How are people with liver mets doing?
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Nicole - I met with an interventional radiologist who performs Y90 and just went back through my notes. I specifically asked him how he expected a Y90 procedure to affect the liver function tests. He said that after Y90, he expects the ALK Ptase to rise into the 300s and stay there forever. When the bile ducts are exposed to radiation, ALK Ptase will rise and remain elevated. He implied that it was expected and not concerning. Best wishes for a painless PET/CT on Monday and favorable scan results!
Hope - Very best wishes for your Y90 mapping on Monday.
Grannax - I wonder if off-label Trodelvy would be an option for you. The antibody drug conjugates are able to deliver a higher chemo load directly to the tumor than standard IV chemo. The chemo payload for Trodelvy is the active metabolite of irinotecan and produced good results in heavily pretreated TNBC patients. I've been told that all types of breast cancer frequently express the TROP2 target. The Phase 3 TROPICS2 trial is evaluating Trodelvy in hormone positive breast cancer, but is not open to patients who have been treated with (I believe) more than 2 chemos.
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Pjlou thats great!!!
Theresa...wow really??? So even though my ALK P was normal only slightly elevated the past 3 months at 158 it is suppose to keep rising to the 300's ...well now that I think about it...I think it was going up jan...Feb...and now here we are April...hrmmm I am going to message my IR about this...
Thank you
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candy- thanks for asking. My scan was probably the best it could be. Only the one lymph node stood out, everything else looked good. I will remain on my current treatment. I meet with a RO on the 21st as I wanted to have a spring break with my kids.
The scan did find my ovarisn cyst had grown snd will need to be addressed later. I also have a nodule on what remains of my thyroid which the radiologist read as posdible primary neoplasm ,or thyroid cancer. Sldd as o will deal with after radiation plan is in place for my lymph node. I assume we will biopsy it snd go from there.,
my blood counts are low again ( hemoglobin is 7,5 snd HcT is 24. It’s not the lowest I’ve been but it’s low. I feel like crap snd have been bleeding a lot from what I assume is menopause. Do we decide to give me a transfusion. I go in tomorrow for st least 1 bag. This is good as it will hopefully give me energy for the spring break trip to Washington DZc.
So transfusion tomorrow, radiation consult April 21st., after that see an OB and deal with my thyroid. It keeps coming and I keep fighting.
Thank you all for your support zim pretty tired.
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LFF-
Scan may not have been perfect but it was good andhopefully all things that can be dealt with in their time as you say. I can imagine the sheer exhaustion of it all. I hope that a transfusion gives you that boost of energy to enjoy Spring Break with your children. I know that's so important. I hope they check that bleeding to be sure it's “ok" too. Saying a prayer for you. Wishing you some rest and some peace
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LFF- Woohoo for the good scan. But keep an eye out on that ovarian cyst. Another poster on another Thread had an ovarian cyst that got larger on the scans and she had it removed--- mets to ovary. Not saying that is your situation, but just keep an eye on it. And the bleeding--- watch that. Take care.
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Theresa. Thanks for thinking of me. That sounds really complicated. I’ve never heard of anything like that. I’ll ask my doc. But I don’t have Trop target. I only have ESR1 on genomic testing. Faslodex worked for awhile on my lung mets but didn’t touch my liver mets.
I also have diffuse mets in my liver. That seems to be the key word when evaluating what TX might work. Noone has ever mentioned what percentage of my liver is tumor. I’ve ordered a CD and my SIL says we can look at the scans. That will be a first for me. I’ve never wanted to see them, now I do. I’m gonna face those evil monsters.
LFF you remain my hero. Keep fighting, girl. 💞
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LFF awesome Stable Mable...!!!!!! So happy for you enjoy Sping Break
Grannax...sorry I cannot remember what does having Diffuse Mets mean? > Does it mean a lot of little ones all over the place? Also do you have bone mets? If so, did the Eribulin work on those just not on liver? I know you said you have been heavily pre treated...is your MO thinking about a Taxane chemo?
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Grannax - I don't believe that TROP2 is tested for in the normal tumor assays. TROP2 has not shown up in any of my tests. It is assumed that it is expressed in most breast cancer types. Trodelvy is approved in TNBC and the TROPICS2 trial is evaluating it in hormone positive breast cancer. I was told that it is expected to work equally as well in hormone positive breast cancer as in TNBC.
Nicole - I didn't ask the IR how long it would take for the ALK Ptase to rise. In general side effects from radiation can continue to develop for months after treatment, but I don't know if that applies to ALK Ptase specifically. I'd be interested to hear what your IR has to say...
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Candy, thanks for asking about me. I haven't seen the report yet, but MO called yesterday and said "overall" I'm stable. Overall? What does that mean? What's not stable? I meant to circle back and ask, but we didn't get there because..... the pain I had was my gallbladder and that's opened up another whole can of worms. Excruciating pain woke me up Thursday morning that 2 Tramadol didn't touch, went to emergency and now I'm in the hospital. I have stones and a terrible infection, so I'm on IV antibiotics. The pain resolved mostly by Thursday night and now it's really good except every time I cough, sneeze, burp or hiccup I wince. You never realize how many times a day you do those things until it hurts! They want to clear the infection instead of surgery because of my liver. Keeping me at least 2 more days because now my liver enzymes are way out of range. MRI of gallbladder tomorrow morning.
Grannax, glad you have a new plan. I too haven't actually looked at liver images, but need to.
Nicole, my ALK numbers today are in the 400s and I'm assuming - hoping - it's the infection, but I understand your concern. Best wishes on the PET/CT Monday.
LFF, enjoy spring break!
And so it goes....
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Bliss- Wow. Always something, isn't it. Post when you can.
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overall stable is pretty positive! 🙏🙏🙏 staying hopeful. So sorry about the gallbladder!! I haven’t seen a connection between gallbladder and verzenio, but I have certainly had pains there since I have been on it (spasms they say)and now stones, and never had them before. I hope the infection clears. And praying for a good discussion with your MO.
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Candy and H&G, thanks. Yep, always something.
While I'm stable overall, MO wants to take me off Verzenio and start Gemzar which makes me wonder what isn't stable or she thinks it's just not worked well enough so far? I'll have to send a message since we didn't get to circle back to those questions.
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Bliss. That sounds terrible. Why can’t they take GB out?
Theresa. WOW this Trop thing sounds amazing. I get the impression it just helps to make chemo work better on heavily treated patients? I am ER PR positive so I will ask my onc about the trial.
Nicole, diffuse means too many to count lesions in my liver. My IR said “100s “. Yes, I’ve taken taxanes.
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Grannax...can they not go back to a taxane, did it stop working for you?
Question ladies. I am going to take Valum for the PET tomorrow they are 2mg...is that strong or no? I only had valum one time, it was before a surgery and it made me loopy but I think it was like 10mg???
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I know we have mentioned on here before, but do you all have periodic pains to your right side? Not bad, just enough so you notice it. Maybe a "2" on the pain scale.
I have had on and off pains to under the right breast/ribcage since I was diagnosed in 2017. May not have them for a while, then they show back up. I have thought about constipation, gallbladder, liver. But IDK. I do have constipation, but had some issues with constipation before the cancer and the cancer med usage and never had pain here. And I will have this pain come up after I have had a good BM, not when I am full of poo. It doesn't seem gallbladder because it is not after I eat, but occurs various times thru the day. It is under the end of the ribcage, and kind of the top of stomach. And sometimes in the back at the same level---like taking your right hand and cupping your ribs on the right.
I just wonder if the liver tumors are growing. There was a small increase on the scans recently. But would that small cause pains? And it has hurt before and the scans show stable.
Just makes me wonder what is going on in there. Is the cancer growing? Every ache we worry about. And you don't know if you should worry or not.
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Candy, I experience periodic pains in the right rib area, closer to the side than the front. They remind me of when I was pregnant and the baby's foot would push against the ribs. I would say the pain level is very low, about a 1. They started soon after I began treatment in November 2020. When I mentioned it again to my oncologist last month, he wasn't concerned and simply commented that we're making the liver work processing the meds. My liver markers have all been in the normal range for the last 3 months. I also have a met on my 9th rib in that area but he doesn't think that has anything to do with the periodic pains.
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Hi Candy,
I have pain on the right side around the bottom of my rib cage. It started just before Christmas and was getting progressively worse with a bit of a low grade ache punctuated by some sharper stabs. Nothing super painful but it got my attention. Lo and behold, the liver mets showed up in the January scan. My MO was surprised that I have pain as the burden in my liver is very little. He thinks the issue (confirmed by my RO) is that one lesion is very close to the surface and is pressing on the capsule. The pain is much less now that the tumours have shrunk. But completely understand how it gets in your head. As soon as I have a jab my mind goes to “What if it’s stopped working?”
So it could be a function of location of the mets from that small increase rather than more progression.
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Bliss, sorry to read about your gall bladder issue. Hope this resolves soon.
Nicole, I don't understand how the insurance companies decide which medicines to cover. If your GI doctor sends a letter of medical necessity, I am sure they'll approve. It is frustrating that you have to wait till all this paper work is done. Hope you have enough samples of Dexilant to take till all this is straightened out. Good luck with your PET scan tomorrow.
Grannax, I hope your next treatment works and those 'diffuse mets' disappear. I am in a similar situation as you are - I have numerous mets in the liver and cannot get Y-90 due to risk of liver failure. My bone mets are diffuse too and my back pain is increasing every day.
I took anti-androgen capsules (Xtandi) for12 days but I started having whole body itch (head to toe). My MO asked me to stop taking these capsules and 2 days later, the itching had subsided. So right now I am on a break from any treatment and in the meanwhile worried that the liver mets are growing in size and increasing in number.
I don't know what would be my next option. Eribulin may not be an option since I already have peripheral neuropathy from Taxol and Anthracyclines. Does any one know if there is any other chemo that doesn't cause neuropathy? I am planning to ask my MO about TRODELVY.
I seem to be coming to a dead end where treatments are concerned. Any suggestions/input would be welcome.
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S3K5 - There is less neuropathy with the antibody drug conjugates (Enhertu, Trodelvy). I believe it's because the chemotherapy is more targeted to the tumors. Enhertu is only approved for HER2+ and Trodelvy is only approved for triple negative breast cancer. I hope that both treatments will be approved for hormone positive cancer soon, but FDA approval unfortunately can take a long time. Until then, appealing to insurance for off-label use is an option. I've heard that other patients have been approved for off-label Trodelvy. I don't know about Enhertu.
Candy - When I cough, I do have some low grade pain under my right rib. It's like a side ache when you run. It does make me nervous that my liver lesions are growing. Ugh!
Bliss - I'm so sorry that you are in the hospital! I hope that the antibiotics will resolve the infection soon and that your liver function values will return to normal. The fact that your pain has lessened seems like a very good sign. It's strange that your MO says that your scans are "mostly stable", but he/she wants to change you from Verzenio to Gemzar. I hope that you will get more information soon. Over time, I've come to think that "mostly stable" is something to celebrate. I hope that is the case for you!!
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Bliss- get well! I care that you are going through this and hope you get answers soon from MO.
Candy- I have the right side rib cage very mild twinges we just monitor
Grannax and S3K3- would you consider a SERD trial? Mine has worked the first 8 weeks to overcome the ESR1. No neuropathy with this. I find out on the 19th if it is still working.
There is also an antibody drug congugate trial for breast cancer with only a one week wash out if I recall. it excludes neuropathy >1.Nicole- in your pocket fit the scan
LFF- hope that infusion gives you great energy for a great spring break. And that you come home refreshed and ready for next steps
Pjlou- sounds like you are doing well on your regimen
Dee
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Thanks Dee
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Alabama Dee,
I would you consider a SERD trial. I haven't been on any trial lately. It is good to know it has worked for you for the first 8 weeks to overcome the ESR1. No neuropathy with this. Where is this trial held and who would I contact for more information? Dee, do you know if they are still recruiting?
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Just got my CT results after 3 rounds of Ibrance/Letrozole/Zoladex. Nothing has spread and there has been shrinkage in both my breast tumor and my liver Mets. Wanted to share with all of you wonderful ladies. Thanks for always being there. Hope you are having a great Sunday
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S3K5, If the cancer is still triple negative, it won't respond to a SERD. But, it appears you have not tried immunotherapy yet?, and as a converter (prior ER-positive) you could do very well. Also, chemo-immuno trials that include a third drug, the immuno-booster Egenelisib (IPI-549), have had success getting ER-negative cancers to respond better to immunotherapy, even in those with low or no PDL-1 expression, responses were improved more than double, like 4x?
Here is one trial they have, but this one is for first-line TNBC only, no prior treatments allowed. The company has said they are going to open up more trials for multiple solid tumors cancers with this drug. of course there are lots of other immunotherapy trials but this combination is worth asking about
https://clinicaltrials.gov/ct2/show/NCT03961698
Also, if you wanted to try immunotherapy without the chemo or eganelisib, here is one (of many):
https://clinicaltrials.gov/ct2/show/NCT04432857
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Bliss (so sorry you are in the hospital), Grannax, Nicole, please get well! As for us.. liver MRI, whole body CT & brain CT - all clear! They don't even see these lymph nodes, they are too small and probably too inactive. Today we met our MO, she kind of agrees we have to keep on going with Herceptin/Perjeta (well, I have no doubt about this), and agrees to local treatment. So Sandra should have a meeting with our surgeon and ultrasound specialist, after her HP infusion today, to map these lymph nodes, and then the multidisciplinary board should direct her to surgery. I'll keep you all posted. Plans finally start to come into life but lot's of lot's of running these days:/ Saulius
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Arc 1970 - really great news that Ibrance is working! I hope it continues working for you for a very long time!!!
Saulius - great news on scan results. Hopefully they can take care of this locally and be done with it!!
Nicole - with you today!
I am off for mapping for Y90. They say it’s a full day. A little anxious.....
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thanks Hope and Saulius.
Saulius CONGRATS.....HER2+ really are so fortunate to have herceptin.... Really happy for you both!
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Thanks so much Nicole. Yes, Herceptin... but we also have these fast progressing Her2+ therapy resistant mutants/clones:/ And these lymphnodes are so small and deep, tangled between main veins (left side). Surgeon said he'd do it together with angio-surgeon (man, I don't know how to call him in English), and will try to "get them all" but he's not 100 % sure. Anyway, we wait for tomorrows multidisciplinary board meeting to approve the surgery, and if it is approved, then for covid-test and if it is negative (it will be!), then surgery on Thursday. Phew... that all is tense... Saulius
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Dee. I would do a Serd trial if there was one locally that I qualify for. I’m not willing to travel for a trial. The off label Trodelvy sounds interesting. I plan to ask my MO about that. Can it be taken along with chemo? Or is it taken alone?
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Nicole, thinking of you today. Great news Saulius and yes, HER2+ is a double edged sword!. I wish you great success with the surgery.
Sorry if I am missing anyone going for scans treatments. Still trying to keep up!
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