How are people with liver mets doing?
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Grannax- You will have to post pics when all done. How long do you think till all done? Hope the next antibiotic does the trick. So sorry you had so much trouble with the Port. I had Port placed right after BC diagnosis and after mastectomy. Of course, I hadn't started chemo or any meds then. so my white count and immune system were ok. Not a bit of trouble with the Port.
I am hanging in there, that is how I say it. Lots of pain from the AI use, bone mets, or RA. I think RA right now. Tired right now. End of the day. Busy today. Went out to car to go to store and battery dead. So had neighbor jump the car and then I took it to get new battery THEN went to store. Good grief.
You take care and always good to read your posts.
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Grannax, hope your port infection resolves soon. It must be painful when they access the port for chemo or blood draw. Glad to hear that bathroom renovation is almost done, though unplanned.
Candy, sorry to hear you are in so much pain. What do you use for pain relief? It must have been hard to get errands done. Do you have any one else who could help you with these things?
My pain meds were partly responsible for bowel blockage so the pain spl dr has reduced my pain meds. He has suggested nerve block shots (3 shots, each given every 2 weeks). I am willing to try it but don't know if they will be effective. Has anyone had this done for bone mets pain? Did it help? I have multiple bone mets through out the spine.
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S3K5- I am ok. No I don't have anyone else to help me. I am pretty independent. Always have been. Have to be. I slept well last night. LOL.
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Grannax I've been following your latest development and praying that your current treatment keeps you stable for many years to come.
I'm about to undergo a Y90 procedure and who could I consult with but the queen of y90?
I have been carefully studying the actual procedure and my type of cancer and something doesn't make much sense to me. I wonder what my chance of success might be on my lobular MBC. What type do you have Grannax, the ductal or lobular? I love your success story, but I fear my ILC will result in a unsuccessful outcome.
In the ductal type, the tumor is a mass in which the beads are inserted which destroy the cancer cells, and that makes total sense. In the lobular type, however, the tumor presents itself in lines that are disconnected, there's a huge amount of spaces between them, they are not a mass, and what characterizes them is the lack of E-catherin which is a type of glue that holds together the ductal type.
My fear is that when they insert the beads they will destroy everything, good and bad since they won't be penetrating any mass, but unconnected lines...I fear that in my case the beads will do more damage than good, but I could be wrong.
These are questions that I should be asking IR, but I honestly don't think I would get a straight answer. I am more trustful of what is shared on these boards.
If anyone else has had a successful Y90 and you have the lobular type, I would love to hear from you...if you have any helpful insight on this topic I would be grateful for your knowledge.
thank you all, and Happy Labor Day
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Frisky. I see you live in NYC. I am sure there are some excellent IR's there whenever you are ready to consult. Meanwhile, my IR is Travis VanMeter. He would be glad to consult with you by mail from Texas. I can give you his number. People come to him from all over the USA. He is considered to be the very best in Texas, I'm not exaggerating.. I'm so glad he is in Dallas, otherwise, I might not be here today.
No, I have Ductal. I know lobular presents many products, especially with DX. Truthfully, I have never thought about the problems in regard to y90. I didn't even know they stayed in the same unusual shape in the liver but it does make sense to me.
As the Queen of y90 (LOL) I highly recommend him to you. Hahaha
Travis Van Meter, MD., office 469 458 9800, Dallas, TX. If you have any trouble contacting him, let me know. I have his cell and the cell of the manager/ educator,/ representative, Katherine. I know he will know the answers to all your questions.💞
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thank you Grannax for all your help....I will treasure your information and use it after I finish my research. I might call your doctor and ask him, although I’m not fit to travel far....
I also hope to hear from people that have lobular and have successfully undergone the procedure.
Structurally, it doesn't make sense to me, but I'm no doctor....
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https://community.breastcancer.org/forum/8/topics/...
Frisky, you've probably already been on here, but there's a thread for all of these liver procedures, too. See if this link works and maybe some others with lobular will have some insight, too. All best wishes headed up to New York!
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Frisky,
I have lobular. I didn't have Y90 because they didn't think it was appropriate in my case due to # and size of lesions. However, I did have my largest lesion ablated in July. It was slightly irregular in shape, from what I understand, but they could identify where it was. So perhaps (although I never asked my IR this) lobular displays differently in the liver. That would be my guess. You should ask your IR bc they can look at your scan and let you know. Have you had an MRI of your liver? That's how they found mine, and that's how they are following me now.
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Thank you Kattysmith! I’m gonna read all those posts from the beginning!
How are you doing on that new clinical trial? Is everything good with you?
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BenJen Thank you for sharing your experience, I'm not surprised they decided to ablate instead of Y90. You had a good, honest IR that knew it's limitations.
Lobular presents itself differently in the liver as well because it lacks the glue that keeps those cells together in the ductal type. It's the major characteristic of lobular. Just unconnected strands of cancer cells that can eventually merge into a sheet like type of invasion....it tends to wraps itself around organs instead of building a mass.
I know it's going to be a problem because couple months ago an IR took six cores out of my supposedly liver lesions and they couldn't find enough cancer to analyze its genetic profile...at the time I was angry at my MO, certain that they had botched the procedure.
But now I understand why...the problem? He never explained the reason...thus I can't trust him with the Y90 now ...unless I do my homework....and I'm told it was successful....the consequences, if theymisfire those beads, are deadly...
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Actually, Frisky, it was me who suggested the microwave ablation after doing a lot of research and consulting with a couple of IRs via email and phone calls. The IR who did my procedure had originally suggested chemoembolization of my liver lesions, but the largest, which was about 2 cm, was the prominent one, and the others (about 5 additional, from the MRI report) were smaller than 1 cm. There was a question if the smaller ones were even independently vascularized, or if I should wait to see if Ibrance would do the trick and shrink them. I wasn't willing to wait for that and wanted to reduce tumor burden ASAP. Of the two IRs who provided the most input neither wanted to do Y90. It had nothing to do with the beads or with the lobular status. They just wanted to save Y90 for further progression.
Chemoembolization is another process that could be used, although if you have extensive liver mets, they will not do it all in one fell swoop due to the risk of liver failure. The IR who did my procedure said that even with 5-6 lesions total, he would have to do it in 2-3 procedures, separated by at least a month or more, to allow the liver and the body to adjust.
Finally, as some others have suggested on this and other threads, SBRT is another procedure that could possibly be used. That is done by a radiation oncologist, not an IR, and it's done by external radiation. Again, from what I understand from the doc who did my original radiation therapy in 2004, they will only do it if it involves a smaller number of lesions, again due to fear of liver failure or other liver damage.
An article that I found quite helpful in starting my research is at:
https://pubs.rsna.org/doi/full/10.1148/radiol.1211...
That is a 2013 article, so it describes a lot of the different techniques generally. However, since microwave ablation wasn't really used much at that time, anywhere you see "radio frequency ablation," you can substitute microwave ablation (similar procedure). My IR is perfectly willing to go back in and do more of these procedures on my remaining liver mets either now or after we give the meds some more time to work (I'm only about 35 days in with Ibrance.) He did say, though, that the most he would do at one time would be 2-3 lesions.
Another useful article is
http://ar.iiarjournals.org/content/38/5/3063.abstr...
Finally, if you haven't seen it, here is some info about liver resection techniques, etc. at MSK, followed by a series of cites to some helpful articles.
https://www.mskcc.org/clinical-updates/minimally-i...
Hope one of these helps you in your research. I do not recall seeing anything in any articles distinguishing lobular from ductal cancer with respect to these procedures.
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BevJen thank you so much for your explanation....it’s really helpful. And thank you for those links. I will study them in depth....
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Frisky, I have ILC, liver mets only as far as we know. The mets have historically been many and diffuse, but viewable as lesions on imaging. The IR and my onc at my NCCN center thought Y90 would be a good option for me. (We were making the mapping appointment when my first tumor marker result on Xeloda came in, and it was so dramatic that we put Y90 on hold for a later time.)
Following on this comment, here is my update. I have not been posting much on this thread lately. I think I may have said here that only two lesions are currently seen. It seems these two lesions are Xeloda-resistant rouges. But one of the buggers pressed on the common bile duct and I now have a temporary stent to unblock it. So I have just added Halaven/eribulin to Xeloda. That’s right, folks, two chemos for the price of one! (Until my deductible resets in January.) If I understood my onc correctly, after the lesion shrinks/disappears, we may radiate the area to try and make sure it stays gone and I can go without a stent. Kind of like whole breast radiation after a lumpectomy, I guess. I wanted to just go straight to radiation but my onc suggested that the lesion or lesions are too big for radiation alone. And of course systemic therapy is standard. Thoughts?
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Shetland, quick question...so have you always had tumors in liver from the time you were diagnosed Stage IV? I ask this because you went a long time without progression and I feel like every one that I see that goes so long mostly only has bone mets..not liver.
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Yes, Nicole. Early stage 2011, metastatic 2014 with numerous liver mets. So, yes, five years with liver mets only (breast met disappeared). My first treatment was taxol, which took me to NEAD at the three-month scan. For a year after that I was NEAD on Ibrance + letrozole with normal TMs and the next year NEAD on scans but slowly rising tumor markers until the scan showed progression. Then tried faslodex + afinitor for four months, which did not work. Went on Xeloda, which took me quickly to NEAD and normal TMs again for two years. Now just these two rogue lesions.
There is a thread I started called “Anyone 5+ years with liver mets and ER+ Her2-?"
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I will have to look for that...thanks.
So did they start you on chemo first because Ibrance wasn't out yet?
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Links to the symposium on Lobular Breast Cancer
hi Shetland...I'm sorry to hear about the two little buggers that are not responding to X...what your mo has suggested about wanting to shrink the lesions systemically with chemo before using any IR treatments is typical. Mine has suggested the same but wants the IR to perform Y90.
The problem as I see it, based on what I learned from listening to a symposium on lobular breast cancer over the weekend is that lobular type cancers doesn't respond well to chemo. Apparently, lobular responds best to estrogen suppression therapies. Yet, you've gotten a great response from X so, I guess, like everything else about this disease, there's no consistency that we can count on.
By looking at how lobular presents itself, as unconnected strands, I don't understand how Y90 can possibly work. More healthy, than cancer cells would be destroyed in the process.
BevJen is another lobular cancer patient and she chose to do the microwave ablation...
Did the IR or MO explain why he wants to do radiation instead of Y90ing the little buggers?
I spent the past 48 hours going through the 26 pages of posts on the thread about Y90s, Sirt and ablation. I couldn't find another case of lobular cancer undergoing Y90, so I'm puzzled about what to do when I meet the IR. My trust in doctors is at an all time low. At times I feel as if, the care prescribed is based only on what's the most profitable to the hospitals and the doctors, and has nothing to do with what's best for me
Lobular vs Ductal B
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Nicole, I started with Taxol because my liver was dangerously full of mets and we needed something that would work fast. If I had been diagnosed sooner, I'm sure we would have started with A/A and maybe I would not have had to lose my long hair. As it happened, when I was finished with five months of Taxol, Ibrance was approved, so that's what I did next.
Frisky, about lobular and chemo— Keep in mind that the majority of the questions addressed at the symposium were from early stage people. Early stage ILC is very hormone-driven. However, as it progresses it mutates, and can become a different beast that is more sensitive to chemo. In my case, I have been on tamoxifen, letrozole, and faslodex; and now my onc considers the cancer endocrine therapy-resistant even though it still tests ER+. The two treatments that have gotten me to NEAD have been the chemotherapies taxol and Xeloda.
Regarding Y90, the IR told me that the beads would go where there was extra blood supply feeding tumors, and that during the mapping he would block off the route to places we didn't want them to go. Y90 was the only local treatment, the only kind of radiation therapy, that was good for such numerous, diffuse mets. Impossible to zap them one by one. Now my situation is different with just the two lesions, so some targeted radiation may be just the thing. I think you need a good Q & A session with the IR, RO, liver specialist, etc. I hope you meet up with docs who you can trust care about you as a person. They are out there.
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Shetland...thank you so much for your detailed explanation of your experience regarding Y90 and lobular. I'll make a list of questions to ask my RI when I meet her. Hopefully, she will have looked at my latest scans and will be the caring type.
What's driving my fear is a strong intuition that my lesions are not well formed since when they went in to do a biopsy, they couldn't retrieve enough DNA material to be genetically analyzed...my fear is that they might do more irreparable damage than good.
Between a khyphoplasty where only 1mm of lift was gained in my 2 collapsed vertebrae, and a botched biopsy operation, my trust in our doctor's abilities and honesty has been severely compromised, the problem I'm already being treated at a major cancer center by their best doctors...
Oh...there’s something else, there’s the story of another BCO member that went through a successful Y90 at the same hospital, she was ductal, but died two month’s later...
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She should be able to pull up your scans on the computer and show them to you as you discuss.
My understanding was that while the beads preferentially go to tumors, the Y90 is kind of like radiating half the liver, so it would also treat little stragglers. I think your question about lobular is a good one. Please let us know what answer you get.
Regarding biopsy, yes, one question I plan to ask: Why, with seven cores obtained in my recent liver biopsy, did only one have cancer cells? It was barely enough to get ER and Her2, and nothing for Foundation One genomic testing. Is that just the way it is sometimes? Was the imaging not sufficient? Did she spend enough times with my scans beforehand? Does it have anything to do with lobular? Was it unsafe to get more? Was much of the lesion not active cancer? I know that IR is known to be very experienced and skillful...
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Frisky,
I agree with Shetland pony that you need to have a real heart to heart with both an IR and a RO regarding your situation.
Also, if I was being seen at MSK, I would look at Ruth Bader Ginsburg's cancer journey, all of it, I believe, with MSK -- somebody up there is doing something right. Find that person.
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Dear Frisky, I think Shetland is right about Y90 radiating more than one point. The spheres are simply directed to lesions or other points because then the radiation density there is largest. Don't know though how radiation distributes in liver-tissue (is it an exponential decline over the distance?) from the sphere center but for sure it impacts surrounding tissues as well. I completely understand your worries regarding ILC but for that doctors should explain everything, I mean why they want to do Y90, and we all know you are knowledgeable to understand everything they say and ask important questions. Do they do Y90 with different dosages too? Ah, I checked again (did it a year ago), and we still don't have this procedure in Lithuania...
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Shetland, BevJen, BSandra thank you all for your support, I do agree that the proper questioning and careful selection of the IR is paramount—although my MO has already someone in mind: the best of course. Hopefully, I will get an honest explanation and understanding of the procedure regarding lobular and of my case in particular. This will help me decide if I should go through with the procedure, or opt for an ablation.
I just woke up, and right after reading your messages, I had a moment of lucidity, that allowed me to further understand the root of my deep distrust.
Before psychotherapy took care of the disease, I used to be a relentless perfectionist, this of course, served me extremely well professionally, and although I no longer drive myself hard anymore—since I retired many years ago—I believe that deep down I find the lack of perfectionism and cavalier attitude in the medical profession deeply upsetting.
Worst of all, I find their inability to take responsibility for their mistakes even more egregious. On the other hand, I have to admit that if I were a doctor that lost more people than I could save, I might also be unable to give a damn in order to remain sane
Now, as a set designer, if the details for the scenery were not executed perfectly, no one was going to die during the evening news broadcasting—although I might have—but in medicine it's a real problem, and medical malpractice is a leading cause of death in this country.
But, I also recognize that without trust i'll be only putting myself through hell. o I guess more psychotherapy is in order....before I meet the IR....
Shetland...I know you're a dancer, so you'll appreciate that I worked with Karole Armitage, another relentless perfectionist...we share also the same birthday!
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Frisky Your self analysis is probably right-on. LOL. Me too. Most people don't know that a good hairdresser is usually a perfectionist. That was me, every hair had to be perfectly cut or I would not rest. Also, artistic is a must for a really good hairdresser. And people skills, storytelling and psychotherapy are a must. I did all of that in my thirty plus years and kept my clients. Referrals are the best advertising. Anyway, enough of that.
I, too, demand certain perfection and explanation from my docs. That probably explains why I've fired six MOs in my 27 years of fighting with this disease.
So, when I find one like Dr. Van Meter I keep him. I urge you to get his opinion and answers to your questions by mail, FAX and phone. It would be your best, and easiest, second opinion. He does this ALL the time. He would not expect you to come to Dallas. He truly is a for his patients Dr. And, a fellow perfectionist. LOL💞
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thanks Grannax it’s so good to share with a fellow artist and perfectionist! I will follow your suggestion and see what happens...I'll try to email him, so I can be concise and not forget anything.
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Perfect. I'll wait to hear what he knows about lobular MBC with liver mets.💞
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Grannax, I have often contemplated the union of people skills and technical skills that a good hairdresser has! Good nurses, too. One reason it impresses me is that I am an underachiever when it comes to technical skills in general. Perhaps my choice of husband was nature’s effort at fixing the gene pool there, as he and his family are quite talented in that area.
Frisky, how cool to work with Karole Armitage. I have always been fascinated with how artists/creative people work together. I enjoy watching “making of” videos where you get to see the process. As for perfectionism, definitely a double-edged sword. A very hard thing for me to deal with regarding breast cancer has been this: All my life I believed that I could do anything, understand anything, that I put my mind to. There was no problem that could not be solved through intelligence and hard work. Then cancer came along. Cancer was the unsolvable problem in my life. I stayed up for many hours researching on the internet, did every lifestyle thing I could, etc. But control was an illusion. I always hated the word “acceptance” because it seemed like giving up, like saying something was ok when it wasn’t. Now I am starting to understand what it means.
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I completely share your experience Shetland regarding your prior self-confidence in understanding the world, and how cancer has changed that. Although, you are much more knowledgeable than I am. But then, our doctors don't seem to know much either. Have you noticed how regardless of the institution, they all follow the same protocols. With the help of Bestbird's book, we know as much as they do about what they are going to prescribe next. No surprises there
Thus, acceptance is a very wise choice. That's the reason why I've been putting up with all the various fkups. I am now at a different crossroad as a botched Y90 is a death sentence, and I'm not ready to go yet, not like that...so maybe like the Buddha concluded, the middle way is my best option. Ask questions, listen to their answers and than follow my guts.
I have been unable to find any statistics regarding MB lobular cancer in the liver and Y90...nothing! This leads me to believe they treat it just like the ductal, although it presents in a radical different way.
I just found this!
Transarterial radioembolization using yttrium-90 microspheres is an established and effective treatment for liver malignancies. Determining response to this treatment is difficult due to the radical changes that occur in tissue as a response to radiation. Though accurate assessment of treatment response is paramount for proper patient disposition, there is currently no standardized assessment protocol. ( ain't that special? They're off the hook!)
Qualification is based on bloodwork and examination of the scans.
Singh and Anil describe many findings common in post-treatment images in their work [9]. Common findings include peritumoral edema, hemorrhage, ring enhancement, biliary complications, abscess, radiation-induced liver disease, non-targeted radioembolization, perihepatic ascites, pleural effusion, capsular retraction, hepatic lobar volumetric changes, fibrosis, and portal hypertension.
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Frisky, it’s not like Y90 is your only viable option. It may not be right for you, or right just now. So have the meetings and learn things even if you ultimately decide to simply tuck that knowledge away for future use. Listening to your intuition is a valid part of the process. For me my intuition and pursuit of knowledge feed each other; that’s how I roll. (Others may have different decision-making processes that work for them.) My onc and I have actually asked each other, “ What is your gut feeling about this?” Our docs, well at least some of them, are in the same position as we are in that way, and also in wishing for that complete knowledge and control which would help us all so much if it could be had. Once, during a support group meeting at my cancer center, I went into a back room for a quick clothing change and saw a mental health poster aimed at the medical staff. It was about dealing with not being able to save every patient and how to keep going in their difficult job. It kind of jolted me into remembering the grief or helplessness my onc must feel at times. Yes, if you have Bestbird’s book and the NCCN Guidlines, you are well on your way to an honorary degree. Last treatment change (to Xeloda) my onc had an amused smile on her face when I said, “I thought that is what you would recommend.” She replied, “Of course you did” because she knows me.
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https://www.nature.com/articles/s41598-018-21125-2
Pharmacokinetic-pharmacodynamic correlations in the development of ginger extract as an anticancer agent
Amazing findings published in Nature. One teaspoon of dried ginger @ day found to be10.000 more effective than Taxol in killing cancer stem cells in BC!!
https://thewholejourney.com/ginger-is-stronger-than-chemotherapy-for-cancer/
https://bmccomplementalternmed.biomedcentral.com/articles/10.1186/1472-6882-7-44
Ginger inhibits cell growth and modulates angiogenic factors in ovarian cancer cells
Ginger and Cancer: How A Compound in Ginger Could Kill The Root Cause of Cancer
A 2015 study published in PLoS reveals a pungent component within ginger known as 6-shogaol is superior to conventional chemotherapy in targeting the root cause of breast cancer malignancy: namely, the breast cancer stem cells.
6-Shogaol Inhibits Breast Cancer Cells and Stem Cell-Like Spheroids by Modulation of Notch Signaling Pathway and Induction of Autophagic Cell Death.
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