How are people with liver mets doing?
Comments
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Thanks, Moth, for steering me in right direction. I need all the help I can get. Missed you on Mon zoom.
Guess we all want to know what’s ahead but only God knows.
Had Moderna booster yesterday and slight fever.
Thanks everyone. Have a blessed evening.0 -
I am having SE like several of you described, low grade fever etc. from my third vaccine yesterday.
My doc has ordered an iron infusion for me. Sure hope it helps. I feel like all energy has drained out of me.
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Thanks Moth. No rash to speak of. There often is when I am seriously itching but then it subsides. (I suspect the rash is from scratching/rubbing.) I do have some tiny dots of red now in various places on my legs but again, I suspect that this is due to scratching over the course of the week.
No kidney numbers but they were good at the beginning of August and I don't think those would change that quickly. They just did liver numbers. I've been using some moisturizer but don't have dry skin at the moment. It's much more of a problem for me in the winter with cold weather and central heating. The funny thing is, it seems that whenever a body part gets warm (not hot... just warmer, like under the covers) the itch starts. Bizarre. Oh, and no edema. Ankles/calves super slim.
Now, I have this weird headache, maybe from interrupted sleep? Not sure if the antihistimine will make the headache worse but it does seem to have helped a bit with the itching. ????
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2nd testing on PDL1 from liver sample..still negative...but MOTH....my oncologist is not counting on that being 100% accurate since I did originally 2 years ago from breast biopsy come up PDL1 Positive and since the literature you sent me that I gave to her. We are gonna go with Halaven/Eribulin first...then keep Trodlevy>>?? in our pocket... Any thoughts??
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Yes definitely sounds like the PD-L1 from liver samples is not always reliable. And anyway, I think it only matters for atezo and pembro? I don't think Trodelvy is as dependent on PD-L1?
You did well on Halaven, right? So I agree that would be a good thing to try.
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Moth ...yes I did well on Halaven...we THOUGHT it may have stopped working bc my itchy bites were returning but we don't know for sure..so we are gonna give it another try.
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I got my appointments for the iron infusions. But first available is September 15. UGH I’ll have two, one week apart.
Meanwhile, I did start feeling better a few days after my third vaccine so a lot of my fatigue was due to that. I was even able to drive over (62 miles) to see my granddaughter in her HS Cross Country Meet. I’ll post a pic
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Lovin’ the T Grannax!
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Thank you Grannax2 for your reply. My left lobe is full and right is staring to get there. Except for knowing that I feel fine except for the Abraxane Se
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Thank you moth for your replay. Taxol did work well for awhile. Maybe that's why he chose Abraxane. For me Havalen wasn't a good fit for me at this time.
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never thought I’d see this day- sending oldest off to college.
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That's wonderful, LFF! Happy day, maybe a little sad too, that he's leaving the roost?
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LFF Great family pic. Such a big event for you.
Thanks, Karen. She goes to a private Christian school. I found this T for $5. I wear it to all of her sporting events. She’s on the swim team, too. Fun
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Grannax and LFF - Thanks for sharing your beautiful photos! What joy in the midst of so much going on in life today. Embrace the moments!
Dee
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LFF so happy for you that is awesome
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hi everyone. Hopefully everyone doing the best they can. I still have liver Mets but I’m onnnafinitor I had to stop do do my radiation 10 rounds wbr. It’s kicked my butt. I’m practically bed ridden. 2 weeks out. Hopefully week 3go back to me. They offered me chemo for the brain fluid I have. I think I willl pass that up. I want to enjoy time I have left. It’s hard w two children. Anyway. Bless you ladies. I pray everyday. One day u can b great. Next day completely sick
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Hi Hopfull2, I'm sorry to hear you've been so worn down by the WBR. I hope you can get some energy back soon and feel better. You must be facing difficult choices regarding the lepto mets treatment. I'm sorry. Thinking of you. Hope your family is doing ok.
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Dear LFF, what a photo... you are one happy human being. Knowing how hard you had to work for this... I am speechless. Congratulations!
Dear Hopfull2, there are days when we are completely done, broken, hopeless. But then we wake up one morning, and we are stronger than any disease, and we move on, and we have what to fight for. Embraces and best wishes towards you.
Dear Nicole, how are you in general?
Saulius
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Hopeful I don't know what to say....im sorry
Saulius...thanks for asking I think today the esphagitis is getting a tiny bit better.....but where my fracture is C7 and my T3 hurt still...I don't know how long that will take to grow new bone to be fixed. I am set up to start chemo Tuesday (a week from today).... I am tired and cannot really do anything but I am hanging in there. I just started Ivermectin not for covid but for cancer 3 days on 4 off....today is day 3. As far as from the Y90 I am ok so far.
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Dear Nicole, thanks, those are great news - I was very worried as after last Y90 you had much trouble. Thanks God this time it is better. Please rest as much as possible and let's continue to hold on to science and hope. Lot's of hugs, Saulius
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Hopfull2, moth posted this on the Breaking News thread last year:
pembrolizumab (Keytruda) for leptomeningeal mets - not just in triple neg breast pt. Pts in this study weren't even all breast ca pts
"Pembrolizumab (Keytruda) led to a 38% central nervous system (CNS) response rate and was well tolerated in patients with leptomeningeal metastasis (LMM) from solid tumors, according to phase 2 results" https://www.onclive.com/view/pembrolizumab-shows-i...
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Lynparza being delivered on Friday. Starting it this weekend.
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LFF how wonderful to see this milestone for your son. Thanks for sharing the happy photo.
Grannax2, it’s great to see you out enjoying your granddaughter’s track meet.
Nicole, it sounds like we have the same motto: Fall down seven times, stand up eight. Hope you feel better soon.
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Candy...so you are BRCA positive?
SP....YES..you betchya!!! I have to say I am so glad that I had 100% faith and confidence in my IR...that when she said due to the location of the tumors this time she didn't think I would have the same outcome as the first Y90..looks like she may have been correct. I am so glad that I have an IR and MO that I truly trust and love! I know for me, God is a huge part of that. I pray for Him to guide both of them and cover and lead them to any treatments that will help kill the cancer in my body.
Has anyone heard from Hope
. ?????? MOOMALA??? 0 -
Nicole- Yes BRCA positive. Only actionable mutation noted on Tempus report.
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Grannax2 & LFF - Great pictures, You all look so happy! Your photos put a huge smile on my face, thanks for sharing!
NicoleRod- so happy to hear that this Y90 had no where's near the problems you had with your last Y90- praise be to God! I pray a similar prayer also, that God will guide and direct my doctor to the best course of treatment for me to heal me of my cancer.
Hopfull2 - I am sorry to hear that you're not feeling well, hopefully that will turn around real soon and you will be feeling better! What Shetlandpony spoke to, I am on Keytruda. I've had two cycles with it. Se not bad- just some bowel issues, and those issues could be from the Abraxane that I'm also on.
Candy-678 - wishing you much success with Lynparza
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Hi Ladies, this is my first post but I have been haunting this group for a while! I was diagnosed in May after 16 years in remission with ER+ ILC. After 11 years of hormone therapy i was told that I had to stop as there was no clinical evidence to support further treatment. Five years on I have multiple tumours in liver and spine and local recurrence on chest wall. First oncologist said I should start in AI and Ibrance; next appointment that changed to Paclitaxel as worries about liver enzymes. Have had nine cycles of weekly taxol and struggled with SE, not least neutrophils. Finally had CT scan which showed no change to the liver or bones, with small reduction in chest wall. My oncologist ( third one), says I should stay on the taxol as I am stable; I think I should be hoping for more as a first treatment. Am due to see another oncologist ( number four) next week; any wise advice
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Melard..sorry for your situation.... you were truly blessed with many many years of remission..wow. i don't think I have met anyone that had 16 years remission... I would say don't panic yet as I failed 5 treatments in 2 years... Are they going to do a biospy to see what your cancer is showing now?? They should. I am surprised that of 3 oncologists none have suggested this yet?
Thanks Lafe....yes we need to keep praying
Candy...ok...well at least something showed you may get a great response then to the new med!!! I hope you do!
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thanks for your reply Nicolerod; maybe remission is not right term🙄! I mean from primary diagnosis to recurrence. I had biopsy in May, but only of local recurrence which had become weakly ER+. This is the only one responding to the taxol. I live in England and every expense is spared in our struggling NHS! However I do appreciate how relatively lucky I am to get free treatment too. Have you had biopsies of different tumours
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