Liver mets: resection, ablation, SBRT, Y-90, anything else?
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AlabamaDee I have had liver resection on single liver metastasis in November 2017. Together with this they took my ovaries and gall blader. Recovery was fast, they were able to do it laparoscopically. My liver is as of July Mri 2019 clean of any metastasis. I am very happy with the procedure. Actually I was only on exemestan four month before surgery (changed from tamoxifen when the one liver and one spine met was found). After the surgery they did not change the treatment and I remained on it until May 2019, when my spine met became active. I have tried many experimental or complementary things as well, but I favor resection as the most poverfull for me
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I had a liver resection of a 1.6cm isolated liver tumor in June 2019. At the time of surgery, no other liver lesions were seen on liver MRI. Unfortunately, I now have 3 to 5 new liver lesions (largest 10mm), but the resected liver lesion appears to be gone. I was not aware that the regenerating liver could cause liver micromets to grow. Ugh! As for healing, I had the surgery at 4pm and was home by noon the next day. I normally avoid painkillers, but ended up on oxycodone for 7 days (less frequently as week went on). I was able to attend my oncologist appointment 4 days after surgery. By the second week, I was taking occasional Advil. The surgeon said he removed an area about the size of half an orange. Between the pain killers and probably not drinking enough, and despite taking stool softeners, I became constipated. I believe that's what caused the lingering pain. After I finally was able to, uh, move my bowels, I immediately felt better. My advice is to stay on top of the constipation. I'm grateful to have had the opportunity for the liver resection, despite my new progression. Very best wishes! Theresa
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Theresa, good to hear the resection seemed to work well for the area removed but it must be disappointed to hear about the new micromets. Local treatments are great but resection, ablation, Y90 and others don't prevent undiscovered micromets from growing elsewhere, which is frustrating. What other treatment(s) have you been taking since the resection?
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wow Theresa great recovery, sorry about the micro mets. Hope you are on something that kicks them out. Thanks Maaki for your response how are you doing with your treatment?
I am on Xeloda now to get shrinkage/response because they want to try to avoid micro mets growing. If successful I will get portal vein embolization to help the left liverlobe to grow in size before removing the whole right lobe.
Surgeon said it is only an emergency of the mind. But the waiting until Nov is the hardest and the Xeloda SE are a constant reminder of the cancer. 😒
But I keep the faith and try to stay active
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Wow, AlabamaDee, I haven't heard of removing the right lobe of the liver. I know that the left is sometimes removed but it is much smaller. I presume that is why your doctor is trying to grow the left side? To fill in where the right would otherwise be, to some extent?
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JFL, Yes, the new liver mets are very disappointing. My first liver met appeared while I was on Xeloda! After the resection I went on the G1 Therapeutics Oral SERD trial for 12 weeks. Unfortunately, the new liver mets showed up while on that trial. I have an ESR1 mutation (Y537S). I just started weekly Abraxane which is my first IV chemo. I'm HER2 low (IHC HER2 2+, FSH-), so was in the process of getting qualified for the Daichi DS8201a trials, but decided on Abraxane to hopefully get the liver mets under control. I also have a PIK3CA mutation, so Piqray could be an option either with Faslodex or Exemestane. Did you do weekly Abraxane? I used the Penguin cold caps for my first infusion and am wondering if I'll be able to keep it up with weekly infusions…
Alabama Dee, I hope that Xeloda will shrink your liver mets and make either surgery or SBRT easier and more effective. Many women have had excellent results with Xeloda and liver mets. My liver resection was laparoscopic which made the recovery much easier. I hope that your choice of local liver treatment will become clearer. It sounds like you have great access to care.
Best wishes to all! Theresa
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Teresa -Good thing you have options. piqray sounds promising. Glad you have that “in your bucket”. I hope the Abraxane works on the liver mets.
JFL- the 3 tumors are only in the right lobe but in different quadrants so they have to remove the whole right lobe. Fortunately the liver regenerates but you have to have enough remnant liver to survive. Thus the portal vein embolization to stop blood to the right lobe and grow the left lobe before surgery.
So glad my Xeloda SE’s are almost resolved on my week off. But they were so awful that the MO decided on dose reduction to 2000 mg day and 2000 mg night. Hoping the SE’s are not as painful this next cycle. I start again in 2 days.
Thanks for the support and info. Education is a strong tool in fighting cancer.
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Alabama, you are on a high dose of Xeloda! No wonder you are having side effects. I think 3,000 per day (1,500 twice a day) is most often the full dose although sometimes people take more.
Theresa, our profiles are similar. I too have that same ESRI Y537S mutation, a PIK3CA mutation and am HER2 low. Did you take the oral SERD alone? The DS 8201 sounds promising for HER2 low. I have been keeping my eye on that one as well. When I took Abraxane, I did it every 3 weeks. It was much more convenient not having to go weekly but the side effects are a bit more harsh as the dose is much higher than the weekly dose - it was harder to keep my hair even with cold caps and the neuropathy was a bit worse. I made it 6 months and then had to start wearing a wig, which I only recently stopped wearing after 1.5 years. However, for me, part of the issue was that I was between cold cap sizes on the DigniCap machine and had to wear one way too big for my head. The cap that fit my head well only covered half of my hairline. Strange, I wonder who was the scalp model to design these sizes when these caps were developed. They seem off. I think Penguin has a better fit. Preserving one's hair with cold caps on weekly Abraxane is much more doable but also harder to stomach the cold caps every week. I did that for 2 cycles (4 treatments of weekly Halaven). It was funny (and sad), another young woman with younger children and I shared the Dignicap cold cap machine which plugs into two caps and she told her girlfriend who would come with her that said she didn't mind coming because this was the only time she had to herself. I overheard her and realized that was also true for me - doing the cold cap was the only time I ever had to myself. So it was a love/hate relationship with that cold cap!
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JFL. I have a BFF who said she would pay for a CC for me if/ when I need one. Fortunately Gem/Carb does not cause hair loss. I will find out in November if it's working.
But, the rental of CC is sooo expensive. OMG why? And then sometimes doesn't work. Fru
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Grannax, I think it is expensive because it can be. Especially when there are not competitor products at the same hospital or local competitor hospitals. My hospital was the only one in the city for a long time to have an in-house cold cap system. When one of the other cancer centers in the city started offering one, my cancer center dropped the price. It started at $400 per use and was lowered to $300 per use. Still expensive though. However, there has always been a 10-time lifetime limit charge with Dignicap. I believe the manufacturer covers the rest after that. I exhausted that a few years ago on Abraxane. Any cold cap use is now free for me.
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Having tumor marker angst - most articles on CA15-3 say markers can go up in the first 4-6 weeks of treatment and they are not perfectly connected to regression
First treatment was faslodex and verzenio. Used chromagranin A as tumor marker for the neuroendocrine features with fluctuating results. Tumors grew slightly but showed some necrosis- no new tumors. That marker is super high but Advised that chromagranin A was not a good marker for treatment effectiveness so not taking it anymore
Now on week 7 of Xeloda cycles. Using CA15-3 which keeps creeping up. 😕CA15-3 levels
MDA
May 2 - 23.1
Aug 8 - 31.5
Local clinic
Aug 16 - 33.2
Aug 27 - 33.6
Sept 27 - 35.6
It's so hard to wait until mid Nov to get the next scan. I keep reminding myself to hang in there. Anyone else feel like this?
Dee
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Hi Ladies...I am new here in this thread and wanted some thoughts. I just found Tuesday that I have progressed on Ibrance/Let/Faslodex...I have a PET scheduled for tomorrow...results Monday and discuss treatment options. In the meantime I am in the process of making an appt with a IR at Hopkins.
According to the MRI tuesday I have 4 leisons in liver now. .8cm 1.7cm 2.1cm and .6cm I am not schooled up so-to-speak on the procedures but I do know that they said I am not a candidate for Y90. So I am going to ask about Microwave Ablation and TACE EDITED to add in my biggest interest is in CRYOBLATION. so if anyone has info, fill me in
Can you give me opinions on pros and cons?
Also I am wondering if I should go through biopsy again since Foundation One in April at diagnosis said sensitive to Ibrance...and that is not working? Can they do a biopsy while doing a procedure to some mets? Does anyone know that?
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Nicole. I don't know about the other procedures, just y90. I have heard good results about several. I think TACE is chemoembolization. It can have excellent results. Ablation has been used by several on this thread. I just don't know if liver BX can be done at the same time of procedures or not. Let us know about your visit w IR. My IR did my most recent BX using US. It was easy for me. Asleep during and no pain after.💞
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Nicole My next TX after failing IL was AA. Probably because I am diabetic, I had the worst SE ever and was only on it for six weeks. But, if you are not diabetic, you might have good results. After that, three months of X failed miserably. Sorry for your progression but there are so many other options to try. Now I'm on Gem/Carb. I know several who have gotten about two years on it. I won't know until late November. 💞
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Thanks Gran... I really am now interested in Cryoblation...so if anyone has info on that I welcome it
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Hello NicoleRod. When I had active multiple liver mets, my MO wanted to see if treatment worked first before any type of ablation. If I had gotten down to one met that was not going away, she was considering ablation of some type. But treatment worked.
Please let us know how your next appt goes and what is decided. You have had a tough time.
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Thanks Sandi...yea...I don't know what this new MO is going to say about me having / wanting a procedure done but I wanted to do that before the Ibrance when there was only 3 lesions and my MO then said what yours said "no lets wait and see what the Ibrance does"... we didn't do it now there are 4 not 3 tumors....So yea I really don't want to wait and see if the next one fails too then I have 5 or more... I mean I have a rapidly dividing cancer cells...they are not a slow grower...if they were I would probably feel different. I will definitely let you guys know tomorrow what she says.
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I am forever thankful that my MO suggested y90 for my liver full of active mets. That was back at the very beginning of my TX. I stayed on IL while I had the procedures. It gave me 18 months of inactive liver mets. Basically, nothing else has worked on my liver mets. Not, IL, AA or X. Now waiting to see what Gem/Carb is doing. Not a candidate for any local procedures now, that is until we see if Gem/Carb gets all of them smaller. If so, I'll 💞get reevaluated by my IR.
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Ok ..very overwhelmed right now. Just met with the Interventional Radiologist..he said I would be good for surgery to remove the tumors or for the cryoblation..but the cryo would need to be done now while the tumors are 2cm - 3cm once they reach 4cm they cant do cryoblation. Hes only seeing 3 tumors not 4 he sees 2 hemangiomas....he needs to talk to my oncologist to see what would be best depending on what treatment she wants to do. He also said there isn't much down time with cryo...and he can do it while on chemo and that he can get a biopsy of tumor if he does the cryo. He knows my appt is tomorrow with the oncologist at 1pm he is going to try and talk to her before that. He did say that 1 of the tumors is in an area that there would be a 10% he cannot reach it with cryo..its down like towards the bottom of my rib cage (that is where I always have the pain) I asked about surgery and ya know when the part of the liver grows back with cancer cells more tumors pop up..he said the area they would be taking is so small it will not even grow back. He said that occurs with bigger tumors/area. With surgery he said they can get all the tumors.
We are very overwhelmed and were not expecting this...we thought he was going to say get stable first. I would love for those of you that pray to please pray for my husband and I and my doctors. We want what ever God decides...please pray that the Lord opens the door to the correct procedure and gives the doctors a clear leading on what is best for me.
I will update tomorrow after we see oncologist
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praying nicolerod for Gods wisdom and for clear direction and for peace of mind.
just wondering if they mentioned SBRT as an option My MO wants me to consider it Vs surgery. but I am pretty sure I want surgery. I read where if you have liver resection then you have longer progression free survival. The hard part is recovery. Can they do your surgery laproscopic? have you talked to an oncology surgeon for his/her opinion?
I will be in your shoes in 1 month when I get my scans. IF the liver tumors shrink from Xeloda then we know my cancer responds to it and I am a surgery candidate(tumors did not shrink on verzenio and faslodex). I will return to Xeloda when I recover to prevent/ treat micro mets (I will need my whole right lobe removed and portal vein embolization first
🙏🏻🙏🏻🙏🏻 Dee
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You all know so much more about all these options than I do. I just went in on Tuesday to consult with an IR about Y90. I had no idea there were so many other options.
In any event, what I thought was going to be a Q&A session turned out far differently. Their panel of doctors had already reviewed my scans and determined that I was a good candidate for Y90. They had gone ahead and scheduled me for mapping on 11/7 and Y90 on 11/14 in case I was ok with it after having my questions answered. It all happened so quickly that my head was spinning. Their plan is to do the left lobe first since it is completely covered with tumor. They will then wait to evaluate the response before proceeding with the right lobe. They said I would probably need to do at least 3 Y90 procedures, possible 4. Gulp!I am overwhelmed, and a little freaked out. My husband is totally on board. One thing is true, though, and that is that I am on my 6th line of treatment. Nothing has worked and I got the “talk” from my MO about a month ago. Maybe a year left. So am I grasping at straws and putting myself through something that will only cause pain and suffering, or do I try every trick in the book and hope to buy more time?
Donna
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Go for it Donnabelle. I have not regretted decision to have my y90's . I would do it again in a heartbeat.💞
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Dear Nicole, if you feel strong (physically and emotionally), go for ablation. Lesser tumor burden = less mutations over time = better chances to heal. I am always for aggressive treatments, if we can. Chemotherapy can come after the cryoablation, if needed. Wish you all the best today, Saulius
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Thank you Saulius!!! The IR actually said I can be on chemo while getting the cryoblation that I do not need to have a delay in treatment....he actually asked about immunotherapy too...if my MO had mentioned it...Ironically enough I read an article from Bevjen(here) about how cryoblation is even more effective with immunotherapy so I am hoping he talked(s) to my MO about that...
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EDIT AT BOTTOM Dr. just called me at home...
I just got back. Wow..another great appointment with her. Thank you for all the prayers!!!! So surgery is out. She spoke to the IR and they agreed that Cryo would be best also because she wants the biopsy she said she needs to make sure I have not mutated to HER2+ or TNBC.....that was hard to hear...not gonna lie..my heart sank. Lot's of info though ..so here we go.
They spoke about Immunotherapy with the Cryo..there is a trial that is FDA approved for TNBC its Atezolizumab -(Tecentriq) you must be TNBC or have the gene PDL1. Turns out on my first Foundation One I did have the PDL1...but that alone wouldn't get me into the trial. (she also mentioned that many people that are HER2- have that PDL1 and it does NOT mean they have mutated to TNBC) however, if my status has GOD FORBID changed to TNBC then I could get in the trial and I probably could even if I am not TNBC with some finagling (she said) since I have that gene. BUT...it can take weeks or month or more to get into it and we cannot wait for that. She wants to start chemo asap. She will wait until after the cryo IF he can do that within 2 weeks...but if he can't get me in for a month or something then we will start now. If we start chemo before biopsy we will do Xeolda but said next line will be a Taxane... Scared.
For those "cure-ious" that have mentioned about possible ESR1 mutation..she said nope not likely because faslodex works on that and I was on Faslodex. She said that the fact that I didn't respond to Ibrance/Faslodex etc...tells her I am endocrine insensitive ;( again I am seeing TNBC... Praying I am wrong.
She is going to try and speak to the IR today or Monday and let me know what he says. She also wants me to get a consult to have ovaries out...she checked my hormones and feels my overies are still trying to and are possibly making estrogen..she wants to switch next month from Lupron to ughhh I forgot the name of it....???
Some positives...: 1. Now that I am off Ibrance my blood pressure is high again..so I jumped in ladies and asked if she would prescribe a blood pressure med....she said YES!!!! Lasinapril?....any indications I should know about?
2. I figured since I jumped in why not just go for it and asked for Metformin.....she said YES!!!!!
3. Drum Roll please... I figured ok I got nothing to lose so I asked how she felt about me getting IV Vit C on the weeks off of chemo...she said "I wont tell you, you can't...but I don't know that it will help...so if you want to do it on your own ok"...
So Yippy...now ...just praying my body cooperates ....*smirk*
Saulius...I think the ALA is working my bilirubin was 1.4!!!! She actually said my liver numbers look GREAT! So thats it...wait and see now.
Ok He wants me in for the cryo next week!!! His office will call to set up.
JUST went to MYCHART...got a date for procedure...lol
Oct 28th 1 week from Monday
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ooh, I b can write stuff so so long. Umm I'm a big fan y90 and of cyberknife.moatly because it works well on me. Chemo..not so much.
I'm doing a triple kind of controversial Tr was treatment through nagourney. d sad something else to throw in. I thought I as dead 3, months ago, ....so ya never know.
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A beautiful sunset...glad you got on here and glad to see you doing well enough to be here. Praying you feel better each day!
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Oh my eyesight and typing Is really going! How embarrassing, considering my mom is the grammar nazi. Atleast she doesn't see this .
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beautifulsunset...so good to get your uplifting news...can you tell us more about what therapy you're currently undergoing?
What did Nagourney managed to find that was not included in the original report?
My best wishes for continuous recovery and healing.
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So good to see you here Sunset. Glad to know you're still kicking. 💞
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