Liver mets: resection, ablation, SBRT, Y-90, anything else?
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How did the CT Simulation go?
>Z<
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I posted on the liver mets thread, oops
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Cross posting:)
Well I had my CT simulation in preparation for SBRT. Wasn't too bad other than the breathing nightmare. When they say, "Ok we are just going to watch your breathing. Some peoples diaphragms move too much. Just breath normally. We might have to put this clamp on you. " WHAT I couldn't even breathe right at all anymore! The radiologist came finally and I asked if I'm suppose to abdominal breathe or chest breathe, I was a mess. He said shallow upper chest. I survived but I'm abviously easily suggestible. I really can not wait to zap the liver mets. Just have to wait now for the physicist to do their planning.
I wish we had done this months ago!
Hugs to everyone...just breathe 😉
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Cross posting also ... this is probably the right thread for this discusssion.
Bstein - I am glad you got through that. I have to say their coaching strategy could be improved. If I have this done I will study breathing techniques for these procedures in advance. It's pretty well studied, I don't know why they put you on the spot like that. I would certainly panic in that situation ... which will not result in the optimal breathing technique.
Thank you for taking the time to bring us along on your procedure. Many people watching your experience. It seems like a great idea to zap liver mets, but then there is the actual procedure to get through. We all want to know what it is like,
>Z<
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Good morning , When I was first diagnosed, I had a breast tumor of 4cm and it had spread into 14/35 nodes and one small marble sized spot in my liver. At the time nothing else. I was told that day by my onc. I was going on ibrance after a shot a month to shut off my ovaries producing estrogen. Got one full doseage of AC before they even knew it was on my liver also, because they weren't worried about spreading at that time, because I was presenting so healthy with all that cancer inside me. I was at first taken off of AC chemo and went to see a oncology gyno surgeon for possible hysterectomy. He took one look at my records and was like uh. "We need to get that off of your live like yesterday" and I was one of the 6% that actually could have the liver resection procedure. I had it done on 6-21-16. I was in the hospital for a week. I had 36 staples on my stomach in a semi colon shape! I was on a fentanyl drip each day. They told me at the end of the operation I was NED, then I was off too 3 more AC chemo treatments, and abraxane treatments 9 of those. During that time period I guess the little buggers had always been present in my bones, just non detectable . Turned out after chemo the only place left with a small amount of cancer was the bone, pelvic area at least 4 micro spots that had just shown up. I was so upset ,but he looked at me and said. "Do you realize how much cancer you have just gotten rid of? He told me how lucky I was because he bone mets were treatable, and that my prognosis was excellent. So liver resection is very rare for stage four. It's not the standard of care they provide with many mets in many places. I was the anomaly. So far this medicine has been working well for me and I feel blessed. I wish it wasn't in my bone, but if I can keep it there, I'll be able to live 20 plus years he said. Everyone is different and let's all fight like women!! Because we are tough cookies!
Keeping you all in prayer. ~M~
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Micmei, thank you for your story! May you have those 20plus years! Why not 30!
There is a clinical trial looking at surgical ablation verses SBRT. NRG-BR002. You have to have oligometastisis with limited number. You only had one known liver met so I am glad you did surgical resectionit! Sounds painful though.
A couple people had the surgical ablation and someone was opened up but had more lesions then the inclusion criteria.
I'm doing SBRT and my first of 5 doses of radiation is April 5 at 1530. Day before my birthday! Happy birthday to me! So want this to start! It's been 2.5 weeks since my CT scan simulation they said two weeks so the extra days of waiting have been stressful...our minds can't help but think of the buggers spreading even though they have stayed put for 1.5 years...
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I'm having Y 90 done next week. The mapping will be on April 13th and Y 90 on April 17. My doc is Travis Van Meter and he has done more of these procedures than anyone in Texas. I have confidence in his skill but I worry some about how my body will respond. I've read here that it was pretty hard on some of you. I'd be interested in any advice you can give me.
Of course when I look at the big picture, it's almost a no-brainer for me to have the y90. It sounds like it will give me some more time.
Sorry my profile is not on here. I guess I have to admit "techy" is not my strong suit. I have 25 years of dx, tx and surgeries and four different dx. Right now, I'm dealing with dx of MBC in liver, lung and chest. Three months on ibrance and femara. And a PET that shows one of my liver mets is not responding and getting worse.
I had no idea I would be a candidate for Y 90. But, here I am. I'm grateful. I'll be checking to see what experiences you will share with me. Thanks.
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Grannax - Wishing you the best of luck and no side effects. Be careful not to project problems. I've heard of people who experienced fatigue as they recovered from this, but others do not. Visualize yourself health doing what you enjoy.
Thank you for taking the time to share your thoughts and experience. We are very interested as this is on the table as an option for several of us. Sounds like your doctor is the best out there, so we'd like to know how it is done when it is done right!
>Z<
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Grannax, I am sure you will breeze through the procedure with no problems. The mapping was outpatient and I was in and out in a couple of hours. Very easy with no issue afterwards. The procedure itself takes a bit longer and they will keep you for a few hours for observation. I did have some issues with fatigue and I was nauseous for a couple days. I was not prepared for it because I usually do not have any problems with nausea. My doctor had even said it is rare for his patients to experience what I did. Just plan on taking it easy for awhile so you can recover fully. Your doctor should also give you some medication to help. One of my tumors is now completely gone and the second has shrunk so I consider the procedure a success for me. I hope you have a great outcome also.
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Thank you Baby Ruth. What a great outcome. Thanks for writing, usually when I'm more prepared for something I do better. Did you have a second Y 90 for the other lobe? They say I will need two. I am 69 and my body doesn't breeze through stuff like it used to. But, I'm retired so I can take as much time as I need to recuperate.
I'm so thankful for the encouragement I've gotten here.
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Grannax2 good luck this week! I am glad you qualified for the procedure! I have just finished 3 of the 5 planned rounds of radiation (SBRT) to my three liver lesions. Pretty easy so far just slight nausea. I know it's progressive though so I'm prepared. It will be interesting to have my follow up CT June 28. Hoping to hear good things.
BabyRuth do they just follow you with 3 month CT scans? Has it continued to shrink
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I appreciate the recent post here, ladies. I'm planning on doing SIRT/Y90 when needed in the future. I recently consulted with a radiologist and am optimistic for great results. My current chemo is doing wonders and well tolerated so we're not messing with a good thing. Good to have this in my back pocket though. Expecting great results for you Granna!
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Thank you Kaaborg and Bstein. In regard to follow- up scans, I was told that it will take 6 months for the results to show up. He said that at 3 months the tumors might even appear bigger. I think that's because the ittium is still working? I'm not sure.
Kaaborg my husband used to say "if it ain't broke don't fix it".
Yes, feeling calm and ready to get started. Only two more " sleeps" as my grandchildren say.
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Thanks for this discussion, Everyone. I am waiting for my next scan. Like kaayborg, I have radioembolization in my pocket.
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I have been fighting liver mets for 4 1/2 years. . The key is to keep the tumors in check and to find the right medication for each individual that will work for them. I had 4 rounds of red devil and 4 rounds of taxotere and I was in remission for 1 year. it came back and I wanted surgery cause I only had 1 met. Onc said no, that it is to risky so I had the ablation done. tumor was about 2 inches big. radiologist said I got it all but they also told me that sometimes more will pop out. In 6 months when I had my pet scan it showed my original tumor grew back to 2 inches and I now had 2 little ones on the left lobe. Went in with one and came out with 3. Started a new chemo and everything was gone. 6 months go by and I do another pet scan and the original 2 inch tumor is back so I do a light chemo again. had to stop chemo because I small spot returned on my left breast so I had 30 rounds of radiation and then went back to chemo. when he scanned me the tumors grew, chemo wasn't working so he then put me on the ibrance and femara pill. Ibrance is a pill that just targets the tumor and breaks it down. I had two tumors at this point, 1 two inch and a small one. he scanned me at 3 months to make sure the pill was working and it was, tumors were shrinking. did a pet scan in july and the big tumor was gone and I only had 1 small one left. so I was feeling good and it was time for my pet scan in February. it came back with 4-to 6 small tumors and two large ones but the darn radiologist forgot to measure them so I told my onc to call him but instead he wanted an mri. it is more detailed of a test. well, needless to say, I really had 10 to 12 small tumors and my old tumor was now 3.97 inches big and the 1 small one that was left is 2inches big. so sometime between july of 2016 and February of this year the ibrance pill quit working and all hell broke lose in my liver. now I'm on this chemo called lexmpla every 21 days for 6 months. he will scan me at the 9 weeks mark to make sure it's working. it's like every time it comes back it's with a vengeance. They have a new chemo targeted drug that has been released by fda and should be hitting the market soon and hopefully I can try that one but my onc says it only work about 2 months longer than the ibrance pill did. he also said it depends on the person. mine worked 1 year. another patient it only worked for 6 months and another for 8 months. I'm getting a little desperate here. I know they can do a procedure where they inject chemo beads into the tumor and that can kill them but it's like getting 3 months of chemo at one time. a friend of mine had it done and it made her very sick. I hope everything works out for everyone. I was originally stage 1 idc, double mastectomy with reconstructive surgery.
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Congratulations on 4 1/2 years, Buras. May you have many, many more. It is sobering, indeed, to consider that for most of us, no treatment will be a permanent cure. Let us hope that one day soon there will be a real cure for each of us. We do what we can to try and be here when that time comes.
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Thanks for replying ShetlandPony, your right, I hope they will find a drug that can keep these tumors in check for a long time and even find a cure. I have a really good positive attitude but I do have to say that this last pet scan thru me for a loop. I had come to terms that I will always be going to the doctor and getting checked because it always come back in the liver but I didn't expect that. Now I do feel as though I'm blessed in the fact that in 4 1/2 year it hasn't spread to any other bone and any other organ. I can handle it, I take 1 day at a time, I don't think about the what if's and if God blesses me with another day I just deal with what that day brings me. It's going to be what he wants it to be anyway so I just put all of in his hands.
God Bless everyone!
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Exactly ladies...
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I wouldn't know about these other procedures if it wasn't for this board and me searching the internet and my friend who has done the Tace procedure. In order for me to do the tace or y90 I have to change oncologist and go to a different hospital about 35 miles away but I will do what I have too so I can have a better quality of life and live longer. My oncologist said he might put me on Xeloda. I know that it give some people bad side effects but I usually do real well with chemo and my Ibrance pill. Out of 3 chemo's I only missed 3 days of work so I was one of the fortunate ones.
ShetlandPony: Please let us know how you make out on your next scan. I hope everything is good for you and I wish that for everyone!
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Well, ladies I survived the first part of the Y90! It wasn't too bad. Except for some disconcerting miscommunication, it was pretty easy. I've had no pain or discomfort. On Monday I will have the the seeds implanted. They have to fly the Y90 in from Boston. He said they will arrive at 7AM on Monday. My doc will do the right lobe this time and the left in about a month.
I'm praying those tiny spheres will do their job and kill those bad guys in my liver. My doc said the mapping went well and he knows exactly where he'll put them. Yay for high tech science.
My daughter was with me all day and night Thursday. My son, the anesthesiologist, will be with me Monday. I love my kids. We are going to celebrate Easter together tomorrow. I get to see what the Easter Bunny brings to my grandchildren. I always get them confetti eggs so my yard will soon be a colorful mess.
I'll write again on Monday and let you know how it went.
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Congratulations Grannax!
What do they actually do to map your liver? Why were you in the hospital over night? Details please!
>Z<
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I have developed ascites. What experience do others have with this? Have bone and liver mets. Bad reactions n to red devil. Starting Halaven.
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It was out-patient. I had to be there at 12:30PM and the mapping was at. 2:30PM. I think they took me to the cath lab at about 3,. They gave me conscious sedation. I think versed and fentanyl. Maybe something else, too. But I was not all the way out .
During the mapping they go through the femoral artery to the hepatic vein to visualize the blood vessels in my liver. Sometimes, they re-direct the blood supply to make sure it goes where they want it to. He did not tell me what he did with mine. Some patients like to watch on the screen to see their actual procedure. I voted NO on that idea so they turned the screen away so I did not have to see it. But, I do remember things that happened during the procedure. It did not hurt or feel uncomfortable. I think it took about an hour.
I had to lay still for 3 hours. But it was doable. They did not have to hold pressure on the femoral artery because of a new patch that seals the artery.
He said, to him, the mapping takes the longest. Now that he has the map "in his head" , he knows exactly what he's doing on Monday. So he said it won't take as long. I was surprised about that. Monday will be outpatient, too.
I got home about 7:30PM. There are a few precautions like don't take a tub bath but a shower is fine. I took the bandage off and just put a bandaid on.
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Grannax2-Glad your mapping procedure went so smoothly for you. Sounds like you are ready for the next step on Monday. Wishing you much success and a easy recovery.
I did the procedure one time. I only had the two tumors and I considered it a success after the first time and still do. He did say that I can come back at anytime and do the procedure again if needed. I tried chemo before I did the Y90 and had no success in shrinking the tumors at all. My MO and I discussed ablation and the Y90 and I decided after consultation with the internal radiologist to do the Y90. I have just recently moved to having scans every 6 months instead of every 3. I still continue with Herceptin, perjeta, and faslodex.
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Babyruth I hope I have results as good as you had. I don't know how many I have but they are in both lobes. I know there is one that was really active even after three months on Ibrance. He's the bad guy my doc is going to zap on Monday. Yay for Y-90.
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Thank you guys. This is very helpful for people considering this treatment.
>Z<
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I want to know everything about this and plan to go back and start from the beginning then ask my doctor if this is anything possible for me. Seems like a lot more women with more than a few liver spots are getting this which is very hopeful to me. Do the seeds cause any SE's afterward? But if they work who cares....
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The Y90 is generally used if there are a small amount of tumors involved in the liver. Most MO's do not recommend it if your cancer has already spread elsewhere. It seems to be getting more common to use this procedure so those guidelines may change. My internal radiologist was also able to put the catheter in through my wrist instead of my groin which meant I did not have to lie flat for 3 to 4 hours after the procedure.
The beads and radio embolization material still show up on my scans. As with any procedure there are risks and remember you are putting radio active filled beads into your body. It is scary if you think about it but that is why the mapping is a very important and thorough step before the actual procedure. They do not want to damage any normal tissue.
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Grannax, glads step 1 went well. I appreciate you sharing your journey with this.
Artist, I have loads of tumors and Y90 is a great option (ablation is not with so many tumors). It is important to have good liver function, however, so this is not a treatment to try when you're in crisis mode. You can also still have it with other mets, however, this has to balanced out with potential effects of stopping a systemic treatment for a month or so and risking progression of other mets. Also, the potential to stay off chemo for the average of 6-12 mos. (or more, always hoping for more) afterward, depending on effectiveness, is lesser. As for SEs, there is nothing of big concern long-term, however, they do tell you about some very rare but serious risks where spheres make their way to other organs and cause lots of problems. This is what the mapping aims to prevent and it is possible, I think they said about 5% of the time, that after mapping you will not be able to have the procedure if you look to be at risk for this and they are not able to redirect blood flow. Definitely ask about it.
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Grannax, you will be home from the first radio procedure by now. Thinking of you. Thank you so much for the mapping report. It helps me feel less afraid of doing radioembolization should that be recommended. My scan is next week, and we will see what my new drug combo has or hasn't done. If my scan shows that my meds are not working, I'm ready to do it.
BabyRuth, that's great, and thank you for the encouraging report. Does your liver show NEAD or stable now?
I heard similar things to what kaayborg says from my radiologist. That the treatment is for those with liver-only or liver-dominant disease, who are otherwise healthy and not in crisis. There is a window of opportunity. There can be multiple mets in both lobes. They do one lobe at a time. It can be seen as buying time just as a chemo would. One more weapon.
Artist, you will probably have to consult at a major cancer center.
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