How are people with liver mets doing?
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Aroisson,
What a wonderful Christmas gift -- that is terrific. I, too, am glad that you shelled out for the F1 test. For you, it was definitely worth it. Continued good results!
Dee,
Hope you have a calm weekend waiting to start up with your new trial. Hope this turns things around for you -- but wow -- great results on the bone scan. The puzzle here is -- why do some of these drugs work on some mets and not on others?
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Sandibeach, Congrats on your great report!
Arolsson, So good to hear your great results too!
Nicolerod, With you in spirit on Tues. Wishing you a smooth procedure and an easy recovery.
I read here all the time and feel for everyone going through difficulties. I'm learning so much from you all.
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Arolsson - thanks for the updates coming on SABCS. And thank you so very very much for sharing your story. I hope the lynparza continues to work for you for a very long time. It was so awesome to hear real hope. Brought tears of happiness and I am.praying for you.
Grannax- sorry you are having such a hard time with this. Hope your PCP can give you dine answers and a lath forward through all this.
With you Nicole on the 22nd. Let hope take a stronger hold than worry. Prayers on their way.
Dee - some good news! Good luck with the SERD trial!!!
Have a good weekend everyone!
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I wrote a long post and somehow lost it. I’ll try again.
Moth, you are exactly right. I got to read the report. Radiologist is concerned for a leak in the gallbladder wall. He says it’s contained though.
Focal defect along lateral wall with small contained bile leak adjacent to right hepatic ablation cavity.
My IR did not mention anything about bile duct she I talked to him.
I will probably hear from my PCP on Monday after she has time to put lab results with CT report. I wonder what she’ll have to say.
Meanwhile, I’ve had a couple of better days. I sort of had a steroid crash yesterday evening. Still, it seems like I can walk and breathe without gasping for air, I have not had any night sweats or much pain. That sounds like improvement to me. 💞
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bevgen
Your question of “why drugs work in some mets and not others” is very much part of the metastatic mystery.
I think that is why we are pushing for local treatments to whack-a-mole certain tumors while we find the right systemic that treats them all.
It’s also why we are getting tumors tested for NGS and liquid biopsies to see if there is a difference.
One day we will have a cure- it’s good to see some scientists and doctors who push for that now, rather than just “prolonging our life while preserving our quality of life” as the goal.
FYI- I have not had bone mets, but the recent “all clear” scan is a relief!
DEE
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NR - in your pocket for y90 on Tuesday
Grannax - so sorry you are having such a tough go - It strikes me that your IR is only looking at the results from his perspective, not yours.
Hopefully, your PCP will have the answers you need.Arolsson - great scan results! That's a huge reduction on your largest tumor. Even more amazing if you were being told there was nothing more to be done.
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Thanks Dee and NicoleRod, not least for reminding me of how others are doing! thinking of all of you. I can't imagine getting through all the side effects and biopsies everyone has been enduring.
Sending big hugs to all, as long as a hug doesn't make your liver pain worse : )
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Dee...what is tumor testing for NGS???
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Nicole - NGS is "next generation sequencing". It's a method used by Foundation 1 and others to look for mutations, amplifications etc. Here is how the NIH defines it: "A high-throughput method used to determine a portion of the nucleotide sequence of an individual's genome. This technique utilizes DNA sequencing technologies that are capable of processing multiple DNA sequences in parallel. Also called massively parallel sequencing and NGS." (although they use NGS in the definition so a little confusing). They can look at whole genomes, exomes, etc.
If interested, here is a short review article from 2018 with information relevant to BC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277731/
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Nicolerod-
Next-generation sequencing (NGS) is a technology used for DNA and RNA sequencing and variant/mutation detection. NGS can sequence hundreds and thousands of genes or whole genome in a short period of time. ... The capacity of its massive parallel sequencing offers new opportunities for personalized precision medicine.
Foundation, TEMPUS etc.DEE
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Sorry Dee! Nicole did direct her question to you!! I wasn't sure you were online.......
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Hope..thank you...and Thanks Dee...ok I didn't realize its just the testing that F1 and Tempus use
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Dear Arolsson, wow, I am so happy for you. Again, you are such an example of how to "turn things around", and your optimism is very up-lifting. I also followed SABCS'20 but mostly focused on IO and HER2+ treatments... Dear Nicole, let tomorrow be a day of new beginning! Saulius
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I passed through the seven levels of the candy cane forest, through the sea of swirly, twirly gumdrops, then I walked through the clinic room door in my Christmas socks! (Elf Movie fan)🎄
I love how they decorate their doors here throughout the year to bring some cheer!
I started my new SERD trial drug today at SCRI. 5 pills twice a day with a 500 calorie meal. Easier than last trial! 🙌🏻
I'm going off line for the holiday starting tomorrow. Merry Christmas!🎁
DEE
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Dee,
Love the decorations -- that is really neat. And happy that you got started on your new trial. Hoping that all goes well for you.
Merry Christmas to you too!
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Two months ago my wife switched from palbociclib and letrozole to abemaciclib and exemestane, owing to a significant rise in her tumor markers. Scans didn't indicate progression, but her tumor markers went up 3-5 fold over a series of 3 blood tests. At one month into abemaciclib plus exemestate, her rate of increase in tumor markers had slowed significantly. Now, at the two month mark, her tumor markers are falling. CA-15 fell 13% and CEA fell an amazing 31%. Scans show stability. I wanted to share this with the group to help support the idea that not all cdk4/6 inhibitors are the same, and that a switch from one to the other may work.
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Husband
Wow, that's something. It could be the combo of the new cdk4/6 plus the new AI. I wonder. Terrific news, and thanks for passing this along.
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Wow, Husband11, good call on switching. So glad the markers went back down! Thanks for sharing this info. Isn’t abemaciclib the one that has some efficacy even without an accompanying hormonal therapy? (Thought definitely good to have both.)
Arolsson, I know it was a few pages ago, but your story really made me gasp. Thank goodness you got the genomic testing and a new treatment! Sending you lots of hugs and good wishes.
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Yes, abemaciclib is the only cdk 4/6 inhibitor that has show efficacy as a monotherapy. We are blessed with an oncologist who is knowledgeable and thinks outside the box, in that trying exemestane could also be the key to it working. My wife was able to get access to abemaciclib on a compassionate basis, and that is also a great blessing that the timing was right, and our Onc was promoting it.
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husband- I wonder if the tide is turning toward trying abemaciclib after palbociclib. A few years ago my MO said she would never do that. Wonder if her opinion has changed.
Great news for you and your wife
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I really don't know where the consensus is on making the switch from one cdk4/6 inhibitor to another. I want to relate my wife's experience to get it out there that some times it may work. She will have her tumor markers done again in 6 weeks, and she will have another set of scans in 12 weeks.
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Husband thank you. I have progressed slightly on I/L and now on Faslodex only, as told no benefit to switching cdk4/6 inhibitors. Will pass your info on to my MO. They know this is coming due to clinical trials....but here in Scotland they do need to recognise the benefits sooner.
Hope your wife does well for a good long time!
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it’s been a crazy day. I’m 21 days out from my second MWA. Turns out that time, my body and prayer have healed my body.
My PCP and I had a televisit today. All my symptoms have gone away. No fever, no night sweats no pain and as of today no SOB.
But she told me about my labs from 7 days ago. The CReactive Protein, an inflammatory marker, was 125. It’s supposed to be under 10. I was definitely inflamed. My WBC was 14,000. So, she is having me come in to repeat the labs tomorrow. If everything looks back to normal then she’ll release me.
I do feel weak and still tire easily. But I think I have definitely turned a corner. Thank goodness. I don’t think I’ve ever been so sick for three weeks.
Now I can move forward. As soon as they release me I can set up my chemo appointment. I imagine it will be the first week in January.
I wasn’t able to catch up on everyone. I will tomorrow.
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Grannax- Thank God. Hugs.
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Grannax,
Such good news. I am so happy that you are feeling better. Wow about those numbers. Hope the labs go well.
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Grannax - so happy to hear you are recovering! What a time you have had with this. Hope all keeps improving for you.
Husband 11 - thanks for sharing the news. Interesting that a MO would shift therapies based on tumor markers rather than a scan. But good to see that the tumor markers are declining and that the new scan shows stable. Praying that this trend holds and your wife does well for a really long time. I was on Ibrance but had to switch to VERZENIO because of low ANC. When new mets appeared in my bone, they kept me on verzenio as it was controlling liver mets and switched me from letrozole to exemestane plus Faslodex and Xgeva. Have been stable since. Thank the good Lord, and I continue to pray for stable disease for sometime. A long time. A very long time.
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Grannax - Thank goodness that your are finally feeling better after the second microwave ablation!!! Three weeks is a LONG time to feel unwell. I'm praying that you will continue to feel better each day and that you will be able to start Halaven in early January.
BevJen - I'm glad that the recovery from your repeat microwave ablation was relatively easy. That tumor should be gone for good!!
Nicole - Praying that your Y90 procedure went well and that your side effects will be mild.
Arrolson - Congrats on the amazing results with Olaparib. Thank goodness that you paid for the Foundation1 test! I enjoyed one easy year on Talzenna (another PARP inhibitor) and would love to try a PARP inhibitor combo trial (with chemo, immunotherapy, etc.) at some point.
Dee - I'll be praying for awesome results for you on the ARV-471 trial! You have done such an amazing job at researching and advocating for yourself!
Husband11 - Thanks for sharing your wife's results with abemaciclib/exemestane after rising tumor markers on Ibrance/letrozole. I have a couple of friends in my mets group who have tried and failed to get insurance approval for abemaciclib after progression on Ibrance. I will encourage them to look into compassionate use of abemaciclib.
Happy Holidays to everyone and may the New Year bring healing for us all!
Theresa
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Hi all.
t Y90 went well she got both tumors and said everything stayed contained in the tumor so no leakage. She was able to get both tumors. She has already scheduled me for next Y90 Jan 26th...that will get the remaining tumor and the cryoblated area from Oct 2019. I asked if the tumors in the cryoblated area came "alive" again...she said no its the area around the margin..or "marginal area" she said that the Y90 should completely get it and she is not concerned. She also said that she prefers Y90 for the liver over Cryoblation. She prefers cryoblation for kidney and most bone procedures. She will consider cryo on my bone mets but only when they are causing pain. My sacrum does cause pain but not considerable. She also mentioned that she feels Microwave ablation which she does also causes the most side effects to the liver (in her opinion) Grannax...thought you might find agreement there from your experience.
So as far as how I feel...she prescribed 40mg of Nexium that she wants me to take for. 4 weeks... my insurance wouldn't cover this bc its available over the counter..I got the over the counter one but its 20mg every 24 hours...so I am taking 2. I don't understand why the Y90 can cause bad stomach/acid issues but it can...and shes right...all night and this morning I feel like my stomach is really really SORE...hard for me to explain...but like bruised sore...especially after eating..but I took 1 nexium and felt better than I was woken up at 3 am with pain again so I took another..my liver feels relatively fine right now. She also prescibed a 5 day steroid pack to deal with inflammation (here goes my consitpation) and pain killer (which you all know I wont take) ... she said next around she has to put me more to sleep...apparently I got extremely itchy from the fenteyal...not like allergic but they had to keep stopping procedure to scratch me lol.... so next time...constipation from being more sedated will be a for sure issue for me....
. I would say besides the stomach my biggest issue is extreme fatigue (which she said it would be) so I am just resting.Husband11 I am soooo soooo soooo happy for you and your wife!! My MO is going to do the same combo if we circle back to endocrine therapy next...or Affinitor/Exe.
On a side note..if I do not show ANY other new growth in liver at next scan which is Jan 19th...after she does the Y90 on Jan 26th I will be considered NED in liver.....(of course there are probably microscopic things we cannot see..) but...you get the picture....thats the reason my MO is willing to try endocrine therapy again bc she feels the liver will be more under control at that point.
**edit...maybe she prescribes the nexium also because of the steroid they are so hard on the stomach.... I just dont know that acid pain can feel like "soreness" that is what my stomach feels like? strange
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Nicole- so good to hear your news! Rest up now and take really good care of yourself as everything settles and heals - pamper yourself - in prep for next round! Sending you prayers and virtual hugs.❤️❤️❤️
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Grannax, so glad to hear you are feeling better and over that very bad spell.
Nicole, that is great that the procedure went so well and that you have NED to look forward to.
Dee, i know you said you are off line, but i pray for your success with the serd trial
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