How are people with liver mets doing?
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I only skimmed the posts. Welcome to the ladies I haven’t gotten to know yet
I did talk to my MO nurse She’s trying to evaluate all of my symptoms I’m waiting on a call from my IR, they want us opinion about all the pain and on going, unexpected symptoms
The most worrisome to me is three nights of horrible night sweats They wake me up with a soaking wet nightgown and sheets I didn’t have these before, could it be yet another presentation of postablation syndrome?
I didn’t have any last night and slept better
What’s next, who knows? I guess we’ll re evaluate on Monday about Tuesday
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BevJen, Glad you're home & resting. Thx for letting us know it went smoothly.
Grannax, thx for your update. I hope your MO nurse & IR come up with a workable plan for you. The night sweats sound miserable. Glad last night was better
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Talked to my RO today Re: Ablation , SBRT, Y90 ect. Said I need an IR which I Knew and asked why I'm not referred . Said " I can't refer, your MO has to do it." And as per my last update , my MO (who's filling in for my Regular) was like ' yeah they don't do the interventional Radiology for breast cancer mets" To which I mentioned all of you guys and told her that wasn't true. Anyway, my Rad Onc was like " You have a lot of spots in the liver, I don't think we've ever done y90, but for the ablation I think we only do it if its solitary or few in number and size" I know he's not totally right but he is telling me to discuss with the MO again and that regardless I need chemo to start. I knew all this but it's so frustrating to have to inform them about options and at the same time, they are refusing to do anything in regards to that.
I'm starting to feel dragged out and I know it's my body fighting this shit. I'm so frustrated. I never thought I'd be excited to start treatment and see what happens .
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B-A-P,
Wow, sounds like you've been through the mill today.
As to referrals, I actually was referred to my IR by my MO -- sort of in a convoluted way. I told my MO I wanted to know if local liver treatment was available. She agreed to refer it to my center's liver tumor board. The result was that the liver surgeon said no go, but the IR thought he could do something. So she gave me his name, and I set up an appointment to discuss. So -- not exactly a referral from the MO, but definitely indirectly. I've come to find out that they don't even know each other (it's a large institution.)
I do think with ablation, there are some limits on how many they will do, and definitely size comes into it. One other technique that was suggested to me originally was TACE -- which is trans arterial chemical embolization, I believe (not sure of what the acronym exactly stands for?) My IR originally wanted to do that until I talked with him about microwave ablation. But what he was going to do with TACE was to shoot dye into my various lesions, then insert chemo right into the tumors. If you google TACE, you will be able to understand better than I am explaining. He said that that process could and would be done seriatim -- he had suggested doing either the right or the left lobe of the liver at a time, and then even further restricting how many he would do at any given procedure. So that's another one to consider.
Hang in there. All will fall into place.
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Grannax,
I's so sorry about your ongoing symptoms. I do wonder if it's post-ablation syndrome (which I've now read a bit about) or if it's due to the fact that you were so hard hit on the first procedure, and then maybe did the second one too soon for your body? I hope you are able to get some answers and figure out when to start your new treatment. My big worry would be that maybe my body is just too tired from the two procedures to start up with a new treatment this coming week -- maybe you just need a little bit more time.
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Thanks Ben Jen. In Canada I Can't just self refer which is lame. I know I have to do the Chemo first but I want to know all my options. I could be an Exceptional responder again and not even need it ( I can dream right? ) . But I think my frustration comes from the fact that I've had to push and push for help since day 1. I got stage 4 de novo because no one would listen to a 28 year old with seemingly weak Family history, ( Which is strong now, with 4 of us in the family having some sort of cancer related to Brca 2 but I was sadly the second to be hit) and despite many pathological signs. I'm just so frustrated that these people who think they know my body better than me, are deciding what I can and cannot follow up on. I mean what's the harm in talking to someone that has the actual knowledge of these treatments instead of talking to someone who barely knows it exists and reminds me that he only deals with External beam ? I just don't want to wither away and die bc no one wants to hear me out. I know I'm not dying at the moment and I'm really on First line ( maybe I guess technically my second, but the first worked right away and I was then deemed curative) but frig I'm 33 years old with a lot left in me. Hopefully covid goes away eventually cause If they won't help me I'm going to need to get 2nd , 3rd, 4th opinions from a bigger place . Living on an island is wonderful for many things, but cancer care is slim.
Rant over *sigh*
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Grannax- Gentle hug and prayers coming your way.
BevJen- Rest and recover.
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everyone is in my thoughts. I apologize as I am so tired after working sll day snd then parenting I can’t respond to all posts. I’ve recently resumed taking my stimulant to help me get through my days of teaching.
Here is a photo of my tree this year. May everyone have a happy holiday season despite cancer and the pandemic.
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Amazing picture of a beautiful tree and family!
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Hello!
I have been peeking in and out lately and quietly rejoicing at your triumphs and saddened by your setbacks but always always had you in my prayers 🙏🏻
I thought just to give you an update maybe it helps anyone out there.
I was on an immunotherapy trial (TAPUR) for the past 7 months but it did nothing for me. The 3 CT scans I had during that time led me to be believe I was stable or minimally progressing in liver but PET and MRI showed an explosion in mets in liver (about 15) and bones (extensive to major bones in my body). I also found out that now I have brain lesions! Seriously what are CTs even good for? If I was on Vit C it would have been probably better 😂 Quality of life was not bad though the past 7 months until suddenly it wasn't and 💩 hit the fan very quick. I experienced severe bone, leg and back pain and now possibly looking into another femur/hip stabilization surgery.
I'm really bummed by it all especially the brain mets part! All of sudden, I feel like I have reached a whole new level in this $#*& whole. I cried a lot for a couple of weeks and unfortunately couldn't shield my little ones from the heartache this time.
I'm ER/PR positive and Her2 equivocal for reference. I knew immunotherapy for me was a long shot but since I tried almost everything I needed to explore out of my comfort zone.
I have been battling MBC for four years now and I blew through my treatment options and I'm literally hanging on by a thread! My mets have been growing and shrinking with treatments but now I feel I am back to square one plus some.
I did do Y90 and ablation before when my liver met load was small but obviously it all comes back with time. I have been on several lines of treatment: Ibrance/ Latrezole, Abraxane, Xeloda, Doxil, Verzenio/ Faslodex, Lynparza, Halaven, Gem/Carbo, Immunotherapy study (Opdivo).
Now I just started Afinitor/ Aromasin... which I have been putting off due to side effects but beggars can’t be choosers. I did develop the ESR1 mutation and I might possibly switch to Faslodex again instead of the Aromasin.
My F1 (2019) and Guardant blood test (2020) do not show a lot of helpful info. I have the somatic BRCA mutation, FGFR1 amplification among a few other things that probably are not targetable at this point.
My MO said if my first blood test after Afinitor showed an increase in TM she'll switch immediately. But I'm not sure that's a good idea! I really have very limited options.
I will be going in for gamma knife on Friday but I'm really scared of it all!
I apologize for the long long update! I would greatly appreciate any insights, words of wisdom and prayers!!!
thank you!!!
Heba
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Nouzay..I hear your anguish. This is too much for a young mom..just too much.
I wonder what is driving your cancer. Will the newest liver mets be biopsied to see if you are now HER2+? You had mentioned HER2 equivocal..are you eligible for Enhertu?
I am also FGFR1 amp and I have read that mTORs are good next option (Afinitor) for that mutation.
You are in visceral crisis right now..any chemos that you haven't tried to get you stable?
Hoping others will chime in.
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Heba...sorry for all you are going through.... 2 questions..what is HER2 equivocal??? Also...what did Halaven do for you? keep you stable at all?? Shrink things then stop working..?? OR not work at all?
I am assuming that you were put into an immunotherapy trial bc of all your failed treatments is that correct? Do you know if you have the PDL1?? Don't be too discouraged...I am only a year and half out and failed all 3 first lines of treatment and now halaven seems to be working for this first 3 months... to get 4 years is pretty good and I am hoping you get something soon that will work for you again. So which treatment worked for longest to get you to 4 years? Also...why cant they do Tace or Y90 I was told by my IR at Hopkins that Y90 is best when there are a lot of mets.
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LFF,
What a gorgeous tree and a beautiful family! Thanks for sharing with us.
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BevJen, glad your procedure went well. Hopefully they were able to get to the entire lesion. Please rest and recover quickly.
Grannax, hope your post ablation symptoms get better everyday. Sorry to hear you were having so many set backs. When do you start your treatment and what will you be getting?
Heba, hope the gamma knife takes care of some of the brain Mets. I know it is a lot to process. When was your liver tumor biopsied? Could it be possible that they have mutated to triple negative? I am asking because I had progressed on 12 lines of treatment - chemo and hormonal, since I have been Er/Pr+ and Her2-ve. Last month, My MO referred me to an IR who did the microwave ablation on one of the fast growing liver lesion, the biopsy report came back as triple negative. So it is possible for tumor to undergo mutation. Hope AA combo works for you.
One update about my scan -My liver MRI report shows a lot more lesions than my CT scan did. Not only the lesions have gotten much bigger but also way too many to count. On the plus side, the lesion that was ablated is gone. So my IR said that I can get y-90 to my other lesions but due to progression in my bone Mets too, my MO suggested that I start chemo right away. I started Doxil on Thursday, hopefully this will do something to keep things stable.
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S3K5,
I'm sorry to hear about the additional lesions not seen on your CT. My interventional radiologist swears by MRIs of the liver -- in his opinion, it shows the liver much more clearly. Before I was seeing him, I had a CT of my abdomen, and all it was showing was a shadow in one part of my liver. Until we did the MRI no one could clearly say what that was. Hope you can get back to stable and then deal with the additional liver lesions with Y90 or with TACE (another technique to check out.)
I am really wondering what went on when I had my October ablation. I really didn't feel well at all for a couple of weeks, and my energy was slow in coming back. Granted, I had a combo of a biopsy as well as the ablation. But today, the day right after the subsequent ablation, I am laying low, but honestly, I feel SOOOO much better than the one in October. I also already have my appetite back. My husband reminded me that in October, I really didn't want to eat much for about a week, and after that, it was touch and go from day to tay. Makes you wonder how much my liver was poked in October and what effect that had on how I felt.
Anyway, I'm happy that I feel okay. And hoping that they got all of the little bugger out of my system as well!
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Bevgen- thanks for the update. All sounds good and you sound good. Praying for best possible outcome
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LFF beautiful tree and family!
grannax🙏🏻 For recovery and answersNouzayO if you have ers1 then Faslodex is protocol now in my experience. Hate the shots but afinitor/Faslodex gave me the longest run. I tolerated that combo well. There is a steroid mouthwash you should ask about.
BAP- I hope you can get a systemic treatment that works! Y-90 and most local treatments help reduce tumor burden, but we still need the systemic backbone for cont treatment. There are BRCA trials as well as FGFR1 do put those in your bucket if possible. Can you qualify fir a BRCA drug?
Hoping for the best fr everyone.
DEE.
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Hey all.
I was wondering if someone could give a simple explanation of Y90 and the local treatments-- ablation, TACE, etc. I know there is a Thread about it, but I was wondering about a simple explanation. A summary. Are they used with 1 or 2 lesions only? If you have several lesions, and they just zap them individually, then how is that better than systemic therapy?
I was diagnosed in 2017 with an 8cm liver met. My local oncologist at the time just said systemic treatment-- Ibrance/ Letrozole/Lupron. Now it is 3 years later and I am still on I/L, but my MRI in Oct showed 4 lesions on the liver. We do not know if they were original or new--- I only had CT's before Oct so the MRI showed more detail than I ever had before. I have another MRI soon and if the 4 have grown or multiplied then it will be considered progression. I was wondering if the local treatments could be an option. Or would we look at my next line of systemic treatment.
Thanks.
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Candy,
I think that a lot of these treatments are more fully fleshed out in the other thread, but if you want a quick look at the types of things that are being offered, below are two good summaries from Memorial Sloan Kettering in NYC. They are both directed at liver cancer but they talk about a lot of the options for metastatic cancer as well. Wash U should know about all of these techniques, I would think. I just looked at their website, and I don't think they explain things as well as MSK does, but here's the Wash U site for starters --
https://siteman.wustl.edu/treatment/cancer-types/l...
MSK seems to have a lot of options for metastatic cancer in the liver, but their stuff is explained in the context of metastatic liver cancer:
https://www.mskcc.org/cancer-care/types/liver/trea...
And there is a separate listing for use of radiation in metastatic liver cancer, which is also relevant:
https://www.mskcc.org/cancer-care/types/liver/trea...
So, as to your question about zapping lesions vs letting treatment take its course -- it's faster to zap them with one of the techniques described above. And there are some in the medical community who theorize that there is somewhat of a healing effect to other surrounding tissues when you do that, but who really knows if that's true? I think it's the whack a mole theory vs. the wait and watch theory -- I am a believer in the whack a mole theory. Some are not. Most MOs aren't crazy about local treatment.
As to whether or not local treatment could be an option, from my limited knowledge, that may depend upon where the lesions are located. I think Nicole has written here that she couldn't have one ablated because it was too close to another organ, or something like that. I've now had a 2.2 cm lesion and a 1.2 lesion ablated using microwave ablation (at separate times). I have more subcentimeter lesions in one side of my liver (don't remember which) but they are not doing anything, so we just leave them alone. I believe that Y90 is used for more lesions than I had, but I don't know about size or number. My interventional radiologist originally proposed doing chemoembolization for all of my tumors (including the ones eventually removed by microwave ablation) but said that he'd only do one side of the liver at a time, and then only 2-3 lesions at a time so as not to cause any threat of liver lesions.
I know that's probably not all of the info that you wanted, but if you google large cancer centers, you will probably find more info about metastatic liver treatments and those are generally now also used for metastatic breast cancer to the liver, so that will give you an idea.
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Candy...I had cryoblation done (which is probably THE best as far as damage to liver..it causes NO damage and actually triggers an WBC to go to the area
) BUT you can only have cryoblation if the tumors are in good areas..what that means I don't know fully, but I do know if they are near the colon wall (which at the time 1 of mine was) they cannot do it. Also they must be UNDER 3.0cm. I had 2 cryoblated that were UP HIGH...like behind the area of my top 3 ribs...and that was in Oct 2019 and supposably the area is shrinking still and dead...I was told that Y90 is good when you have more than 3 mets...they traditionally will not do Y90 for Oligometastic (under 3 leision in liver...) thats what an IR told me...
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Candy, my personal experience has been similar to your - more lesions on MRI than CT.
Regarding local treatments, my IR said that microwave or cryo ablation is done only for a few lesions. Since I have so many, I could have only Y-90.
I haven’t researched different local treatments, but I am sure others will chime in. Or you could cross post it on local treatments forum.
BevJen, for some reason, my MO relies on PET and CT scans. It was my IR who had ordered MRI for the liver and then spoke to my MO about the findings. MO called me the same day and told me that things are not looking good, (which I already knew) so no more CT for monitoring. I am glad your second ablation went well, though in my opinion, it could have been totally avoided if the October procedure was done right.0 -
Thanks all.
I will research all this. I will read more tomorrow as I am very tired tonight and need a clear head.
BevJen- I will review your links. I have not talked to my MO yet on her feelings about local versus systemic treatment. I was just wondering if the local treatments would be better for 1 or 2 lesions versus someone with multiple lesions. I am thinking about it as if you have several then it would be hard to zap them all. And if you get a few, then the others are still there to grow and cause problems. Whereas systemic would hit them all.
I need to learn more about local treatments. I do not want to write off anything.
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Candy,
One thing to remember: it's not an either/or regarding local versus systemic treatment. I am on systemic treatment and still getting local treatments. The local treatments may call for a short stop in the systemic treatments, but then you would restart systemic treatment as soon as your MO says that you can (mine has held Ibrance for a few days after my ablations.) I have continued faslodex throughout all 3 of my ablations as well.
There is also some speculation that removing some tumors could affect other tumors in the same area -- it's called the abscopal effect. Something else to investigate, perhaps.
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I did get to talk for quite awhile to my IR.
He really thinks it’s postablation syndrome causing the fevers/ night sweats. He wants me to text him my temp numbers this weekend. On Monday he will decide if he wants to order a scan.
The most likely organ for possible infection would be gallbladder, because of the location of the tumors.
I won’t know till Monday or even Tuesday about the need to reschedule chemo. I agree that delay of one week will not affect the big picture.
UTSW COVID rules prevent allowing me into the building if I have a fever when I get there.
I woke up soaked again this morning. Yesterday afternoon my temp was 101.6. Evidently when it’s high during the night it does not wake me up. It’s only when the fever breaks and I’m pouring sweat that I wake up. So it’s hard to get an accurate temp reading when it’s usually the highest.
I thought I was going to have to take another COVID test yesterday but the PA decided to wait.
My daughter came over to help with some things today. I think my DIL and grandkids are coming over tomorrow to decorate my 🌲. That will be fun.
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Grannax2
So sorry you are going through o much right now. Prayers for a breakthrough. Your photo is beautiful!
Dee.
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Grannax,
Wow, you've had a rough go of it. I'm glad that you got to talk with your IR about things. Hoping that things will soon "right" themselves and that you will be feeling better. The picture with your grandchildren is adorable.
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BevJen - glad to hear your procedure went smoothly.
Grannax - I hope they find the source of the problem and get you to feeling better fast.
LFF and Grannax - thanks for sharing your holiday pics
Waving to everyone else!
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Ok, so thinking aloud here. BevJen's links above from MSK said local treatments good for 3 or fewer lesions. I have 4 so far-- 1 above 1cm and the others at subcentimeter. So would I even qualify? Then, thanks BevJen, for mentioning that it is not either/or. One can do local treatment and be on systemic too. I wasn't thinking that way. So good to know. I need to have this conversation with my MO-- 1. do they do those procedures there, I would think so and 2. how does she feel about them being an option in my case. I have read so much about the systemic treatments--- CDK's, next line options, MTORS, PIC3CA, etc. But I do not know much about the local therapies.
Still have a question about zapping 1, 2, or 3 lesions, but still having more lurking that can grow. I guess the "whack a mole" thing. Can't you zap them but more cells still be lurking to make more babies? How many of these "procedures" can you have? Zap 2 now, but more grow in a few months, zap them, growth, etc etc. As Grannax posted, she has had a tough time with her procedure. And this is expensive, right? So probably cannot do too many times.
I have a lot to learn. I just do not want to write off something that may help me.
How about Progression Free Survival or Overall Survival stats with these procedures? Do they show they are helpful? Anyone-- BevJen- with knowledge of this?
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Grannax- Great pic !!!!!! I have been praying for your recovery. You have had it rough. Wish you didn't have to go thru all that. Gentle hug.
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