How are people with liver mets doing?
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Nicole,
No, I do not have PDL1. But I have a huge number of mutations in my cancer, and keytruda was specifically approved by the FDA for that in all solid tumors (breast cancers included.)
I'm with SP -- there is a lot that we do not know about that drug.
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LFF, what beautiful beautiful beautiful photos!
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LFF What amazing photos of a huge milestone for you and your family.
I had my second infusion of cycle three of Navelbine yesterday. Today I’m off to Neupogen shot. I tried to get them for home but found out I have a $500 co pay. Bummer. My car is in the shop for the third time for the same problem. Grrrr. So, my cancer center was able to provide a cab for me today. My daughter and BFF have been sick. It’s been a crazy week trying to get a ride to get chemo and shots. Soooo frustrating. I’m not sure what I’ll do for shots for Saturday and Sunday if my car is not fixed. Grrrrr
If life could just stop while we do our TX, or at least slow down But, no We cope but sometimes it’s harder than other times......
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BevJen , I knew you were on Keytruda and later stopped to have the surgery followed by a long saga of recovery mode. I hope you are close to having a normal life after your radiations. I was on Xeloda some time ago for bone mets and got severe hand/foot syndrome even of lowered dose. So after 3 months my MO had to discontinue this. A follow-up scan showed that the spine tumors were stable or reduced in size. Hope this drug gives you good results. Most people tolerate it well.
Thanks for sharing the information about Keytruda. I haven't come across this in any research papers that I have read. I started Keytruda + Carbo + Gemzar yesterday. My MO said that Keytruda works best when given with chemo. FDA approved Keytruda in mTNBC patients to be given along with chemo and my insurance will not approve Keytruda any other way. My MRI and PET scan showed massive progression - apparently Trodelvy didn't do anything for my mets. I am too close to running out of options.
Grannax2 , it is hard to find a ride to the treatment center and back. Does your local senior center have free rides for cancer patients? Heard that American Cancer society also arranges rides for cancer patients. Hope you find a suitable backup when your family members are unavailable.
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BevJen, So sorry for hyperprogression, obviously it's the last thing one expects. Apparently they are not even sure if its anything to do with the cancer or (more likely?) something going on with the immune system? There was one report they weren't seeing this (as much?) in combos with chemo, but again no idea if that is true or why that would be. Total Black Box, everyone is different. And its not that uncommon either...
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Cure-ious
Yup, just my luck. Starting xeloda tomorrow. My MO only ordered one course of 14 day on/7 day off because I have one more week of radiation, and supposedly xeloda plays nice with radiation. We'll see. I am definitely on her watch list right now -- retesting bloods in 2 weeks to see if this is working.
Pretty scared if they cannot dial this back. It was so quick.Stress level is at an all time high. Have started doing anti-stress meditations and am taking Ativan. Fingers crossed.
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With you in spirit, Bev. If you happen to get liver pain when you start, know that is not necessarily a bad sign. It could mean the Xeloda is working. That happened to me.
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Has anyone heard anything from JFL?
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Hello everyone,
I'm just about to start Xeloda next week ( dose still being arranged). Mets to bones 2014 which was 16 years after primary. Was stable on Exemestane for 3 and half years then mets to liver came along. Stable 2 and half years on Faslodex / Verzinio. Now progression in liver but bones stable.
I've been “ down the rabbit hole" since learning of this latest progression and really scared of Xeloda but finding this thread has really helped. I'm asking about paying for cyberknife treatment to liver as it's not available here in UK on the NHS because I have mets to bone as well.
Please welcome me into the fold
Mermaid xx
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Welcome Mermaid. Your journey sounds a bit like mine. I was also almost 16 years from original diagnosis to mets. Mine appeared in my right pleura and bones. Four years in it spread to my liver.
I would also check out the thread “All About Xeloda”. It’s very active as a number are on that line. To reassure you, I have just come off six cycles which had an amazing impact on my liver mets, completely resolving one lesion and significantly reducing the other. I found it very tolerable at the right dose.
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hello everyone. I’ve been off for sometime and will be staying off the blog although I am keeping up with what’s going on. Just too much happening with me to be writing and dealing with it. I pray for you all every day. I thank God for Dee’s outstanding results and I wish her many many more months and even years of stability on this drug. It seems to work so well for her. I also wanted to say blessings to LFF and thank you for sharing such a beautiful picture of you and your son at graduation. I know that it’s a dream come true. Keep living your dreams. Stay strong. Bev Jen sorry to hear for the rapid progression. Hoping they can dial that back. Stay strong and keep the faith. Ativan helps.
Will return to site when they figure what’s going on with me and when I have a path forward.........until then I lurk behind scenes
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Bev...yes I remember you were given the Keytruda bc of your mutational burden...but I too heard that Keytruda works best when in combination with Chemo. Also...I mentioned it could very well have been the Ibrance that caused that...many have expressed that their oncologists even have seen "an explosion" of mets after stopping Ibrance..and weren't your numbers rising towards the end of Ibrance use and when you thought for a month or more that it had stopped working? Just a thought.
S3K5...why were you on Trodelvy?? My MO said that is for TNBC?
Hope I just prayed for you huge (((((((hugs))))))
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Thank you so much for your reply Sadiesservant, I will check out the Xeloda thread.
Xx
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Hope, glad to hear from you. I hope you'll come back to us soon; we learn so much from each other. I know you had y90 and had maybe had some progression on Verzenio? I hope they're getting things settled down for you. Keeping you in my thoughts.
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Nicole, I was ER/PR positive but after the liver biopsy, the pathology report said it was ER/PR negative. So I started on Trodelvy which didn’t do anything for my Mets. I am probably one of those with “mixed clones”. Who knows
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S3...oh ok...yea you are probably right about that.
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S3K5- I too was ER+/PR+, but now ER- from my recent liver biopsy report. You said "mixed clones", meaning? I have appointment with MO next week to discuss my results and what it means for me. My PR is "weakly" positive still. Trodelvy is an antibiotic drug conjugate, right? My MO mentioned those might be in my future, "antibiotic drug conjugates", but she later said I cannot do immunotherapy---as I have autoimmune disorders. So.... is Trodelvy a possibility for me?
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BevJen, I never considered what do they do to reverse the hyperprogression, will go research about that.. Surely they have had time to figure this stuff out, these drugs have been around a long time
Candy- Trodelvy is not an antibiotic, it is an antibody-conjugated drug, a chemo that is directed to cancer cells by being physically linked to an antibody that will bind to a protein that is only on the surface of the cancer cells (avoiding directing chemo to normal cells, as happens with traditional chemo). So not an immunotherapy per se, because it is not designed to change how your immune cells function.
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BevJen, OK, not sure if this helps, but was reading a 2020 report of a woman with lung cancer and 100% PD-L1 expression who developed hyperprogression after just two doses of Keytruda. Her tumor changed dramatically to 0% PD-L1 and they speculate this has something to do with failure to respond to the immunotherapy, or somehow might be part of the process of hyperprogression.
They report: Importantly, after the patient discontinued pembrolizumab due to the HPD, she recuperated enough to receive second-line systemic chemotherapy with carboplatin and pemetrexed. Despite developing severe diverticulitis during the course of her chemotherapy treatments, she successfully completed 3 cycles of carboplatin and pemetrexed. Patients who were treated with salvage chemotherapy after immunotherapy have shown promising overall response rate (ORR). Although large cohort studies need to be performed to validate the response of salvage chemotherapy, our patient is currently off treatment and has been on active surveillance with no evidence of disease for 20 months.
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Hi Moth,
Thank you for your kind reply. I was diagnosed in March 2020 (in Milan, Italy). I have taken Palbociclib for one year and just started with Fulvestrant.
My mets are only to the liver, but I was told surgery is not an option.
I am worried living in Italy will not give me access to the latest therapies or to trials that may only be available in the United States.Can you tell me how you are coping?
It is difficult to live with uncertainty. I have not told my kids and wonder if I should quit my job ....0 -
Cure-ious,
Thank you so much for that information. It is reassuring to me that my MO is at least on the right track trying to stop the spread.
She has started me on xeloda because supposedly radiation "revs" up the effect of the xeloda -- so again, trying to reverse the hyper progression. I have one more week of radiation, so we'll see what's going on after that (blood work scheduled in about 2 weeks, which would be the end of one cycle on xeloda.)
Your research ability and sharing of information is so helpful to all of us. Thank you so much.
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Cure-ious--- I meant antibody, not antibiotic. I guess I was tired when I typed that (end of the day). But, thanks for the explanation of antibody drug conjugates. "Not immunotherapy per se" so I don't know if I can do those. I cannot do immunotherapy since I have the autoimmune issues. Wonder if my body would do ok with those drugs.
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My SIL’s parents offered their car for me to borrow. What a life saver, they are in Hawaii for six weeks. My car is back at the shop for the fourth time. So, I did get my shots on Saturday and Sunday
I think it’s time to consider my car dead and buy another one. It’s a 2007 and not worth spending anymore money on.
I felt terrible after my Friday shot of Neupogen I know that can happen I do take Zyrtec it was also the day after chemo But everything hurt, my bones, my tummy, my joints Saturday and Sunday weren’t as bad
Now I just have to hope my ANC is up enough for chemo on Thursday
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Oh Grannax I am so sorry you have a lot on your plate right now. Hugs
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Hi y’all, I’m back🤪 Anyone here go through a port removal due to infection? I had my second port out yesterday. Good thing is I don’t need it for treatment. I realize I will need a new one in the future. I am limited to the right side because of a dvt from my first port.
I called my local clinic on Friday about my port looking infected. MO put me on Bactrim and said to call if it got worse. The infection looked worse on Saturday and the Clinic nurse said to go to the ER but call the vascular surgeon’s office first. The on-call surgeon decided the port needed to come out from my description. I stopped elequis and he scheduled me for yesterday - so much better than going to the emergency room.
It's weird to say, but it's a good thing I got the infection. According to the surgeon, the port was starting to show through and we avoided a "firestorm" There was no pus in the pocket so he said to just continue with Bactrim. They are sending a swab and the device to be cultured. He also put me back on elequis.
While at the hospital, the anesthesiologist ordered a chest ekg. It showed a left anterior fascicular block. That was a shock since I have ekgs every time I go to Sarah Cannon and the MO said those readings look fine. I will follow up about that. I just had an echo in Dec. that said my heart looked good. ♥️
Anyone here have left anterior fascicular block? Dr Google said "We found that those who had LAFB indeed had a higher risk of atrial fibrillation, congestive heart failure and death." ugh
Still enjoying my stable disease report.
Dee
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Grannax, I'm glad to hear you have the use of a car, but sad to hear that you are having so many other problems. May better days for you be ahead.
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Geez Dee. If it isn't one thing... No experience with LAFB but sending good wishes and I agree, keep celebrating stable. I'm still doing a happy dance after my follow up chat with my MO on Friday. He used the "R" word... remission. That feels pretty grand!
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Grannax, how fortunate that you have a car to use, but what a bummer about the old one giving out. Crossing fingers for Thursday.
Dee, I'm glad your port gave you an early warning instead of fire storm. I'm sure it still hurts though. I hope it heals up quick and without incident.
SS - YAY! for a such a great report! Congratulations!
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I have really got to learn to re-read the whole post before I submit - dang autocorrect!
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Dee...another stage 4'er on FB has a port on the insider of her arm.....yup above the elbow area inner arm..you should ask about it...I think when I need a port i am gonna ask to have it put there too...
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NicoleRod and BevJen – thank you for the perspectives on Keytruda. I am PDL-1. My oncologist did not push it because saying it has not had good results with BC, even though results have been good for some other cancers. She did not mention the possibility of accelerating it. My cancer became metastatic while on Ibrance, so I was taken off of it. She has mentioned chemo which I cannot embrace, since it did not seem to have much effect on the tumor in 2016, it did not shrink much. She has not mentioned abraxane or Eribulin.. Reading Dr. Google, I guess those are chemo? How are they administered?
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