How are people with liver mets doing?
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Well, this is interesting. Blood liquid bx sent for both Guardant360 and Foundation1.
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Hope- sounds like a good plan. MRI, biopsy, then decide. Sounds like current treatment plan is keeping others at bay. I agree with not changing treatments too soon.
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When you all were first dxd with liver mets, did they do any local treatment like ablation at the same time as the initial biopsy? I feel like if they are going in there to take a sample they might as well zap the mets while they are at it. I'm not even scheduled to see the MO until after the biopsy though. It feels like this all takes a very long time.
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Nola,
While it is technically possible to do a liver biopsy and local liver treatment at the same time, I don't think they would want to do that on your first biopsy, which will provide your MO with invaluable information about your cancer's current characteristics. I have had a biopsy and local liver treatment done at the same time, but it was a subsequent biopsy and no matter what, we were going to do a microwave ablation on the lesion no matter what. It had been decided before my MO decided to add on a biopsy.
Yes, planning out treatment, especially local treatment to the liver, can be a bit complicated. And there are different options that can be used.
However, as I think maybe Moth said earlier, most BC isn't that fast growing, and I'm sure your MO is watching everything. If you have concerns about timing, I would specifically express them to him/her and see if anything can be moved along.
Good luck.
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H&G, so sorry to hear about the new mass. It’s good that your MO is thinking about local treatment already. Question, you indicated that it popped up quickly. Can you remind me how long between scans? I don’t really have a sense of what is considered “quick”. My liver mets (one 2.2 cm and the other just a bit smaller) appeared after a three month scan. My MO had been doing them less frequently but then moved it up as we suspected something was brewing in the fall.
I’m scheduled to speak to my RO about local treatment options next week. Need to study up so that I am prepared! Next scan is scheduled for March 29th and then we will see if the Xeloda is doing it’s job. Sigh...
Nola, glad to see you post. I’ve been thinking about you with your work and hope you have been able to get some resolution.
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Sadiesservant and Nola,
I didn't look back, but I wanted to make sure that you were both aware of the thread that is geared to local liver treatments --
this is the link to the most recent page, but you've got to go back to see various discussions on this
https://community.breastcancer.org/forum/8/topics/...
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Sadiesservant - it was a 3 month scan. They were going to move me out to four months since I had been stable for quite some time, but then my tumor markers started to trend upward. They did not move dramatically, but they were trending upwards moving from normal to high range but only by several points each time. I didn't think that much of it, but it was enough that they wanted to scan at three months instead of four months. I guess with the small moves in my tumor markers and a three month scan, I didn't anticipate something the size of 2.7 cm. But it's the first real thing to pop up like that for me, so maybe it's not as surprising to be this size? I thought it seemed to be pretty aggressive. My MO really didn't comment on the size.
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Thanks BevJen. I have been following that thread as well but it’s hard to catch up. Lots to absorb.
Thanks also for responding H&G. My MO didn’t comment on size either, other than to say that he was surprised I have pain/discomfort with a low tumour burden. I think it’s a physiology thing - my liver is in the wrong place thanks to my pleural effusion. I suspect it’s competing for space with my intestines. But my MO is clearly not letting the grass grow. This scan will be two months out.
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regarding speed: my lung met this winter went from 0 to over 2 cm in 8 weeks. My bone met from nothing to 1 cm in another 8 weeks. I grow fast tumors. The saving grace of my first (huge) lung met was apparently that it was so fast that it outgrew its blood supply - metastatic cells, as they grow, co-opt the vascular system and get their own blood supply and divert blood from the body. Mine was so sloppy about building that it forgot to do that & promptly became necrotic and died off due to lack of nutrients. Mine is literally a very stupid cancer which I hope we can use against it...
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Moth -It's not really funny, but you had me laughing! I hope any and all of the tumors you may ever have to face are that stupid so they can get rid of themselves as quickly as possible!!! The biology of cancer is amazing. Unfortunately it has to be so deadly.
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That is great news! Hoping it continues working for a long, long time!
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LFF – Best wishes for finishing the brain mets treatment with minimal side effects and maximum efficacy! I hope that you get a long period of calm after the crazy weeks of appointments.
Sandibeach - Good luck with your SBRT to that rogue liver met!
Hopeandgratitude- I'm sorry that you have a new liver met popping up. Your oncologist sounds very proactive. Hopefully they can treat it locally and Verzenio will continue to work on everything else.
Nicole – I'm continuing to pray for your pain to resolve and that Affinitor will work well for you. Did you officially progress on Eribulin or did your oncologist decide to try Affinitor since your liver mets were wiped out byY90?
Moth - Love that your "stupid cancer" outgrew its blood supply and became necrotic. Wouldn't it be nice if that always happened!
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Definitely funny Moth. Thanks for the laugh. My cancer has typically been stupid and slow. Stupid and a bit faster might be a good thing for me now that I appear to be endocrine resistant. But would rather it not get carried away with itself.
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Hopeandgratitude- so sorry you are going through this. Great that they are getting a biopsy of the new tumor- more info to decide how to treat it. Since you have an outlier and your meds are working- I think local treatment is also a great idea. I had some tiny tumors in the liver that would not even light up on a PET, but they agreed to do the y-90 a year ago on the 3 bigger ones to reduce the tumor burden( the largest was almost 5cm). Those locally treated tumors are now considered dead and shrinking. I am still dealing with new tumors because my previous systemic meds weren't working. I would totally get local treatment to my bigger 2 ones, but not allowedwhile on the clinical trial drug. I’m stable with great labs so I will be happy with that.
LFF- Cyberknife countdown! Prayers for total response. I had 4 rounds of SBRT to the lung. I know that fatigue. Hope you get some rest and recover quickly.
SandiBeach- yay that you get SBRT to the liver to kill the outlier and "Dead lesions don’t mutate" LOVE that!! I hope they get some answers on the liquid biopsy.
candy- scanziety is real. Hoping for a good report on yours on the 22nd
Nicole- I care that you are still suffering. We are all hoping for complete pain relief.
Good to read and keep up with everyone. I hope remembered everything right. 😉
Dee
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Thanks Dee for the history and information. Happy to see local treatment working so well. And yes, STABLE is good. STAY that way!!!
Candy - I'll hop in your pocket now if you need me...otherwise, I will be there on the 22nd.
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Well If you all don't hear from me its because I am in pain again. I seriously feel like I am never gonna recover from this. Its been almost 10 weeks. I took off the fentenyl patch today but now my pain is worse like bad. I guess I will have to do the block on Wednesday.
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I think I might be depressed I am having very bad thoughts.... like I feel so unhappy and nothing could make me happy and I feel afraid and scared. I don't know what to do....can this be from taking the fentyenal patch off? I asked the pain management doctor yesterday if I needed to ween off he said no because its only the lowest dose 12 mcg. I am crying and just not right mentally...or physically...
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Nicole,
You seem to be very sensitive to all of the drugs that you take, and even though this was a very low dosage, you probably should call the contact number at the pain management doctor and report this. Fentanyl is an opioid, from what I understand, and even though most people might not need to taper off of this drug, if you are feeling that way, you need to call either that number or your MO's office emergency call number. I would not mess around with this.
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oh Nicole! My heart goes out to you. You have been suffering in pain far too long. I do wonder why they didn’t give you a little higher dose of fentanyl to help alleviate the pain you were still having....but I know nothing of opioids and administration really.
But now with you feeling so terrible emotionally! Maybe part of it is the fentanyl but I am sure a lot of it is because you have been in pain so long and also dealing with MBC!! It’s so much for one person. We are all here for you and care so much. But you need more. I really hope you will consider a counselor!! I have had one for 2 years and I don’t know what I would do without her. She shares coping mechanisms, listens objectively, helps me to figure out why I am feeling certain ways, helps me to understand how and why things affect me, helps me to find joy in life away from this disease!. A very safe place with a very safe person. Although my body cannot tolerate many of the antidepressants I have tried at even the lowest dose, there is one I can tolerate -buspirone - and I take that daily in combination with Ativan for anxiety. They don’t dull me or stop me from feeling, but they help me cope right now. What works for me may not be the answer for others but I think with everything you have been through and are going through, you could maybe use a GOOD counselor. And I do know God gave the right person to me. Although I didn’t know it when we first met and started working together, I later found out she is a Christian and FOR ME, this has been such a gift.
I pray for God, who will never leave you, to give you peace and strength and help guide you through this really difficult time
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oh Nicole ,
I’ve been following along since your treatment and I feel for you . 10 weeks is a long time to be in pain and it can definitely be exhausting physically and mentally we are fighting for our lives and I think most would agree, that given a chance at longevity , would be a no brainer. in so sorry you’re dealing with this.
So I have my progress CT on Monday. My bone scan was an ordeal on weds with a blip (or so they call it ) on my pelvis. But I’m trying not to panic as I’ve heard from so many that innocent things pop up quite commonly. So I’m hoping nothing is there.
I want to have all my info gathered before my follow up on weds. currently on Abraxane. I was seeing a locum MO since recurrence but next week I’ll be seeing my regular MO. At the beginning I was told we would do 6 cycles and then a break (18 tx), depending on response/lack there of , and tolerability. So what does a break mean exactly , if it’s working ? So we take a few weeks off and go back to it ? Do we move from IV chemo and go to the oral chemo plus endocrine? (Note : letrozole failed after a year alone. I was on tamoxifen before ovaries were removed so I imagine tamox is still on the table)
What other endocrine therapies are available besides tamox and letrozole and will I start back on that (endocrine) eventually ? My naturopathic onc believes I should be on tamoxifen and a baby aspirin ASAP as I’m still highly estrogen positive but I know it’s probably a no go woth my MO because of iv chemo. But I have been giving it some thought.
But yeah , I have no idea what the usual treatment plan is. I know it’s highly dependent on response . I was NED and off treatment except endocrine for quite some time so the first time around was not the typical course I do believe.
Fingers crossed for a good scan. I could use the encouragement!
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Nicole, call whoever you need to call for support! You have had so much to deal with it’s perfectly acceptable to feel really down. If you haven’t got someone or an organisation, surely your friends and family can find that for you? I have a counsellor, through a local charity and I speak with her every couple of weeks. She’s young and learning but she also has an insight and knows when to let me talk and when to suggest things to help me.
So far we’ve discussed ending work, relaxation and mindfulness... , my pain ( she’s looking into finding me an acupuncturist who knows about dealing with cancer patients... I know acupuncture worked for me previously when I had major pain unrelated to MBC) and how other people deal with my pain, my will and power of attorney and we’re getting to end of life chats ...I asked her to do that, just to get it out of the way so I can ‘park’ it. I can’t discuss this stuff with my family as they just keep saying they don’t want to talk about it yet... but I need to! We both laughed a lot when I told her I discovered you can actually buy a coffin ( looking at wicker) on Amazon of all places!!0 -
Nicole- 🙏🏻 Glad you reached out here. I echo others who advised calling your pain center or MO and report your dark thoughts.
B-A-P Hoping the bone scan blip is just that and your scan on Monday is a good report. You asked about other endocrine therapy. I wonder if you could move to Faslodex and Verzenio as a maintenance treatment. If it works it can work a long time.
Dee
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Alabama Dee,
I’m hoping that is the next move.‘I’m unsure of how treatment goes this time around because last time I finished six cycles with NeD so all I was on was endocrine therapy. Where it’s a bit more aggressive this time, I don’t know if the Abraxane is a keep going until it doesn’t work or if it’s the 6 cycles and then we move on after a so called “break”. I guess I’ll find out at one point . I’m super type A and need to know the plan even though in this world , it’s gotta be fluid. Hoping to still be an exceptional responder 🤞🏻
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Nicole, just a short note. I hope your MO will consider not starting AA until after your pain/?depression is resolved. AA was very difficult TX for me. It’s a great one for others. But it seems to me you don’t need to start another drug until the situation you’re in is explained. Hoping for the best for you.
I’ll update y’all later. Praying for all of you.
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Nicole - It breaks my heart that you are still in pain. I'm continuing to pray for pain-free days ahead. Hugs!
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NicoleRod - sending you hugs and hoping you find relief. ER+ 85% . I will be starting Exemestane and Everolimus this week and am scared, especially with DR comment that "I don't have anything else". I started filling out questionair on clinical trials, but need to ask DR for help on some of the questions. I think she should be the one doing this and not expect me to contact research clinics. I was on Ibrance/Arimidex for about a year, tumor in R-axilla seemed to be shrinking, then blew up in December, spreading into the skin via lymph. PET in January did not find anything in organs or bones. Lymphedema in right arm not responding sell anymore to Flextouch and compression sleeve. Occasional pain in lower right arm, could be from lymphedema, but getting worried that it is the cancer. I have started using CBD/THC, mostly for sleep. Also one topical, not sure if it really helps or not. Expensive, and not legal where I live. About a 3 hr RT to get it.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.
12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs.
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Thanks Grann Sent you a message
Thank you Theresa!
BlueGirl.... I am ER+ PR- Her2-...I do have the PDL1 10% and I don't believe this works against that..but never the less I wanted to give endocrine therapy another try because it is supposably pretty good for bone mets...and since my liver "WAS" and hopefully still "IS" NEAD now is the time to try and circle back to endocrine therapy now that my liver is under control for the most part. I will not start AA until next week and I am even considering asking to hold off another week if I still have consistant pain. Friday night my pain was bad and consistent but Saturday it got a little better and Sunday a little better...so I am giving it some more time.
I have decided NOT to do the Plexus block with alcohol as I read something on line that scared me about paralysis... I just don't want to risk doing anything right now then can lead to more problems than I currently have.
. I am going to try and reach out to a therapist today.0 -
BlueGirlRedState - I do not know very much at all about MBC and spread to skin except it likely travels through lymph nodes. I strongly suggest you seek a second opinion from.a reputable MO, leader in the field at a large oncology center. Is there one near you? Maybe if you provide your location someone here can suggest where/who you could speak to?
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Wanna talk fate.....
I just got a call the Afinitor is on back order and they don't know for how long....I put in a message to my MO asking if we should do verzenio instead....
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Nicole-
back order??? Well that’s scary!! Did they say why? I wondered if COVID would impact supply chain on some chemo drugs. I wonder if they can source it elsewhere?
Well, for you this may mean in to Verzenio!?!
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