How are people with liver mets doing?
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Nicole,
I think your scan results sound great! Basically, it sounds like you are overall stable.
I'm on eribulin too and have also noticed some new pain in the area of my liver. No pain anywhere else. How are your liver enzyme numbers? Since mine are still normal and I've been feeling good, my MO thinks eribulin is working. Just finished one cycle. Start the second next Tuesday. Will probably have scans after that. I've enjoyed being on eribulin because I haven't had any SEs and my energy level has been good.
You have three good options. I don't remember what your reasons were for taking a reduced dosage of eribulin but I think it's amazing that you are having such a good response on a lower dosage.
Hugs, Susan
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Nicole,
I don't know what your MO will add when you meet with her, but I would agree with Candy. It sounds like stable to me. Is it possible that you have some liver pain that's residual from your last Y90? Sometimes healing takes a long while, as you already know. If it were me, I'd continue with the eribulin and rescan in another 3 months or whatever your schedule is to see what's going on at that point in time. In the meantime, I'd continue to research next options so that you are ready for when you are not stable.
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Nicole, I agree with Candy, the scan looks good, my reports always find all kinds of things that may be happening or areas that seem to be heating up-Of course you still have to figure out the cause ( or how to deal with) of the pain, but it appears not to be due to new mets. I would try increasing the dose to see if you can get a better scan, and monitor if the pain improves with that- it'd be great to add in immunotherapy or leronlimab, but of course they won't do that to a treatment that is working...
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Hi Nicole,
I vote for sticking with the Eribulin, probably with the same dose. As I think I mentioned in a recent PM, I’m in a similar boat as I am continuing to have liver pain and discomfort despite two cycles of Vinorelbine. I’m also having more bone pain. They have not scheduled my next CT yet but it’s usually after three or four cycles. Really hard to get it out of my head that things are getting out of hand with an ineffective treatment but I won’t abandon this unless I’m certain that it’s failing as my options are becoming limited. I also had many years where it was difficult to track the disease as bone scans don’t work well for me and I have only sclerotic mets. At least with the liver I have something measurable!
I’m sorry that so many of you are struggling. Shetland Pony, you are echoing much of what I am feeling at the moment as well. While overall I am still managing and haven’t had to face surgery, I am really feeling the decrease in capacity I’ve had in the last few months. I’m finding walking my dog more difficult, get easily winded and feel completely done in by the time I get home. I routinely fall asleep in front of the TV after dinner. It’s ridiculous for someone not yet 60! Just feeling a bit sorry for myself I guess… this will pass.
Sending hugs to everyone
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Candy, in my case the liver pain comes from a met that is close to the capsule of the liver. The liver itself is not the issue as it doesn’t have pain receptors but the membrane around it does. So pain due to mets is definitely a possibility
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Sadie- I have heard, from here, that the liver doesn't have pain receptors and the pain is probably from the capsule. I do have mets close to the surface of the liver. And mine are in segments 3 and 4A, so on the left side and close to what I would think of as the stomach area. My puncture sites for my latest biopsy are midline and just to the right of midline of my abdomen.
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I really appreciate everyone's vulnerability here. If I could hand out medals….
I start my new trial on Nov 29, on AC682 a new serd. I will be the very first person. Since I am doing pretty well, I decided to be a trailblazer and trust my trial doc. I have several treatments in my pocket to try if it does not work. But they are mostly chemo and that would make me ineligible for most trials.
It tears at my heart to hear "I don't have much else to try"😢 I am counting my blessings and hoping like everyone here for many, many more years.
Dee
FYI - Nicole I would stay on current treatment and scan in 2 months. Don’t wait for 3 months.0 -
Dee I like your idea of 2months...I will mention that.
Candy and everyone..thank you so much for your thoughts !!!!!! Ok so you all go by your tumor markers....they don't and never have worked for me..but 2 things have...1 my itchy bites on elbows..(which for some reason I do not have right now) and 2. my Bilirubin... My bilirubin has been on the rise... from 0.7 to 1.2 that is usually ALWAYS indicitive for me of progression in liver. What concerns me is this..if that tumor didn't all die from the Y90 and is alive then that means the Eribulin isn't shrinking it or killing it... IF its a new tumor in the same spot it must be growing bc I feel the pain the same pain I felt in the same spot before she did the Y90 in June.... We reduced dose (for those that asked) bc I was having fevers for like 5 days...BUT I am willing to go up in dose from 50% to 75% bc she said I can have more time off inbetween...so she would probably do 2 week on 2 off instead of 2 weeks on 1 off.My husband is saying stick with it..so I will probably do that and try the 75%.
OHHHH I do still have MRI of liver scheduled for the 29th.... so we will have a good look.. BTW the PET was in a BRAND NEW machine they just got so on the report they said things might look bigger (my wording)
***STUPID ME>>> I read her (MY MO) message wrong about the eribulin I thought it said spacing out the visits if we increase dose..it doesn't say that so i don't know what she means by spacing out the visits...if continuing on the lower dose???" I will have to ask her about that....
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Nicole,
So much to think of and make decisions! I agree with Dee - 6 to 8 weeks for the scan seems to be reasonable. I'd be nervous about 3 months. Staying with Eribulin makes sense since you don't want to 'run out of options'. If a particular drug is working, then tweaking the dose and frequency of treatments seems like a good plan to regain your quality of life. Anyway, please keep us posted.
I got my MRI report for the spine and there is a substantial increase in the size of the lesions due to infiltration . The RO is going to schedule me for radiation treatments within the next two weeks since my low back pain is getting worse. My MO has sent me a message that she will order scans within 6-8 weeks to ensure the current systemic treatment is working. My next treatment would be Eribulin. I am hoping it will work to shrink or stabilize liver and bone mets.
Regarding the pain due to liver mets, I agree that it is REAL. I get this too.
Here is the opinion of one of the experts:
https://www.everydayhealth.com/liver-cancer/contro...
"The sensory nerves are in the outer covering of the liver, which is like the skin around an apple. When the skin is stretched, or when the tumors eat through it, that's what causes your pain," explains Otis Brawley, MD, chief medical officer for the American Cancer Society.
- Referred pain. The enlarged liver could be pressing on nerves under the diaphragm. Some of these nerves connect to nerves in the right shoulder, which may result in pain in that area.
- Treatment. You may experience discomfort from the therapies your doctors are using to treat your liver cancer. This may include postoperative pain if you have been treated with surgery, and nausea and gastrointestinal discomfort from medications.
My prayers for all those who are struggling with various issues due to this horrible disease.0 -
S3...sorry about the scan where in the spine will you be treated?? Yup I definitely feel pain in the liver right where she treated wtih the Y90 and that was done in June...is just a coincidence that they say they see uptake there and possibly a NEW lesion or the original lesion was not fully killed...I think not...
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Nicole- I’d go with your gut feeling no pun intended.
If it were me, I’d do either 1 or 2 but probably 1 for a few more cycles. If my pain continued while staying with 1- is move to. #2.
Your PET results sound stable. I’d be happy with those results even if they aren’t 100% clear.
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having seen the photo with what we deal with living with metastatic cancer. I wanted to ask you- what are you doing for dry mouth and very dry eyes?
I have had multiple eye appointments to try and deal with my dry eyes. Nothing has helped. Do I am scheduled for a much more rigorous work up to see how to best deal with them. Obviously, I am not gooo g to change my cancer treatment.
Have any of you found a solution that works for you? mas far as dry mouth, I just find myself drinking more. Water.
Thanks in advanc
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lFF: Water is super important. I also use Systane drops. Each application is individually packaged and very soothing. Doesn't contain preservatives. Won't break the bank either. I suck on Spry tabs from time to time during the day. Minty like Tic Tacs and contain Zylitol. Not long lasting relief, but not much is. Worth trying if you haven't already.
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LFF, it sounds like you are seeing an ophthalmologist? That's good, so you can get to the reason(s) for your eye trouble. My ophthalmologist determined I had a combination of dryness and inflammation. No doubt cancer meds and lack of collagen (from anti-estrogens) to keep my lower lids tight play a role. Ultimately, Restatsis drops have been the best help for me. Here is a rundown of the ophthalmologist's suggestions:
--Fish oil capsules. I found a brand called Nordic Naturals that tests low for heavy metals (can be problem with fish in general). Obviously ok this supplement with your onc.
--Lubricating eye drops, as often as needed. Systane Ultra, Refresh Optive. Get the single-use vials that are preservative-free if you are going to use these long-term. The last thing we need is irritation from the preservative. Can use ointment overnight.
--Punctal plugs. He put a small plug in the inner tear duct to keep the tears in my eyes longer so they could do their job.
--Temporary steroid eye drops to calm down the inflammation that made my eyes feel so irritated. You can't use these long term, but they are great for occasional use.
--Prescription Restatsis which treats both the inflammation and the dryness. This is what I use now and it has worked the best for me. My eyes still tear, but they are not tearing so constantly any more.
For dry mouth, Biotene gentle mint moisturizing mouth rinse might help.
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SP, what ointment are you talking about that you apply overnight? The only advise my new very young ophthalmologist suggested was using my Refresh Optive drops right before bedtime. Most mornings I have to pry my eyelids open.
What's more disturbing is that she discovered hyperpigmentation in both of my retinas, so I'm having a retinal scan on the 29th. My vision had really been deteriorating in one eye. I have to admit that I am scared as shit about this. After I find out from the opthamologist exactly what's going on, I'll discuss it with my MO on the 3rd.
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On the dry eye and dry mouth conversation---
I have an autoimmune disorder called Sjogrens Syndrome. Diagnosed by a rheumatologist. My eye doctor prescribes me Restasis eye drops (used twice a day 12 hours apart) and I use Systane eye drops (over the counter) as many times a day as I need. I also use an eye ointment every night as I want my eyes lubricated during sleep as I have had corneal abrasions in the past. So I use over the counter Muro 128 eye ointment at night- get at my pharmacy but no prescription needed.
I have more problems with my eyes than my mouth, but my rheumatologist recommended Biotene over the counter mouth products.
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Dear Dee, super good news on the trial!
Dear Nicole, your scan seems really good - things are under control, and that is amazing. I'd ask your MO what she thinks next therapy would be but re-scanning in 2 months is a good idea with whatever choice. I personally think your goal is to shrink things, so maybe new therapy is a good idea?
Everyone: intriguing results from #DAISY ph2 trial: tested T-DXd for ABC with ANY HER2 expression. Response rate among tumors scored IHC 0 was.. 30%! An idea of bispecific antibody with TROP2/HER2 blockade comes into my mind!
Saulius
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Dear Nicole and others, another good IO option for mTNBC: https://www.targetedonc.com/view/triplet-therapy-s...
Entinostat+Nivolumab(Opdivo)+Ipilimumab(Yervoy)
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Nicole, I'm relieved the scan results were pretty good. I know the pain is disconcerting, but it could be just still dealing with mild inflammation from the Y90 and the chemo. I think you got some good advice here, and I would hold off making any decisions until you get the MRI results. A better look can usually provide some clarity.
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Hi all......I talked to my MO today...we are going to stay on the 50% dose of Halaven for now....and scan sooner 2 months mid January...if I have more pain or bilirubin keeps rising then we will talk sooner and possibly switch treatment. I am fairly postitive next treatment will be Trodlevy which we discussed today. I cannot do a PARP inhibitor of my CHEK2 mutation as they are ONLY approved for BRCA positive...they are TRYING them in trials for CHEK2 but nothing is set that they are even being really effective in that. I am letting go of the Keytruda idea for now..simply bc I am no longer PDL1 positive but now ...negative and Keytruda can cause its own set of side effects including making my Esphogitis even worse.... My MO knows I have the MRI Monday (a week from today) so I guess we will know more then....I have to bring the disc to my IR in Washington DC to read too...so until that is all done I will be getting the Eribulin/Halaven I have been on.
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Sounds like a reasonable plan Nicole. How high is your bilirubin? Isn't high bilirubin a sign of a physical obstruction to a duct? Are there signs of that?
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Husband...I havent had it checked in 2 weeks but last time it was now 1.2...but it has been rising every week from 0.7 to 1.2 and now we will see tomorrow at chemo what it is. I don't believe I have any duct obstruction bc I think they would have saw that on the scan and I don't have that kind of pain...my pain is down where my Y90 was...
Your wife and most have tumor markers to go by...but for me...its bilirubin and my itchy bites... lol
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Well, you know your body. As always you are in my prayers.
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Thanks Husband!!
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Update- My latest ct scan for the AC 682 trial was weird.
18 days apart from previous scan and of the 3 recist tumors, 1 small lesion doubled in size 😵💫, 1 stayed about the same and 1 had very slight shrinkage. The radiologist report talked about one of the newest tumors (that got me off the ARV471 trial) as not being found on this scan (maybe that was the one the IR biopsied) 🤷🏻♀️ The lung lesion grew slightly but it was the one that had SBRT over 18 months ago
There were other technical questions about the scan and the PA had no real answers today. I am going to ask for my trial MO to give me a call.
Bottom line is I have decided the radiologist focus is on trial parameters and does not give a full picture of what is really going on in my whole liver. The trial doctor does not pull up the images but goes by the report. So I feel left hanging.
Thankfully my home MO is awesome and will go over the scan in detail with me, showing me the images on screen. I will need to get an appointment with him just to get a better idea about what is going on.
All this to say, 1st dosing day is hopefully next Monday barring any issue. I am going forward, but the scan results have left me feeling less confidant in keeping the cancer under control on the lowest dose regimen (1st human to take the drug). 🙏🏻
thanks for letting me process here.
Dee
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So yesterday was a long day with scans, bloods, and MO. Pretty good news. I cannot see my scan results yet in the portal (checked again this morning) but MO said there was a decrease in the size of the liver mets. She said "small decreases" but decreases all the same. When I can see the report myself I can compare the sizes from last time to this time and see just how much the decreases were. She asked again if I thought about the Y90 procedure. I said if the Lynparza was working then I want to continue that for now.
There was an interesting finding. Multiple lung nodules in the right lung. MO not convinced it is cancer. Doing another CT in 8 weeks to monitor. I am trying not to get anxious. Could be something other than cancer. But I have not been sick-- no fever, no cough, no illness of any kind. So.... who knows.
My WBC were at the best in 4 years !!!! WBC 3.1-- still low, but much better than usual. ANC was 2200 (2.2) !!!! Wow !!! So the Lynparza is not hitting the white counts as bad as the Ibrance did. Hemoglobin was stable at 9.6--- low but stable.
So overall a good report.
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Woo hoo!!! Great news, Candy!
Are you BRCA positive?
Hugs, Susan
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hi candy-678, i think that report should be celebrated in a way you think is best, congratulations!
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SusaninSF- Yes I am BRCA positive.
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candy - congrats on the scan. Seems like lynparza is really working well for you!
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