How are people with liver mets doing?
Comments
-
Lulubee, I am very impressed with your discipline of never taking a peek inside the MRI machine. You are not missing much!
Z, I hope you can get your biopsy results, a treatment plan and medication sorted out before your Italy trip.
I had my Abraxane infusion today and asked my MO about Y90 for my liver and he was open too it and a lot more on board on it being in my near future rather than way down the line than he was 3 - 4 months ago. It is one of my potential options when Abraxane stops working or when I need a break from it. I also asked if I could take it with Abemaciclib and he said yes. He noted he would be more inclined to put me on Abemaciclib with hormone therapy than without. Being that I am always one to push things to the limit, I also asked if he would give me Abemaciclib with hormone therapy at the higher dose approved for monotherapy and he said it depends - if it was never tested at that dose then maybe but if it was tested and then lowered due to side effects in trials, then probably not. Based on what Nkb mentioned about the MONARCH trial, it sounds like it was tested at the higher dose and then lowered.
Has anyone else had conversations about Abemaciclib optionsstrategy/plans with their MOs? Would be interesting to hear what else is being said.
0 -
JFL-in the Monarch trial it was lowered after a little more than one month and didn't mention why in the study I saw. The people who started the trial earliest got the higher dose for about a month and the people that started it later did not get the higher dose for a month. I don't remember if there was any difference in outcome of the two. I am interested in Abemaciclib if Palbociclib fails- so all info you find interests me.
0 -
Kandy - Thank you for experience and your prayers. I think of you all the time. I am mentally prepared to start treatment in January but still trying to move things along.
>Z<
0 -
Christina. So sorry to hear of your loss. I lost my mom to BC when she was 42 and I was 19. I still miss her every time there's a joyous time in my life. I wish she were here to share it with me but knowing I did all I could to help her gives me solace. You did everything to help her. Remember that!
Z as I always say you amaze me. Your knowledge is astounding and your positivity is catchy. Since we haveno where to be this Thanksgiving ( My bf who made Thanksgiving every yr moved to Fla) we decided to fly over to Paris to surprise our DD for her 40 th. Maybe I'll get to crib shop with her while there. That would be the best.
I finished 1 week of rads and have 1 week to go. Can't wait for this txt to be over. For some reason I do better on chemo than rads. Weird!
Wishing all a good weekend
Babs
0 -
Babs - You are halfway there ... keep going. Rads are an awesome treatment, but not easy. Contemplating rads to my sternum.
Please hang on to that positivity for me. I will need to be re-infected the next time something goes sideways.
>Z<
0 -
Linda and Lulubee - thank you for the MRI info. I have decided I have gone through my last PET CT. There are other ways, including the ultrasafe ultrasound.
Sooo....... in waiting to go to the Goshen Cancer Center, the oncologist for intake reviews my medical chart then it goes to the breast cancer specialist that I will have an appointment with first. He had his nurse call with this question.... Did I want the TASE (chemo beads inserted into lesions)? because he does not ever recommend that the TASE be done for breast cancer metastasized to the liver. I told her no, I didn't want it, my other oncologist wanted me to have it and I didn't feel like in my condition it was best for me. Well, I feel like I have dodged another bullet. Do not know where this will lead me but now I have a breast cancer specialist that is not research that I lose after a trial is over or I have to leave a trial. Am hoping for the best. Will be seen next week, plugging me into a slot that is filled but will likely have a cancellation. Meantime 2x day I am drinking my cashew milk with red and black Meeker variety raspberry powder stirred in, hoping it helps reduce or stall cancer growth in liver. If the lesions decreased then I will know it was helping since Xeloda didn't do anything for them. And I am still on Xeloda for lymph nodes.
Wondering if anyone else has heard this about the TASE for bc liver mets? Or had it and did well or not?
0 -
TACE is very effective and many women here do it including the fearless grannax. It is on my list. Look for the y90 thread for a vigorous discussion of the topic.
0 -
Z LOL I'll have to tell my kids that I've been called the fearless Grannax, they will get a kick out of that. Thanks Z.
But, Bluebird DE, I've only been investigating TACE. A friend of mine is having it done. Just something that sounds like a possibility, at a future time, if necessary. Evidently, it can be done even if the patient has already had y90.
I did have y90 back in April and May and it was successful. Hoping to see good results again in December PET.
0 -
Bluebird, did the intake oncologist say why he has a blanket prohibition on TACE? I have heard some really positive things about it. Was it only TACE (trans-arterial chemoembolization) or did he mention any of the other local liver treatments such as SIRT (selective internal traditional therapy) aka radioembolization?
0 -
JFL - Only the TACE was questioned. I haven't spoken to him so don't know why or what else he would want or offer me to choose from. The Goshen Cancer Center has SIRT, one of the reasons I am choosing to go there. Since it is one of the only choices I have with a lesion this large, except that it is on the right hepatic vein, both are surrounding the vein actually. So I don't know. I thought I heard of others using TACE. hhmmmmm And thanks Z and fearless Grannax for input.
0 -
Not looking forward to liver biopsy Monday morning. Thanks to everyone who gave me feedback. Probably no big deal. They told me they'd be giving me conscious sedation. Versid and Fentanyl. Don't really want the Fentanyl. Has been known to cause pretty serious after affects. So, they say they'll hit me with extra lidocaine. I hope I'm making the right choice. Perhaps I should go for the full sedation.
Thoughts?
0 -
Jeenee, Versid is conscious sedation, so you will be responsive to the team but won't remember much. The amount of Fentanyl they use is not much but is easily administered and dosed for a biopsy. You should be fine. Fentanyl side effects occur when you have been on Fentanyl for a long time or too high a dose. I'm the 1% girl who metabolizes Versid almost immediately so it is ineffective for me.
Anyone on Xeloda have insomnia? That and bad constipation for me. Nausea is better.
0 -
My son is an anesthesiologist and he uses versed and fentanyl for conscious sedation. It works really well for his patients. I think it's the long term use of fentanyl that can cause problems.
I hope everything goes well with your liver BX and you don't have to wait long for the results. Jenee
0 -
Jeenee. I've had 3 liver biopsies with conscious sedation of versed and fentanyl. It was easy. I would not worry!
I hope it's easy for you too!
Bab
0 -
Thanks LindaLou. Don't know what I would do without your support. Its been a tough weekend.
I recommend daily Miralax for constipation. Senna was too harsh for my digestive system on Xeloda.
Keep things moving and you'll feel better. Otherwise, toxins build up.
0 -
Thanks LindaLou. Don't know what I would do without your support. Its been a tough weekend.
I recommend daily Miralax for constipation. Senna was too harsh for my digestive system on Xeloda.
Keep things moving and you'll feel better. Otherwise, toxins build up.
0 -
Jeenee, good luck with your biopsy. I had versed and fentanyl when I had my biopsy. I tried to convince them not to give me fentanyl but that didn't work. Like, you I heard bad things about fentanyl (but that was relating to drug abuse not surgery; regardless, I didn't want it!). I was totally out/asleep the whole time. My DH is a surgeon and he explained they call it "conscious sedation" not because you are "awake" but because you breathe on your own (as opposed to general anesthesia, where a ventilator is breathing for you).
0 -
JFL, thanks for that explanation. I really never knew what conscious sedation really meant.
0 -
I like this blog. Just more to add to your reading.
This young mom's breast ca mets were ER+,PR+, HER2-, then dreaded progression. New liver bx shows ER-, PR-, HER2+. Responding to treatment and living her life with her young family.
I cheer her on..
0 -
Zarovka, the new report of liver lesions, what the heck? Are they actually looking at your scan and not someone else's? So the radiologists ignored them because they did not have high SUV, even though they increased in number? And are they sure they are not cysts? From what Kandy and Sandi say, the MRI will distinguish. Well, if the SUV on PET is low, wouldn't that mean if the lesions are cancer, they are sluggish rather than aggressive? Good to hear that the chemo gave you an improved PET scan. Sorry to hear that you can't depend on your onc to be up to date. I don't think there are many oncs, even really good ones, who are super creative and think outside the box a lot. Your plan of abemaciclib with Fasoledex if needed seems sensible, but the immune question is there. I don't know how to tell if my liver tissue is back to normal, but I can say that it went from both lobes full of mets, some quite large, to NEAD, and only once have we ever seen liver function blood tests out of range (and it was not much). I think you will see liver healing.
"Patient management mode" sounds pretty slimy. Sometimes I worry that our showing emotion too much may cause docs to discount us. I fear ever having it said in my clinic notes that I am anything but calm and educated about bc.
Interesting discussion about abemaciclib. It sounds like I should talk to my onc about whether this should be on our short list.
JFL, that's interesting about combining neratinib with a PI3K inhibitor, because my onc said it would be used alone, and that didn't sound quite right to me, not sure why. If you have any references handy I'd like to follow up. I like the idea that Y90 could give you a chemo break without a break in treatment. Yes, there will probably be fatigue, but a break from other chemo side effects, right?
Regarding the scan modality, I have had lots of PET-CTs and a couple CTs with contrast. Is there a reason to ask about an MRI? Is it more expensive than PET-CT? Hartrish, do your docs say that the reason the CT did not show your liver lesions, but MRI did, is because it is ILC? Husband11, same question. Is it ILC, and that's why it looks strange on scans?
Kandy, somehow you got put on the extreme roller coaster. Hoping Ibrance does wonders for you.
Wendy, awesome on the passport. So where will you go? I'm starting to think a bit of weight loss means something for me, too. I had lost a little weight just before mets diagnosis and then again before progression diagnosis. But it could just be the worry during those times, too.
Christina, I'm so sorry for your loss. Linda, Grannax, babs as well. It is so unfair.0 -
Shetland - Yeah, What the Heck? Yeah, it's my scan. I spent yesterday at the library looking at my scans and yes, the CT component of the PET/CT from September shows 20+ lesions, clear to my uneducated eye. I started out on Ibrance (my first line treatment) with no more than 6. This was not mentioned in the PET scan reports because the SUV of these lesions is below background. And this omission probably goes back to April if not last year. That's just plain stupidity.
However, given that the radiologists's trained eye sees another 20 lesions that I do not, I do not believe that PET scans are a reliable way to track liver mets unless done with a CT with contrast. Live an learn as they say. I am fine with that as long as "live" is part of the equation.
The lesions persist in the post Japan scan but to my untrained eye they were really hard to find. I have two meetings with radiologists to review the scans this week and my question is whether the "improvement" is scan quality or healing. The MRI on Friday will answer some questions.
The improvement in your liver mets is what I needed to hear. Thanks.
Does anyone use one of these services that provide radiologists second opinions? Depending on how things go this week, I am signing up. Any experience with this?
>Z<
0 -
Lindalou, Another thing that helped a lot with my slow bowel issues was taking a probiotic. I was having not so much constipation but it was slow to happen. I started a probiotic last week and boy, suddenly more than regular. Although I am also getting more bloating and gas as well which is probably partially due to ascites. But still better than being "backed Up".
0 -
Thanks JFL,
I am leaning toward the fentanyl to make it easy as possible. Would prefer not to have the pain afterwards.
-Heather
0 -
the fentanyl I got was extremely low dose. Hosted soccer team dinner after biopsy. Mine was easy but it depends on where the met is.
Z
0 -
-Z-,
I have been recovering from my surgery I had this past Thursday (port removed due to clot), and started reading all of the posts I have missed. I almost couldn't believe what I was reading!!
After reading all of your posts and thinking logically about this, I have a couple of thoughts I would like to share. The first thing I thought was.... no way this can be cancer. If those mets were in your liver since April, they would be bigger and active....unless you have the world's slowest growing liver mets. There is no SUV activity...so that would deem them inactive. So my next thought was....If they were actual liver mets before the Japan treatment, then the treatment worked and is still working! That would be HUGE but I really don't think they are mets. Just my opinion based on the info I have read. The MRI is definitely the way to go for this.
Last November I was about to have microwave ablation to 2 liver tumors that showed up on my PET/CT scan. When I met with the IR he said he needed to do an MRI to get a better look at the tumors and also determine if my liver looked good. When I got the results from the MRI, the IR told me I actually had 3 and that he could not ablate 3. I don't know why he wouldn't do 3, but there are IR's out there who will do 3. Anyway I had to start a new treatment since the liver tumors showed up while on Ibrance/Faslodex. Three months later it was time for my PET/CT scan and the 3rd tumor still not showing, but I knew it was there. Long story short....It took 6 months for the PET/CT to finally pick it up. MRI is a better tool indeed!!
It amazes me how one scan report can be so detailed, and the next sounds like a third grader wrote it. When I was being treated at University of Tennessee Cancer, I noticed the inconsistency in my scan reports. We are talking huge mistakes and contradictions. I went back and looked at all of my reports, and there were 2 names that signed off each report. The person that read the report and the radiologist that signed off on it. These 2 names were not consistent throughout my reports.. (Too many eyes on it)! The person who read the report was NOT a radiologist listed at the hospital, but the name that signed off on the report was a radiologist. I came to the conclusion that the actual radiologist could not have been reading all of the reports due to all the contradictions. So with that finding and the fact that my MO was a complete B*&*h (she didn't like me running the show), I left UT and now drive to Nashville. One of the first things I told my new MO was....I want the same radiologist reading my reports!! This way If I see an inconsistency of have a question about the report....I know who to call.
What were your tumor markers doing from April until now? My tumor markers on right on and I know that I have progression with just a slight increase. I asked my MO to run my CA 15-3 every week with my blood work. She forgets half of the time, so I sound like a broken record when I ask the nurses.....Did Dr. Means put in for my markers? If I hear no then I track down nurse Emily, my favorite nurse, who has the authority to add to the blood work.
Z---I love your positive attitude and I myself always see the glass half full. You will get to the bottom of this quickly because you are always Johnny of the Spot!!
Praying for positive results.
Robin
0 -
Artist, Praying for good news with tomorrow's scan results!!
Robin
0 -
Z: Very distressed to hear about the (possible) missed progression in your liver. (What the heck?!? I think I had something similar happen and it haunts me.... lost time) Good luck with the MRI!
Jeenee: Good luck with liver biopsy. I had to have 2. (Doc evidently "missed" on the first one. It was normal liver tissue.) They were much better than that awful breast biopsy. The conscious sedation drugs are good!
MRI: For what it's worth, my doc is very insistent that the MRI's with contrast give by far the best diagnostic images of the liver. I have looked at the pics and, to my untrained eye, the MRI pics look a lot better, too. Or worse, depending on your perspective.... looked like my liver was full of rocks. (I'm glad the MRI provided better quality images. Whatever that radioactive contrast was they gave me for the PET scan made me very sick. Curious - anyone else had this happen?)
Owing to my rather brutal schedule, I have not been on here in ages so I will post an update: Have survived 3 rounds of THP so far. (Something has been pretty unfriendly to my GI tract. I am blaming the Perjeta.) Tumor markers were better before the last round. Yeah. That seems to have emboldened my Onc to utter the A word: ablation. She doesn't like to get ahead of herself, but she acknowledged that if my upcoming scans (MRI with contrast) are really good and there is no progression there could maybe possibly be a chance of looking at ablation. That sounds encouraging. Echo tomorrow, MRI in a week. Fingers crossed.
Is everyone getting Foundation One (or something similar)? My doc says it would not affect treatment options so they don't/won't order it. At least not now. Their modus seems to be to run out all known therapies and then look at other options - so I suspect that is part of what's driving their decision about this test, too.
May your labs and scans all be innocuous and your week drama free! Cheers!
0 -
PS: Thanks for posting the link to the "virtual" Diagnostic Radiology 2nd opinion (http://nationalrad.com/patients/second-opinions/). I had not seen that before. Interesting. Lately I have been getting email solicitations from SmartBridge Health: https://smartbridgehealth.com/ "Meet SmartBridge Health's exclusive network of oncologists via phone / video appointment or private message. Get instant answers and peace of mind." In other words, a 'virtual' 2nd opinion. I have not used them but would consider it. It's nice that we have options like these now.
{No conflicts to disclose - I have no connection to, nor interest in, either company.}
0 -
Hi all, I try to follow the board but it’s difficult to keep up. You are all so amazing and so informed.
I am 32 and my current treatment has failed, so far I’ve had the following: EC, Taxol, herceptin, Tykerb and Xeloda, Carboplatin and Gemzar (current). My liver function is through the roof and it’s also painful. My urine is very dark and does not look normal. Doctor is trying to motivate for perjerta, it’s not available in South Africa so may be impossible and then taxotere and navelbine together.
Has anyone had this combination? When do doctors consider liver mets to be too bad for treatment if ever? Feeling a little scared.
xx
0 -
Nina27. Have you and your onc talked about local treatment to your liver? Research Y90 radioemblization and TACE chemoembolization or DEBDOX a newer chemoembolization. These procedures are done by an interventional radiologist.
I don't know if you would be a candidate for these procedures but it's worth asking about. I've had the y90 with good results.
0
