list so much weight. I weigh less than I have in over 11 years. I’m down 60 lbs since October. Some of that was steroid weight gain but not sll. It’s a struggle to eat these days. I get hungry, try to eat, take one bite and regret it. I truly hope you find something that you can tolerate.
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Nicole, thx for the info on Bev. I’m sorry to hear she’s feeling so bad. I think of her a lot too
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OhioNana: I think you will be glad to have a port, however weird and lumpy you may believe it looks. It saves your veins. I had paclitaxel. I knew I would lose my a hair so I had my hairdresser give me a GI Jane buzz cut a few weeks before. I knew having my hair come out in chunks would be horrifying. I did okay with chemo. It was a lighter dose than early stagers so the SE's were not as bad. I did not get mouth sores or much in the way of nausea but everyone is different.
I am so sad and sorry and worried about all those posts. So many ladies having such a rough time. What a terrible, unpredictable, unfair disease.
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BevJen - I'm thinking of you & sending you healing vibes. Nicole, thank you for the update .Send her our love when you can.
LFF, oh man, eating. Sorry you've lost so much so quick. It's disheartening. I used to never go without eating - I'd get all cranky & irritable if I didn't have snacks every 2-3h. Carried almonds in my scrubs in clinical. Now I'm just meh, whatever. I have to tell myself I *need* to eat. I thought I was doing better the last few days but my scale disagrees so I'm increasing my calorie goal and setting timers to eat.
Maybe it's just anxiety triggering mine. Otoh, I have a reason to be anxiousl - i know enough that weight loss is a bad sign on this road. I read some articles & proceedings of a cachexia conference and bottom line was don't start losing weight/muscle mass. Nobody seems to know if it's a symptom or a prognostic factor but if it's not turned around, it's ...welll. not good. So everyone - watch your weight & keep it stable!!
macbookair, thanks for udating. Without endocrine therapy to fall back on (since she's ER & PR neg) and with progression on the HER2 targeted meds, I undersand your MO's thinking here about starting a chemo.
I think I'd tend to the doxil because you've already tried one taxane. The taxanes do have some differences in effect but I think I'd want to hit hard & fast with something in a different class. Then maybe you can cycle back to a taxane for maintenance.
Are her blood values starting to be affected or is everything stable for now? If blood panels are starting to be affected, I'd want to act quickly with the chemo.
Also, was the liver met biopsied to confirm hormone markers? If no, I'd push for a biopsy to ensure that HER2+ is still there. If yes, consider next generation sequencing/genomic testing on the tissue to see if any other mutations pop up.
HER2+ is not my area but it seems as HER2+ develops it starts acting in concert with other mutations so you may need simultaneous blocking of other pathways. Are you in the US? Clinical trials might be useful for you. But first I'd want to make sure she still is HER2+ because triple neg would open different treatments altogether.
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Thanks for the update on Bev Jen Nicole. Echo the others in sending her hugs and good thoughts for a speedy recovery.
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I let Bev know everyone is pulling for her to get better and praying for her as well
I have MRI tomorrow of Sacrum...been in bad pain since last Thursday....keep you all posted.
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LFF, can you tolerate an appetite stimulant pill along with antinausea meds?
You continue to inspire with all the treatments and SEs that you have endured. And you always cheer others on. Amazing person.
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Been too busy lately to spend much time on here. Always thinking of all of you. You are in my prayers.
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Hey Husband...its nice to see you...glad you are keeping busy!
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in your pocket tomorrow Nicole!!!! 🙏🙏
Tell BevJen I am in her pocket too as long as she needs! Sending love, hugs and many prayers!!!!
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thanks for your input moth
yes they did biopsy and it's HER2. it's frustrating that the HER2 meds aren't working... and yes she is very anemic now and getting a blood transfusion today. it's scary. i'll email the doc about next gen sequencing or maybe a clinical trial after chemo gets started. she's located near OHSU in oregon which is the research hospital there. i'll ask!!0
