How are people with liver mets doing?
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Arolsson/Amy - thank you for checking back in. Its sounds difficult but glad you did. I hope you have a good IR who will consider some local options for you if indeed there is progression. You said nothing left for you and that hits me so deeply. Have you been looking into clinical trials??
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Arolsson , I wondered how you were !
Extra year is a lot. Human life specially the wrong side of 50s does not have many of those extra years , cancer or not. How many teats shown increase in markers ? I have been remembering your words about teenagers refusing to take any adjustments for our situations being a normal response on many occasions last year , it is helpful to know .
Saulius , believe it or not when I have read you plan of resection then radio I have raised a bit an eyebrow - did not seem to be proportionate keeping in mind previous radiation ( I did not even think radiating twice the same area is even a thing) and tiny size of the lesions but as I know little comparatively my opinion do not count for much. Feeling validated that your team concluded the same.
Hugs to all
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I'll talk to her doctor and say that if he doesn't refer us to a y90 specialist, i'll look for someone myself. this is frustrating and i don't know why it wasn't used already. he said her radiologist considered it?
i think i would push for them to consider resection if she didn't have cancerous lymph nodes. two are in the liver area but one is more towards the center of the chest.
i guess i just feel like the doctors should be doing more, especially for the liver, i don't know if this is a sign that they're just giving up?
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macbook - I'm just going to pop in with my experience. I had 2 large liver mets and numerous smaller ones at diagnosis. My first (interim) MO started me on Verzenio and anastrozole. When I came to these boards and read how some in similar situations were treated more aggressively, and how local treatments were being used frequently, I had to wonder if my treatment plan was the best one. I talked to my (new) MO about local treatment twice - the first time I really didn't know enough to advocate for myself - and my 3 mos. scan showed great improvement. The second time I talked to him about it, he agreed to refer me, BUT before that could happen, my next scan showed me NED after 7 mos. So, I think local treatment is in my future, after my 1st line tx stops working. Would local treatment first have been better? Is having it in my pocket for the future better? I don't know, but here I am NED, and I can't complain.
The point I'm really trying to make is that they're not giving up. I just don't think early local treatment is standard everywhere yet, and systemic treatments can work. (Acknowledging that everyone reacts to each treatment differently.)
Wishing you the best.
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Dear Anotherone, thank you, you are right regarding 2nd time radiation but radiologist said they'd radiate if long time had passed and "things" cannot be surgically removed, or there are ulcers, etc. Also she mentioned more targeted radiation, like SBRT to certain places but our problem with SBRT is that it is left side, so large veins and heart:/ But yes, your knowledge was 100 % validated. Saulius
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macbookair2018 - you need to consult with an "interventional radiologist" as well as a radiologist along with your MO in order to assess what treatment might be best. Even if treated locally, they will also want to find a systemic treatment. In the past Y90 was often used later in disease setting on larger bulkier tumors. Now its something used earlier and generally in conjunction with systemic therapy or in giving you time to find a systemic therapy. If you have a healthy liver Y90 treatments can be used many times....its not limited like radiation therapy.
Have a frank discussion with your Mom's MO. if you are unsure of her care, you are also entitled to a second opinion from a different MO ( a breast cancer specialist or similar if your MO is not). I trust my MO but I also share my results etc with my first MO (I had to move) for his thoughts and opinions. He is a key opinion leader in the field of breast cancer. I share those with my MO. I don't over ride her but we discuss best options. In my case my systemic therapy is generally providing "good disease control". I had 2 new tumors appear in my liver and instead of switching systemic therapy, I had Y90 on these two active tumors, hoping the verzenio continues with systemic control. We will see.
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I am still here.
I have been in the hospital from Monday afternoon to Thursday afternoon. And I do not have a Smart phone and my computer was at home. On Sunday night I had right back pain start, along with the abdomen pain from the liver biopsy. I thought it was the start of a kidney stone--- I have had kidney stones before. But this felt different--- higher up on my back. I should have went to ER on Sunday night. Monday I called my PCP and he said to call my MO since I just had the liver biopsy. My MO said to go to local ER. I went Monday afternoon. They did a CT and then a VQ scan and diagnosed a PE in my right lung---- blood clot. I was admitted and put on a Heparin IV drip. I went home yesterday (Thurs) on Eliquis.
Good grief always something. I was not thinking of a PE.
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Candy. Good grief is right, who would think PE.? I know they can be very serious. I’m so glad you’re home and doing okay.
I have a televisit today to try to find a different pain med. I am super sensitive to meds and usually have reactions that don’t happen to the majority of patients.
For example, I’ve been on Tramadol for a couple of years. First I noticed that it made me hyper ( not a bad thing if I took it in AM). So, I wasn’t able to take it at night. Ugh. Then, recently I noticed it exacerbated my SVT. Sure enough 5% of patients have an SE of rapid HR. Ugh. So, I stopped taking it about six weeks ago. I’ve only had one event of SVT since I stopped taking Tramadol.
Obviously, I don’t need or want a really strong pain reliever. But, I am depending totally on Tylenol and it is not enough. I cannot take any aspirin products because of reflux. So that eliminates all NSAIDs.
I had an allergic reaction to hydrocodone, rash and vomiting but that was 20 years ago I don’t know if maybe I could try it again?
I took fentenyl patch several years and had a severe reaction to it so that’s out
All other pain meds I’ve had have been IV after surgeries etc and they worked but knocked me out too much for daily use.
Any suggestions?
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hi again folks, unfortunately things have taken a turn for the worse. What I thought was just a pulled muscle in my back has gotten worse over the week and now my ribs on my right side (yep, right over the liver) are sore and I feel very swollen in my abdomen. Naturally my thoughts go to ascites, which I have not had, nor have I had any liver pain despite that monster 11 cm met. It's been a week and though paracetamol+codeine helps manage the pain, any physical activity irritates it so I have to pick my most important activities (showering, buying food etc). Calls into the breast center, my contact nurse has consulted with the jour oncologist but they want me to wait out the weekend. Sending me to the ER would be probably a long wait in an uncomfortable chair and exposure to goodness knows what so I get their reasoning, but I wonder if I they understand how much pain I¨m in. Unfortunately as I've talked about earlier my kids, especially my older daughter get irritated the worse off I am-logical according to the therapist but hard when the fridge is bare. Of course I can figure something out tp get food delivered so no worries but have a gnawing feeling that this is the beginning of the end. Those of you with ascite experience are encouraged to calm me down! I did get the weekend emergency number for the oncology clinic if it gets too bad, so I don't have to just show up at the regular ER. And after all maybe its just a really bad pulled muscle /fascia?
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Arolsson, Hello! I definitely remember you from some months or even years back. I’m sorry you’re going through the rib pain and abdominal fullness. I don’t have any advice on those other than to use the oncology clinic anytime if it gets worse. I don’t know how old your daughters are, but if one or even both are old enough to help with getting food and other needs around the house, could you frankly describe your level of pain and tell them exactly what they need to do for you? Sometimes our family members need to be given specific tasks when we need help. I’m sorry if this is much too basic for your family dynamics and you’ve tried this long ago with no success. I feel for you and would happily stock your fridge if I could
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candy - you have certainly been through the wringer with this one! A PE!!! How scary. Happy you followed up and got it taken care of. You need some peace! Keep us updated.
Arolsson - I pray that this is not turning worse. You shouldn't be in that much pain....maybe they don't get how much pain you are in?? You shouldn't have to go through a whole weekend like this. If you can't take the pain, maybe ER is the answer. Also, is there some services you can turn to to help with things like groceries, housecleaning etc especially if the kids aren't able to bring themselves to help? I can understand they might be in some sort of denial, but you have enough to deal with and shouldn't have to worry about how your illness makes them feel! You need to take care of you.
Grannax- can't help out with pain meds. Sorry. Nicole has alot of experience....
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Arol, please recontact your MO and ask to be seen today prior to weekend.
If not, ask one of your children to take you to the ER. You know your body.
You should not have to be in pain additional 3 days due to the inconvience of the weekend.
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arolsson- I agree with Sandi - they must not have understood how much pain you're in. I would call back more insistently.
Candy - so glad you're home and can get some rest. What an ordeal! And scary!
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arolsson- I hope you can get help you need. Good to hear from you sorry you are suffering
Candy- Oh my, so glad you are ok. A PE is dangerous. I had a DVT from my first port so I when I got my second port they put me on LD Elequis. One more thing to deal with.
Grannax- I can’t handle most pain meds. I take Nucynta which has regular and extended release. I use 50mg but there is 100mg also. It doesn’t have Tylenol in it, so I can add that if I get the headache that sometimes comes with nucynta. Most pharmacies don’t carry it so it has to be ordered. Hospitals don’t carry it either so I bring it in.
Dee
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Grannax, you might want to look into trying Delta 8 gummies. I believe they are hemp derived; I'm not sure if it's the same thing as CBD, but they are legal in Texas. I know two people who have used them for pain with great success; one is a long-time cancer patient like we are.
It's worth a try and I hope you find something that works for you ASAP.
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Arolsson , cancer charities etc ? Friends ?
My heart goes off to you.
It is not over until it is over. Can be many things. I believe JFL bounced back from ascites i- forgive me please if I am wrong. And husband's wife ?
Candy, thank you for bringing PE to our attention- people with cancer have higher chances of it developing and it can be very serious - lethal even so better keep that one in mind.
Grannax , you seem to have had a couple if good suggestions.
Going back to NSAIDS - there is delayed release ibuprofen I believe which dissolves in duodenum rather than stomach - I may be wrong but worth checking.
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MacBookAir- Systemic can work. My initial liver mets in 2002 disappeared after starting AI's (I am strongly ER+) until 2015. It's been a combination of Ibrance/Faslodex and a liver resection/ablation in 2016 that kept them in check until Dec.2019. Of course I was hoping my 2016 resection would take care of it permanently but my markers starting going up so I continued on Ibrance until they found mets again in Dec. 2019- a MBC tumor around my small intestine (unusual place, taken care of with emergency surgery on Xmas Day) . We also found LIver Mets in January 2020 (was not picked up on my original CT scan in Dec. but on a follow up PET scan so I now only get PET scans). My January LIver and rectal mets (also not an normal place for BC mets) disappeared after starting Xeloda and I have been NED again for a year now! I'm trying to keep track of all the different types of treatments out there in case I need to consider something else in the future. It's been a journey.
I noticed your wife also has bone mets which may affect decisions about different types of treatment. Not sure what the thinking is when you have mets in more than one place. NIna
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NinaCA - you have certainly been blessed to have been able to stay on an AI for nearly 13 years!! Amazing. And it was great too to have systemic and local treatments that took you through another 4 years. And now NED on Xeloda. A long journey for you but filled with times of peace. Most of us are not quite as fortunate as I am.sure you have read in this thread. I wish you continued blessings on this journey.
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Thanks for all your suggestions about pain meds. I did talk to my PCP yesterday on a tele visit. She’s known me for over 20 years and knows all my quirks, etc. She’s an internist and very smart
After some discussion, we decided to try hydrocodone. It will be a small dose and she’s only giving me 20 pills for right now. We’re being super careful with it because of a reaction I had to it about 20 years ago. I’m willing to try it again because I believe I had the reaction because I was given a higher dose ( I had just had an open BX on my C3) in the hospital. Also, the reaction only happened after it had built up in my system.
For now, fortunately, I only need a little help with the intermittent pain ( liver area) that Tylenol doesn’t cover. I know not to drive after I’ve taken it. She also says it might make me groggy. I’ll give it a try and see what happens.
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Joining you all on this thread since they discovered a liver tumor on my last scan. Only 1.1cm at this point. Eager to get my one tumor zapped with radiation but my MO wants to wait until we see my scans on Monday to figure out if Verzenio is working.
See so many of my friends from other threads! Maybe we should have a thread for people with multiple mets spots. Just kidding!
Hugs, Susan
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Hi Susan. Sorry you are joining the liver thread. You have been an inspiration in how you have kept chugging along and have pushed to access a number of cutting edge treatments.
I could go for the multiple site thread. What should we call it? Mets freaking everywhere? Just kidding as well... I have a tendency towards dark humour - coping mechanism.
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Thanks, Sadieservant! You have always been an inspiration to me too. Looks like you are new to this liver thread too. So sorry about that.
I also see from your history that you are redoing Xeloda after a long stretch on Verzenio. I'm amazed and heartened that you have done so well on Verzenio despite having been on Ibrance.
It's so helpful to be able to read your whole history. I do the same, mainly because this is the only way I can remember all of my treatments, the dates, etc.
I hope you will be able to stay on Xeloda for a long time. Love the oral treatments. It's exciting to think that I may be able to do Xeloda again too. I haven't talked to my MO about this possibility.
Hugs, Susan
P.S. Love your suggestion for a name for the new thread! LOL! Maybe we should start it for those with three or more kinds of mets. I've got five.
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sorry to see you here Susan. Love your sense of humor. Hope you get the answers you need tomorrow.
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Hi Susan...sorry you had to join us here but happy to be here for you! Hope you get that 1 tumor zapped! This thread moves VERY quickly...lol sometimes its hard to keep up. Glad I saw your post though.
Sadie...that was a funny name for a thread lol
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Hi Susan. My run on Ibrance was short. It didn’t fail but my woosy blood couldn’t take it. After just a few months my red cells and Hb dropped down to the transfusion level. My MO said, uh no... we need to stop. Verzenio was tough but kept things stable for quite awhile.
As to Xeloda, my MO has a different approach to chemo it seems. He likes to hit the cancer and then back off, switching to another hormone therapy. He’s already flagged that he only wants me to do six cycles and then back to estrogen treatments. My sense is that he wants to hold Xeloda in his back pocket as we saw a good response and can go back if things get a bit hairy. I’ll know better what he has in mind at the beginning of June when I scan again.
I had to chuckle about your comment on the history. I’ve actually been wondering if I should look at shortening this up. It seems a bit ridiculous how many treatments I’ve had. I’ve been laughing with friends about filling out the pension disability forms (still working three days a week but the insurer requires me to apply - ood grief, 27 page document!) listing all the treatments and, even more hilarious, the tests. One full page listing bone scans, CT scans and MRIs. Honestly, I’m sure I glow in the dark.
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Sadie. Mets Freaking Everywhere, I like it. I’m in. Although I only have lung, chest and about a zillion in my liver. Do you think I qualify for the new thread? Oh, and I did, back in 2000, have mets in my C-3 vertebrae.
We have to laugh or we would be crying all the time. I hate trying to write down my thirty year history of BC and MBC. As you will notice, I haven’t even managed to write it down on my profile. Thank goodness I’ve been on here so long most people know me and most of my history.
Susan, welcome. Yep get that liver monster zapped or y90ed or microwave Ablationed.
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Chiming in, in case you may be interested in participating.
TODAY at 2:00 PM ET (US and Canada): Zoom Virtual Meet-up for those with a diagnosis of metastatic breast cancer
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZMud-mppjguE9cVL5jJvM8j5-fR5kByW3Ui
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Arolson, my wife had really bad ascites. It was misdiagnosed over and over again, and it wasn't until someone used ultrasound, that they correctly diagnosed it. By that time she was accumulating up to 4 liters in less than a week. The treatment was diuretics, blood thinners to reduce clotting (in case that was the culprit), and allowing time for the xeloda she was on to continue to work and her liver to heal. She eventually had a line installed so we could drain her at home. By that time, although we were still draining many liters per week, it slowly began to reverse itself. At its worst, my wife looked and felt like she was 9 months pregnant, had difficulty walking and sitting. She was constantly uncomfortable. She told her it was constipation and gas, if you can believe it. X-rays and tapping on her belly resulted in total misdiagnosis. Ultrasound was the key to correct diagnosis.
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Ok so my path report from the liver biopsy went to the patient portal today.
Tempus pending.
Confusing trying to read the path report but I read it as ---
ER Negative----- was strongly positive in 2017.
PR Positive-- was positive in 2017
HER2 Equivocal----was Negative in 2017 What does "equivocal" mean???
Also says "the tumor cells are positive for GATA3". What does that mean??
So I lost ER? So the hormone therapy not working anymore?
Help me understand.
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equivocal means they can't call it positive or negative based on that test. They'll probably want to send for FISH. This could be excellent news because gaining her2 opens many more treatment options and there is amazing progress with her2 LOW patients.
Not sure how the loss of ER will affect hormone treatment. My understanding is that ER is way more the driver than PR.
GATA3 is considered a good marker for luminal so I think this means your cancer is luminal.
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