Liver mets: resection, ablation, SBRT, Y-90, anything else?
Comments
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Babs- wonderful news!!
>Z<
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Babs- So glad you were able to get this treatment! Hoping it is wildly helpful so you can enjoy the next visit with Anton even mor
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babs. Work?!? Really? I had hoped you would get a little time off. I guess it could not be avoided. I hope you're doing ok at your job, maybe they'll let you of early?.
Your first three days, post y90, sound normal. Queasy, tired, loss of appetite, I think it took about a week for me to want to go anywhere. I also had some severe pain in my right shoulder, it doesn't sound like you had that SE. Believe it or not, I don't remember much about it at one year out.💞
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Z I hope you're back home and get to rest a little. I'm wishing some TLC for you. But, I think your mind never rests. Amplifications float through your brain day and night looking for the best drug to kill your mets. No rest for you.😢
When do you expect to have another scan to see if all your TX in Japan is helping? I'm hoping you can feel response. You know your body so well, your instincts seem to tell you if you're getting better or worse.💞
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Grannax - I am back and exhausted. On Saturday, the day I left Japan, I developed a gastric condition that causes me a lot of pain. I feel like I have done a 100 situps. I have a lot of burping and flatulence along with diarrhea so I am reasonably confident I am dealing with some kind of gastric distress and not cancer, but of course it is on my mind. In any case, I don't feel better, in some ways, because of this gastric condition . I agree that how I feel would be an important indication, but I have confusing signals at the moment.
Blood work should come back soon and provide an early indication of where things are headed.
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Z hope you get this gastric situation under control and quickly!
So went to work. In the am I felt really spacey but by the afternoon I was aok. Got a lot done. Still not a great appetite but I am forcing myself to eat as my clothes are swimming on me lately. Stomach is gurgling and I am passing gas. No shoulder issue as yet. Tomorrow should be easier!
Bab
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babs you are amazing, I would not have been able to work at 3 days out. You win the y90 crown!👑.
Z I can sure understand how difficult it would be to discern what is causing what right now.I'm glad your labs will hopefully be an indicator.💞
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Babs, how many days did you/did the IR recommend you taking off work?
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JFL. I had the y 90 Friday am and was back at work Monday AM. I didn’t take any time off other than the dayof the procedure
Bab
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Holy cow, Babs. You never cease to amaze me! I would tell you to take it easy and not overdo things, but I don't think you have that in you. Lol. I hope you continue to do well. I am cheering for you.
Hugs and prayers from, Lynne
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Did you see how babs avoided saying how many days the doc told her to take off? My IR said most people take off one or two weeks JFL. I'm telling you babs is the queen of y90s.👑💞
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I have to thank you all for your stories and suggestions, otherwise I never would have thought to talk to IR - or done it on my own when MO was hesitant. I had my IR consult today, expecting to learn more about Y-90. The IR walked in and had reviewed my case already and recommended a bland embolization followed the next day by ablation. They can get me in on the 26th! So here I go!
I never expected that as an option, and am just excited to have a targeted therapy available
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What is bland mobilization and ablation? I don't know anything about those two procedures. Jamiemarie. I'm glad you are a candidate and can get it done soon.
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Hi Grannax, I hadnt heard about the embolization either. Here is a good overview (much better than I can explain!): https://prd-medweb-cdn.s3.amazonaws.com/documents/radiology/files/HC%201619%20Bland%20Embolization.pdf it has an added benefit of apparently making the tumors more visible for when ablation is done. He indicated that in his opinion, studies are starting to point to this treatment being more effective than TACE. Although he mentioned TACE is another option available.
I’ll have the embolization done the first day, they’ll keep me overnight in the hospital, and then have the ablation the second day. The doctor described the ablation as basically “burning off” the tumors. The ablation is under general anesthesia, but once done, I should be able to go home that same day.
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I’m hardly the queen of the y90. My IR actually never told me how many days to take off I told her I was resting over the weekend and going back to work and she never said a thing other than I would probably still feel tired. I do but, work keeps me focused! Monday my little love comes to visit from Paris. He got his American passport today!!!
bab
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Babs and everyone - did you consider TACE? TACE is when you infuse the liver mets with chemo rather than radiation. Similar procedure with a different technology. If you considered TACE, why did you choose Y90.
>Z<
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I will probably do the same thing as Babs - procedure on a Friday, back to work Monday. Good to know it can be done! Whether it should be done . . . different story.
Jamiemarie, thanks for sharing. I also had not heard of a bland embolization or a combo embolization procedure followed by an ablation procedure the next day. Do you have a small number of liver mets? Did the IR say why he/she recommended the bland embolization/ablation rather than Y90 for you?
Babs, adorable your grandson received his passport! The American flag adds a bit of extra flair! I recall obtaining a passport for my son when he was that little. They lay the babies down to take their passport pic because they can't sit up by themselves properly to take the photo! You must be so looking forward to his visit. Beautiful little boy.
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Jamiemarie - your post inspires me because I’ve been thinking about pursuing y90 or some type of radiation treatment but haven’t taken any steps yet. My MO did not think it was an option so it is something I’m going to need to pursue on my own. Knowing that you did it and got good information gives me the confidence to proceed. Now I am committed to look into this as soon as I get back from my vacation in Hawaii. It’s been attracting me ever since I first heard about it based on the good results from many on this thread and the results I saw my father get when he chose radiation seedingafter beanspresented with various options for a different type of cancer many years ago and he has been cancer free ever since.
Thanks to all for sharing your experiences. For those who were not referred by your MO’s, how did you go about identifying a good IR? I am in the San Francisco Bay area .
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Z I asked my mo about TACE and Y 90. She said they were getting better results with Y 90 so that’s why we went for that!
Babs
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Okay, I won't call you 👑 babs anymore. I'm just sayin' I would not have made it through a day of work at 3 days post y90. So, I think anyone who can do what you did is amazing. Your grandson is adorable and will bring you such joy when he come to visit.
JFL. Looks like you will follow babs amazing example of what can be done. I guess I need to remember I'm quite a few years older than you two, 70, and retired. I was really proud of myself for being able to drive down to see my granddaughter in a choir performance at two weeks out.
Z. TACE was never mentioned, by MO or IR. I didn't know enough about it to even ask.
I go to MO appointment tomorrow. I'm hoping we can discuss F1 report a little. Especially the ESER1 alteration. I've had 8 ,weeks to understand it better, so know I think I will be able to understand her suggestions. The more. I read, it seems like at progression she will change my TX to faslodex rand Ibrance, probably.
My next scan will probably be April.
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Liwi, Most IR"S will not make an appointment without a Dr.s referral. You can find your own IR and then tell her to refer you to him. Just tell her it's going to be informative only. But she can not stop you from doing the procedure. Mine kept on and on and giving me bad stories, trying to get me to change my mind. But it was and is your choice.
Robin
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Grannax I’m only a little younger than you. Will be 69 this year. When I was a kid my grandmother always said I had a motor in my body cause I was always doing something active. I’m much older and slower but do like to keep busy. I’ve dialed down activities way too much. Work and family are where I exert my energy now. We used to go out 3-5 nights per week. Now 1 is a push! Oh well!
Bab
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My sister had a motor like you, Mom called her jumping Jacki even before she was born. Mom claimed Jacki broke two of her ribs! She can still run circles around me, even though she says she's slowing down because of some health issues. Anyway, I don't think i got that gene. 💞
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Babs, what a sweetie your grandson is!
JFL, I have two main liver tumors that show up on my CTs. When I have had MRIs, its more like 8-9. It seems we’re just focusing on those that are on the CT.
I really didnt ask as many questions as I should have, I was surprised by everything. The doctoral fellow who came in before the doctor was discussing Y-90, and then he came in and had something else in mind! He said he thought this process would have the least impact on my liver. He did mention that all three options (TACE, ablation, and Y-90) would still be on the table in the future too again when/if needed.
Liwi, definitely go for it! I mentioned Y-90 to MO and my previous MO and both were hesitant, if not downright discouraging. But the ladies here inspired me to want to learn more. I had to meetwith IR for a recent liver biopsy and while there asked to schedule a consult and they were happy to. I was lucky though in that the head of IR at my hospital specializes in liver therapies.
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I had my IR appointment today and it went well! I booked my mapping for 4/2 and Y90 for 4/9. If my insurance approves the procedure quickly, I will try to move those dates up to a sooner date. I didn't go with an MO referral and found him directly myself at a location where I have never been treated. However, my MO knew I was going to a consult this week at another facility. Before I left today's appointment, the IR called my MO and after some discussion, they are both on board with the plan.
The IR recommended Y90 on my left lobe, followed by a possible partial right lobe Y90. He didn't think he wanted to do the whole right lobe as there is a good sized portion that appears to be "healthy" tissue. I asked if it mattered that I have diffuse mets for Y90 and he said no. He mentioned that his preferred scan to determine if Y90 works is PET-CT, as often times, the tumors don't shrink much if at all after Y90 but they will become metabolically inactive. He said it takes at least 2-3 months to see any results as it is not immediate.
I asked about chemoablation/TACE and whether there were any additional options for someone like me with innumerable mets. He said that Y90 and chemoablation/TACE are the only two options given my profile and that he has seen better results with Y90 than chemoablation. I also asked if there was anything going on with immunotherapy beyond the research stage and he mentioned the abscopal effect being the primary focus/holy grail of immunotherapy but that it is all still in the early research phase.
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Grannax, Babs, I didn't have the option of a Friday appointment and am scheduled for a Monday. Need to figure out how much time I will need off and whether I will be able to work at home for any of that time.
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JFL - Thanks very much for the update. Are your liver markers normal? Alk Phos, ALT, etc.
>Z<
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JFL. I stayed in bed Saturday and Sunday after my Y 90 because I could. Not sure if I did it on a weekday that I would have done that but remember they say not to be under 3’ away from other people for 3 days cause you’re radioactive. And you can’t be near children or pregnant women for 3 days.
Bab
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Congrats JFL, thats so exciting!
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JFL I'm sure you could work from home after the first 3 days. I guess it just depends on how your body reacts. For the mapping, I doubt you'll need any days off.
Brave, self advocating ladies on this thread. 👏💞
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