How are people with liver mets doing?
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Grannax, I'm so glad you are feeling better. Hoping your right lobe will be better behaved than your left. And, how sweet of your family to make special arrangements (kids' school and all!) for your special weekend!
Nicole - so sorry to hear about your mom, and you're right, that's exactly where you need to be. Holding you both in my prayers.
Dee - hoping for good news on your CDK 2/4/6 trial results <---I was just going to shorten that to "trial results", but decided that didn't sound quite right. lol
Moth - sorry about the rashes...unless that's actually good news. It's uncomfortable either way.
BevJen - I feel you frustration - we just want clear information...from someone who seems to know what they're talking about.
S3K5 - Hoping for good results on your post MW scan.
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Was thinking today, about the Covid vaccine.
Have any of you mention the vaccine to your MO? Should we get it with liver involvement? With our various treatments?
I messaged my MO nurse today. She said they have not discussed it yet.
Just wondering. Hopefully it will be available to the high risk people in the next few months.
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As long as its not a live vaccine, which the front runners are not, they are merely rna fragments, vaccines are typically recommended for even immune compromised patients. However, an immune compromised patient may not develop as strong of a response and immunity from the vaccine.
I would avoid the Oxford vaccine or the Russian vaccine (as if that were possible to get) because they use a live adenovirus as a vector.
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Thanks Husband11. I know several people that question the vaccine. Not cancer patients, just friends. Is it being rushed, is it safe. But I want Covid gone.
So... as immunocompromised, it may not work as well for me???? So I may get the vaccine and still could get Covid???
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The good news is that the two leading vaccines, the Pfizer and Moderna vaccines are 90-95% effective by early estimates. That is far better than the standard flu vaccine. As well, the Pfizer vaccine has shown itself to produce as good of immunity in an older crowd, age 60 plus as younger people. That is also superior to the standard flu vaccine. These two vaccines use new technology, rna fragments. It sounds like they are onto something really good with that technology. As well, in the people that did get vaccinated and still got covid (5-10%), they did not develop as severe of symptoms. So there was potentially benefit for all who were vaccinated. All of this is sounding really promising for the vaccines. No one can say for sure how a cancer patient or one on immune suppressing chemotherapy for instance will develop immunity, but they do recommend vaccines for people in those circumstances, and even patients on immunosuppressants, such as transplant patients. Cleary, ask your oncologist, but I would be really surprised if they said not to get the vaccine.
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Thanks again Husband11. I messaged my onc's nurse. She said they have not had that discussion yet about their patients. If they say OK, I will be getting the vaccine. I just hope that the majority of people do the same. I live in an area of anti maskers. And if the majority of the population doesn't get the vaccine the virus will still be with us.
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I think if there are enough obstinant people who refuse to get vaccinated, and as a result the risk of covid 19 continues in perpetuity, then we will have to get re-vaccinated periodically, just like the yearly flu vaccine.
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Hi everyone, I've been MIA The past few days. I saw my oncologist on Wednesday and her first choice of IV chemo was Taxol. I was diagnosed in September but they think I've had this in my liver since my first diagnosis 4 years ago so my liver is pretty infiltrated so I do not qualify for any targeted therapy. Her plan is to shrink the tumor's as much as possible, I have some in my bones as well, then maintain on hormone therapy.
This past couple months have been a whirlwind with an underlying condition that they think is called paraneoplastic syndrome where as my body's immune system is reacting to the byproducts of the chemo and cancer cells and causing inflammation. So I have been in some sort of Excruciating pain most days for months. Since July I had Shortness of breath that landed me in the hospital twice in August. If it wasn't for one of the lung scans catching a part of my liver, I'm not sure if this would have been caught. So the bottom line is I requested G/H Because it is hair sparing. I know that sounds Totally ridiculous and vein. But I have had so Much thrown at me and my life has turned Upside down, as you all can relate to. I'm just not mentally there to look like a cancer patient again. My doctor said she would respect my decision, and basically Said there are X amount of treatments, and I'll probably be on all of them at some point. So my thought was why not have the hair sparing one while I still have hair? I have been totally stressed since I made the decision. Mainly because she said if my blood cells dropped too much I need a blood transfusion which I don't want. But it sounds like you guys Think Taxol is the way to go. I'm just so scared. I knew how my body reacted to the Xeloda, I think it's the fear of the unknown. I also know there is a chance of neuropathy with taxol too It's the whole losing up the hair, which I've gone through before and I know it's devastating. I just feel so mentally weak.
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Also, I’ve been trying to edit my footprint but the system Doesn’t let me
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Pamela, I wonder if its the web browser you are using? I can't edit mine either. The option doesn't show up. I am using the old Internet Explorer.
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Pamela, my heart goes out to you. You have been through the ringer, actually are still in it, and who can blame you for feeling like one more thing, even “just” hair loss, seems overwhelming. The decision is for you and your oncologist to make, not us. Eventually, if you do taxol at some point, you can use cold gloves and socks to stave off neuropathy.
Husband11, that is a good, clear explanation about the vaccines. I hear people saying they do not want the vaccine because they don’t trust it. I think the average person does not actually know much about how clinical trials work, and how they are done to show both safety and efficacy. Many of us BCO members, on the other hand, have learned about a trials. As for me, I’ll be camped out in line at midnight for the opening day of covid vaccine! Haha. I hope my cancer center will offer it to me like they did the flu vaccine, even though I did spike a high fever that night. Maybe the fever killed off some cancer cells.
Grannax2, thinking of you and sending healing thoughts.
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Pamela23- that makes sense that if your liver is really infiltrated that they want to go for shrinkage fast. The cdk4/6 really just “puts it to sleep“. I care that you are suffering so much. I understand going through multiple conditions - it’s soooo hard. Prayers for your chemo combo to work and you keep your hair!! I understand that too! Keep us informed and feel better.
Hopeand gratitude
I found the link for the poll. I tried to insert the graph but couldn’t make it work
http://www.researchtopractice.com/COCBreast20/2/Matrix/4
Dee
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Thanks Dee!
Best of luck with scans!!!!
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Shetland, I'm right there with you, camped out at midnight awaiting the vaccine! I want/need to be with my grandchildren. I think the vaccine will get me to my happy place.
Pamela. It sounds like you feel like you're stuck between a rock and a hard place. I'm with you. I totally get the hair thing. I now have my appointment to start Halaven on December 15, it's on the books. I'm still praying that my genomic testing will show new mutation with an actionable TX that does not cause hair loss and will be easier on me.
Bev Jen, I called Tempus yesterday. My results will be ready on November 27. I called because they kept sending me email about docusign. I wondered if I was holding things up because I had not signed it yet. I finally was able to email it back signed. I don't know if my MO will want to wait and discuss it with me on December 15 or if I could ask her to call me with the results sooner. I'm voting for sooner. Because if there's not a new mutation, I know I will need a wig. If there's an alternative, I won't have to buy one.
My sister is coming on the 13th to go wig hunting. She'll probably buy it for me. I think the stores have strict rules about returns. Or they don't allow return at all. So I'd like to know before I buy. She lives in Tulsa, about 5 hours from me. Plus were both going to try to get tested and quarantine so it will be safe for her to stay here a few days. I already had a negative test so I'm trying to go as few places as possible.💞
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Grannax,
For what it's worth, Tempus gave me a date and the report arrived before that date. They emailed it BOTH to me and to my MO on the same day. I think what they wanted you to sign (and it sounds like you did) was the HIPAA statement releasing them so they can email it. If you don't get it by next week, I'd call your MO and ask her to email it to you or send a paper copy so that you can see it.
For me, there were no new mutations, but I have several actionable ones that we haven't hit yet, so that's okay with me. Also, my IR had indicated when this particular lesion showed up that he wasn't entirely sure if it was new, or if it had been "hiding" in plain sight, just not picked up by the other scans. If so, that would be consistent with nothing new going on with me. That's my story and I'm sticking to it for now!
It's nice that your sister is coming to see you and will help you with the wig shopping. That will be helpful.
Good luck all the way around.
Bev
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Pamela...what is G/H????
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Good to know,Bev. I had no idea they would send it to me, too. You have several actionable TX that you have not done yet? That's great. Always good to have something in your pocket. Love the "nothing new" story. Sounds good to me.💞
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nicole, so sorry to read about your mother. Do you live close enough to see her often? My mother led a full life of 79 years. Her last few months on Hospice were hard to watch, she died of MBC mets to lung and brain.💞
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Grannax,
Yes, I have the Pik3CA mutation (can be treated via piqray) and two ERBB2 mutations which can be treated via neratinib (like Shetland pony is on). I also show high tumor mutational burden, which allows me to be treated by keytruda as well, which is now FDA approved for several solid tumors that have high tumor mutational burden. So I've got those three treatments in my pocket. My favorite (though not my MO's) is keytruda, because the FDA has also approved that treatment for every six weeks. That sounds glorious to me -- 6 weeks vs. every 4 weeks. We'll see what she has to say. I have a CT on December 1 -- my first since May (though I've had other scans in there for various reasons). I guess that will be the defining moment for me.
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Thank you all for messages about my mom. Crazy enough she seems to be getting better...but her life will never be the same...she will never be able to live alone, walk unassisted etc...
Grann, My mom is in Long Island I am 5 -6 hours away in VA my sister is there from NC taking care of her through the end of Dec..then she will have to move in my son and his new wife's 1 bedroom apartment...She doesn't want to leave NY and shes not well enough to travel to mine or my sisters house right now...
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Nicole- Forgive me, but without rereading your posts, didn't you have a liver procedure (zapping) last week? Forgive me if I am wrong.
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Pamela23 – I so appreciate your honesty! My heart goes out to you. This disease is devastating and maintaining some sense of normalcy and privacy can be very valuable. Personally, I believe that trying Gemzar/Carboplatin first is very reasonable. If you want to ensure minimal hair loss, you might want to consider cold capping even with this combination. I used Penguin cold caps while on Abraxane (same chemo class as Taxol) and, while my hair thinned, I maintained full coverage. Some infusion centers offer Dignicap scalp cooling systems which other women have used successfully. Hugs, prayers and very best wishes!
Grannax – Congrats on having your first Halaven infusion scheduled. Your ability to get things done quickly is admirable! I'll be praying that your recovery from your second ablation will be easier and that Halaven will be very effective!
BevJen – It's great that you have 3 potential next treatments. I believe that the original Enhertu trials included patients with ERBB2 mutations, so Enhertu may also be an option for you. If you are HER2 low (IHC 1+ or 2+) then the case would be even stronger. Praying that your Dec 1st CT scan will show NO progression and that you'll get good news from your IR this week.
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Theresa45,
Thanks for your note. As of right now, I do not show HER2 low at all-- just the mutations. But I will keep that on my list to ask my MO about.
I have my Telehealth visit with my IR tomorrow. I will be interested to hear what he has to say about the MRI report. I will update the thread once I talk with him.
Pamela, thinking of you.
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Nicole, my mother was four hours away. My dad was still, living so she was able to stay at home. The four kids came to their home to try to help with her care. Fortunately, I had just finished my TX for my second DX of BC. So, I could drive up and stay a few weeks if necessary. I was the only one not working. You, however are not in a good place to help with her care. That must be heard for you.
What mutation did you say you have? It's actionable is Halaven? Unless something new shows up on testing, I only have ESR1. Of course I'm praying for a new one show up, the one you have would be a good one.
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Hi Arolsson--I'm wondering whether you can speak to your experience in the SYD985 trial? just got put into a trial for tnbc and they want me to do SYD985 instead of taxol, but i havent spoken to anyone who has gone through it yet! happy for any guidance
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Cross posting here so if you read the liver treatments board, don't read this twice!
Okay, people, SH --. Just got off the phone with my interventional radiologist. I had posted that I thought there was an error in the MRI report that was posted, and I was hopeful that all would be okay when I talked to my IR. NOT. He apologized profusely but he says he missed a little bit of the tumor that they were ablating, and that it might be growing. He gave me two options -- go back in and re-ablate or watch and wait. I am not going to watch and wait when he says that it's already growing. (And he knew that I would say that.) So I have to go through this again whenever they can schedule me for it.
Not happy about having to go through with it again but he says that the rest of my liver (my biggest concern) looks good so I want to keep it that way.
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Sorry to hear that BevJen. How soon can they get you back in?
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Husband 11,
Just got scheduled for December 11th. Covid test (of course) on December 9th. Fun, fun.
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BevGen
That news stinks😢 The Good part is he is willing to go back in and must think you are up for it!!🙌🏻
Prayers for an easy ablation. 🙏🏻
Dee
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Dee,
Yeah, it does stink. I think this is part of the "bad" of large cancer centers. The procedure was done (or at least part of it) but a Fellow with my IR supervising. I don't know for sure, but I don't think my IR would have missed it. He seemed irritated with the Fellow near the beginning of the procedure when, before I fell asleep from the sedation, I looked at the sonogram screen and asked the Fellow which of the two things that showed up was the one he was going after -- and he indicated that it was the site that was ablated in 2019 (until the IR relieved him of his duties at least temporarily.)
I'm up for it -- but it knocks me out for like two weeks. Not ideal. But I also want the little bugger out of there.
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