How are people with liver mets doing?
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Thank you so much all...my husband and I had a big...cry....I kind of knew a while ago I was progressing bc my "bites" on my elbows are back....my confusion right now is that...it looks like the sacrum rads didn't work...according to the report..yet I have a lot of relief there...I mean I was limping bad before them and I walk fine now???
I have a re-check appt and to go over all scans with RO on the 28th of this month... My MO is probably not going to call until after PET and MRI of liver..thats ok.... I just pray there is no liver progression but between the pain I have there in a new area and my bites...i think there is
. I love you all.... I am ...scared...
**** MY MO JUST CALLED.....she thinks on the report where it mentions T2 might be a mistake and its just the T3 (that I had , and is worse) she said the sacrum could look bigger bc it was radiated and be dead. She is going to double check with the RO.
I will cross post.
If there is liver progression or progression anywhere else we will try for biopsy and probably go to chemo..we wanted to go back to Eribulin bc I did so good on it..but at month 4 my elbows started itching but then I had Y90 and they stopped so we are thinking the Eribulin was failing...so if we don't do Eribulin it will probably be Abraxane and/or Abraxane with tecentriq....if NO progression in liver or anywhere else but spine..we may try Verzenio...but I am 99% postive there is progression in liver because of my bites and the pain in there in a new area...
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does anyone know if Lidocaine patches can be used on spine the night before PET scan?
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Nicole, I didn't see what it said about your sacrum in the rads report? Hang in there!
sorry, I don't know anything about PET scan prep.
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Moth here it is: but I will PM you
HISTORY: Metastatic breast cancer
COMPARISON: No prior lumbar spine MRI examinations are available for
comparison. Comparison is made to prior MRI of the pelvis 04/29/2021
TECHNIQUE: Multiplanar, multisequence MR imaging of the lumbar spine was
performed before and after the intravenous injection of 5 cc of Gadavist.
FINDINGS: Again identified is a heterogeneous/enhancing lesion centered in
the left aspect of the S1 vertebral body with extension into the sacral
ala. It has mildly increased in size compared to the prior examination,
with the inferior aspect of T1 hypointensity measuring approximately 3.6 cm
transversely (previously 3.1 cm when measured at a similar level). There is
associated mild narrowing of the left S1-S2 neural foramen. There is
minimal depression deformity involving the superior endplate of S1. There
is no appreciable epidural tumor or canal compromise.
Mild T1 hyperintensity in the L5 vertebral body may reflect posttreatment
change.
At L4-L5, there is a facet joint effusion with mild signal abnormality
involving the left facet joint. These changes are nonspecific and may
reflect inflammatory degenerative facet arthrosis. Neoplastic disease is
considered less likely given lack of discrete osseous/enhancing lesion. An
infectious process is considered less likely, and clinical correlation is
recommended. There is disc desiccation and disc bulge at this level, with
annular tear posterolaterally on the left. There is no significant disc
pathology elsewhere in the lumbar spine.
There are multiple hepatic lesions that are partially imaged on the scout
series.
IMPRESSION:
1. Allowing for differences in technique, the enhancing lesion involving
the S1 vertebral body has mildly increased in size compared to the prior
pelvic MRI.
2. There is signal abnormality involving the left L4-L5 facet joint which
is favored to be degenerative in etiology, and attention should be paid to
this region on subsequent examinations.
3. There is no epidural tumor or canal compromise in the lumbar spine.
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Sorry to intrude - Nicole, you should not use topical lidocaine prior to a PET. Initially, it vasoconstrictor the skin but after a few hours, it vasodilates. The would cause an uptake in the tracer.
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Dear Nicole, we are with you... man, this disease sucks:/ I just wish we all have a break from it:/ Saulius
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just great....I used the patches last night well I'm at PET they said that won't matter from last night took then off and they were dry at 4am anyway and I have pain so they aren't working now anyway
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Hello everyone, my mother was just diagnosed with a liver recurrence. I live in a country where treatment is quite outdated so I beg any who have experience or knowledge on the matter help me find the best treatment for my mother.
In 2012 she was diagnosed with invasive ductal carcinoma, stage IIIb, 4/6 nodes, Er/Pr+, Her 2-, did chemo, mastectomy, more chemo and radiation and took tamoxifen for 5 years.
Now she has 5+ liver lesions and most recent biopsy showed this - invasive ducal metastatic cancer, CK7 +/-, CK20-, mammoglobin +, GCDFP - 15+, Er - (allred score 0), PgR + (allred score 6), HER 2 -, e-cadherin +.
I'm so confused as to what all of this means. They want to put her back on hormone therapy and wait and then chemo if it doesn't work.
Ibrance and other ciclibes are not in use here nor is immunotherapy. What is her best option? They're also mentioning a possibility for cyber knife and thomo therapy.
Please help however you can. Even if you know of an online clinic where I can get an advice from a doctor, let me know. I'm not rich but I'll give my last dime to help her live.
Thanks, a concerned daughter
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Dear Niina, I am very sorry to read your mother is in this situation. Even though you say treatments in your country are outdated, biopsy seems to be very thorough. Apart from CDK4/6 inhibitors, there are many ways to block estrogen/progesterone. ER+ or PR+ people could chime in but but there are aromatase inhibitors (AI, like anastrozole, exemestane, letrosole). Tamoxifen might be reintroduced too (as you said it) - it seemed to be effective for many years but she's now ER-, so I don't know. Maybe fulvestrant could be used instead? Is your mother young - what about ovaries removal along AI/Tamoxifen? You could also check if CDk4/6 inhibitors are going through approval in your country (I mean, maybe they are round the corner)? What about the cell differentiation number (G1, G2, G3?) and proliferation index ki67 - do you have them? If lesions are big and liver biochemistry numbers are not good, if it is G3 and ki67 is high, maybe chemotherapy might be considered? I think you could discuss these questions with your mother's oncologist, also go for 2nd opinion... Saulius
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Daughter- What country? Is there a nearby country she could go to get CDK4,6 inhibitors added in? Because the cancer is ER-negative but PR-positive, I would also ask for testing of AR (androgen receptor) expression and if it is positive Enobosarm could be tested- it is an androgen booster (used by bodybuilders) that was recently shown to be an important tumor suppressor for breast cancer and to suppress estrogen signaling by a different pathway than the anti-estrogens. Some here are even taking it as a supplement, together with Faslodex or an AI.
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Can someone please help me decifer...it is looking like 3 new liver tumors and now in my lymph node....i BELIEVE I have 3 new liver leisions and now a node involvement....can you decifer this???
HEAD & NECK: New hypermetobolic right level 5 node image 36 measures 9 x 11 mm maximum SUV 2.1.
THORAX: New hypermetobolic low posterior periaortic mediastinal node image 111 measures 5 x 5 mm maximum SUV 2.9 No other adenopathy. Stable postoperative changes left chest wall. Stable 2 mm nodule right upper lobe image 72. No new nodule.
ABDOMEN and PELVIS: Three new hypermetobolic liver lesions including: subcapsular segment 8 image 118 measures 1.4 x 1.1 cm maxium SUV 4.3: posterior right segment 7 image 124 measures 2.3 x 1.9 cm maxium SUV 4.6, subcapsular setment 4 image 125.
THE REST about the liver was stable old Y90 stuff... then it talked about the C7 and T3 they increasead a little....
So 3 new tumors in liver and lymph node now??? Is that right? I am pretty much freaking about it being in lymph node???
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Nicole- lymph node sounds very familiar. I will go back and find my PET result which led to my treatment. I’m just now getting back from biopsy of my thyroid to check for breast cancer or thyroid csncer aa it lit up on consecutive PET scans.
I’ll PM uo
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Thank you LFF
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Thank you and all other for replying. The country is Serbia, so Eastern Europe. We are looking at treating her in Greece so they might include CDK inhibitors but I'm not sure until we go to that hospital.. Also, it's very pricey. I will ask her Greek doctor (when we finally start treatment there) about androgen testing, if it's done and how.
I don't know her proliferation number but her liver mets are quite big. There are two that are around 5cm and 5+ smaller ones. The doctors in Greece want to do cyber knife and something called thomo therapy and then put her on hormone / immunotherapy or targeted therapy but which one they choose depends on what we can, sadly, afford.
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Daughter, One point they do stress is that firstline endocrine therapy with CDK4,6 inhibitors are as effective and work as quickly as chemo, with far less side effects, and that if you can bring the cancer into control you have time to figure out best next steps
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LFF- I’m sorry you are going through the biopsy and the wait. Hoping for the best
Nicole- I know this is scary. I will PM you.
Daughter - Cyber knife (SBRT) is a very good option for local treatment - it is a high potency directed radiation. But your mom will still need systemic treatment. Cure-ious gave good advice. targeted therapy is usually easier on the system than chemo and in the states a CDK 4/6 plus an aromatase inhibitor or faslodex is considered 1st line metastatic standard of care.
Dee
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Nicole- So sorry. Hug.
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Alabama & Cure thank you so much for this. This is what I've been reading about online and I'm glad I can go ahead and push for doctors to obtain this for her.
The biggest irony is I am a doctor myself, but freshly graduated and it seems like all my vast knowledge is useless at this point and I feel like a complete idiot when treating my patients in the covid hospital but can't help my own mother.
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Nicole - Hugs. Why is the beast so hard to conquer and why do some treatments work for some, but not for others. I hope you find a treatment that is a cure. More Hugs.
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Nicole - Thinking of you and sending hugs your way.
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Sending hugs Nicole. I hope you hear from your MO quickly.
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Hugs, Nicole... please, write us after you talk to your MO... can everything once again be assessed with ultrasound, as SUV values are a bit strange (pretty low)? Were they same low in previous PETs when progression was confirmed? Lymph node is not big at all, almost in normal ranges, and neck lymph nodes are usually bigger, and very low SUV, so maybe just some inflammation? Saulius
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Hello again everyone, hope you're all doing well. I am very new to the whole stage 4 thing so please forgive the many questions and me not giving any answers to all of your concerns.
I pushed for ibrance and after several consultations with other oncologists my mum's onco decided to put her on AI + ibrance 75mg. I know that usually starting dosage is 125mg but he said her liver is too damaged?? 2 lesions of 5cm and 5+ small ones up to 1cm. Is this what he's saying normal? Is 75mg an okay starting dosage?
Will ibrance work at all if she's Er- but PgR +?
And another hard question, but maybe you have experience or have heard stories.. What are her odds with all this treatment and cyber knife? Can I hope for a few years with her where we can lead at least semi normal life? She's already given up and her defence mechanism is to argue and blame everyone. I just want my mom back.
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So my MO called. She spoke to the IR... they didn't want me to do anymore Y90 bc my MO was afraid if I have that reaction again I would be off meds again for a long time. (Ill get back to that in a minute). The IR said the tumors that were already Y90'd are still dead but there are 3 new tumors... I looks like it is near the dome? The IR said that she should be able to get a biopsy. So i have to get that scheduled. My MO wanted to go right to Abraxane...I told her my concern is that will be a 4th line of chemo 1. Doxil 2. Xeloda 3. Eribulin... and that could eliminate me from trials. I asked if the Abraxane could be paired with Tecentriq since my biopsy in 2019 showed 10% PDL1...she said right now its not approved unless you are TNBC but some trials including one at my cancer center sometimes allow it if you have some PDL1 - she has to look into it but also wasn't so confident that the tecentriq would make much difference based on past performace (my wording not hers, paraphasing) ...she completely understood my concern though about jumping into abraxane before the FULL tempus comes back. She said the HER2 , ER Status comes back in like 5 days but all the others could take a few weeks she is fearful of waiting almost a month. I UNDERSTAND her concern....so I asked her if she would re-consider being on board and telling the IR that we could do the Y90 IF the tumors are NOT NEAR the colon wall like last time...she said yes she would be ok with that...if we kill those new tumors at least 2 then that could buy us time till the full Tempus comes back. I told her I want the AR tested for as well.
My MO agreed with (what Saulius said) the 2 nodes are very tiny with very low uptake and is not concerned about them could be inflammation but not sure.,..again...not concerned with them. I do need to speak to my RO about the T3 bc that is hurting.
So I will try to set up the biopsy for asap...
Any thoughts?
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Nicole. Getting a new biopsy is a great plan. These decisions are always so tough to make but I am glad your options were discussed so quickly. I agree with Saulius on the neck node. I often get a 2-something SUV in my neck lymph nodes from inflammation. I see it on one PET scan then it's gone on the next.
Daughterof - It's good that a treatment plan is in place. I am proud of you for supporting your mom while she goes through the emotions of the diagnosis. When I was first diagnosed, I was very angry too. I was told I might have 2 years to live and expected to have a low quality of life. That initial anger and shock simmered down after a few months and I started living my life and feeling hope that I would live longer. I've been stage 4 with mets to the lungs and liver for 3.5 years. I work and have a good quality of life. Sure my life is not the same as before but it's so much better than I expected. Cancer is tough but we don't know what will happen. When your mom is ready, there are many motivational books to read that may give her hope such as Radical Remission by Kelly Turner. Please remember to take care of yourself too! -
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Nicole,
Sounds like your doc and the IR need to check out a few things first. I'd be really careful about where the new lesions are considering what you went through before. I have some new lesions and my IR won't touch them, so be very sure on that.
I think the new biopsy is really, really important -- it's been a while since you've had one and it could be a game changer. I'd get that done ASAP if you can. Bummer that it takes a while for full report, but if the HR info comes back quickly, that might provide a new direction.
Good luck and keep us all informed.
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I had breast cancer 11 years ago and went through mastectomy, chemo and radiation. I went to the emergency room due to right sided pain. The cat scan shows multiple lesions in my liver. The largest is 9.3 x 7.3 cm and is in segments 5 and 6. Several smaller rim-enhancing masses are identified more superiorly within the right lobe as well as within segments 2 and 4 of the left lobe. Findings are highly suggested of metastatic disease. It doesn’t state how many tumors are present.
I did searches on prognosis and most are months for this many tumors. I had a biopsy yesterday and see a new oncologist on Friday.What treatment can I expect?
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Kabuki, sorry you find yourself facing this diagnosis. You can scroll up through the participants on this thread & see our signature lines - many of us have been here for much longer than months with liver mets. Treatment (assuming it is breast ca mets and not a different disease) will be at least partly dependent on hormone markers. Liver mets can respond to treatments - it really varies from person to person. These early days are very difficult - be gentle with yourself.
Nicole, I hope the biopsy results come through asap and I'm glad you have at least the outlines of a plan.
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Kabuki, I'm so sorry you're dealing with this. A year ago, I was just where you are now. The first thing the oncologist (MO) told me was to think in terms of years, not months. Treatments have come a long way. Your biopsy results will guide the MO to know how to start treating you. Please come back and let us know what you learn.
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Thank you moth and SeeQ. I'll get the histology results on Friday morning and I see the oncologist in the afternoon. The breast cancer was PR+Her-
Even if hormone status remains positive I wonder if the oncologist will recommend chemo since there are so many lesions and the size of the biggest is very concerning.
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