How are people with liver mets doing?
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Kristina , i am so happy you finally decided to post. First i am glad your liver is holding in stable yayy. But what about the TMs rising? I know it is frustarting and depressing to find out there is another progression somewhere else. But do not give up and hang in there until they find out where it is. I do not understand why PET/CT is not reliable for you. I use the same and it is very informative. And i am ILC . it could be the bones.
Mine showed three months after my initial treatment for liver mets. I had no symptoms and was feeling fine.
If your onc thinks it is the bones maybe this is why he is requesting MRI even thoughif it is bone the forst thing he should do is a bone scan then a PET or a scan . PET shows all the hypermetabolic activity in the body and most doctors rely on it to know where the cancer is ir where it is headed. Whether you are ILC or anything else.
Keep us posted on what happens. My prayers are with you and don't stay too long without posting
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Diane50 ,
I hope your brain shows negativity to cancer and i am sorry your FISH came back negative i know this sounds crazy but nowadays it is giving good options.
I did a genomic test called intelligence testint and after two negative FISH when the test results came back , it came back with all sorts of genes and things but it also came back woth a CISH test which said i was highly her2+ . I was started on her2 targeted therapies back in november and the results were astonishing , complete response . Thanks be To God.
I hope you get the same resulta from the test. Prayers and love.
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Woody, thank you for the warm welcome :-)PET/CT last year didn't catch the mets in the liver. I don't want to use it again. Mets in the liver were seen by ultrasound with contrast. So we desided to use SPECT/CT this time for an internal organs and maybe bone scan - the last is not confirmed yet. I'll know more next week. My SPECT/CT will be in the middle of June.
I'm so glad to read about your good results. Keep going! May this lasts forever, Woody :-) Kisses
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Shetland,
I was smiling when reading your post , because i was exactly like you when diagnosed with cancer i read al, there is to read and argued each and ervery treatment suggested by my oncs. I am ILC as well and ILC is really very confusing. I was lucky i have wonderful oncs they both listen and discuss every treatment with me. Until now they haven't let me down and i am doing well. I like you keep up with all the news about cancer and new treatments but like you i stopped searching , because really with what there is on the net it could turnyour life into a lving hell. A lot of studies are old and statistics are very general. Each and every cancer is different and you get lost in all the contradictions.
If you trust your onc so just listen to her and of you are not convinced ask for more explanations.
I wish uou good response and stability and peace of mind.
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To all the ladies whose name i missed since i have missed few days of this thread, i understand your discussion was about messages, tynlenol and drinking.
Well i do messages and they make me feel good there are contradictive opinions about them but i go woth what makes me feel better. I do not take a lot of pills , i was precribed solpadeine when i was first dxd after the surgery , it is basically paracetamol , codeine and caffeine. I frankly never used it so much. Now i have naproxene which i also rrarely used. I do have some pain between now and then but i choose not to take anything as long as it is bearable and the pain goes away. All the treatments we are subjected to cause pain . As for drinking . I am not a heavy drinker , i am an occasional one. I do have a beer or a glass of wine between now and then. Some meds will raise thenliver enzymes this why onc prefer to have us quit them so there is no confusion between progression or the liver reacting to some med. i was taking a statin my onc stopped it and told me to go on a cholesterol diet because it was rasing my liver enzymes. Anything can raise liver enzymes from panadol to the chemo we take. So i am carfeul but not onssessed about it.
To all the newbies i say welcome to this thread and i am sorry we are all here and to the rest i say do everything in moderation unless you are told otherwise.
Prayers and love to all !
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Woodylb, is a CISH a newer test? I have heard the term but don't know much about it. How is it different than a FISH?
Kiss77, what is a SPECT/CT? That one is new to me.
I love learning about all the new options here from each other in case I need to ask for them down the road.
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Thanks woody for your insight on Her2. I hope Foundation One can come up with options. Thinking I will ask for more testing of Her2.
Leah hate missing chemo but good news marker is going down. Keep at it.
this board helps me so much you have no idea. Liver mets are scary. I hope the Lxempra can kick ️its butt to the curb.
I only wish good response and tolerable side effects to all. Thank you from the bottom of my heart.
Will miss chemo next week as leaving June 1-4 for minneapolis to attend nephews graduation. Then my next chemo is June 8. And back at it. My onc believes the lesion in dura is beign. One more scan before I leave and then back kicking cancers butt.
Best
Diana
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JFL,
CISH test is a test like FISH used to confirm HER2+ or deny it. It is newer than FISH and uses different criteria in determing if the patient is her2 or not. It is as accurate as FISH. I do not know why my FISH failed two times nor do my doctors. All i know is that CISH gave me more options which in turn gave me more time. It is also not standard yet so it is not covered by insurances or others.
It was apprived by the FDA in 2008. But my liver biopsy was borderline Her2 this is why i was tested for FISH , also after my genetic testing on the sample sent to Germany my cancer showed to be hetergenous. Meaning, this same sample contained places which were full of her2 copy while another slice showed none. But the doctor who studied the sample told my onc to start me right away on her2 targeted therapies. The test also stated what chemo i will most likely respond to and which less likely and which not at all.
All results were backed up with scientific studies ranging from reliable to less reliable.
I found this link on BCO which explain CISH testing i hope you find it helpful.
http://www.breastcancer.org/symptoms/testing/types...
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Diane50,
You are welcome, I hope the foundation finds more information which will give your doctors more insght on how to treat you. Have a good time at your nephew graduation.
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Christina, this is very strange are your sure it was a PET SCAN? Because PET scan are used mainly to meausure all hypermetabolic activity in the body , they use a specific acticity called FDG uptake and the SUV is the speed which indicate how fast the activity is. So even if it does not show the activity is read on the hot spots in the body. PET scans are not used only on one area of the body they are used all over to check for mets . My liver mets showed first on a contrast scan , however bone mets were neither confirmed or denied by MRI or bone scan. They did not show on the first scan or they did show but with no activity. After using Aromasin for three months they lit like a christmas tree.
You are right ultrasounds with contrast are effective in detecting liver mets. But please inquire more about PET to my knowledge it is still till now the most accurate in detecting mets in the body because it counts on tracers injected in your body and not only on the scan.
Thank you for your warm and genuine happiness for my results , i wish the same for you and everyone on this board. I am very thankful to God and overwhelmed . I take it day by day and let him lead
.I hope your next scan will give you good results and for real nothing shows. Kisses and keep me posted and don't disapear lolll.
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Yes, Woody, I'm absolutely sure - last year i made PET/CT test. And I was so relived to see there is nothing and then BAM!!! Then I spoke with other persons - for them PET fails too. It seems there are such cases.
JFL - This scan is new for me, too. I know the idea of the PET tests but I don't know what is the difference between PET and SPECT. I have a lot of questions and I'm going to ask my oncologist on Monday or Tuesday.It is made with contrast and creates 3D images....
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Kiss...cells can be so small they're hardly/not visible & then...they are. I had a perfectly normal scan Ct scan 6/12...had diep flap...and 6 mos later, a liver full of tumors. It's frustrating. Happy Sat to all...Sun to my far off friends!
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HAPPY BIRTHDAY, SHUTTERBUG!!!!
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Christina,
Six month before my liver mets dx something showed on an abdominal ultrasound. I told my onc who requested an abdominal scan and nothing showed. My TMs were below normal . Then six minths later i had a liver which lit up all over in both lobes. Both radiologists and oncs told like RonnieKay said when the cells are microscopic it nothing up to date can detect it.
But i will ask about the SPECT/SCAN to see what it is about. I hope this scan is a good ine for you.
Have a nice weekend! Kisses
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RonnieKay, have a nice weekend xoxoxoxoxo
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WOW, woodbylb... what really great news... about your success. I love success stories.
Thanks for your feedback on sloan kettering. I will definitely look into it then. My daughter suggested it and says I may be able to get a free flight there when I get back to NYS. I'm currently in FL and because of the speed of growth expected of my BC cells, I chose to stay here and get started as quickly as possible. Good choice I think... obviously the docs are very thorough and I hope to start chemo this week. had my liver biopsy but no results yet. They had trouble getting samples ... it is small and behind a vein, so hard to safely get samples. We'll see. The docs are surprised to find anything there from the BC, because only two other minimal, uncertain things and neither showed up in lungs or bones. I will probably have a brain scan too at some point. but I want them to begin chemo quickly. I think the doc had the same meds in mind for me... Glad to hear it went so well... Did you have many side effects? So I'm playing the waiting game now and actually feeling good, except that I'm in a hurry to get started. Thanks so much for taking the time to write me. It helps so much. Hope you do well on the reduced meds.. that's soooooo great.Love to you,
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Woody, I'm so happy to hear of your complete response to HP! That is awesome! My liver was also full of tumors in both lobes, and showed complete response to Taxol.
Since I was diagnosed with a new (?) primary in the breast at the same time as liver mets, my doctor proceeded according to the breast biopsy that showed ER+ PR+ HER2-. She said a liver biopsy at that point was risky, and we would save it for later if there was suspicion of a change. Looks like she made the right call. I'm glad to know about the CISH test for future reference. She also said that if one or two spots pop up in the liver in the future, she will have me see the liver oncologist about the possibility of local therapy for that.
Can you tell me the name of the genetic test you had done in Germany? Is it different from Foundation One? I had FO, but it didn't show anything they know how to target yet.
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Diana50, I hope you have a great time on your trip to Minneapolis for your nephew's graduation! I hope you can be there "in the moment" and get a mental break from stupid cancer stuff.
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Kcoralee, I just wanted to say hello and I'm glad you found us. What a shock for you, and what a whirlwind of appointments. But I'm glad you don't have to wait too long to start treatment. A lot of people say they feel better (emotionally) once they get a plan and start in.
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Shetlandpony
Thanks for wishes on my trip to nephs graduation. Actually feeling pretty good as trip will be at end of last chemo. When I return home will be back at it June 8. Haven't had a trip for 2 years as was too sick so I see this trip as a victory. Woot. All my family is in Midwest.
Will be anxious to get results from liver biopsy from FO. Hopefully something recommended. 👍. Interested in other places that look at biopsies too. Stupid cAncer. Yep.
Everyone have good weekend. Will be watching Indy 500. 🚗
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All,
Haven't been on for a week....have been reading, but not posting much. I have been so upset by our Penny's distressing news, that I didn't feel right sharing my own good news. But then, my very smart daughter (a five year breast cancer survivor herself) urged me to share the hope...we all need hope so very badly while enduring this horrible disease. So, I copied her Facebook post about me below:
"Six months ago my Mom went to M.D. Anderson Cancer Center of Texas after finding out her breast cancer had metastasized into her liver. (4 mets were found) She was told she only had weeks to months to live...to tie up her affairs and basically plan on dying. I can't begin to tell you how much this crushed her hope and her amazing spirit. She literally did "plan on dying" and was hesitant to go thru anymore chemo treatments and spend her "last days" being sick.
After much debate, she returned to the CTRC and her wonderful oncologist named Dr. Elledge. He immediately told her not to give up!! He filled her with hope and put plans into action to fight!! She began chemo treatments, continued working and had regular check-ups and scans with a team that built her back up. And now, eight months later...past the "death date" given to her previously....she is not only alive but cancer free!!! Yes , you heard me right...the tumors are GONE!!
I write this not to bash M.D. Anderson Cancer Center but in hopes that these words are NEVER spoken to anyone else again. No one can predict someone else's future (even in the worst case scenarios that so many are faced with). Hope and the simple will to live are powerful tools in the fight against cancer!!! Please choose your words more carefully...we need all the hope and positivity we can get."I'm so proud of my sweet girl...she teaches me how to hope and care and believe. My wish is that all of you get a dose of hope from this. Even though the "battle" is probably not over, I have a reprieve...as I'm triple negative, I will simply go off chemo and scan every three months. We know the Navelbine kicks my particular cancer's butt, so we will leave that weapon in the arsenal for future use.
Blessings to you all and hope you have a great weekend!
Debbie
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Debbie the good news hold us up. I want to know when people respond to treatment. When tx fail or people run out of options we need to know this too.
CAncer is our reality. Staying in reality for me is keeping me learning about options, my compassion for others grows each day and prayers reach out to hold others up.
Good news. Keep posting. 👍. Bad news keep posting. We are all in this together.
Diana
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ShetlandPony,
Wonderful news that you had a complete response to Taxol. But i am a little confused , on you history it says 2011 dx stage 1A then it says 2015 liver mets and you posted you were dxd simultaneously with liver mets. So i am a little confused. When was it that you got Taxol? And had a complete response. This is for my own info since i have ILC too. Is your liver still clear? I responded to chemo only at my first dx along with femara for three years. The two chemo i got after my liver dx didn't do much for me. It is known for ILC not be very responsive to chemo , the percentage is low. However, taxoteres are according to the test i did chemo from whoch i could benefit. So now i am wndering if i responded to taxol ot H/P. my doc thinks it is most likely HER2 but he did say we will have to wait and see.
My test is caller molecular Intelligence testing .
It was made by Caris life sciences obviously their main office is in Arizona , but mine was performed in Gemrany here is the address:
4610 South 44 Place, suite 100 / Phoenix , AZ 85040 /(888) 979-8669/ fax (866)479-4925/
/ CLIA 03D1019490/ Zoran Galactica, M.D.Dsc, Medical Director Caris MPI, Inc,d/b/a Caris Life Sciences
This is not covered by any insurance and the cost in Germany was 6500$ While CISH is approved it is still not a standard test while the other tests are still investigational. But i went for it anyway because i know alot of onc are using it in extreme cases. Good luck. I hope this helps and i do hope the foundation performs such tests.
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Thank you Kcoralee, for your kind wishes. I hope you start very soon you chemo since you say your mitotic rate is very high. You are her2+ did they suggest also her2 targetted therapies with chemo? If they did not , well they should simultaneously. I hope you get the right combination and get excellent results. Prayers.
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You are so right. I am very anxious to start my treatment. I think you soooo for responding. Yes, it is always a blow, isn't it, but I am 72, have done a lot and if I can sneak out 10 more years, I'll be more than grateful, (until I hid 82 and want to keep going... LOL)... My biggest problem right now is I'm 3-4 weeks out from diagnosis and no treatment yet, but they say that this week, if they determine it's right for me, they will start chemo... they are a little surprised to find it in the liver, so did a liver biopsy, but the doc who did it says that it was very hard to get the cells, so don't depend on the results... oh well. Let's just get started. I suppose once I am started... I'll be sorry not to appreciate a little reprieve like now, so I need to enjoy my couple of days free from doing anything... I guess... but no one can do that, can they? So this afternoon, I will be back to painting. I am an artist, focusing on watercolor. I just finished a book (only days before diagnosis), "International Watercolor Artists, Book 2" and the darling artists from around the world have sent me all kinds of wonderful caring notes on FB. It is so uplifting. So, for now, I'm doing great... but it makes a huge difference to hear from my BC new friends. Love to you and good luck on your next step.
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Thanks, Diane... a very uplifting note. Just starting the journey, but certainly soothing to know you are all out there routing for each other. and me.
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ShetlandPony - I haven't been on since I posted as I got a stomach bug that knocked me down for a few days - Yes, yes it makes perfect sense - besides the research we do another thing you said rings so true for me. It took me 3 years to find an oncologist I trust. It is so very important - I didn't realize how much stress and anxiety was due to not having complete faith in my medical providers - when I changed doctors, all of that added stress just kind of dropped away - and what a relief. She actually spends more than 5 minutes with me and talks to me - explains my choices, why she may think one better than another, the down and up side of each, etc., and then we make a decision together. As for the research, I am also with you - besides being time consuming it is mentally burdensome after awhile - I do not have any family so all of my care is up to me and I find just coordinating all the appointments, etc. about all I can handle right now. Also, I want to have a life, even if a bit limited. I want peaceful time for long walks with my precious dog, Ollie, yoga, tea with friends, good books................so thank you for your honest sharing - it is good to know you are not the lone ranger regarding the myriad feelings that go along with this journey we are on.
Also, thank you all for responses to my post about lymphatic massage - I cancelled that and just had a swedish massage with a women with magic hands and fingers - it was lovely!
Susie
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Apackoftwo, i am glad you enjoyed a massage to me it is always relaxing !
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Woody, sorry for the confusion. The choices available for setting up my profile don't tell the story clearly. I'll try to explain as briefly as I can.
In spring 2011 I was diagnosed with ILC: stage 1, grade 1, ER+ PR+ Her2-, ITCs in sentinel node, Oncotype 16. It was palpable (I found it) and it showed on mammogram and on MRI. Lumpectomy, re-excision, radiation, tamoxifen. I was premenopausal. During my time on tamoxifen, blood tests showed very high E2 and fairly low FSH, indicating that my lack of periods on tamoxifen was a trick and not menopause.
Winter 2014, my yearly mammo showed something in another area of same breast, bi-rads 3. Had ultrasound, told to re-check in six months. Summer 2014 ultrasound and yearly MRI showed the same area, now bi-rads 4. Biopsy showed ILC again, still ER+ PR+ Her2-, but now grade 2. It was palpable. (Stopped tamoxifen at this point.) At the very same time this new breast diagnosis was going on, I had an ultrasound for intermittent URQ pain that showed a suspiciously lumpy liver (blood test showed normal liver enzymes). PET-CT showed liver metastases: diffuse involvement of both lobes of the liver and large tumors (blood test starting to creep out of normal now). It also showed activity in retroperitoneal nodes (typical ILC site, as you probably know). So, as the teenagers say, "epic fail" with tamoxifen.
My onc said we would try to put the cancer into remission with taxol and then put me on an aromatase inhibitor (with lupron for OS if necessary). So a week after the PET-CT I started weekly taxol. After three cycles (three weeks on, one week off) a PET-CT showed complete metabolic response; in other words, the shapes of dead or dying, shrinking tumors in the liver but no active cancer, no FDG uptake anywhere--breast, liver, retroperitoneal nodes. My onc said that such a fast response was unusual. I had two more taxol cycles for a total of five. Blood test now showed high FSH, indicating that chemo had kicked me into menopause, at my age surely permanent. Went on the AI--tried aromasin for a short time, but switched to letrozole and added Ibrance a few weeks later. I've completed two cycles of Ibrance + letrozole.
So, my liver (and the rest of me) has been clear of active disease for about six months, according to the recent PET-CT. Liver enzymes and TMs in normal range. No palpable breast tumor.
My thoughts on why the taxol worked so well: It's quite possible that simply withdrawing the Tam helped. I have read a study that said Tam may be ineffective for a subset of ILCs and may even promote its growth. I think this was probably the case with me. Also, being put into menopause must have helped a lot, since ILC is usually very hormone-driven. I think the taxol also played a big part in the speed of my response. As I understand it, ILC is less likely to show complete pathologic response to chemo, but that doesn't mean no response at all. Also, ILC is often slow-growing grade 1, and chemo targets fast-growing cells. In my case, the ILC was grade 2, so maybe more susceptible. Finally, I did what I could to help the chemo with good nutrition, exercise, sleep, emotional support, etc. I followed the dietary advice for taxol on foodforbreastcancer.com. (I'd like to run these thoughts by my onc at some point.)
So for you, Woody, is this correct: in 2010 you had ILC grade 1 and 2, stage III, for which you had lumpectomy, radiation, and femara. Then in 2013/2014 ILC liver mets, now PR- and maybe Her2+, for which you had aromasin then added herceptin and perjeta. What are you on now? Have you had a taxane yet?
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thanks, Woodylb. Yes, I'm sure they will be treating the HER2 with the others. He listed four possible chemo drugs... taxotere, carbo, pertuzumab and herceptin. We will know Tues something about the liver, but supposedly if it comes out negative that isn't a sure take on it.
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