Liver mets: resection, ablation, SBRT, Y-90, anything else?
Comments
-
Just checking in since I am not on here much currently. I always come back after I pass another milestone which I just did. December 1st was my 4 year anniversary of having the Y90 procedure. It was December 1st, 2015. I will never forget that date or the ones that followed. I was scared and felt that the Y90 was my last option as chemo never seemed to shrink my tumors. Within 6 months I was NED and have somehow stayed that way since. I do not take any day for granted and I realize it can change at any moment. My prayers are with you ladies always.
Grannax2- You always inspire me and I was so sorry to see of your progression but I am amazed at your kick ass attitude. I truly hope you find success again with your second time going through the Y90 process.
0 -
Thanks BabyRuth it's good to hear form you and be reminded of your four years NED. Now, that's inspiring.
Yes, I've felt the nervousness this time more than the first time. I'm three weeks out from my right lobe y90. Tomorrow I'll have labs to check my liver function. If they are OK then the left lobe will be scheduled soon. I'm ready to get this over with.
I'll probably start some sort of chemo in January for my other mets.
I tried to help my brother lift a heavy trunk. I guess I pulled some muscles or something. I'm hurting when I breathe, in the right shoulder area. I hope I didn't mess up anything in regard to my liver.
0 -
😢my tumors are still progressing after 3.5 months on high dose Xeloda. the first line of verzineo and faslodex also saw progression. Both lines slowed the growth but did not achieve control or shrinkage
These 3 stubborn liver tumors are frustrating. Had an mri last week and it found a bunch of smaller liver mets that the ct missed. MO believes they have been there awhile.
The next (3rd) line is doxil- my cancer has not seen an anthracycline.
I also will be tested/mapping for y-90 in Jan. Hope I qualify. I know it is not a cure but it should lower the tumor burden. I keep up with you all on y-90 and I am hopeful.
SBRT is out because of size and number of mets. But they are all still in the right lobe so if doxil works I may still qualify for resection.I had a biopsy last week to get a molecular profile. Waiting to hear back. I had a new port put in yesterday. 1st port 6 year’s ago caused a dvt so they put me on low dose elequis blood thinner this time and changed sides. but that is my Lymphadema side but hopefully no issues as I am very vigilant to wear my sleeve and do pneumatic compression
The battle is hard but I am in it and plan to win it. Heading over to the doxil thread. But will stay tuned here for y-90 support
Dee
0 -
Dear AlabamaDee, you did not discuss a taxane? Taxanes are harsh but very effective. Sure, it'd be better to benefit from Doxil...
0 -
Dee I'm glad you have everything scheduled. I found out recently that we can stay on some chemotherapy while having y90. But, in your case you might not need to, just another question for your IR.
I'm three weeks out from my second round of y90s, first ones in 2017.My left lobe should be scheduled soon. It takes months to know the results of y90 but I'm hopeful it will cause my mets to be inactive for awhile.💞
0 -
JFL. Do you know yet what chemo you will be on next? When will you have an IR consult?
0 -
Cross posted from Liver Mets:
Grannax,
Good luck in getting your next Y90 set up. Hope the labs were all good. As you say, when you have a plan, things will feel better.
I attended my first session of a metastatic breast cancer support group last evening. It was fascinating hearing the different things that people have been told by their doctors. One thing that struck me was this woman who has been heavily treated whose MO told her that you can only have interventional radiology treatments if you have only ONE liver lesion. We talked briefly after the meeting, and she is now going to look into Y90 because now she has multiple lesions. I told her she should at least go for the consult, whether or not her MO is supportive. I would not have known about any of these local treatments before I started reading about them in this forum. So I'm grateful to you, Grannax, and to all of the others who educated me enough so that I knew the right questions to ask.
Tomorrow I am having my 6 month MRI after my microwave ablation to one lesion on my liver (the largest -- 2 cm) and afterwards, I will meet with the IR who did that ablation to discuss where we are with the liver lesions and what we should do moving forward -- if we should do more localized treatment. My tumor markers are coming down on Ibrance/Fulvestrant but I'm fairly certain that I will still show some liver lesions. The question is how many and how large.
0 -
Grannax, I started my next line and am on Gemzar as a mono therapy. I have had 2 treatments/1 round and will be starting round 2 in Friday. I know you were just on Gem/Carbo without great results. I can’t recall - did you take prednisone after Y90? If so, coming down from that high can make one feel somewhat low for a few weeks after Y90. I am also on the COC protocol (mebendazole, doxycycline and metformin; I should be adding the fourth COC drug atorvastatin soon).
Alabama Dee, I took Doxil when I had Y90 done. The 28-day dosing schedule makes that a bit easier to coordinate the Y90 around the Doxil. One can even take a few weeks off before/after Y90 and still not be that behind in the Doxil treatment schedule. I did not take any break for my first Y90 of the right lobe and took a 1-week break for my second Y90 of the left lobe. If I had to do it again, I may have flipped that and taken the break with the right lobe as it is so much bigger and may be more likely to require a longer treatment break than the left lobe, which is only 1/4 - 1/3 the size of the right lobe. Of course, tumor location is a consideration as well. I am sorry to hear that Madame X is not working for you. Must be disappointing.
0 -
Hi everyone,
I am not on this forum much, so please forgive me for jumping in a bit midstream here! I have been reading many of your stories and am of course moved by all that we share in this stage IV world.
I am trying to get some info about Y-90, and hoping some of you might be able to provide some thoughts/guidance.
I currently have pretty extensive liver mets
. Was diagnosed de novo in early 2017. A couple of spots then. Did great on hormone therapy until May of this year, when the mets exploded. Discovered ESR1 mutation. Did Taxol - mixed response. Xeloda didn't work. In August I was put on AC, which worked well. Knocked things back by 35% or so. Then was put on Erubulin, and we just discovered that it doesn't seem to be working. I'm obviously resistant to some chemo classes. Onco planning Gem/Carbo next. My liver function is fine, but I'd say a good 1/3 of my liver has disease.
So in addition to chemo, I am also very curious about Y-90 and who does it in the metastatic breast cancer setting. It is not standard of care here in the bay area where I am treated. I'd love hear thoughts from any of you!
Many thanks,
Leda
0 -
Leda,
Re Y90 --I don't think it's "standard of care" anywhere -- it's relatively new (last several years) with respect to breast cancer. The procedure (and other local liver treatments) are done by interventional radiologists. I haven't had Y90 but I had microwave ablation of a liver tumor. It was done at a large hospital center.
I hope that Grannax sees this and responds -- she probably knows more about Y90 than any of us. She is on her second round in response to liver tumors. In the meantime, I'd look at the website for your treating hospital and look for listings of interventional radiology. If you are not being treated at a large cancer center, then Stanford might be a good place to start.
Good luck
0 -
Bsandra
I was on taxotere with the 1st occurrence so MO is using drug classes that my cancer has not seen before. I have not had an anthracycline thus going to doxil which you can take longer than some.
JFL I am staying on my doxil treatment through y-90 since it is a 28 day cycle I will get it on day 21 if I qualify. The mapping is also a test of vascularity to see if non-radioactive beads will go mostly to the tumor and not spill into other places. The IR doc said sometimes it may not be feasible with breast cancer due to lower vascularity. He also warned me I will feel really cruddy for a week.
I will keep all informed about my y90 experience- mapping is Jan 6 so I get to enjoy all my kids at Christmas
Dee
0 -
WOW lots of good questions and answers today.
Well, I've certainly had the most y90 procedures on this thread but JFL might be right behind me. That does not mean I have all the answers, although experience is a good educator.
Ledascout My IR is one of the best in Texas and has patients coming from all over the U.S. for his expertise. His name is Travis Van Meter. You could call his office to see if he knows an IR in the Bay area. Look up MTV IR. He uses SIR Spheres microspheres. You can look up SIRTEC. Their representatives would surely know an IR to recommend to you.
As for standard of care for MBC, it certainly should be by now. I have not had any problems with Medicare or getting it approved. It was first approved for Colon Cancer mets to the liver, but I know lots of MBC patients have had it with great success. After my first y90s I got 18 months of inactive mets. I had lots of mets in both lobes. After that, mets that could not be seen the first time started growing, now they are big and small, too many to count. My IR said he was able to treat all big one and lots of tiny ones the size of BBs in my right lobe. On December 19 he will do the left lobe.
I have ESR1 too. Actually, nothing has worked on my liver mets except y90. IL, AA, X and Gem/Carbo did nothing to even slow them down. I will start on another chemo in January but I have no idea which one, I am heavily pre treated with all the big guns. I have a 27 year history of BC and MBC.
I also have mets in my lung and mediastinal lymph node, mets in other organs should not disqualify anyone from getting local TX.
So, my advice is research an IR who does a lot of y90s, specifically in oncology, make your own appointment, get the consultation, then take that information to your MO. You must advocate for yourself on this, if not, you may keep getting told NO.
JFL. Gemzar is one chemo my IR says he does not like to use during y90. I don't know why. Also, Avastin can cause problems.💞
0 -
I agree with Grannax's advice. If your MO needs some documentation to be convinced, look up Dr. Lewandowski from Northwestern University who published results of Y90 in breast cancer in 2017 or so. My MO changed his mind after 6 months and began supporting the idea of Y90 after reading literature which I believe included Dr. Lewandowski's study. Although my MO was on board by the time I had my first Y90, I did find the IR on my own to ensure I had the best (the manufacturer in Australia of the Sir-Spheres, Sirtex, uses my IR to train other IRs around the world on how to perform the procedure and he was performing Y90 and other innovative local procedures in breast cancer back before others were doing so 7-8 years ago). I also scheduled the appointment before I had any sort of official "approval" from my MO. Given that it is a process and takes some time to coordinate it all with pulling a great deal of medical records for the IR, having the consult, having the mapping procedure and then having the two separate procedures (right lobe and left lobe), it is a good idea to consult with an IR before you actually need or plan to have the procedure so you don't have to deal with delay when you are ready for Y90.
AlabamaDee, good luck with your Doxil - Y90 combo. There were two of us in this thread going through that combo at the same who both did really well with it. About vascularity, the more vascular the tumors, the more the Y90 beads will end up in the tumors. The tumors highjack the blood supply from the artery and end of having what was describe by the IR as "preferential" access to the blood supply (think of it like a big, strong, aggressive puppy competing to feed with a bunch of tiny, weak, diminutive puppies; the big, strong one gets the food).
Grannax, good to know that Gemzar may be questionable with Y90. Right now, I am figuring I might do the Y90 when I am on Piqray and not a chemo. Most of my chemo options now (not that I really have many left) are all weekly which is harder to work around than Doxil. Piqray scares me though as my MO said that the side effects were significantly worse than Gemzar. Targeted and immunotherapies tend to be thought of as milder them chemos but in many cases, it is the opposite. I found Ibrance very tolerable but Afinitor was a bit rough. I am not surprised to hear that Avastin is a problem, given that Avastin's mechanism of action is to prevent the tumors from growing their own blood supply by blocking VEGF (vascular endothelial growth factor) and Y90 relies on the vascular route to get into the tumors.
0 -
I agree. It's a misconception, I had more and worse SE on AA than any other chemo, ever! 💞
I liked your explanation of how y90 works, great analogy. I listened to a presentation by that IR recently. He gave new statistics and more innovative uses of y90. He talked so fast it was hard to get everything he said but it sounded like good news for us. Hope you can find the link, then share it here and explain it all to me!
Now, that I have my plan, I'm on a roll getting everything done for Christmas prior to y90 day. I have a lot to do.
JFL. What were the other drugs you are on in combo with Gemzar. There were four that you are taking now, are they in pill form? How are they not too toxic? A small dosage? I've never heard of anyone doing that. I'm interested.
0 -
Grannax (aka BMG
, I am on what is called the COC protocol. COC stands for Care Oncology Clinic. The COC uses repurposed, low-cost drugs that have been around for a long time to treat other ailments as an adjunctive therapy to standard chemo or other treatment - metformin, atorvastatin, mebendazole and low-dose doxycycline. They each have activity against different mechanisms of action of cancer. They are thought to even impact cancer stem cells, which is rare, as those are the dormant, nearly impossible to kill, cells that guarantee the cancer will come back even if it goes away for now. I have only been on it about 5 or so weeks so not sure if it is doing anything and given that I just switched chemos, even more is up in the air. I view it as something that *may* extend the time my treatments work rather than any type of potential miracle treatment. I was prescribed the drugs by an oncologist at the COC. They have an online application and phone consult program. They use one specialty, mail order pharmacy to send patients the drugs for a total of $60 per month for all four drugs (without insurance). I told my regular MO I was doing this but he doesn't prescribe the drugs or get involved in the process. He hasn't really inquired much about it. There are some others on these boards that are doing the COC protocol. 0 -
Grannax if you read How to Starve your Cancer by Jane Mclelland it is her protocol..and there is a thread on here about it and even more in on FB.
0 -
Yes, I read the thread. Very interesting.
0 -
You really need to read the whole book though if you are going to do the protocol because each persons cancer is different even if 2 people both have ER+ HER2- ...there are differences with supplements and meds and especially depending what conventional treatments a person is doing...
0 -
Tomorrow is my left lobe y90, Hopefully my last y90 ever. I'm still not finished with all my Christmas prep, etc. I hope I get the same anesthesiologist as lab st time. He was very good and I woke up easily. I'm confident in my IR and the effectiveness of the y90 but I just hope nothing weird happens. Just ready for it to be OVER.💞
0 -
Grannax,
Good luck tomorrow. I'm happy that you are getting this over with in 2019 so you can move on in 2020 with a new treatment and renewed energy.
0 -
Grannax, good luck tomorrow! I hope all goes well.
0 -
Grannax thinking about you and wishing you well.
0 -
My most recent petscan shows that the cancer in the lymph nodes is gone, and the undefined area of cancer in the liver has decreased significantly. The SBRT and gemzar combo seems to have worked/ be working - yay!
0 -
Congratulations NBnotes! That’s really great news....gives me hope...
0 -
great news nbnotres.
Grannex- you are in my pocket today snd the next few. here is to contributed healing and beating this disease down.
0 -
NBnotes,
Wow. That is TERRIFIC news. I know you've been working on this for a while -- happy that the SBRT/Gemzar combo seems to be doing good things in your body. (Or maybe it's those fabulous trips that you've been taking!)
Grannax,
Let us know how it all goes today. Happy that you will be getting this procedure behind you.
0 -
Thanks Bev Jen, LFF, Frisky and JFL. It is going well, much better than right lobe.
Yay rbnotes, such good news.
0 -
My SE from left lobe are much less than right lobe. I have had loss of appetite and change in taste buds. But, no pain. Fatigue on Day three but still managed to go to my first Christmas party even though I couldn't eat. Christmas party #2 at my house is tomorrow. Number three on Wednesday with my grandchildren.
So, I think I'm doing pretty good. If only I didn't have to wait at least three months to see if y90s worked. 💞
0 -
Grannax, glad the left lobe is a bit easier. I had that same experience with my first Y90. It is so much smaller than the right lobe that it makes sense. How you are doing all these parties, I don’t know. Christmas Beast Mode!
0 -
Christmas Beast Mode! That's how I'm doing it! LOL. But, yesterday I got quite a bit done then crashed at 4:00. Seriously, I slept till 7 this morning. I guess the beast in me needed a long winter's nap. So I have to get into high gear this morning.
Merry Christmas everyone🎄💞
0
