How are people with liver mets doing?
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Hi All - Been skimming. Need to catch up with everyone.
Had liver biopsy today. Resting at home now. Was worse than expected but could have been much worse.
Will be back soon to catch up. So much going on with all of us.
Gumdoctor
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Rest up Gumdoctor. Thinking of you.
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Hello ladies,
hope you are doing well. I am glad that we have this group to discuss about the phase that we are going through. I was diagnosed with TNBC on May 2018 and thought I will be done with all my treatment until they found a tiny spot in my PETSCAN this June 2019. My ONC was not sure whether its a cancer or not because it was too small to biopsy so we did further CT Scan and MRI. CT scan also could not gave clear result so waited to do MRI after my TE was removed. I had MRI of my liver this Monday and found that the spot is still there. According to my ONC, the size seems to increase and its now 2cm. I am waiting to do my biopsy this coming Tuesday. I am very devastated and frustrated with this news.
So I wanted to know what is your thoughts on this. Of course i googled and it says that small or equal to 2 cm is stage 2 and can be done surgery with no chemo. I do not want to go through chemo again. I would rather choose to do surgery only. What are your thoughts on this.
Please guide me. I live in OH now but we are planing to move to AZ to be closer to family. Me and my husband want to take second opinion as well but we are not sure from where to start. So please help me on this.
-Thank you
Take care
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Hi Naesha- I can totally understand your worries. I'm sorry that you are in this place. Getting a second or third opinion is always a good option. They could confirm your MO's recommendation or reveal other choices for you. Hopefully others will chime in additional thoughts soon.
Hang in there!
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mediclisa. WOW that's so scary. I go tomorrow and will talk to my MO about TTP. My platelets were 82? Not sure, I know the were low, my creatin was normal range. If Gemzar the bad guy I'd rather take something else. I had cytoxin in 92. I guess she would consider it.
Does dropping the dose of Gemzar help? I have lots of questions to ask tomorrow.
I'm feeling the very tired legs, like before, but I haven't had the SOB. It will be interesting to see what my labs will reveal tomorrow.
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Naesha,
You need to get yourself to an NCI center (national cancer institute) or a large teaching hospital where they will have all of the people who can help you with this -- not just a medical oncologist, but liver surgeons and interventional radiologists and oncological radiologists. They can bring this to the tumor board and decide if the spot is operable or not -- it will depend upon the location and some other factors. I had a 2 cm liver lesion and it was ablated by a process of microwave ablation at Hopkins in Baltimore, but there are many places where this could be done. The surgeon said that he would not operate on this lesion -- that's why I went to the interventional radiologist. FYI, my lesions were not clearly identified until I had an abdominal MRI -- the CT scans and even the PET scan that I had only showed some shadowing on my liver.
Once the biopsy comes back, I'd ask your MO if he/she can advise you about localized treatments that might be available to you.
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Hi Ladies...this will be a bit long...but I "think" most of you will be happy for David and I and I wanted to share with you all how the appointment went today.
The Lord has answered another one of our prayers. WE LOVE HER!!!!!! OMGOSH SHE WAS AMAZING!!!
When we were waiting for her in the office they send in a massage therapist.she asked if I was stressed..form 1 - 10 I say...well like a 7...my husband looks at her and says...10...she did this like pressure work on me it was soooo relaxing. Then the doctor came in she spend almost 2 hours with us. We closed the office down.lol Seriously everyone but her nurse left for the day. So as far as Ibrance/Let/Faslodex..she was NOT surprised that my MO in NY had me all three...(that surprised me) she actually thought that was very good. She mentioned that as far as those 3 drugs go, it is not that one of those failed. They ALL failed. Yes, she explained that even if one of those would have been working then we would not have see the tumors progress the way they did and especially not in such a short time frame. She also confirmed what I thought...that all of that (the growth of existing tumors plus new tumor), coupled with the fact that I had my skin condition back and pain back in hip and sacrum it is definitely progression.
She does not want to do any more AI's right now. She did say that maybe in the future that can be revisited..but definitely not now. I told her about my appointment with the IR next Thursday and the Cryoblation I would like. She is all for cryoblation but maybe not just yet. Her concern is that if he cryoblates 1 or 2 tumors then I will need a period of rest (the liver) and being off all treatment at that point would be like a month because I am already off now a week...she worries that more tumors will pop up especially since I had a whole new tumor grow in the liver in only a few months. She wants me to keep the appointment with him, she wants to see what he thinks. She has a feeling he is going to agree that I should get to a point where I am little more stable first, then do that but she still was all for getting his opinion. If he thinks I should do it now she wants me to ask him about getting a biopsy while he is in there this way we can get another new Foundation One report. She also talks about the blood biopsy for the P13K. She said that my foundation one did test for that and it wasn't there, however it could have mutated now BUT the treatment is that piquay>spelling) drug combined with faslodex...and I already failed on Faslodex so she doesn't really see the point in going to that first but she will see about getting the biopsy. Then she told us something that neither of my other 2 MO's told us. On my foundation one report a few of my cancers mutations is sensitive to 3 Kidney Cancer drugs!! She said this is where trials come in. She said "ya see I can't just prescribe you these drugs ya know why???, because you're insurance company would say NOPE! BUT, there are trials and 2 in particular that you would fit into and they both explore using drugs that are meant for treating other cancers but that your cancer can respond well too".... I then told her about the trial I heard about on here today CAR-T..(it's along the lines of immunotherapy kind of trial).she took my phone looked at what CURE-IOUS wrote about it..and wrote the trial down. She said she is going to look at the trial get more information on it then next Thursday when she meets with the Tumor Board next Thursday she will get there thoughts as well. Again...she mentioned that she doesn't necessarily want to delay my treatment to put me in a trial yet. We agreed.
Basically her main 1st line attack plan would be Chemo for me and especially with the type of cancer I have and with the way it is behaving. It would most definitely be Xeolda. She said that would be a good one to start with. Then a pretty big thing happened...I told her how my whole life my bilirubin had run a little high and that i was told I have Gilberts Disease. She starts looking at all my past blood work...she says.."ah yes definitely gilberts disease and you know what causes bilirubin to elevate stress....." The only thing I forgot to tell her and also want to mention to you all and ask for your advice and help. Every time I eat anything..even just drink a healthy green smoothie with greens and a piece of apple or pear...and carrot... Little while later I can't breath through my nose...no mucus..just inflamed!!! NO MATTER WHAT I EAT healthy , not healthy...I don't understand how that can be and it happens even sometimes when I don't eat. I take claritan D everyday and it still happens so I know its not mucus it literally will feel swollen??? My husband thinks its stress casuing inflammation and I do not doubt that..and I want to get the Ashwanda> spelling..ya know that supplement but I heard its not all that great for really relieving stress....Does anyone have any other ideas?? I am a freakin stress ball my whole life...I have tried meditation..I can't sit like that my mind is always going lol...
Also I know I should have told her about the inflammation so maybe she could prescribe something right? My blood pressure was a little low though? Any suggestions you all have I WELCOME!! I was thinking CBD?.
When we were leaving she goes "Ok so you go to the IR Thrusday I will research all these trials , tests etc and go to meet with my Tumor Board Thursday and we will meet up here Friday and have a treatment plan to start!" I was like WOW.. I felt hopeful when I left there! Last but not least..thank you all for caring about me...for making me feel that I matter...for answering all my questions..for hugging me and being in my pocket and for covering me with prayer. I am so grateful. AMEN!
Totally forgot she said I NEED TO GAIN WEIGHT.... I was at 93 lbs. fully dressed with boots...even though I am petite..she said I need more weight on ..and she wants me very strong before treatment..to be honest..I am eating really clean..but I don't feel GREAT....at all. I feel good..but not great. So I will have to add in a little carbs I think.0 -
Cross posting to here because of the liver mets.-- See next to last sentence. Ladies with "stable" organ mets how often do you scan to watch for changes????
Ok Ladies.... Get this load of crap !!!!!!!
I am due for my 3 month CT in Oct. Bone scans don't work for me due to the RA arthritis. And PET's have been denied by my insurance unless progression shows up in the CT's --- So far the CT's have been "stable" for bone and liver. So the only testing I can do is the CT's to monitor the mets.
We have been waiting on the insurance company to ok the Oct CT.
My MO's nurse called me this afternoon and said my insurance DENIED my CT and my MO had to do a peer-to-peer appeal between her and the insurance doctor. They agreed to ok the CT.
I don't know why they initially denied it or what my MO said to convince them to change the decision.
I asked the nurse " Isn't it standard of care to do 3 month CT's?". " Are we within the norm to do them?" She said "Yes" 3 month scans for the first 3 years of diagnosis, then change to 6 months.
So..... I hope I stay stable, of course. But if I am still stable next fall ( 3 years ) then we have to change to 6 month scans. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Ladies that are "stable" over 3 years...….does your insurance say 6 month scans????? And if you change to 6 month scans aren't you afraid of progression that is not getting caught earlier????
I would just pay out of pocket for the scans but the amount billed to insurance is $7,000.00 for CT of chest, abdomen and pelvis. Cannot afford that.
And I don't want to wait for symptoms because I had a 8 cm tumor in liver with no symptoms and liver enzymes in the normal range.
So.... CT is scheduled for Oct 21.
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NicoleRod, I can feel your relief that you are finally getting answers and that your new MO is really listening and giving you comforting advice.
Candy, I have liver mets and have scans every 3 months rotating between a liver MRI and CT/bone scan. But you are right, what if bone mets pop up within 6 month time?
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Nicole- How wonderful this oncologist is- a real keeper!! She gave you her best opinions and explained them and was open and receptive to exploring alternatives and researching trials, that is as good as it gets!! A huge relief, I'm sure..
But a couple of things don't make sense to me. It is clear that Ibrance cannot work on its own, but doubles the response time when combined with an AI. Your progression means that both the letrozole and femara have stopped working and the cancer is now endocrine-resistant. It might have an ESR1 mutation or a PI3K mutation or FGFR1 mutation, etc. However, under these conditions, the Ibrance can do nothing because it is unable to work on its own. Nevertheless the CDK4,6 pathway could well be intact, as it is in at least 30% of the cases when people progress on I-F., and would be responsive to Abemaciclib (which is stronger and CAN work on its own). A new biopsy will say whether the cancer remains sensitive to CDK4,6 inhibition.
Also, regarding Piqray- it suppresses the PI3K pathway, and this makes the cancer become sensitive again to anti-estrogens. Most people taking Piqray-Faslodex progressed on either I-F or I-Faslodex; having failed an AI does not disqualify you from Piqray.. So if you scored strongly for PI3K mutation, it certainly would be an option.
Xeloda clearly is what most oncs are most comfortable with when they want liver mets controlled right away, full stop, they have a lot of experience with it, plus it has few SEs.
Regarding the CAR-T trial, you are in way too early at this stage! For ER-positive cancers, that trial requires that patients have already progressed following three lines of endocrine therapy PLUS two chemotherapies in the metastatic setting. Something for the future..
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On the discussions about scans, I have liver mets which were discovered in May. Until May of 2018, when they started looking for something because my tumor markers were rising, I wasn't scanned before that for at least 10 years. Since May 2018, I started the scan game again, with CTs and nuclear bone scans in May 2018 & November 2018. Then I had a PET/CT in Nov. 2018, still looking for mets, and a breast MRI. Six months later, I had a CT, a nuclear bone scan, and PET/CT, and then an MRI of my abdomen. Sounds like a lot of testing, but it wasn't until the last set of scans that my liver mets were found. Why? Because the CT, basically, didn't pick them up!
I'm now 3 months in with Ibrance/faslodex, and so now I'm going to have a CT again. Why? because my onc said that Medicare won't pay for another PET/CT. She said that they will only pay if there appears to be a change. But how would anyone know if there's a change if there are no symptoms? That was my situation before the liver mets were found.
So this should be interesting when I have the CT. It IS ridiculous that the insurance companies (even Medicare) restrict these scans. It's not like we are doing this for kicks -- we are attempting to find changes that may mean life or death.
Very frustrating all around.
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Curious...I may not be endocrine resistant ...but clearly those three are not working not strong enough and there is definitely a new mutation that is not responding to that treatment. My husband and I both agree 100% with not doing verenzio at this point..and now I have 2 oncologists that also agree....again she said that if any of those 2 drugs were working at all I wouldn't have progressed the way I am. I probably would have been like Moomala..where some mets were staying stable and others in other area's were not....but all of my mets progressed. She didn't rule out revisiting endocrine therapy in the future.
Bev that is absolutely sad that they are not rescanning!
OH Cure-ious..thanks for making me sound soooo smart
I had emailed her everything you and I talked about, before I went to the appointment. lol 0 -
Nicole, that is FANTASTIC! I am meeting with my new oncologist soon and hope we are just as simpatico! I'm so happy that you have someone so experienced and open to discussion!
Woo hoo!
Katty
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Dear BevJen, I cannot really understand why they do CTs to liver (inner organs), as it is written in every oncology book that CT is not optimal for inner organs (except for lungs), and MRI should be used instead. We have been to numerous radiologists who always stressed that liver must be checked at least with ultrasound or PET, best with MRI. Here they alternate between MRI (every 3 months) and ultrasound (in the middle between MRIs) for inner organs. Hopefully that gets fixed, otherwise I'd really get angry... wish you all the best, Saulius
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Saulius,
Yes, but unfortunately in the US, it seems that the insurance companies (and the government through Medicare) control everything about health care, and not necessarily in a good way.
Fortunately for me, I am also being seen by an interventional radiologist who did a microwave ablation on my largest liver lesion. For him, I have to have an MRI -- he said it's the only reliable test for his purposes. So I will have an MRI in late November/early December which will check on the liver lesions -- but only because I am also seeing him.
It's a screwy system here.
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BevJen, your story is similar to mine, except I have been getting pet scans every three months. I believe that the problem lies with the ILC nature of our disease. These machines are unable to pick it up until much later..because it presents as a disconnected set of strands, instead of a mass....
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Thank you @BevJen for the advise. I have appointment today with my ONC for the follow up of MRI Results and PET SCAN results. My ONC already explained me about the MRI results but we haven't talked about the PETSCAN results yet. Today I will know the PETSCAN results. Hoping there is no more bad news.
Btw What does MO mean ?
Thank you ladies
Take care
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Sandibeach- You gave me an idea. If I stay stable and the insurance company balks at CT's every 3 months because of the stable, then maybe we can do MRI between CT's (alt MRI and CT every 3 months). Don't know if insurance will go for that, but we could try. I just hate to not be scanned but every 6 months when the Ibrance/Letrozole can stop working at anytime and my Ki67 is high and my Grade is high and I had no symptoms when the liver mets was 8 cm.--------------Stupid, stupid insurance.
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Naesha- MO means Medical Oncologist.
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Dear BevJen, we also have many "system failures" (governmental insurance) here but then we can compensate from private sector. You can go and make an MRI for ~200-250 Eur, and get an answer in 2-3 days. And, as the country is small, all radiologists/oncologists know each other, accept each other, and data is usually in one system, so they can see results if you allow it. That helps a lot... Full body CT or PET is not approved and are not compensated by government here, so if you want to get a PET, it is roughly ~1000-2000 Eur:/ Can you get a liver MRI somewhere else and pay on your own or is it too expensive? Saulius
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Hi liver metsers.
I have a question regarding supplements. I am taking the following and have approval from my MO. My liver was full of mets at Oct 2016 dx, but they are dead or "deadish" (my MO words, not mine). So I am protective of my liver.
I also being treated for hereditary and AI acquired osteoporosis, so Prolia every 6 months.
Just curious, what are others using?
My Daily List:
Citracal, time release, 1200 mg, bone health
Vit D3, 2000 IU, bone health
Vit C, 1000mg, antioxidant
Fish oil, 2400 mg, anti inflammatory, bone health
B complex, time release, liver health
Magnesium citrate, 250 mg, bone health
Vit E, 180 mg, immune system
Vit K2, 100 mcg, bone health
Milk Thistle, 300 mg, ant inflammatory, anti oxidant, liver health
Ashwagandha, 600 mg, liver health
Edited to add:
Toum (raw garlic homogenized spread) prepared occasionally
Elixer made of raw garlic, ginger, lemons, prepared occasionally
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Sandi...If you are on Ibrance/Letrozole...check out the "Do not take list" thread....I don't believe Vitamin E is recommended. I was going to do the Milk Thistle but there are interactions for Ibrance/Let. for that too I do the ALA instead. I also do 2000iu D3
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Thanks NicoleRod, especially since I realize you have a lot on your mind right now.
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Today i had appointment with my ONC and good news is that the PETSCAN result came kind of good i mean it was only metastasized to liver only and the tumor size is 2 cm. My ONC still wants me to go through chemo for precaution but i said No to it. So we have two options Microwave Ablation or Surgery. I will know more next week after my biopsy. Me and my husband were prepared for more worst news and turned out to be i guess best worst case scenario.
Does anyone of you also has the same experience ? How did the surgery go or ablation go? Please share your thoughts so that I can be prepared on what is coming in my plate.
Take care and have a good weekend.
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Naesha...what type of BC do you have? ER+ HER2- , HER2+, TNBC?
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Natasha- I had surgery. You can PM me if you like. I chose it over ablation to ensure I giot a biopsy.
Let us know what you choose.
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BevJen - I follow this thread although I do not have liver mets. Just wanted to let you know I am also on Medicare and I get a PET/CT every three to four months. Have never been declined. Maybe it has something to do with the way the pre-approval is being submitted by the doc's office?
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Moissy,
Good thought. I will look into it. I am concerned that the CT is going to be a wasted test because it's not going to show anything. I am also seeing an interventional radiologist, though, and so I will have an MRI of my abdomen (liver mets) within a month, but once I stop seeing him, I need to have a scan that will actually show something.
Thanks!
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BevJen, I recall hearing that in order for the PET/CT (and in your case, possibly the CT too) to be approved, the diagnosis code of "restaging" must be used. If something else is used, it will be denied. I have been getting PET/CTs every 3 months for years and have never been denied. (I am not on Medicare though, I have United).
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JFL,
Thanks for that info. I do seem to recall that of all of the scans I've had since May 2018, they all said that.
I do know that in the Medicare rules, there's some baloney about only 3 PET/CTs for any particular condition, or some wording like that. However, I know that some women consistently have PET/CTs even under Medicare. We'll see how this goes.
Bev
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