How are people with liver mets doing?
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I have had heart failure twice on herceptin this year for liver Mets but I had a liver biopsy and my cancer has changed back to estrogen positive so now waiting till after next scans currently on abraxane
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Hehe Nicole, what a good question! Some people argue that even Cleopatra (that established THP regiment as a first lien treatment to HER2+ MBC) trial was totally biased with too many people with bone mets... Hard to say but you can feel momentum in mbc research (it is still too little), and breakthrough is coming, so numbers will only increase for sure... And bone-only disease for a long time - that is also not so often found...
Saulius
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Saulius no disagreement, we are actually in agreement on that point - I didn't mean to imply that HER2+ has many options (I know only too well), but that someone whose cancer later mutates to HER2+ gets some additional options to try that they didn't have before, namely Herceptin and TDM1. And you're right, if/when Herceptin fails, the rest is all chemo, including the drugs that combine Herceptin with a chemo like TDM1 and all of the doublet/triplet combos. Every line of HER2+ targeted treatment is cardiotoxic, some lines also toxic to lungs and liver (TDM1). I'd been on IV chemo plus Herceptin+Perjeta since Day One except for the few months we twice tried to see if I could stay stable on H&P. TDM1 is not bad as far as chemos go, at least I get to keep my hair and the SEs are nothing like most chemos, now I'm just hoping that it works since I had zero response to the last chemo we tried.
I think DS-8201 will likely become a standard option for 3rd or 4th line in the near future, but I'm not a fan of the level of toxicity of that drug. I'll likely go back to Herceptin plus a chemo of choice when TDM1 fails, since as you said even 3rd line of lapatinib+capecitabine is debatable. Since lapatinib is one of the few drugs that crosses the blood/brain barrier, part of me thinks that it might make sense to save capecitabine+lapatinib for the possibility of when brain mets develop since the risk is so high. I'd hate to burn that option and then later develop brain mets. Although when the HER2CLIMB trial is completed, hopefully we'll see tucatinib approved as another drug that crosses the blood/brain barrier. But again, tucatinib is being looked at in doublet/triplet combos with targeted drugs and chemo. It looks like tucatinib+Herceptin+capecitabine is going to be the winning combo. If that gets approved, then I'd feel better about trying lapatinib+capecitabine, knowing there was another drug available that crossesBBB if brain mets develop.
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I find this conversation interesting as I have brain Mets, cardiac damage, and have burned through all the meds for Her2 or can’t get access to others due to all my previous treatment. I am not the normal. My fight is to live another day in hopes that another treatment comes out or that someone will let me try.
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Saulius, thanks for your reply. I wish the best to your wife and you. It's definitely hard to know how much to advocate for ourselves. I had a radiologist who read my mammogram ask me what my surgical plan was, and she told me to ask my MO when I said I didn't have one. Well I did ask my MO. I'm now scheduled for a lumpectomy and Possible axillary node(s) dissection for early December. Next up is appt with a radiologist to discuss liver treatment. I'm feeling cautiously optimistic.
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Guys, I am really sorry I always urge those who can to go for aggressive approach (as I know many people think of it as "no cure", means let's take it slow for as long as possible), as I am a sole believer that the longer tumors with microenvironments exist in us, the more mutations they get, the more resistant they become... So for me it is like a bit of special forces tactics: lower tumor burden as much as possible, if you can, cut it out, if you can radiate it, radiate, if you can kill it off with systemic treatments, do it but... kill it off!:> Sure I am still young (a bit:) and therefore maximalist (=opportunistic and optimistic - a sort of stupidity, I know:) but there are many scientific assumptions that "healing" is possible, so why not us? We don't know how it'll go but at least we all have to try as hard as we can... I can give you one very interesting example: I know one young person myself, who had a huge sarcoma on his thigh with localized bone involvement (mets). He went for a huge surgery - 12 h, sarcoma removed, bone cut out with big margins and treated in radiation chamber while he still was on the surgery table under anesthesia, then the bone was put in back, semi-dead, but healed... then he went through many rounds of chemo but is alive today, walks normally (cannot run), got a second child, and does not even think of anything than a cure, although no one has promised that...
Dear Lori, I actually wanted to tease you a bit - I know there's no disagreement for sure:> And... I hope so much you'll have a great response to TDM-1, I feel it simply!
Dear Leftfootforward... I am sorry for what you go through. There are no words... I pray every day for people on these forums and you are in my prayers too. Just hope science comes up with something more. Things are emerging but too slow://
Dear Rosie24, go for it, and you have all the reasons to be optimistic, believe me.
Saulius
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Saulius,
Do no apologize for telling people to go for it! I for one think it's good advice. It seems that in the US (perhaps elsewhere) doctors are very set in their ways about stage 4, pushing for quality of life always and not so aggressive about treatment in some instances. I think that's why your advice is so valuable -- it encourages all of us to investigate any and all treatments that we are comfortable with and to see if they might help our particular situation. Thank you for the energy that you bring to these boards!
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{{{{ Leftfootforward }}}}
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Bev...sometimes you say the TRUEST, SPOT ON things...like here about how doctors push quality of life over trying more aggressive treatments to save your life...I agree.
In the meantime tomorrow I get the biopsy results...but guess what...MO messaged me to say that they were in...and that I am still ER+ HER2-..........CURE-IOUS...I messaged her back and asked if she happened to see ESR! or PK13 on there....she will probably wait till tomorrow to tell me....
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Nicole- I saw on another Thread that you were having complications????? Are you ok?
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Nicole- Just got caught up on posts from other Threads---saw your update. Glad was not a complication.
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My dreaded MO appointment couldn't have gone better. The awkward two week ago visit never came up. She was her caring self. PTL
The plan is to go forward with y90, although she does want to talk to my IR, and I will be taking Faslodex during the 3 months while I can't have chemo. I'm not sure what I'll be on after I finish my y90's. She seemed very concerned about not being able to find a chemo that I haven't been on. She mentioned clinical trials but then we focused on y90. I need to write down the info about that trial that's supposed to be working well for patients with ESR1. I was so focused on getting her on the y90 page and I knew I couldn't be in a trial and do y90.
It feels good to feel like we're on the same page. I like it when I get to move forward with a good plan. Now, it's up to Dr. Van Meter and yitrium to zap my liver monsters.💞
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Yes Candy thanks!!! Just a lot of pain. I didn't want to post about it in here because I felt like I didn't want to cut in on Grannax and Gumdoctor.....they have a lot going on.
Very curious to see what the biopsy showed this time....what it will be sensitive to....
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very happy for you grannex.
Thanks everyone for your well wishes..
I will add that I am a go for it kind of girl. I have done the most aggressive things I can ( except whole brain radiation).
I think of you all every day. Thank you for being in my pocket.
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Well all, I got a call from my MO office today----PET scan planned for this Saturday the 9th. We are doing this due to the slight increase in the liver met on the last CT. MO wonders if it is scar tissue or active met and wants the PET. I have only had 1 PET before---Sept 2017 when diagnosed with Stage 4. So we will see. My MO did say in my appt last week if the PET doesn't show much info then the plan is keep treatment the same and rescan with CT in 3 months as scheduled and see how things look then.
Aggressive treatment conversation: I don't know where I stand with this. When I was diagnosed with the Stage 4, I knew NOTHING about cancer. No family members with history of cancer and I was totally ignorant of all this. I did what my MO said---scans, treatment, etc. We got shrinkage of the liver met and MO says I am "stable". Now possible progression, slight increase in liver met size. And MO says PET scan, no change in treatment, watch and wait. I live in rural area and cancer center is small. Y90, ablations, radiation procedures all not available in my area. Yes I could ask about aggressive treatments and see what MO says. And Yes I could travel to a larger cancer center to ask their opinion. But I just feel too confused, too unsure of the aggressive options out there. The Ibrance/ Letrozole/Lupron treatment has served me well so far-- 2 years on first line therapy. I don't know. Maybe I need to be more aggressive.
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Grannax, that wonderful news and you must be so relieved going forward, knowing that your MO is so supportive! Hooray!
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Candy you sound like you answered your own question when you said....
And Yes I could travel to a larger cancer center to ask their opinion. But I just feel too confused, too unsure of the aggressive options out there. The Ibrance/ Letrozole/Lupron treatment has served me well so far-- 2 years on first line therapy.
That is what it sounds like you are saying to me. I believe you must go with your gut. My doctors NEVER suggested Cryo...I did. I did research and thanks to some very dear friends on here one of them being (Bev) sharing information about cryo and other things I knew the minute they felt Ibrance/Let/faslodex wasn't working that I wanted a procedure done on my liver. I actually wanted that when I was first diagnosed stage 4 in April. I actually told that to my MO in NY and she said "no...we will do the Ibrance first, why do a procedure when this can just work" (paraphrasing) I should NOT have listened to her!! I should have done the procedure then, when they were even smaller and then did the Ibrance...because if the oral treatment fails (which it did) they grow during that time and you can miss out on certain treatments. Which I feel I did...because that 3rd tumor he couldn't get because of location...well maybe he could have if I would have done it back in April. Everything happens when it should..I do believe that...but my point is I knew in my gut without a shadow of a doubt I was going to an IR to consult and try to have something done before my next line of treatment.
Actually I think I remember saying to Bev immediately after I got the MRI saying that everything grew back that I AM GOING TO IR!!! lol I KNEW I wanted to do that. One more thing...I traveled an hour and half to J. Hopkins...and my ride home was almost 4 hours with the traffic so it wasn't really close to me...but I knew I wanted it so we made the trip.
If you feel unsure..then do research and (if you pray) pray about it for the Lord to lead you to the right doctor and the right procedure and treatment and meds.
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Saulius you are always welcome to tease me!
I've only had two infusions of TDM1 so far, but there are signs it is working - my cough disappeared after the first infusion and the obviously swollen nodes throughout my neck have shrunk. I'm cautiously excited that this will be the first treatment in over 18 months that has had a response.That's great news Grannax. I know how reassuring it feels when you and your doctor are on the same page. I hope you are able to get the y90 scheduled soon.
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Thank you Nicole for your words. I do pray. And I will pray for the "what next" if the PET or the next CT shows growth. In your case, the Ibrance failed you pretty quickly and you had to do something. I got a good response from the orals rather quickly at first---8cm liver tumor down to 2cm in a few months-- and I have been stable since then. So I don't have that feeling of urgency yet. Yet. Lets see how I sound when that time comes for progression. But the postings about zapping the remnants to oblivion, I just don't feel I want to be that aggressive about such a small tumor right now. But true, like Saulius said, the microenvironment is still there. The cells are still there and can awaken/mutate and grow again. Crappy cancer is still sneaking around and can explode in growth again. I don't know. So much to consider. But I am glad you did what your gut told you to do. And I pray for success for you. And I pray that in my case the Lord will guide me to what I need to do when the progression comes.
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Dear Lori,uhh,I felt it and oh my... I am almost in tears... anyway,we'll talk about this after some 10 years,and this will be a nice thing to remember (teasing again but why not?:)P
Candy...I think what you have already done is insanely aggressive.Just look,you are 2.5 years out,that is amazing.You know there are those sharp turns,and you can take them with your car when the wheels "screem" (okay,metaphors in English for Lithuanian is hard,sorry),but you can do them slow,and you arrive to the destination 5 seconds later but safer.So this is what you have done.I see my wife with this...stage IV...and the only thing you can be is to be proud of yourself. S
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Dear Grannax,I don't know you but I have read a lot of your posts and I have learned so much. When we talk "agressive",uh,you are top of the game... best wishes and lot's of support, Saulius
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Dear Grannax,I don't know you but I have read a lot of your posts and I have learned so much. When we talk "agressive",uh,you are top of the game... best wishes and lot's of support, Saulius
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Good to read about all the treatments that are being had in our group of mets!! I love all of the thinking “outside of the box" I'm thinking about us often and continue to pray that our treatment options bring healing to each of our bodies.
Salius- your life metaphor made me smile. I feel like I'm taking that cautious route right now. At first I wanted to be aggressive and destory as much cancer as I could and my MO took the passive route and said immuno or IR “Maybe in the future". My understanding was for palliative reasons only. Chemo for now......then I/L. What you have explained makes me think. Others paving the way also makes me think.......Times are changing for sure😊
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Saulius- Thank you for the kind words. I like your metaphor. Yes I am at the same destination but took the "safer" route. 2.5 years is a success to be on first line therapy with liver mets
So this is what I mean about pushing my MO. I had an appointment last week with her and we discussed the possible progression. And I understood that we were going to do a PET scan AND a bone scan (bone scan for pain I am having in the spine, but no changes shown on CT). Office called today with PET appointment time, but nothing said about bone scan. So I asked the staff. She said she would ask MO and get back to me. She called back and said I misunderstood the doctor---bone scan only if PET denied by insurance. And that " the doctor has it covered". I think I upset the doctor by questioning the tests ordered. I still don't really understand--- PET to look at activity of liver, bone scan for bones. But whatever. What I am saying is..... you are not to question the doctor, in the medical community's mind. She ordered what she wanted to order, and did not make any mistakes. And the "attitude" comes out if questioned.
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candy-678 , in response to your sentence "PET to look at activity of liver, bone scan for bones", may I chime in here? MY MO doesn't believe in bone scans at all. The only time I got it was when the insurance denied the PET scan. Now I am in a new cancer center and they do PET scan every 3-4 months (don't know how they get around the insurance part). My MRI of spine was done to see if there is any impingement of nerves. My understanding is that PET scan is good for detecting activity level in the lesions (more uptake= higher SUV numbers). I hope Ibrance continues to work for you for a long time.
NicoleRod, I think I am in a similar situation. I want a consult with an IR for my liver mets, but I don't know how to go about it without offending my MO. At MSKCC every consult is through internal referral only. I got the same thing as you - first let's do chemo and if that doesn't work, we can do local treatment. Considering my mets in bones and liver have progressed on Taxol, I am wondering if local treatment may help.
BSandra, I somewhat agree with you about going with aggressive treatment but it depends on many things. Some people like me weigh quality of life higher than longevity. In that case, 'palliative' treatment would work best for them. Maybe I am saying this because I just started an aggressive chemo combo (CMF) and my QOL has been down since 3 days!
Grannax, glad your MO is on the same page as you. Hope Y90 works for you this time too. Do you have to be off chemo for three months? Isn't it too long? I don't know much about Y-90. I guess if the tumors are zapped, then chemo can wait.
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S3K5...I was being treated formally at Columbia..I had consulted at MSK in NYC with Dr. Traina and I went with Columbia. While I really loved my MO there...I disagree with the "push" for Ibrance and making a person with small under 3cm mets in liver to wait to see what Ibrance does. I would not be concerned about what your MO thinks..I would just make the consult. If I were you I would make it at a different facility first. Just to consult....then get another opinion at MSK to compare with it. Just tell your MO you want to get a consult because there are some good procedures and you want to just see what they think.
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Tomorrow is my appointment with my MO to get the full biopsy results and treatment plan. I am very nervous about which chemo she will want. Can I ask you all...is that "red devil" chemo the Abraxane???>spelling? I don't want that....Is taxol easier? Any thoughts you all have I would love to hear.
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Nicole,
Red Devil is adriamycin. I'm not sure if that's used with metastatic cancer. I had it with my original diagnosis.
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And abraxane is just a different form of taxol ( taxol is paclitaxel and abraxane is nab-paclitaxel). Abraxane is albumin-bound with no solvent so it's less likely to cause an allergic reaction and no need for pre-meds. It is also much more expensive than taxol, so depending on your insurance company it may not approve unless you've previously had a bad reaction to taxol or other taxane.
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Nicole, she will likely prescribe Xeloda...which is a relatively easy treatment. I hope that for you...heavier tx are a slippery slope...
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