How are people with liver mets doing?
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Weniwi. I am so sorry to hear of your progression! I am glad that you are getting your second opinion next week. There seem to be several people currently having a CCND1 mutation (including me). I had a good response to Xeloda- so hopefully that is on the table for you.
Are you Her 2 low by any chance?
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nkb and rk2020,
Thanks for the encouragement re Xeloda. It would be my very first chemo. I'm also interested in Elacestrant.
Yes, I'm also Her2 low....and AR High....plus other findings. My MO has yet to talk with me about any of the details of my STRATA results from Aug. She has mentioned Xeloda and I see her tomorrow. But she will be leaving for the San Antonio Breast Cancer Conference so will not be around next week. Not sure if this will complicate or delay things.
The possible hand-foot side effects are worrisome. Many of the possible skin and nail changes that women describe on this site sound debilitating. I'm a daily outside walker, even during the winter. This is so important to me - both physically and mentally. I also wear knee high compression stockings for venous support and have for years.
Thanks again for the support and encouragement.
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Hi weninwi, I’m also sorry to hear about the progression. It’s so hard when we hope that treatments will give us more time.
I agree with the others, Xeloda is a good drug and was very effective on my liver mets. I had significant reduction in the lesions and found the drug very tolerable. HFS was not a huge problem for me as long as I took precautions. I was religious about greasing with the Udderly Cream, morning and night and took care to make sure I wore good shoes with heavy socks. Nothing stylish I’m afraid! Like you, I’m a big walker, usually taking my dog for long walks twice a day. There were only a couple of times that I had blisters on my heels - mostly self-inflicted wounds from doing something stupid (like having a hot bath… bad idea…). I anticipate you would tolerate the drug well with some tweaks to your daily routine.
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Weninwi- I agree with Sadiesservant- I experienced some pain at about 3 months and burning (hobbled to the bath room) my MO lowered my dose to 2000 (from 2500) and it went away. I also couldn't sustain my ANC so changed to 7/7 scheduled and really only had peeling soles of feet and some toe nail issues- no hand problems at all. I took 4-6 mile walks almost daily wearing HOKA 1 shoes (the very padded style) and that really helped.
Hi Sadiesservant- so nice to see you! Hope you have a good treatment- I am on enhertu- PET in a few weeks.
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nkb,
When you write that you were on a 7/7 schedule for Xeloda, do you mean a continuous 7 days on - 7 days off?
Wendy
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My wife did approx a year of xeloda and it worked very effectively for her. The only reason she quit it, was to get into a program that offered palbociclib, and which program was coming to a close for entry. Over time, she lowered her dose of xeloda to lessen side effects. She also fooled around with her dosing schedule to give her more time off. I believe near the end she was doing 1250 2x daily, and 7 on 7 days off.
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weninwi, My experience with Xeloda was excessive peeling fingers & toes after 1 cycle.. My 1st MO prescribed it only a month after 1 tx of taxotere which left me with drop foot & lots of nerve damage. Switched to another MO immediately. She had me wait a couple extra weeks to build up my strength before starting the Kisqali that you see in my sig line. I don't even consider those 1st 2 attempts as tx. When I later was put back on Madam X, new MO lowered dosage and said she didn't expect much problem as I was very sick with other issues when I started X 1st time. Worked for me for about 6 months. Bag Balm (if you can stand the smell) or aquaphor worked wonders and I did not have debilitating problems 2nd time around. As you might notice (or participate) many of us tend to complain in these forums more than extoling the benefits of tx. Be aware, but don't expect disaster just because those of us with them are more vocal. Good Luck & let us know.
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nopink (love the name),
You make such an important point here. I didn't take Tamoxifen when I was early stage because of all the stories about "Tamoxicrazy" on the web. When I later became metastatic, the first thing she put me on was Tamoxifen. No side effects. Shrunk my tumors.
What I try to tell people is that, for most treatments, if there are bad side effects, you can just stop the treatment and bounce back quickly. Just give it a shot.
So glad you switched MOs. There are lots of ill-informed general oncologists out there. One of my support group friends talked to her doctor about getting on Enhertu since she is HER2 2+. He insisted she couldn't do that since she is HER2 negative. Despite all of the hoopla about HER2 low, he didn't know anything about it. Even worse, he insisted she was wrong and explained to her the difference between HER2 positive and negative.
weninwi,
I used Heel Balm. You can buy it at most drug stores. What tends to work best is a cream with a high level of uric acid. I tried everything and even compounded my own cream but, in the end, Heel Balm was effective and easily available. Hoping your appointment went well.
Hugs, Susan
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Hi nkb! It’s been so quiet on this thread. Nice to see some conversation (although I’m also worrying about BAP). I’m partway through my third cycle of Gemzar. Overall it’s been pretty kind to me although it’s doing a number on my RBCs. Not sure what my MO is going to think. I’m definitely feeling the lack of Hb now - SOB and fatigued but really want to give it the college try as this is the last chemo my MO will recommend if it doesn’t do the trick. I was feeling optimistic, bone issues seem better but right flank pain has recently reared its head which is usually indicative of the liver mets growing. I scan on the 15th and then we will see.
Great points nopink and Susan. I think the tendency is to always imagine the worst, particularly when you read the drug profile! But, in my case, I have tolerated most treatments very well including a number of chemos. My biggest issues are typically mouth sores (my Achilles heel in terms of side effects) and issues with toxicity to my marrow. Ibrance wiped out my RBCs and after that treatment they never returned to my previous levels. Xeloda also did a number on my marrow with my RBC measures increasingly out of whack. Had it not failed I think my MO would have hit pause again - he wasn’t comfortable having me on it at a low dose given the haematological impacts. Now here we are again… 😉
Sending hugs to all and sincere hopes for effective and easy treatments!
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Oh sadiesservant, I wish your RBCs would cooperate for once. Sending positive vibes your way and hoping for the best. Hugs.
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Weninwi- Yes, I changed to 7 days on and 7 days off. It seems to be a common schedule on the east coast- but, not here on the west coast. My MO was very against it- I was having to take it 2 weeks on and 2 weeks off to get my ANC to 1.0. it made me nervous to take so much time off- I convinced her to let me try 7/7 and did very well on that schedule for a long time. They have data for colon cancer on that schedule, and scant data for breast- but, I have read that most of the side effects happen after day 8. My UCSF second opinion doctor thought 7/7 was much preferable to 14/14 which I needed for ANC.
Sadiesservant- I hope that the Gemzar is a good bridge until other options are available. I was told that the my marrow has cancer and is permanently damaged apparently from my original AC-T. I mostly have low WBC and thebefore low ANC. On Xeloda my HBG was the best it had been in years- so go figure. On enhertu my HBG is bouncing back- I take that as a sign that it is clearing cancer out of my marrow - PET in 10 days.
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nkb - My fingers are crossed for a good scan!! 🤞🏻🤞🏻🤞🏻
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Thank you rk2020!
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We’re scanning within a couple of days of each other nkb. Wishing you the best possible results on your scan!
I suspect I also have marrow involvement as I have extensive bone Mets. I’m heading to the lab for my bloodwork in a minute. It’ll be interesting to see where things are at. Developing a bit of a cough so worrying about pneumonitis. Sigh….
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Xeloda did nothing for me....when I was ER+ HER2-...... I would actually like to reconsider it now being TNBC combined with an old chemo called Lexempra > spelling...?? Someone in my FB groups did it and it worked.....my oncologist said we can try if/when the gem/carbo is not working..which I just started it last week...but admit I am not hopeful.
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Nicole - is it Ixempra? 50s was on it for almost a year I think...
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Thanks Sondra.... yea I think I want to try that next before I try abraxane.
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Well darn. Things are not looking good for Gemcitabine. I’ve been tolerating treatments very well with few side effects and, while I am not sure it’s doing the trick on the liver, I feel my bone mets may have improved. However, unfortunately, it looks like I have developed interstitial pneumonitis. I have developed a dry, nonproductive cough which seems to be getting worse and increased shortness of breath over the last week or so. No signs of any bug - no sore throat, no congestion. I did have a low fever a couple of days after my last infusion which had them concerned about possible pneumonia so they canceled the second infusion of cycle three as a precaution. The cough continues…
I reached out to my MO who requested that my December 15th CT be moved up so that they can check my lungs. He also canceled the third infusion of Gemzar. He flagged the potential for lung toxicity but I had already considered it. While rare, my experience fits the pattern - issues often appear after the second cycle, dry cough worse during the day/better at night. (This is significant to me as I was wondering if there was a chance that my pleural effusion was coming back but then remembered that one of the hallmarks was coughing as soon as I tried to lie down. This doesn’t fit the pattern.)
Nothing to do but wait to see the results of the scan but I am worried. And the cough is exhausting! This is probably my last shot at chemo so it will be disappointing if it’s off the table. Bummer….
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Unfortunately, I'm joining this group due to a “routine" PET scan almost 2 months ago showing hepatic lesions. It took weeks to get an initial MRI then an additional fortnight for imaging with Eovist contrast. A biopsy just before Thanksgiving was successful but we're still waiting for FoundationOne…
The CA 15-3 tumor marker had been inching up all year: around 50 since 2018, 60 for a while last spring, then 70 in the summer and finally 80. My new, young oncologist doesn't want to follow them anymore. She is also strictly adherent to protocol insisting on exemestane instead of fulvestrant with everolimus.
Sadiesservant, if your status is HER2 low vs negative, Enhertu might be possible. Perhaps your tissue samples from 2021 can be retested. When data was presented at ASCO back in June, the primary investigator was given a standing ovation for this significant breakthrough. FDA approval came quickly.
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I’m sorry to hear about your progression vlnrph. It’s really tough to face, I know. Have you been on Xeloda? It was very tolerable and did wonders for my liver mets while it was still working. My MO likes to alternate between estrogen based therapy and chemo. I think his view is that it prolongs the time to hormone resistance.
Unfortunately no joy for me on the HER2 front. My biopsy showed I was resoundingly zero on that score. We’ll see if he wants to try Exemestane or if his preference is a break from treatment for awhile. But, don’t want to get ahead of myself. Scan first!
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No Sadie!! I hope it is not interstitial pneumonitis! This is crummy, there are lots of viruses running around here like RSV and Flu also. I know that steroids calm it down when caught early, but, still a bummer.
Thinking of you and hoping that it is somehow an easy thing to solve.
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sadieservant,
So sorry about the coughing. So many people suffer from coughing and yet nothing has been developed that really helps. I am coughing a lot but my coughs are productive so feel like I shouldn't try to stop it. I do take Guaiatussin (cough syrup w/ Codeine) which helps at night. My eyes are bloodshot.
The last five chemos (Gemzar/Capecitabine, Eribulin, Enhertu, and Epirubicin) I've had didn't work so it seems like I've developed some kind of general resistance to chemos. My ER positivity plunged from 90% down to 5% and my HER2 from 2+ to 1+. On my way to TNBC.
Hope your scans look good!
Hugs, Susan
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Hi Susan,
sorry to hear about your resistance to so many drugs lately- are you still doing a trial now or soon?
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Susan I am wondering if I am chemo resistant.... I just started Gem/Carbo... I have never done a taxane yet so abraxane is still looming out there..but I am fairly certain I am chemo resistant..I mean now being TNBC...yea... It does sound like you may be heading toward TNBC too... especially that you didn't respond to Enhertu and you definetly seemed like one that should.
How many chemos do we go through before they say .."yea..you are chemo resistant" anyone know?
Sadie..I didn't realize you are also on Gem/Carbo.. I don't think its working for me...I only have 1st cycle... but still I don't think it is.
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susaninsf, I'm sorry that you've become chemo resistant!
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Thanks all. I’m positive this isn’t a bug as I have no other symptoms beyond the coughing, shortness of breath and discomfort in my lung (particularly the right lung which is not in great shape thanks to the pleural effusion. This cough is interesting in that it doesn’t plague me at night but instead seems to get worse throughout the day. I recall when I had the PE that as soon as I tried to lie down I would end up coughing like crazy. The worst is when I cough so much that I actually create mucous and then get the heaves. Argh…
Susan, I’m sorry about the resistance. I understand how challenging it is as options disappear. As we’ve discussed previously, I don’t appear to respond to the majority of chemos due to my indolent disease. This is the last one my MO will recommend if I don’t respond after fails for so many. I’ve only ever responded to Xeloda beyond hormone treatments which I am now resistant to. And unfortunately I am not TNBC either so those doors remain closed to me. I suspect, if the lung issue is confirmed and/or we see progression (I’ve tried to remain hopeful and believe Gem was working on my bones but the right flank pain makes me think the liver is not cooperating) he will suggest I stop treatment. It’s a daunting proposition but I get it. If it’s not doing any good….
Nicole, please try to remain hopeful as well. It’s much too early after just one cycle to know if it’s working. Sending my sincere wishes for a good response!
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Enhertu was unlikely to work for me since I had already been on Trodelvy (which worked great!). They both deliver a similar Top I inhibitor. Patritumab Deruxtecan and Datopotamab Deruxtecan also deliver Top I inhibitors. All four have different antibody targets but it doesn't matter if I am already resistant to the toxic payload. The trial drug, ARX-788, that worked for me was a dual toxic payload so I had a great but short response to that. Unfortunately, they stopped the trial for commercial reasons. I was hopeful it could help many others.
So what seemed like a whole new world of ADCs with limitless combinations turns out to be mainly one chemo. The only one I can see out there that's different is Zilovertamab Vedotin. Targets ROR1 and delivers an MMAE.
I started on the PY-159 trial almost two weeks ago. It's immunotherapy. It's taken with Keytruda which I already know doesn't work for me but my last lung biopsy showed I'm PD-L1 positive there. I believe there is a lot of heterogeneity in my tumors now that they are everywhere (brain, eye, lung, liver, bone, heart, breast, and more). The liver and heart are relatively new. Everything else was there from my original mets diagnosis. The SEs of the trial drug for me are joint pain, fatigue, coughing, red spots on my skin. These are all tolerable with some Tylenol, Ibuprofen, cough syrup with Codeine, and rest.
Thanks to everyone for your kind words! SS and Nicole, Hoping for the best for you both!
Hugs, Susan
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saddiesservant,
Has your MO considered Elascestrant? A new SERD that may get final FDA approval in Feb. Based on my limited understanding, it is effective for women who have stopped responding to other estrogen therapies. It is especially effective for women with ESR1 mutation.
Dr Adytia Bardia has both spoken and written favorably about how this drug performed in the Emerald phase 3 study.
https://www.onclive.com/view/dr-bardia-on-elacestrant-in-er-her2-metastatic-breast-cancer
And the pharmaceutical company Menarini Group and Stemline Therapeutics currently offers an Expanded Access Program for this drug.
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Thanks weninwi, but sadly, I am in Canada so it is, as yet, unavailable. It seems clinical trials are much more difficult to access here. I am keeping an eye on developments for targeted therapies. I was watching for ARX-788 so was quite disappointed when the company abandoned it. Hopefully something will turn up soon!
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Just an update .... I feel like most who knew me from long ago are gone so those still here may not know what I am talking about...but its official after only 2 infusions I KNOW GEM/CARB is NOT working... my BITES AREBACK. and I have not had them in almost 2 years.... Im crushed... I will see MO on Thursday I believe I am not at the end since I look chemo resistant.
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