How are people with liver mets doing?
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Dee - vent away! You have alot going on. Sorry to hear about that progression. Its tough when you don't have all the reports and everyone in synch. This disease just keeps hammering away at us, but you just keep fighting back!
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Hi Lumpie,
I am on Enhertu as part of the DESTINY Breast-04 trial for HER2 low breast cancer. The main side effect has been nausea, but I've learned to manage it with infusion premeds (Emend, Aloxi and Dex 4mg) followed by Compazine and Olanzapine at home for the week following the infusion. HER2 positive patients are having excellent response rates that are durable. There is a very active Facebook page for patients on Enhertu here:
https://www.facebook.com/groups/478640293032630Best! Theresa
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I had 40 degree Celsius fevers a few times a week on Eribulin and on Doxil. Just rode them out. They were usually high in the evening and down by morning. No paracetamol due to the liver mets but I did break down and take 400 mg of ibuprofin . Felt like a truck ran over me and it really was hard to stay lucid. MO decided they were "tumor fever" and was not particularly worried but I did have to stay well hydrated.
Mouth sores sound horrible!! Don't know what I would do. I would think anyting that helps mucous membranes such as vitamin E and buckthorn would help.
Just got my second opinion from the usa. Nothing so new but hard to read in print that "five years survival is overly optimistic" when you are 52 with two freaked out teenagers. But she thinks a year is realistic, like I'm supposed to be grateful, I guess i am.
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Aroisson,
Who did you get your second opinion from in the US? That's pretty stark....
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Dee. It seems like you are doing all the work. Compiling all the trials etc. I wish I had your knowledge and expertise. It just makes me tired to even think about investigating all that. And I'm not sure I'm even there yet.
The fact is, I don't even want to change TX right now. Like you, I want to rest for another 3 months. I do have confidence that systematic treatment is working on my lung mets. So, there's that.
The idea that I may be able to have a third y90 is pretty far fetched. It's in the back of my mind but I don't know if it's possible. There is a lifetime maximum of y90 but only my IR knows that number. I remember him saying "we might have a little wiggle room".
I know I could ask more questions on my portal to my MO but I think I'll wait till September 1 in person visit. Because of COVID and my MO"s leave, I have not seen her since February.
I hope you get some answers soon. Meanwhile, we'll keep on growling. LOL 💞
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Arolsson - Not sure liking how that second opinion came across. Maybe time for a third opinion. Who did you go to?
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at loss on- I was told in dec 2012 I had a year maybe 2 to live. Still here’s
don’t let them dictate how you live. It’s scary but they have no idea what’s going to happen. I se you with your teens for many years into their 200 -
Lumpie, thanks for the article. Very encouraging news to know. I'm glad to have an MO who does keep up on latest treatments and is willing to discuss anything and everything. I agree, an MO who cannot or will not explain tx reasoning is scary.
Arolsson, further on the MO front is one who is pessimistic and that sounds like your 2nd opinion to me. My MO has not once given me an expiration date. She keeps telling me I'll be here for years to come when I may get pessimistic. It is such a crap shoot and they really do not know how long we've got until an obvious end is near.
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Lumpie - that SABR reference is amazing. I read through the full text and one section made me tear up: friends, they had to extend the study because way more people were still alive at the "end" of their study than they had anticipated. Hurray & happy tears
About the oligometastatic designation - does anyone know if they mean originally discovered mets or can you become oligo if, say, your mets disappear during systemic treatment? The numbers for oligo definition seem all over the place too - at one point in that study they said 1-10 tho other groups define it as much lower numbers.
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Moth, my understanding of oligo status is 1-5 lesions in up to two organs, so I'm guessing that's the 1-10 total lesions.
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When I had my ablation last year of my largest liver lesion, no one discussed oligo status in order to move forward with it. At the time, we knew I had multiple lever lesions (maybe 6-7) and didn't know about bone mets bc they weren't showing up on my scans. But what I would say is that it never came up in the conversation, so if you are interested in any of these procedures, I say go for it and see what your doctors say.
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thx for that info. i know when i mentioned it in March my MO said I wasn't a candidate for targeted radiology treatments - too many small lesions in my liver. I get the sense it's just not done here much so it might take pushing. My next CT is coming up at the end of the month so we will see what's happening.
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Moth,
Honestly, I don't think that most MOs, even at the academic centers in the US, are really crazy about non-systemic treatments such as ablative treatments and Y90. When I was being wheeled in for my liver biopsy, I asked the IR in the room about y90 for whatever liver tumors they found and biopsied. He asked me who my MO was, and when I told him, he said -- oh, she never refers anyone for those kinds of treatments, but if she agrees, then sure, I'll talk to you about it after we get the biopsy results back. (And in fact, my then MO left me a message about it and said that in 30 years of practice, she had NEVER referred anyone for local treatment -- that systemic treatment was the only thing that would work because BC is a systemic disease.)
Well, that got my back up IMMEDIATELY because I am not a believer that I can't make decisions for my own body. When the results came back, I switched MOs, but even the next one wasn't crazy about non-systemic treatment (although she agreed to bring it to the liver tumor board, resulting in my ablation.) I think it's just not necessarily in their training -- they are constantly evaluating systemic treatments for BC, and local treatment is really pretty new for BC patients.
I am a member of the squeaky wheel gets the grease club, and I'm sure that my docs think I am a pain in the you know what, but I don't care -- it's my body and I research the hell out of anything I ask them about.
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LOCAL TREATMENTS CAN WORK
-To reduce tumor burden!
-To give you options that are attacking the tumors while waiting for the right systemic treatment-To give you some power over the situation that you are doing something to kill those little buggers
-To kick start your immune system and hope for abscopal effectMy story-
At the very beginning of metastatic I could have had surgery to remove the whole right lobe of my lung. I chose to get a second opinion at MDACC. Their highly revered surgeon said “not until you get some systemic shrinkage. There is too much chance of micro metastasis" I was offered SBRT instead but it was a trial that would not allow systemic at the same time,. I chose to start systemic because surgery is the golden standardfast forward 3 months - Verzenio and Faslodex did not give shrinkage. Started Xeloda
Fast forward 3 months-Xeloda allowed more tumors in the liver including the left lobe. Surgery was off the table. SBRT to the liver was off the table because of the diffuse small mets.
Heard about y-90 in this sight. Got MO to agree because I could lower the tumor burden. IR was agreeable but said it depended on the vascularity to get close to the tumors. Right side liver was good for y-90, left side had to be a bland embolization.
Had y-90 in the middle of 2 doxil treatments. IR told me he saw the tumors were growing between the practice session and actual Y-90 and was concerned that doxil wasn't working. Next scans showed he was right. Now there are some buggers in the lung.
fast forward- I stopped doxil and started Afinitor/Faslodex/sandostatin for 3 months
Next scans showed I was considered ogliometastis only a single lung lesion lit up on the pet scan. The 2 y-90 and 1 bland embolization liver tumors did not light up and we're shrinking! Neither did the multiple diffuse small spots in the liver and some small spots in the bottom of the lung.My local MO said SBRT was not going to make a difference in OSR. But I insisted on a referral. MDACC was fine with it. The local RO was all for the SBRT To the 1 lung lesion and it was a very easy treatment. Only some fatigue. I get my follow up next week.
Fast forward- latest scan showed Liver tumors with local treatments of y-90 are still shrinking. Some small progression in liver and a new small lung lesion. Staying in current treatment while looking for next step
The article came out about OSR being improved which really helped me know I did the right thing.
This sight empowers me to be my own best advocate and helps me learn about choices some MOs don't believe in or even discuss.
I'm so grateful for this group of survivors!
Dee
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Dee,
Great summary of your situation. I have read all of your stuff on here, but I have a question -- did you get SBRT to the lung lesion, or the small lesions in the liver? Just wondering bc I know I have some small lesions still in my liver that are doing nothing, so far, but I'd maybe like to get them zapped before they decide to wake up.
Thanks.
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Dee. wow thanks for all that info in your post!
So ladies GUESS WHAT????? My husband and I just got back from a consult with a Neurosurgeon for that "NEW" Met they found in my C7 spine..... he said "I don't see any cancer there"....... "I do this 70-80 hours a week...and I do not see anything there"..... I am not saying there is 100% not a tumor there but I am not seeing it. I want you to get another MRI and this time a CT scan.....
My husband and I left there crying...but again...I don't want to get my hopes up.....
Has anyone ever had this happen??0 -
Nicole The only time I had bone Mets it was back in 2000. Back then, they did a BX to make sure it was mets and to get pathology. But, I do remember the neurosurgeon knew by looking at the MRI that it was MBC. .
I think that his opinion is awesome news. Celebrate. 💞
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moth. PUSH. There is proof the y90, etc work. I know they have access to US studies. I guess it might not be covered by your Insurance. I don't know.
Local TX extends quality of life and gives the patient precious time with family and friends.
Even with active mets in other organs, it works. I don't think I would be on this earth right now, if it wasn't for y90's. I'm almost 4 years out from December 2016 DX. My first y90s four months after DX of MBC, second one only 8 months ago. 💞
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Grannax2 and Dee, thx for the encouragement!
I just read through the author affiliations & it helps that almost all the authors of this study are Canadian. Not only that, one is at my suburban center and one at the main Vancouver cancer agency!
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Thanks Grannax...yea its so hard to not get hopes up...either way..they just called MRI and CT is Wednsday of this week.
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Nicole, yay for the good news! I would take any you can get. I have both bone and liver mets; however, my original bone mets healed with Ibrance and the two new ones (after four years) are in different places. Neither one are in a safe place for a biopsy so I am hanging on.
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Intothelight...I am not counting it as NOT a Met yet....but I am hopeful. I do have other bone mets...1 in Hip and 1 in Sacrum (fracture there right now)...Ive had those 2 since diagnosis. We shall see what the MRI and CT says Wednesday
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Nicole- I am thinking of you. I hope the MRI and CT on Wednesday come back with NO cervical spine mets.
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Thanks Candy!!!!
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Nicole/ I will be thinking of you as well. It is great that the neurosurgeon thinks there is no cancer.
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moth , great news about the center near you. Keep pushing.💞
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For those of you who had microwave ablation of liver mets, did the procedure require general anesthesia or did the IR use a form of light sedation? I'm looking at having two liver mets treated with microwave ablation next week. I was told I would be under general anesthesia, but I've heard that MSK uses light sedation...
Thanks for all the information that has been shared here! I've been trying to line up microwave ablation for awhile and I will post my experience when I have the procedure. I'm currently on the DESTINY Breast04 trial of Enhertu for patients with HER2 low breast cancer.
Theresa
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Theresa45 are those immunotherapy drugs? What is HER2 LOW??? I never heard of that?
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Theresa, how long have you been in the DESTINY trial and how is the drug working? I have wanted to get on a drug for HER2 low for a long time.
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Theresa,
When I had my microwave ablation, it was not general anesthesia -- it was the twilight stuff, but they gave me enough so that I was out for the procedure. It was great -- they shot me up and I passed out. Came to after the procedure.
Just fyi -- I only had one taken out and I was sore for at least two weeks. Take it easy afterwards. After two weeks, you should be okay. Good luck.
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