How are people with liver mets doing?
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I didn’t get to read all of the posts, it’s been awhile since I’ve posted.
I had the first infusion of Eribulin yesterday. Because they don’t give pre meds with this drug, I’m not having any problems so far. The pre meds always cause more issues for me than the drug itself. Plus it was only a 10 minute infusion. I get the next one next Thursday.
So far, so good. I know what issues to expect. My labs were okay. My potassium and magnesium a little low so I’m taking RX for that. This drug can cause electrolyte problems so it’s not good to start out low. I’m a little anemic ( HGB 9.2) but not too bad.
My abdominal MRI showed that the four mets treated by MWAs are now cavities with dying cancer cells There’s also a hematoma in that area There’s an area with mets, untreated, that got larger The diffuse mets are stable Also, an area of my lung showed up on the scan it showed pleural effusion has come back it had gone away while I was on Faslodex That’s probably the cause of my issues with SOB
Nicole I did read that you are in the hospital I’ve heard about the complication of having some of the yittrium getting in another organ So sorry you are experiencing this Sounds painful
BecJen I hope the new TX won’t be too hard on you And that it works, of course
Praying for all of us facing the unknown
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Grannax,
So good to hear from you! I hope that your new treatment works well for you. You are a strong person, and so I'm sure you will forge through.
Thinking good things for you.
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Thank you AlabamaDee and BevJen for your input.
My MO said a radiologist would be reluctant to treat liver lesions if they are responding to systemic treatment. But she also offered to order PETCT to check activity.
I guess a slight shrinkage noted with 10 months on Xeloda is not fast enough for me. Sigh. Am I wrong to think that? I know stable is also good, just worry those living cells are mutating inside those lesions.
The last MRI just said slight shrinkage of lesions, no other language used..like necrosis.
P.S. I am currently on 2150mg/day of Xeloda. At night, I have grade 1 foot redness, some burning sensation. Hands never red. In the morning, feet appear normal in color. I am tolerating this dose fine.
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SandiBeach,
If you're concerned, I would contact an interventional radiologist to see what they say. As I've posted before, it's been my experience that MOs really are not nuts about local treatments, and cling to systemic therapy no matter what. Of course, you may not want to do this if you don't want to upset your MO, but it may be worth it to investigate further.
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grannax2- so good to hear from you- glad your local therapy worked So sorry you are having some side effects. hopefully eribulin kicks butt!
SandiBeach I agree with BevGen - if it were me I would press for a consult with the IR. I had to press for a radiologist to get SBRT to my lung met- my old MO was not for it. The RO was all for it!
Question to this group. I have been having some painless pressure in the liver area when I lay on my back. I feel it when I breathe. My trial PA palpated it and determined that it is not the liver and that is as far as it got. My home MO palpated and thinks it is my gallbladder (which had been full of stones for years) he did not seemed concerned.
I’m kind of anxious about the sensation as I lie in bed at night feeling like something is slightly swollen and taking up more room than normal and wondering what it is. Has anyone had that sensation? Should I pursue it further or wait until the next CT scan on Feb15?
Dee
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Dee- Interesting question. I was actually having something that was more painful/pressure on my right side under ribcage. I asked my MO about it as well. After her exam and palpating my liver and figuring where I was feeling pain, she too deduced that it was likely spasms in my gallbladder. I have never had any issues with my gallbladder and my first thought was "no way". This pain/prssue kept up for some time and eventually faded, although I get them now and again, they persist for awhile and then fade. Nothing ever showed up on my scan. She told me if the pain/pressue stayed at same intensity, not to worry, but if symptoms got worse to let her know....although I think she was still concerned on gallbladder and not something else.
Not saying its same for you, but I thought this might be helpful.
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Dee- Thanks for the information on the Contessa trial. Will be interesting to see if this combo gets approved based on the Ph 3 trial data. Do you know if they submitted the NDA? Really appreciate you passing trial information forward. I know you have spent ALOT of time researching trials. Can you offer some helpful hints on tracking best trials open and how you follow up. Do you follow SABCS? On my short list, Xeloda is in my future, so might be able to consider this combo versus monotherapy of Xeloda eventually. Please share here for interest of all, but if too detailed (or if you have already done this), you could always PM me.
Hope all is going well with you.
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thanks hopeandgratitude, I hope it is just my gall bladder
Searching for trials was very overwhelming, but I persevered and was finally able to get in. Here are sights I used (FYI- my frustration in trials was being rejected for number of lines and being on IVIG)
Clinical trials advanced search-I sort by different areas of the country where I feel able to travel to. I also sort by clinic and even key words like SERD. Sometimes I contact the clinical researcher directly to see if I qualify. I always click save for interesting trials, do some research, then decide if it should stay in my saved bucket.
https://clinicaltrials.gov/ct2/search/advanced?cond=&term=&cntry=&state=&city=&dist=
NIH/National Cancer Institute - when I contacted them about Car T trials, I was referred to another area and kept in touch with that group. I don’t mind traveling to DC. I have one in my bucket there
MBC Connect https://www.mbcconnect.org/ they will send you trials they think you qualify for, but often they are not a fit for me.
Metastatic BC advocate Christine Hodgdon has a quick search on her website. https://thestormriders.org/science-research/clinical-trials/
There is a trial search trial that I have not used. SYNERGY-AI: Artificial Intelligence Based Precision Oncology Clinical Trial Matching and Registry https://clinicaltrials.gov/ct2/show/NCT03452774
Honestly, Sarah Cannon Research Institute (SCRI) in Nashville has quite a few breast cancer trials. People fly in from all over. Once you are accepted as a trial candidate, they are pretty good at getting you in as quickly as possible. They have more BC trials and have done better than MD Anderson at finding me an appropriate trial. It doesn’t hurt that SCRI is only a 2 hour drive away. Their “ask sarah” clearing house for trial entrance is annoying but it does get you into their system. Ask for Dr Hamilton. She is very involved in trial research and presents at SABCC https://sarahcannon.com/asksarah/
I really get a lot of my info on this website. They announce them on the main area. Check out the clinical trials community thread. I try to post some there.
Hope this helps
Dee
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THANKS SO MUCH DEE!! I am going to save your response to help me get started tracking trials. Last thing you mention gives me hope. Our hospital (Mission in WNC) is part of HCA and recently announced a partnership with Sarah Cannon in Nashville, which isabout 3 hours from me. They are building their oncology group at Mission but it is a lot of growing pains and I get concerned on the care. My hope is that the partnering with Sarah Cannon will give them some strength. But happy to know it's available and not a bad drive!
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I’m still having no SE but some of what I deal with everyday is listed as an SE on the info on the drug. Nicole, when you are able to, I’d like to know if Eribulin is still working on your liver mets. You are my inspiration for taking this drug.
Dee. Amazing work on your trial research. I’m glad you’re able to travel. That’s just not in the cards for me but I hope it helps you and HopeandGratitude.
SandiBeach I agree with BevJen on getting information straight from the IR about local TX.
Hoping for the best for all of you.
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Dee, thanks for all those suggestions! Although I have yet to find a search engine worth a damn (there must be some great ones but boy are there awful ones out there!!), but it is very worthwhile to peruse the MBC trials offered at UCSF, UCLA, MD Anderson and Memorial Sloan Kettering, and now I will add Sarah Cannon to that list, its really great to hear about places that are exceptionally good or making a lot of innovations... I do also track Fred Hutchinson Cancer Research Center in Seattle, they are outstanding too and real pioneers for CAR-T in particular
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Has anyone heard anything from Nicole?
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Husband11,
I texted with her yesterday. She is home from the hospital and trying to manage her pain with liquid pain meds. They aren't working that well. She has not had a pain free day yet at home. She's going back to the pain management doc as soon as she can get an appointment.
Keep thinking good thoughts for her. I doubt that she feels up to checking BCO right now.
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BevJen, Thanks for the update on Nicole. I will pray that she will be pain-free soon. I sent you a PM, but just wanted to say that I hope your first pembrolizumab treatment went well!
Theresa
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Theresa,
I just responded to your PM. But for the benefit of others, it went well. Really quick infusion, took longer to get me set up and through the paperwork than the actual infusion (which was only 30 minutes total). No real side effects to speak off yet. Still worried that it won't work, but it's worth a try.
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BevJen
So glad thatyour infusion went well. I really hope this works for you. I must say I would love a few doses of immunotherapy as I have heard of people getting some sort of unexpected “reset” even when it was only a small part of their treatment.
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Bev, thank you so much for the update on Nicole; I was beginning to wonder if I had missed something. I hate to hear that she is still having a bad time with pain and I hope that she gets the relief she needs as soon as can be.
And thank you for letting her know how much we care about her.
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BevJen- Glad you had a good first dose and all went well. We are hoping for a great response. 🙌🏻
Sweet Nicole - if you are reading, I am praying for answers to get true and lasting relief to your pain. There must be something the medical community can do. 🙏🏻
Dee
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Bev, thanks for letting us know about Nicole. I too hope she can get some relief very soon. My thoughts are with her.
I’m glad your first immunotherapy infusion went ok. Fingers crossed that any side effects are mild.
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BevJen-
Happy the infusion went well. I may have missed a few back, but are you getting Keytruda in addition to anything else or as monotherapy?
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HopeandGratitude,
I'm getting keytruda as mono therapy. I have something called tumor mutation burden high, and in 2020, the FDA approved keytruda as mono therapy for this (determined by genomic testing -- such as Foundation One, Caris, Tempus, etc.) It was one of the first approvals by the FDA that wasn't cancer-type specific, but approved for all solid tumors.
So gone is the Ibrance and faslodex, and for now, this is my only cancer drug. We'll see how it goes!
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BevJen, It's hard to follow everyone's treatment schedules, but yours is especially interesting. So you had this long 13 years after mets were discovered, presumably just with an AI? is that because it was oligometastatic and low tumor burden? and then endocrine therapies/CDK4,6 inhibitors and now immunotherapy- So now you are approaching 15 years metastatic (!!) and still have had no chemo, even with liver mets for a couple of years? so impressive!!!
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Cure-ious,
Yes, it's pretty amazing how we all seem to have different paths on our cancer journey. My original mets diagnosis was just one site, that is correct -- it was at the tip of a polyp that formed on my cervix, and was found by my gynecologist. That was followed by a complete hysterectomy -- no other mets found -- and I went on letrozole in 2006. Stayed on that until 2019, when other mets were finally found in my liver (and, probably, in my bones, although there were different opinions on that.) In mid 2019, I had a microwave ablation to one of my liver tumors (the largest) and started therapy with faslodex and Ibrance. No chemo except at my original diagnosis in 2003/2004. Now onto keytruda as a single agent.
It's a weird story for sure. I have my own theory about why I stayed dormant for so long and why it came back when it did. Suffice it to say that I'm trying to lead a calmer life now, and hoping that will enable me to coexist with my cancer for more years!
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So, how big does a liver met have to be to get ablated, and what is the difference between that and the Y-90 and SBRT? Seems there are a lot of different ways to zap a liver tumor. However, with all this ablating I bet it really boosts your chances to get a great immunotherapy response. I suppose you do not need to do this in a clinical trial, at this point, because of the high tumor mutation rate.
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BevJen - thanks for the update on Nicole. Ive been thinking about her.. I hate that she's going through that now.
Cross-posting -- Had my MO appt today. TMs are down to 72, which is a third of what they were two months ago. ALT/AST were also lowest ever. PET/CT next month, and if all is well and TMs stay low, we may go as long as 6 months before next scan. So, good for now.
I asked about local treatment again, and this time he said he will refer me to...RO? IR? if/when I want. I'm going to wait until after PET/CT to have a better idea of tumor size/activity. MO said he'd be inclined to just stay the current course that's working. I think I'd rather kill those buggers, if we can, rather than just hold them down, so to speak.
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SeeQ- great to see the numbers going down -hope that translates to tumor shrinkage.
It is my experience that metastatic scans are typically every 3 months until you have a long track record of response and/or stable disease. If you are considering local treatment(which I recommend getting a referral) then you would have a scan to follow up on that procedure.
asking for a consult with an IR(interventional radiologist) that specializes in local treatments is a great step. Some MO’s are not fully on board with these treatments so you may have to push for the referral. If your systemic treatment is working but it is very slow regression or you haven’t reached NED, it’s possible to get a local treatment to finish the tumors off. There are risks of course. My y-90 treatment has been the only thing that worked on my larger liver tumors.
You could also request a consult with an radiation oncologist (RO) for SBRT to the liver. I was offered that option at MDACC as part of a coin toss clinical trial (SBRT or systemic but not both). I chose systemic treatment. Later, I had SBRT to a small lung lesion and that tumor stopped growing.
Wishing you peace and good results on your pet scan
Dee
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Bev Jen, your story is really intriguing and it will be interesting to see how keytruda works out!
I like your use of the term "coexist" as far as your cancer, because I do the same thing. I have never used the term "battle" because I see the cancer as part of my own body. My standard "inside" joke is that my cancer cells are evolving faster than the rest of me, but I remind them that if I die they're going down with the ship, too.
And thanks again for your updates on sweet Nicole.
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Dee - thank you so much for your response. I mistakenly left SBRT off the list when I talked to my MO. I think I will get the referral to, at least, talk about what options are available and practical (and covered). I know I am pretty early on my path, but it seems now - while the Verzenio has my tumors shrinking - is a possible window of opportunity. One concern I have is with the number of tumors I have, besides the two largest; I guess I won't know how to think about that without a consult.
In re to the longer scan schedule, MO had originally planned 3 mos intervals. He thinks my TMs are sensitive and are a good indicator of how I'm doing, and monthly or bi-monthly testing will be a sufficient monitor. My hope is that this next scan will confirm that and give me the same peace of mind.
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BevJen - do you mind sharing what makes you a candidate for keytruda? I just posted on the Ibrance page that my oncologist is wanting to take me off of Ibrance/Arimidex pending results of a PET. The BC in the R-axilla has either spread into the skin on the chest, adjacent. or it is a "new cancer". I've had regular CTs which suggested that the tumor was shrinking. She is concerned that CTs were not finding possible spread. She keeps saying "new cancer", but also says spread. She did not mention other target therapy options, just chemo, maybe radiation. I've had decreasing range of motion for a couple of months which I attributed to and accident 40 years ago, getting older, not working out at the gym because of Covid etc, never suspected cancer. "Rash " came up about a month ago. Punch biopsy found cancer. She seems convinced that treatment for previous cancers worked, but that something else is going in. Had genetic test for 20+ mutations specific to BC, nothing found.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
2019 -swelling in R-arm sent me to urgent care, clot suspected. No clot, lots of fluid. Referrred to lymphadema therapist who recognized that something was very wrong since it was contralateral to side where sentinal nodes removed. SO back to oncologist, more imaging, biospsy etc. Tumor found in R-axilla Start Ibrance and Arimidex.
Dec 2020 - increasing loss of range of motion right shoulder, rash right side of chest. CT beginning of 2021 showed "thickening". Punch biopsy Jan 2021, BC in skin. PET scheduled.
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Hi Ladies... Thanks Bev for keeping everyone posted.
Well this has not been a good experience with Y90. I am that 1% (or what ever it is) that got the worst side effect one can get from this. I have not taken pain meds now for 3 days. I still have pain but its not been above a 7. I am too afraid to take ibprophen bc of the horrible pain from acid in my stomach... I also have this colitis issue in the colon. The pain meds at home were not helping, not the way the IV pain med helped in the hospital. My whole body is just not right. I am pain in my upper back (bad) my stomach like knots and acid pain which I take priolosec 2 x a day and also in between either pepcid ac or pepto bismoal. I constantly have a horrible taste/breath which must be from the stomach...Another reason I stopped the pain meds is because all the stool softeners were causing issues as well. I have EXTEME Fatigue.
We have decided to cancel the Y90 that was scheduled for next week. I have been off any treatment for my cancer for over a month now and yesterday at my MO visit we agreed no chemo for the foreseeable future until I feel better. I was in there crying. I asked for Xanex or Valum to help me sleep she prescribed Xanex and I took 2 last night (0.5 mg) and slept but feel hung over today and still my body is aching and NOT right.
My cancer is definitely growning and spreading to God only knows where... I know its growning bc my sacrum is hurting.and I think my C7 is now hurting which there was cancer there too but never pain so this is really not good but my body definitely cannot handle any chemo now.
I appreciate all well wishes and prayers and thinking of me. I am not going to lie I am not in a good place mentally and I almost feel like giving up. I feel like I am chasing a beast I just cant catch.
I am going to stop here bc I know I am sounding negative and I am just not feeling well.
Love to you all,
Nicole
EDIT: MY IR called yesterday...she said if we do the Y90 again she doesn't see this happening bc of the location but my husband and MO doesn't want to...we will see... I asked her how long the other paitent that had this took to heal...could be another month like this... she also was so kind and asked if I would mind if she called each week to check on me.
I have a video appt with pallative care next week.
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