Liver mets: resection, ablation, SBRT, Y-90, anything else?
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It is shocking that the three of us did not communicate better sooner. The email conversation started with my asking if my onc thought it was worth doing Y90 if it delayed my entering the trial. She thought it would not delay, but then the miscommunication came out. I had been unsatisfied with the idea of only zapping one, especially after an MRI showed more than two.
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Shetland, sounds like it was the right move to hold off for now. I haven't heard of Y90 being performed on only one met, or even two. I had thought it was always given on a larger tumor load. However, with your stent, you have some additional considerations/risks to balance.
I am thinking I may need to schedule a consult to have my second Y90 some time in the near future . . . .
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Shetland,
Your last sentence in your post -- how could we know? -- is just so true. No one can predict how any of us will respond to whatever treatment. We just make our best decision based upon what we know and can find out. So don't second guess yourself -- you have this new trial to look forward to. Good luck on starting with that. And yes, you can always revisit local liver treatments if and when it seems appropriate.
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Shetland You couldn't have known. Your risk of infection is something that most of us haven't had prior to our y90s. I know you don't want to go through all that again, so maybe it's for the best. Hope the trial works for you with few SE.
JFL. When is your next scan?💞
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Shetland-So sorry for the treatment confusion but now you have a plan. BTW riding the horses on the beach was epic!
My local MO is positive that I will not qualify for ESR1 study and since they never called me back I feel like that door closed.
so I start faslodex shots today (no pills😏) and afinitor as soon as the specialty pharmacy sends it. I also put in for octreotide for the Neuroendocrine features. Waiting to see if I get approved.
The MDA MO called me to discuss it and she is on board. I feel so blessed to have a doctor follow up personally and I told her so. She would have preferred one more doxil but she understands my thoughts/fears. She also followed up on a PTEN trial but I don't qualify for it. Seems the tissue stained positive but it was negative in the molecular study of the tissue.
So- new plan, new hopes. Go back in April for scans andfollow ups with Y-90 IR doc and MO
Dee
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Grannax, I usually have scans every 3 months or so, sometimes I will stretch it out a month or so longer if blood work looks good. I am "due" in about 3 weeks. I have been on Gemzar now over 2 months. My tumor markers have consistently gone down since I started it. My liver enzymes and alkaline phosphatase are a consistent roller coaster. They drop down on my 2 weeks off, then jump up my 2nd week of the 2 weeks on, 1 week off schedule. Strange. Large swing in a 1-week time span. Did you have up and down liver enzymes on Gemzar? My MO calls it "transient" elevation and believes it is caused by Gemzar.
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JFL. My Alk phos went up to top of normal when I was on gemzar. But the other ones didn't change. My tumor markers never fluctuated during all my years with BC/MBC. I think she does them occasionally but never mentions them. My most recent lab showed Alk phos a little higher but I don't remember the number.
Dee. I'm glad you have that Dr, too. Not many of us get to have MOs like that. My favorite MO was at MDA, too. It was back in 2000-2002, Dr. Cristofanilli. He's at Northwestern now. It makes all the difference to have a personal connection like you have.
I looked at the ESR1 study. I do think I would qualify but there are no sites in Texas. Lasofoxofine? Or something like that. The Elaine study? 💞
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grannex- I am looking into help getting to my trial in CA. I will make it work somehow but it adds up.
The hispital associated with my study have resources and I reached out to the American Cancer Society as well. They have sone resources as well. Please Reach out for hrr Er Lo before you say you can’t do a study due to location.
I know how hard it is financially, mentally, and physically, it still might be an option.
Oh my study involves multiple hospitals one in c/, one in tc, and one in ,my o think snd tgg HT d one in ZnY is in charge. So it’s possible the studies you are interested might be avaialsbke closer to hone as well.
I am really hoping you can find something that would work for you.
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That's interesting, LFF. It might be worth checking into. Also, the Foundation Say Yes to Hope, sometimes helps financially. It's the one that I've been a part of for over a year. 💞
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We have been discussing y90, etc on liver mets thread. There's so much more on this thread, I wanted to encourage more comments here.
I'm still doing fine since my second round of y90's but I haven't had a scan yet. I see my MO on March 9 but won't have my PET until March 20 ( 3 months post y90). Seems like a long time to wait but that's what my IR says is best. UGH 💞
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Hi Ladies! I’m due to receive the first of two Y90 treatments to the liver next week. I was wondering if anyone has any helpful advice as to what I should expect after the treatments. From my reading, it looks like nausea and fatigue are the biggest hurdles. For anyone who had Y90, were there any unanticipated side effects? How was your pain level?
I had the mapping procedure completed already and this weird pain in the middle of my chest started two days later. I’m not sure if it’s just the worst heartburn ever or a reaction to the coils implanted to block off other arteries or something else entirely. Has anyone experienced that after mapping?
Thank you for any and all input. I greatly appreciate the support I have received on this site. I don’t post often but I do plan to post my experiences with Y90 on this thread, with the hope that it might help others in the future.
Hope you all are having a wonderful day!
-KC
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Kc54321. I had an unexpected SE with my first y90. I had sharp pain in my right shoulder blade and joint. Turns out its referred pain from the liver. It especially hurt when I took a deep breath. It lasted only one day. With my second set of y90s I didn't have that SE.
I also think that any time there is a procedure on the liver, the liver gets mad. It will complain and you may feel discomfort in the liver area, nothing horrible or long lasting. At least that his been my experience.
Be sure to take precautions to prevent severe constipation from anesthesia and pain meds. Yes, fatigue is pretty common but not long lasting. I also had lack of appetite and nothing tasted good but no vomiting.
In my opinion the good results far out way the SE. Good luck to you. Keep us posted.💞
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I hope your Y90 goes well, Kc! I don't recall having any coils implanted at any time . . . . or at least no one mentioned that. I would recommend to take steroids if offered. I am anti-steroids in general and refuse them with chemo but did agree to 5 days of prednisone after Y90 and am glad I did. It gives one energy so that you are not completely wiped out for the first week and can help prevent gastritis/ulcers from developing from the Y90. Once the prednisone 5-day course is over, my energy levels did drop for a week - 10 days. I found I was much more wiped out when I had the right lobe done than the left. The right lobe is so much bigger than the left and I had a larger tumor load in that side at the time. I noticed that when I ate the few days after the procedure, I felt like the food just sat in my stomach for hours and hours and I felt overly full. However, I learned though trial and error that getting up and walking around helped with that. Play it by ear on how you feel and take it day by day. You will do great!
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KC
I am 3 weeks out from my Y-90 and bland embolization. I am also on treatment of Afinitor, falzodex, octreotide.
After the procedure, I took the medrol pack and was glad I did. It helped me feel “normal” energy while my body healedI had minor liver area discomfort for the first two weeks but now I am fine. I was surprised at how well I have managed. I still have some fatigue but it is probably the meds. I don’t work outside the home so I rest when need.
hoping your procedure goes well and it punches cancer down.
Dee
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Dee, good to hear from you and glad your post Y90 experience is going well.
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Grannax, Dee, JFL-thank you for your words of wisdom! I also hate taking steroids but after reading your posts, I'm definitely going to take them. I have one very large met in the right lobe, 14cm to be more precise. I suspect they'll have to use a lot of microspheres to attack the “monster met". I'm currently on Xeloda, and hope with Y90, I'll see some decrease in the size of monster met, which has been with me since my initial de novo diagnosis 2.5 years ago.
Dee - glad to hear you're doing so well after Y90 and I hope it's destroying all liver Mets.
Again, thank you so much for sharing your experiences. Enjoy the day!
-K
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Kc I'm sure it will make a big difference in your monster met. In fact, I think it will DIE. I call my liver mets "liver monsters". Here's to no more liver monsters for you!💞
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Just got my dotatate PET scan results. It lit up which is good and qualifies me for a clinical trial for the Neuroendocrine features.
Looks like the y-90 worked as those 2 tumors in the right lobe are "barely visible". The tumor in the left lobe appears stable at 4.2 cm, but must be able to get blood even though it had a bland embolization because it lit up. The 3-4 mm diffuse mets did not light up or show up. This is a new scan for my local clinic And they did not compare it to my January MRI & CT at MDA so I need to see what they say about it.
A couple liver numbers are high but that's ok. WBC and ANC are still low so I'm getting the booster shot.
Staying on current meds until I go to Houston in April. Praise God for a good report.
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Dee. Yay y90.
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Dotatate PET ? What is it for, I never heard of it. I have admit most of your post is kind of Greek to me.
I guess that type of scan is used to detect/ prove neuroendocrine features but how did you know to pursue this trial? How would I find out if I had neuroendocrine features. No one has mentioned that to me. Is there another test you had done that indicated you had it? Dee, anything else you can explain about this I would appreciate.
I know you'll feel better when the two scans can be compared. I wish the one in your left lobe had not lit up. Very happy for you about the right lobe.
I'm almost through with my waiting game for my PET. Only nine more days. It's on a Friday which means I'll be lucky to get the results on Monday. Plus, I found out on Monday that my My MO is going to be gone for six weeks?!?!? Who does that? She said if my PET shows progression I will have to see another MO to start a different TX?!?! That news has me freaked out! I'm just now trusting this MO. I'm not OK with this plan of having another MO at a very critical time for me. UGH She is coming back, at least she had me set up an appointment for 3 months, June 9.
I'm expecting my liver to look good, post y90, but I'm worried about my lung and mediastinal node. I'm not going to be at all surprised if they show more uptake and new mets. Faslodex shots alone are just not strong enough to keep them stable for six months. That's my gut feeling, I hope I'm wrong.💞
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grannax2
Breast cancer with Neuroendocrine features will show up in pathology as a particular structure of cells and stain positive in the Immunohistochemical testing for synaptophysin. but is rare-about 5%. Your path report would have shown it. Both the original breast tumors and the met liver tumors had this feature on my reports.
There is a targeted therapy that binds to the somatostatin receptors of the Neuroendocrine. Peptide receptor radionuclide therapy has been used with some success in Europe for my type cancer. It is called Lutathera and only FDA approved for specific gut Neuroendocrine cancers. but there is a trial of a similar treatment that said they would not exclude Breast cancer origin. It is out of pocket and very expensive at Excel diagnostics in Houston. I have submitted all my paperwork for this trial but continue to look for another trial that is not as expensive
I am also looking into the “Right to Try” bill in Texas to see if I can get Lutathera at MD Anderson. Or possibly get “expanded access” to a clinical trial.
Right now I’m tickled that the Y90 worked and it’s possible my systemic meds are working too. My IR doc is the one who motivated me to try PRRT again. He said I should consider going to Europe which is code for you are running out of options.
hope this helps.
dee
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Grannax, maybe your MO is having some kind of surgery? 6 weeks seems to be a common length of time to be off work for medical procedures
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AlabamaD,
I was told after my initial MBC biopsy in 2015, that my tumors have neuroendocrine features, so I'm going to file away your information, for possible future use. Best of luck!!!
Katty
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I don't remember seeing that on my Pathology. No one has mentioned it to me, so I assume your TX is not an option for me.
Yes, I'm thinking the same thing about my MO. It must be something serious. I'm using my empathy side now, not so self centered. I still don't know what I'll do when/ if the PET shows progression. I'm still barely functioning, I'm so consumed with trying to rationalize my situation. I find myself not being able to focus on much else. I guess I could laugh at myself and say I'm obsessing. I know I'm not thinking straight or able to concentrate. I'm so distracted that it feels like my brain has stopped working, brain fog at the very least. A day in the life, right?
I've had so much trauma during MO changes, my trust cannot be broken again, can it? I'm not strong enough to go through that again. 💞
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Hi liver metsters
So interesting to follow this thread. my MO is really opposed to Y90, frankly I think because he doesn't know much about it. His argument is that they will zap individual mets effectively but not solve the systemic issue and might even encourage the cancer to take up residence somewhere else, like when you try to get rid of a wasps nest. Maybe that's because I have mets to lymph nodes in my chest and several parts of my skeleton while some of you only seem to have liver mets. Maybe its because I so far still have good liver function. Anyway I found a doctor in Sweden (by looking who published on google scholar!) and she is willing to consult. Meanwhile just started Doxil and have ordered the Foundation One genetic panel. it will be interesting to follow all of you!
Today I am missing my daughter's 14th birthday because a few kids at her school have corona, so she is staying with her dad a few extra days. She is taking it in stride but it's hard to accept being in a "risk group." Stay healthy everyone!
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arrosin Good for you getting a consult. I have active mets in my lung and mediastinal lymph node plus liver. Lots of MOs think the same way yours does. Basically, most of that is is true except the part that it won't help at all. I'm proof that is not true and statistics are showing I'm not the exception.
The part about it encouraging mets to occur in other organs, I've never heard before.
This Corona virus is causing so many people to miss so much. Sad you have to miss your daughter's birthday. 💞
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arolsson, I think it is a common reaction to nix the idea of Y90 when MOs are not educated about it. Even IRs, who perform Y90, do that when they don’t have experience performing it in BC cases. My MO was in that camp but came around over about 6 months time and is now a big supporter. He spoke to another BC MO who used it and did some research. I would disagree it causes cancer elsewhere although it doesn’t stop cancer elsewhere. Even in the liver, if only treats active tumors. Inactive tumors remain undetected and Y90 doesn’t prevent new tumors from forming in other areas. However, for someone who always feels 2 steps behind one’s liver mets, it can be a game changer. I had one 2 years ago and have a 2nd Y90 as a potential future treatment at some point
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Excellent y90 news. It worked again! The report actually says liver mets are "resolved". I'm thrilled. JFL.good news for you if you need a second set.
Also, Faslodex worked on my lung and chest mets! Uptake was much less in all the mets. I'm pleasantly surprised about that news. So for me the genomic testing suggestion for ESR1 has proven to be effective.
I couldn't be happier and hope to have a long run from the combination of systemic and local TX. 💞
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grannax
That is awesome news!! So happy for you. You are doing great and an inspiration.
I’m going to request my regular PET scan here at home. It was scheduled at MDA for the week after Easter, but I don’t want to travel right now. I need it to compare to the dotatate Pet scan to see what happened to all the little liver spots that were on the MRI before y-90 and new meds, but not the dotatate. I also need it before they will consider me for the trial I am looking at.
Hoping it is the meds working!!! I know the Y-90 worked on the 2 larger tumors Because they were “barely visible”.
I hate that Covid is interfering with our treatments.
Best to everyone during this trying time.
Dee
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this is fantastic news!!! Just awesome! Congratulations! It will be Y90 for me someday.....you give me hope.
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