How are people with liver mets doing?
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JFL Thanks for your explanation about SBRT vs. Y90. I just finished reading Bestbirds PDF as well. I am amazed at what the Y90 actually does. I have 3 lesions in my liver. I am just so anxious to have something done localized. Wow that you are 4.5 years out and still working and that your tumor load has been reduced! I am encouraged!
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That's why we're here on this thread together, to encourage. About the rash, do you still have it? I think if one of the liver lesions was near the bile duct it could cause a rash. Ask your MO. But, if that was the case I think you would have other SE, like skin looking yellowish and the whites of your eyes. I'm assuming you don't have those. Also , it would cause your liver numbers on labs to worsen. I think your MO would have mentioned that.. In some cases people on Ibrance have reported a skin rash but you haven't been on Ibrance very long. So, I think you have a mystery rash and it has nothing to do with your cancer. Keep in mind I'm not a doctor just a long time patient who has also cared for other Cancer patients. Personal experience and lots of reading on this forum are my only qualifications.
Hope the itchy rash goes away, Nicole.💞
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Thanks Grann. It comes and goes. I thought I had it narrowed down to either dark Chocolate or bananas...lol the problem is it can be a delayed reaction. Also the dermatologist said it looks like a hypersensitivity to something so even if I am a little allergic, on me once I scratch it, it just gets worse like hives.
Luckily I do not have it all the time. I have to try to eliminate 1 of those at a time for a long period of time. 
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Hi NicoleRod, what were the size of your tumors upon diagnosis? I think if the rashes appeared more than a year before diagnosis then maybe the tumors would have been either too small to affect your body or even non existent at the time, as cancer in the liver generally develop fast without treatment? Hugs xx
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Daywalker..I believe they are 1.0cm 1.5cm and 2.0cm Two of them are on outside edges of the liver and the third is right below one of them. The radiologist said they are all in areas that would be considered operable.
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Hi NicoleRod, if they are operable then that is definitely a positive! All the best as you navigate through this time of deciding treatment and adjusting to the "new normal"..I also think those measurements suggest that the tumors did not exist when your rashes started, but that is just my unprofessional mathematical opinion lol
I had a routine CT scan on Monday, and my liver is still clear after almost two and a half years! I am very grateful and happy for real!
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Nicole, My liver biopsy report shows that indeed my "spots" are metastatic cancer. From the MRI and CT, it looks like there are 5-6 spots for me, with the largest being 2 cm and the others being "sub centimeter." My consulting onc at Hopkins put this before the liver board yesterday, and the surgeon said no go on straight surgery. However, the IR doc said that he thought there were several "options" -- and she did use the plural word in describing what he said. So now I'm waiting for a scheduler to call me and set something up, hopefully for next week. I will report back as to what he says and the options that he describes. The onc is NOT crazy about this idea because she wants me to start on fulvestrant and Ibrance. But she's agreed to just start me on fulvestrant for the time being until all of this settles down. I think her concern was blood counts, in starting Ibrance prior to any interventions.
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NicoleRod, I had itchy skin just prior to starting Ibrance more than 2 years ago - but no rash - so yours does sound to me like an allergic reaction (from a layman's perspective). I suspect mine had something to do with my diffuse liver mets as the itching went away as soon as I started treatment. My tumor markers plummeted from 1500 to 22 and I'm currently NEAD
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My dear friend that I met at LBBC conference is recently diagnosed with MBC to liver. She is on Ibrance/faslodex. She had to take a break on Ibrance due to low ANC when she restarted she went to 100 mg of Ibrance. She has not been on the medication for three months yet so no scans.
She's been in so much pain. Last night she went to ER. Tumors are growing so Ibrance isn't working( I guess she had scans while in the hospital last night).
Ha this happened to anyone? Did you stay on Ibrance? What do you think should be the next line of therapy from your treatment experience?
Any help would be greatly appreciated. Thank you:-)
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What is ANC?? White blood cell counts???
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Novagirl, your friend may be having tumour flares, think of it as the tumours screaming as they die, it can be very painful depending on where all her mets are. I was on the Ibrance/Femera trial & my MO warned about not scanning too soon as I/F need at least 3 months to see any stability. My ANC dropped to ,4 on the first cycle, so I was dose reduced to 100mg which worked for me for 30 cycles.
Nicole - ANC = absolute neutrophil count, needs to be at 1 or above.
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GG27, thank you for the info I hope she can get 30+ cycles on Ibrance.
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Just popping in. Nicole---ANC normal is actually 1500-6000 (1.5-6.0). My MO wants it to be AT LEAST 1000 to start next cycle of Ibrance. 0-500 is severe neutropenia, 500-900 is moderate neutropenia, 1000-1500 is mild neutropenia.
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Candy thanks for that info. I am so stupid here I was thinking my blood they are taking before my appt this coming thursday was to check that level since I started the Ibrance about 12-15 days ago but I realize now reading all your posts I probably need to complete at least 1 full cycle before they check that. I get my 2nd Lupron, 3rd Faslodex, and 1st Xgeva on Thursday.
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Nicole, they will check your ANC every 2 weeks for the first couple of cycles just to make sure your ANC doesn't drop too low.
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Hi 😊
I’m from Denmark - hope my english is understandable 😁
I’ve just had RFA to two small (1.2 cm) livermets last tuesday. I have a ‘bubbly’ feeling in the liver and feel a bit bloated. No pain unless I bend over for a while. Is this normal after RFA?
Thanks in advance.
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Who would be a candidate for RFA, or other local procedures for liver mets? My MO has never mentioned any local procedures even though the scans showed 3+ liver mets of which 2 are more than 2 cms in diameter. Has anyone done only systemic therapy and achieved regression in liver mets? I also have multiple bone mets which are being treated by chemo alone (Taxol for now).
Hjertemor, your English is perfect! I am sure someone will come by and respond to your question about RFA.
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I chose to surgically remove my line liver met when it showed up. This was mostly so I could have a sample to check the tumor type. rFA was an option but they could not guarentee they could get a biopsy.
RFA is no an option if the tumor sits by blood vessels.
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I had widespread liver mets. Went directly to systemic chemo at dx, AC. At the end of 3 months, no additional growth, some regression, stable. Proceeded on Letrozole/Ibrance. I am NEAD at this time and on 30th month of Ibrance/Letrozole.
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RFA is for a small number of mets in the right locations. Less people are candidates for it. Hjertemore, I hope your procedure ends up working out very well! There is another thread for all local liver treatments. If no one on here chimes in with past RFA experience on this thread, you can also try that thread. However, hopefully someone here will chime in.
I started out with a very heavy liver tumor burden and have had great responses from systemic therapies. My liver mets are a bit of a roller coaster but have never caused me any major issues. I have had liver regression on most of my systemic treatments, including various hormone therapies, Ibrance and many chemos. I was NEAD for 15 months on Ibrance/Faslodex/Aromasin and for 14 months on Xeloda. I have had many progressions followed by subsequent regressions.
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S3K5 - In 2012, I had 7-10 tumors in my liver (some were congruent so they would always just give the 7-10 # as not sure) and the largest one was 6 cm (a lime). With AC chemo, a hysterectomy, and going on Arimidex, I got to NEAD within 8 months and stayed there for 3 1/2 years. Since then, I've had 1 liver met and 1-2 lymph nodes near liver light up for the last 3 years. We recently did SBRT on them b/c even though those spots have grown/shrunk with treatments, nothing has grown elsewhere making me considered currently "oligometastatic-ish" Many of the more local treatments are only done with a certain # of mets and/or under a certain size. It is worth talking to your MO about where would things need to be to consider doing a localized treatment.
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Thanks a lot, ladies 😊 I'll wait and see if somebody answers my question.
In Denmark MBC-patients very rarely get RFA. Only if not any mets in other parts of the body and if there are less than 10 liver mets in total and all are smaller than 3 cm. And of course: They have to be situated 'convenient' for RFA.
I also have 3 bone mets in the spine, but they show no activity on PET/CT and are sclerotic on CT/MRI.
But - In Denmark patients with colorectal cancer get RFA even with mets else where. So - I pushed, and pushed - and pushed a little more - my Onc and finally she contacted the liver surgeons. They looked at my scans, ordered an ultrasound and then finally agreed to perform RFA.
I am extremely gratefull they allowed it 😊 But it shows - again - not to take no for an answer. We must advocate for ourselves!
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Can someone please explain to me what they mean when they say their mets are "not active" or are "active"?? Does that only pertain to bone mets or liver too? How do I know if mine are active or not and is this something my MO should have mentioned after my 1st PET last week, or is this something they tell from one scan then to the re-scan months later?
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Does anyone know when we should go to the ER with liver pain and just sickness
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Nicole. Have you read a copy of your PET report? If no, ask to have a copy. In the report it will talk about the glucose injection, with radioactive tracer, and how much of it showed up in each tumor. For example, if a tumor is actively using glucose, the report might give it a 7. If not active, it might say 3. PET does not always mention size, it looks at activity. I look at it as how much are my tumors eating. No eating is good, lots of eating is bad. So if the report says inactive that is awesome. Stable is good too. The next PET will probably compare it to the first one. If there's lots of activity, more than the previous PET, it usually means the TX failed.
Hope my lay person explanation helps.
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Gracie I never had to go to the ER, usually my IR or MO was able to help me.
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I’m just so sick, and starting to look a little yellow. I really don’t feel like traveling an hour to my onc.
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Thanks Grannax. Just called my onc and talked to his nurse...she said my bilirubin was up just a little bit last week but not enough where she would think I would be jaundiced from that. I’m going to really pour on the water for a bit and see if I might just be a little dehydrated
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I'm glad you called. Very good that there's a solution that scan keep you out of the ER. Hope it helps you feel better.
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But Gracie, that bilirubin test was last week, and the nurse has not actually seen you today. If you feel worried, listen to yourself. Can you get an exam and/or blood test close to home, maybe at your PCP?
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