How are people with liver mets doing?
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Thanks Bsandra and HopeandGratitude. Knowing others are going through the same roller coaster does help (although I wish none of us were going through it (patients or loved ones)).
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Bliss. Praying for your stent procedure to go well tomorrow.
Bev. Praying for plan and pain relief.
My first infusion of Navelbine is tomorrow. Yesterday I had a down day wondering why I’m even doing it. Am I wasting my time? cwsterling your post gives me incentive to talk to my MO and pursue Trodelvy. I am so glad to hear that you have seen some shrinkage of liver mets. Gives me hope. I do know it will take some time to talk to my MO and get it approved for me since I’m ERPR+
Today I felt better and accomplished everything on my list. Hope, this is the roller coaster you refer to. Sometimes it takes my breath away. 💞
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Easiest MRI I have ever had. All done...results Monday....
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Yay Nicole! Hoping for good news and answers.
My Trial “Scan and Plan” is on Monday. I am actually hopeful and eager to get a good report.This SERD is tolerable- it makes me feel extremely achy like an AI and I have gained weight(not good after working so hard to take it off 3 years ago) but it is so much better than some other drugs I have been on. And the first drug to give me stable disease.
Dee
I read this clip from the blogger “Sean of the South.” It resonated with me so I thought I would share.My thoughts wander toward the breast-cancer scares my wife and I have gone through. I know what it feels like to be subjected to the horrors of Medical Care.
The waiting is what kills you. Nobody tells you that the fear never completely leaves you. Not even when you get the green light from the medical establishment. Once your security bubble is popped, you are always on your guard thereafter.
Which is both a good thing and a bad thing. Good: because it makes you appreciate life. Bad: because trying too hard to appreciate something is not very relaxing.0 -
I am new back to this forum. I was on here 8 years ago when I was first diagnosed with DCIS. I had 2 lumpectomies to get clear margins,followed by radiation, tried tamoxifen for 3 weeks and dr said since I was stage 0 my chances of return was very low so I stopped. February 2021 I had abdominal ultrasound where they found several masses in my liver. After all the other tests I have metastatic breast cancer in my liver. And a small spot on my T6 which has yet to be identified. My doc suggests getting a port in and I will have Docetaxel (chemo), Herceptin and Perjeta. I am 75 and otherwise in pretty good health but my brain is already fuzzy so I can't figure out all these abbreviations and how to post and read what others do.I do have GERD and always thought if cancer came back it would be in digestive area so I was surprised it is mets. We are going away next week before I start treatment. Appreciate any and all advice and questions I need to be asking. Blessings.
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OhioNana1605 - Welcome to the club of which no one wants to be a member! But seriously, the people on this blog are amazing in their understanding, compassion, friendship, knowledge and advocacy. Don't be concerned about abbreviations, just go ahead and ask what you need to. I know some people on this thread are Her2+ (which means that this gene is amplified) and are on Herceptin and Perjeta and will leave it for them to comment more on this therapy and also on the addition of docetaxel. If Herceptin and Perjeta work for you, they can work well for a very very long time. I assume you had a biopsy to see if you were "ER/PR" (estrogen receptor/progesterone receptor) positive as well? Do you know if you are positive or negative for these? The typical sites where metastatic brain cancer goes is bone, liver, brain, lung, traveling through lymph nodes, but of course it can go elsewhere, and it may go to one or more of these spots too. It may stay in one area like bone for many years and then show up in brain or liver or elsewhere. You will see the differences in many of those who post. Also keep in mind that there are local therapies that can be used adjunctive to systemic therapies.
Wishing you best of luck! Enjoy your time away and hope the treatments are very effective for you.
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Nicole - EXCELLENT TO HEAR!! Looking forward to good results.
Dee- In your pocket for the scan and plan on Monday. I am so THRILLED that this drug is working for you and that it's tolerable. And I am super excited that it is an oral SERD as well. Keep us posted.
BevJen - How are you?
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BevJen - Thanks for popping in with an update! I hope praying that your team will come up with a plan soon for the pain and systemic treatment! You deserve a break from this roller coaster ride!
Bliss - I hope that your stent procedure went smoothly and that it will improve your liver function.
Dee - Best wishes for your Monday trial appointment. I hope that the oral SERD is still working! I have the same ESR1 mutation as you do...
BlMike - I'm sorry for everything that your wife is going through. She is certainly fortunate to have you as an advocate!
Grannax - Hoping the Navelbine will help. Chemos tend to work quickly, so you should have an answer relatively soon. Trodelvy has been very tolerable for me.
Praying for successful treatments with gentle side effects for us all!!!
Theresa
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Theresa. When did you start taking Trodelvy? Have you ever taken Navelbine? I have ESR1 too
Do you have scans coming up to see if Trodelvy is working? Are you ERPR +?
So many questions, Sorry Here I am awake in the middle of the night Worrying that I’m not doing the best chemo for me Doc says I’ve built up resistance to chemo because I’ve had so many Trodelvy seems different than other chemo, more chances of working I hope so for you and for the others taking it or wanting to take it
I’m glad the SE aren’t too bad for you
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Is there a Trodelvy thread
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I’ve counted five of us who seem to be in the same boat or at least wanting to be. swsterling, Theresa, S3K5, thrivingmama and ME. I’ve started reading everything I can find on Trodelvy so I won’t have to ask y’all so many questions. With my fuzzy old brain, it will still be awhile till I understand as much as y’all do, maybe never. Lol I read your posts over and over. They really help me.
Have I left anyone out? Do any of you post on a Trodelvy thread?
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Grannax – I just started Trodelvy on 3/19/21. I am ER+/PR+ HER2 low. The ESR1 mutation suggests that the cancer has developed resistance to hormone therapies (e.g. AIs), but it doesn't have any predictive value for which chemos are likely to work.
Trodelvy is only approved for TNBC, so my MO had to get off label insurance approval for me. I will be scanned at the end of May, or earlier if I develop more symptoms. For chemos, I've been on Xeloda, Abraxane and Enhertu (through DESTINY04 trial for HER2 low). Trodelvy delivers a chemo in a more targeted fashion so that it can deliver a higher dose of the chemo to the tumor. The TROPICS2 trial is investigating Trodelvy in ER+ cancer. I have a friend that was stable on that trial for a year, but I don't believe there is any published data from that trial.
Here's a short summary from the Ascent trial of Trodelvy in TNBC that led to the approval.
There is a facebook page for women on Trodelvy that has useful information:
https://www.facebook.com/groups/548907892701469
The last thing that I wanted to do is to add stress to your situation or make you doubt your treatment. I just wanted to offer another option for you to discuss with your oncologist. I'm also heavily pretreated and unlikely to respond to future treatments, so I understand how you're feeling and it breaks my heart. I hope that you will benefit from Navelbine and maybe Trodelvy could help. As my oncologist says, "we are in unchartered territory." You have been such a frontrunner in the local liver treatment area. I appreciate everything that I have learned from you sharing your experience. I care and wish you the very best!
Prayers and Hugs!
Theresa
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Hi, all,
Still in the hospital awaiting surgery on Monday -- mets in heads of femur, both sides -- R hip replacement on Monday, pin in L to follow shortly thereafter (?) Stuck in bed bc of risk of fracture otherwise. Not fun at all.
Hoping each of you is doing okay.
Bev
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Theresa. No you have not given me more stress. My MO told me about the low odds of any chemo working/ the built up resistance, etc. I knew it but chose to focus on having something else to take.
As I absorbed it, the reality hit. Then I read the posts about Trodelvy. It gave me something else to focus on. I know it’s not the magic bullet. At least it’s a little different, in some ways, than other chemos I had heard of.
So, I appreciate the knowledge.
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BevJen- I asked about your hip in another Thread. So... mets in femurs. How about your back?? You were thinking kyphoplasty. Wow, you have had a lot to deal with. And new liver tumors??!! Wow. Bless you.
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Oh BevJen! So sorry you are going through this especially in the hospital (which is always terrible). Both Polly and I are thinking of you and hoping for a successful surgery on Monday. Hang in there!
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BevGen- you are going through so much. In your pocket for the surgery. I care and can’t imagine the feelings you are having. I hope you have someone to talk about all this and help you process. Build yourself up for the tough days ahead.
FYI-I have had both hips replaced before cancer (not at the same time) You can do this and you will get through it!
Prayers going up for you and for the next step in your treatment to be the one to kill the cancer for good. Prayers for your pain to go away and for healing from the surgeries
Dee
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BevJen. Sending virtual hugs. You have been through so much. I hope you find relief soon!
Grannax, my heart goes out to you as well. I know we all feel the weight of each failure and another treatment stricken off our list. It’s so hard. Sending hugs to you as well.
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BevJen- so much at once, so much to take in, so much to process, so much to move forward with. I feel for you and pray for you. Will be in your pocket for surgery and will hang out there for recovery too. 🙏🙏🙏
Bliss - how are you????
Grannax - this road only gets tougher. But at least there are still options!!! Prayers for you.
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BevJen - It breaks my heart that you have been suffering for so long! I will be praying that your surgery goes well on Monday and that your recovery goes smoothly. I will be praying for cancer control and pain-free days ahead. I'm very hopeful that you will find a systemic treatment to control your cancer. You have many good treatment options left. Sending hugs, strength and very best wishes! Theresa
Grannax - Thanks for your response. The reality of metastatic breast cancer is hard to fathom sometimes. I am praying that you will respond to treatment and have more time with your beautiful family!
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Ah, Bev, Grannax, others... just hugs, what else can I say... stay strong, the world needs you, we need you much more than you think.
As for us... Sandra had a surgery on Thursday. I talked to surgeon, he thinks it is successful but out of 5 lymph nodes removed he checked 2 or 3 and they seemed malignant, one not. Surgery was not easy - lasted for 2 hours and they went in through whole 15 cm mastectomy scar, so recovery will be long. Waiting for pathology. Surgeon also said "to be on a safer side, taxanes might be reintroduced along HP". He was optimistic and talked about "hopefully ending this once and for all in the axilla". Ah man, Sandra cried... it breaks my heart when she cries. Sure, we could decide to go for T-DM1 but is it not too early to loose HP when it works so well (last scans a week ago - NED everywhere, except for these nodes)? Docetaxel was brutal two last times (12 cycles in 2017-2018 and 6 in 2019) but what can we do... our summer is almost over without even getting started. I just look at my Vijus and want to cry. This shall pass but... I hate this disease. Saulius
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saulius- thankfully the surgery is over. I hope recovery is smooth. I wish the news was better, but there are treatment options, so that is a positive. As you say the HP has been doing so well and perhaps the taxane can knock this back again and maybe even “once and for all” take care of it. Don’t give up hope amd don’t look too far ahead. I understand how you feel. We all cry much more than we should have to and we keep going even though we are exhausted. You are not alone - we are all here for you and for each other. One day at a time. Praying for you, Sandra, and your son.
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Bev, Grannax, Saulius,
My heart and hopes go out to each of you. May each of you - really all of us - find strength, resolve, and comfort from any source we can as we trudge forward.
Katty
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Bev. I don’t even know what to say. I know the RHR will be painful for a while but the PTs will get you out of that bed. After both hips are healed, hopefully you won’t have the cancer pain in those joints.
Even though it was 20 years ago, I remember all too well how much the mets to my C3 hurt. Back then, they took out my C3 and with plates and screws put me back together so that my head wouldn’t fall off. Then I took taxatere for 6 months.
Just know that I’m sending virtual hugs, wishing they could be real hugs 🤗.
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BevJen, You will be in my thoughts tomorrow. I hope that your recovery goes smoothly and the results are excellent. It might seem like you have a long haul ahead, and that can be overwhelming. Try take it a day at a time.
hugs and prayers from, Lynne0 -
Hi all. I was released from the hospital yesterday. The stent procedure went smoothly and now no pain - on my right side. The gastro doc was very rushed and dismissive of the pain on my left side. Kept telling me my liver is on the right. No kidding. Why am I now having pain on the left? He said we'll see what it is in the ERCP. No mention of it and I'm still in pain. I'm calling him Monday. My brother has had trouble with his pancreas and thinks that's what it is. I've read that gallstones can pinch the pancreas duct. I'm supposed to start Gemzar Monday. Ugh. And so it goes....
BevJen, I'm so sorry for all the pain you're having. In your pocket for surgery Monday. Hoping you'll finally get some relief.
Grannax, wishing you success with Navelbine.
Saulis, I'm sorry the lymph news for Sandra wasn't good. Virtual hugs and best wishes going forward.
May we all find some peace in the coming week.
Virtual hugs and best wishes to all.
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Aaww Bliss, more pain.... just keep at them until they come up with a reason. Although that’s exhausting! Hope you recover from the stent procedure quickly.
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Bliss-
:(:( Hugs.0 -
Bev..oh my gosh...had no idea you were having surgery..I am so sorry!!!! I hope everything goes well. I am confused though I thought the problem was your back? Surgery is not being done there?
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Thanks, Karen. I looked over the report again and it says "no significant pathology over the entire pancreas." So maybe it's ok and that's what I was worried about. I'm hoping it's just trapped gas! Wouldn't that be nice?
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