How are people with liver mets doing?
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Thank you so much. bsandra that is a great way to look at it. A partial response is definitely a step in the right direction. At least some things have gotten smaller. I will hold onto that. Originally they were going to radiate my cspine and I get pretty claustrophobic so I was not looking forward to the mask. So doing the t11 seems like best way to attack the outlier. She mentioned doing proton radiation on my liver too once we get the biopsy receptors back.
Vlnrph and rk2020 that is really good to hear that the liver biopsy is pretty easy. It just sounds scary … so thank you. Im glad it’s pretty tolerable.
Jsniffs is SBRT the same as proton radiation? I’m just learning about the different types of radiation but I’m guessing it’s similar? They are doing T11 so they made the mold and did my markings yesterday. Just waiting for the appointment to be scheduled later this week.
Thank you all so much for the information and encouragement. I felt so much better when I read it this morning. It was a blessing. I hope you all are doing ok today.
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mommacj - Possibly? From this link: https://www.hopkinsmedicine.org/health/treatment-t...
"The term SBRT can be used to describe photon or proton therapy."
I can't remember which was used for the treatment I had.
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saulius and others written it well. Good luck with it all and ir is not over until it is over
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My MO has never mentioned radiation or biopsy. I have liver tumors, none on spine. Is that done? I know it isn't SBRT, but what is it?
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nopink2019 - did the doc biopsy lung? for me they only did biopsy on liver because what was in the lung was too small.
mommacj - After they administered the IV, I felt no pain and I don't even remember the doctors coming in or out of the room. I heard them whispering but could not really make out anything they said.
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My MBC diagnosis came from the fluid that was taken off during my first plural effusion in 2019.
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mommacj,
I had a liver biopsy and it was easy peasy. They used ultrasound to locate a good spot and went in with a long needle. I was in twilight sedation and didn’t feel a thing. I had some referred shoulder pain and they gave me some oxy to have at home. So don’t fear the biopsy
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Thank you everyone. I feel much better about the biopsy now. I appreciate your knowledge.They scheduled it the 31st. Hopefully I can stay with the systemic treatment. That’s my prayer anyway.
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My MRI report came out yesterday afternoon. At least I didn't have to wait the entire weekend. My oncology appointment is not until the 17th but I am sending them the following question:
Compared to the previous scan in early November, liver tumors increased in size and more lesions developed. However, I had essentially no effective treatment until January due to genomic testing, COVID, etc.
Perhaps these spots grew/emerged during that time and are now kept in check by PIQRAY. Is this really progression? I'm uncertain about changing therapy if all we need is a better baseline. Bone & lungs OK via PET.
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vlnrph- It’s a good question and your point is valid. Fingers crossed that Piqray comes through for you.
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vlnrph I think your point is very valid as well and I find myself in a similar situation. My original pet scan was October 5. I started faslodex but I had to have a repeat biopsy at the end of October because they didn’t get enough of a tissue sample the first time for fsh testing so I didn’t start Ibrance until 5 weeks later. I didn’t make it through my second cycle of Ibrance before I got covid and was then not allowed to have treatment in the cancer center for 3 weeks so I was off treatment for a month. My recent pet scan showed good improvement in all of my spine and my mediastinum, they said it looked like the tumors grew larger but then regressed, the small nodules or infiltrates in my lungs were clear and a I had a stable liver met, however I had one new lesion in my spine and one new small one in my liver. I asked myself the same question. What if these spots popped up while I was on one of the treatment pauses? The other areas all responded? She called it a partial response. So that is what I will be asking my oncologist on Wednesday. I feel the same way you do. I don’t just want to throw in the towel on my first line of treatment when it could be effective without making sure that it’s really progression. I hope you get some answers too and I pray you can continue andget good results from pikray.
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vlnrph - There is just no way to know because of the timing. About all you could do, if you remain on the same treatment, is to watch tumor markers (assuming your cancer throws off tumor markers), and have the next scan a bit sooner so it doesn't get out of hand if it is in fact progressing.
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My wife is now approved to switch from abemaciclib to xeloda. Here's hoping it works like it did years ago. The abemaciclib was not kind to my wife. Just too much discomfort to continue, and rising tumor markers.
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husband11 - what a relief that your wife can now start Xeloda. I’ve been hearing that some pharmacies are short on Capecitabine. I hope the shortage doesn’t impact her start date. Best of luck and keep us updated.
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Dear Husband11, that is great your wife will start capecitabine again. Can you remind me for how long did she take it and for how long was she without it (just interested)? From what you told us, it should work well, so fingers crossed. Hugs to you both,
Saulius
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Thanks all for the support.
When she was first diagnosed with stage IV liver mets, approx 6 years ago, it (xeloda) was the first treatment she took. It worked like gangbusters for all of the year that she was on it. It hammered her tumor markers down to the single digits. As the door was closing on getting access to palbociclib on a compassionate basis, she elected to switch to palbo. She switched to palbo and was on it for over 4 years. That was a very tolerable treatment. However, slowly her tumor markers rose, so she then switched to abemaciclib and had been on it for one year. It was a miserable year, too much stomach problems with abemaciclib, and over the last 4 months, her tumor markers have steadily risen, and she has developed ascites again. So, now we return to xeloda / capecitabine.
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Fantastic news Husband!
I found it very tolerable also and worked super well for 2.5 years.
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Dear Husband11, the pause that you wife had (5 years!) without Capecitabine, and the fact that it did not stop working last time, gives very very good chances it will work again! Fingers crossed therefore, and we are all waiting for great results!
Saulius
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Jsniffs and all... I had the TRAVERA testing done..and the results are little ..well I am stunned about Afinitor. (keep in mind I am TNBC NOW...) the Ixabepilone is IXEMPRA (which I was interested in) I am shocked about Ribociclib??!!!here is the message from my oncologist ...I am cross posting... I would love all thoughts...
I did look at the Travera results. So they are grading the tumor cells against the different chemotherapies and rating them 0-100. Scores above 50 suggest response, scores below suggest no response.
Everolimus 100
Vinorelbine 100
Ribociclib 100
SN-38 63
Lapatinib 14
Doxorubicin 0
Abemaciclib 0
Carboplatin 0
Gemcitabine 0
Docetaxel 0
They had enough cells to run 10 different drugs (sometimes it is up to 20 but this time they had enough to do 10).
Travera interpretation of the three drugs I had specifically asked for:
- Vinorelbine
- You will see from the formal report that we did see positive response for this
- Ixabepilone
- Unfortunately, we ran into QC issues with our supply of this drug and were unable to include it.
- This was an unusual occurrence; we would typically have this drug available.
- Enhertu
- We have not yet validated the exact load of Enhertu
- We did run SN-38 (the active metabolite of Irinotecan, an alternate topoisomerase I inhibitor)
- You will also see in the report that this drug elicited a positive response
--> Therefore this means that vinorelbine should be a consideration for us. I would also be testing your tumor again for HER status to consider Enhertu. Even if you are HER2 negative (0), I would consider getting Enhertu on right to try as there are reports of activity even in 'negative' cases. So this is just something else for us to consider for the future. I don't know what to make of the docetaxel being 0. We were thinking of using abraxane and I have to say that I can't rule it out just because it's sister medication docetaxel had a 0 response rate. But perhaps we try something else earlier.
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Wow nicolerod!! I've been so eager to see what happened with Travera for you. It looks like you have some options!! 100 seems like a great score! And, I'm so glad to see that they have some indicator/test for Enhertu (despite its test still being worked out). I'm thinking the Everolimus was effective because your tumor might be sensitive to the mTOR pathway? Maybe there are clinical trials that include Everolimus or Ribociclib that you can look at? I am so interested to see what direction you take with this. The skin mets I have are triple neg, while everything else I have is ER+. Therefore, I'm thinking Travera testing may be in my near future as well to figure out an optimal treatment for everything. Thank you for paving the way!
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nicolerod, what a useful tool the TRAVERA test is . I would like to have this test to know what to try next, unfortunately I am in the UK . I hope the medics can use this information to get you on medication that brings stability/ nead . Thank you for being a pioneer
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So I asked the Travera guy a few questions..like why would I come up at 100 for Afinitor when I am TNBC and if they have used this test for heavily pre-treated people and TNBC here was his reply:
- Regarding the number of drugs analyzed. Unfortunately, we are always at the mercy of the specimens we receive and this means we sometimes do not have enough cells to adequately run all 20 drugs in the panel. I know this can be disappointing, but our hope is that the insight provided on these 10 drugs is useful to your oncologist decision process. We always run as many drugs as we can, with the volume of cells we can successfully extract.
- I apologize for the challenge with Ixempra. It's important to us that every step of our process meets high quality standards. While we normally would have run Ixempra, there was a QC fail in the pre analytical work for this drug and we could not report on this therapy this time.
- Were there other Stage 4 patients in our data set that were heavily pretreated and used the recommended therapies?
- As previously discussed our data is encouraging, but it is early. We've tested over 200 hundred patients, but only have outcomes on 49 so far. "Outcomes" are defined differently based on the disease state, but it accounts for clinical indicators including, but not limited to, reduced pleural effusions, improved scans, reduced presence of metastatic lesions, etc…
- The vast majority of patients we've tested have advanced stage disease, with heavy pre-treatment, facing 3rd, 4th, or later lines of treatment.
- With all of this in mind our predictive accuracy on the 49 patients we've taken through the full process is 84%, meaning our predictions aligned with clinical response 84% of the time…the number of patients is small, but this means we were "right" in 41/49 patients. Having a clinical response that aligned to our predicted sensitivity.
THIS FINAL QUESTION IS OF A COMPLEX CLINICAL NATURE. TRAVERA CAN SPEAK ONLY TO THE CELLULAR SENSTIVITY OF THESE DRUGS IN OUR HANDS, I.E. "DID THIS DRUG ELICIT A RESPONSE? YES/NO". THE BIOLOGICAL EXPLANATION OF "WHY" IS BEYOND OUR ASSAY'S INHERENT ABILITY…THAT IN MIND, WE HAVE PROVIDED TWO POSSIBLE EXPALANATIONS THAT MAY HELP PROVIDE CLARITY ON WHY THESE SEEMINGLY "OFF TARGET" OBSERVATIONS CAN OCCUR.
- Your assay showed a response to a drug that isn't for my "TYPE" of breast cancer, how can this be?
- While most drugs receive approval for and are "indicated" for a specific diagnosis, hormonal status, mutation burden, etc…it is often true that these drugs hit multiple pathways and can show "off target" effects. There is ample published evidence to show the "off target" effects of many drugs and it is not uncommon that we observe sensitivity to drugs in cells that may not be known to have a certain mutation or hormonal status.
- You noted in your email that your tumor was previously Hormone Positive and has since "switched" to TNBC. One potential explanation is that previous therapies effectively killed off the ER+ cell lines, but after a period of time without those targeted therapies, the respective cell lines had an opportunity to return or grow back-up. This is a phenomenon often referred to as "Re-sensitization"…meaning that drugs which stopped working previously may now begin eliciting a response again after a significant break.
- Neither of these explanations are based on deep understanding of your unique circumstances and/or pathologic findings. I cannot know if either of these explanations make sense for your circumstances or unique disease, but I hope this provides some basic explanation as to why we sometimes see cellular response in therapies that might otherwise be unexpected. I'm sorry we cannot more directly address your questions or the reasons your cells elicited a response to these unexpected therapeutic agents, but I hope that this provides some additional insight for consideration.
I hope that this is helpful.
0 - Regarding the number of drugs analyzed. Unfortunately, we are always at the mercy of the specimens we receive and this means we sometimes do not have enough cells to adequately run all 20 drugs in the panel. I know this can be disappointing, but our hope is that the insight provided on these 10 drugs is useful to your oncologist decision process. We always run as many drugs as we can, with the volume of cells we can successfully extract.
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nicolerod - While Afinitor (Everolimus) is traditionally used for ER+, I am seeing multiple clinical trials where it is currently being evaluated for TNBC. Also, my understanding is that original TNBC versus "TNBC" that occurred from a change in receptor status are considered to be somewhat metabolically different. That might explain the unexpected results.
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Nicolerod - I’m so happy to see your posts. I’ve been thinking about you and praying that you catch a break and find an effective drug. I’ve never heard of Travera so I quickly checked out their website. What amazing technology!! I found the response to your questions intriguing. I’m curious if Medicare or supplemental insurance cover any of the cost. What kind of material is necessary for this test? From your post, it sounds like they need a sizable specimen.
I’ve kind of written off Afinitor as a last resort but maybe that was short sided. it just goes to show you that our cancers are not only mutating but they are potentially re-sensitizing as well. I understand you are in Florida for a trial. Please keep us updated. I am most anxious to hear and praying that your bilirubin stays within the normal range.I had a CT scan today. The downside to the trial I’m on is firstly that I have to get CTs and not PETs. In November, I had a PET that showed progression in 2 bone areas (SUV<4) and my liver. Then 2 weeks later, the trial required a baseline CT. The CT did not pick up the bone lesions. That didn’t give me a warm fuzzy that I’ll be getting only CTs on the trial. Secondly, my CT results are delayed because they are sent to a different location to a radiologist that reads all the trial scans. They want “their guy” to read them. Fine, but I like to review my results before my doctor’s appointment so that I can formulate my questions. If I don’t have something by Monday, I’m going to call. I’ll bust if I have to wait for my March 23 appointment. That’s what happened after my last scan. They had me wait. My tumor markers are creeping up, I’m having sporadic bone pain but I feel no pain in my liver. Maybe I should just sleep until my results post. Sigh.
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rk... I had the testing done for free...since this tecnology is new they were able to do that but you oncologist has to order it and be on board and you IR bc they need a LIVE sample so the test kit has to be shipped back on ice (they provide it) FED EX next day air. I hope your trial goes so well!!! Thank you so much for your well wishes I sure do need them.
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That is just great what the Travera test is doing. I remember some time ago, there were private clinics in Mexico that were purporting to do testing of multiple drugs on live cells. I really hope this is proven to be reliable and catches on. Could save a lot of grief and needless progression.
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Yes Husband..very true. As you can see in the guys response to me its effective and accurate with 41 out of 49 patients.
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Hi everyone,
My mum has sadly progressed on ibrance/letr and a lot. She has ascites, mets in liver now over 10cm and peritoneal carcinomatosis.
Her oncologist wants to start her on AC chemo. Does anyone have any experience with this chemo and how bad it will hit her? Also, I'm reading some scary stuff about ascites and peritoneal carcinomatosis.. makes me feel like she has NO chance to survive this. It breaks my heart. Does anyone have any encouraging experience or can you point me to the right topic please.
Thank you all, a concerned daughter
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Hi brilliant ladies (and men!)
I got my Caris test back. Here are my 3 options per my oncologist. I kinda know what I want to do but would love your insights. On background--Diagnosed MBC 2019 after 10 years remission from stage 1. Er/PR+ Her2 Low. I have mets to liver and bones. Am in pretty robust health otherwise--blood work pretty normal etc.
1. Stay on Xeloda (I had a tiny bit of progression on my lat scan, but Onc. wasn't worried and now my (usually accurate) markers are lowest ever after 17 mos.) PLUS Get a Y-90 or similar zap to my liver to control the lesions there. My oncologist thinks this could extend Xeloda quite a bit longer.
2. Move to Enhertu which is apparently an effective drug but I worry re side effects. Dr. said there are some interesting new options for HER2Low in the pipeline that will have less side effects and may be trialed in next 12 months or so. So perhaps this stays in back pocket and I hope for a trial?
3. I now have ESR1 mutation so Oserdu (newly approved oral SERD) is also an option, I did well on Ibrance for 2 years. and apparently anything over 12 mos on Ibrance is a positive indicator for Orserdu effectiveness. But Onc. has not used it on a patient yet, so I wonder if it's best to wait and see how it pans out clinically once more women are on it?
I am inclined to option 1, assuming Radiologist is on board. Oncologist thinks it could give me a good amount more time on Xeloda. Which will save me money on pedicures and sandals this summer as my feet are so red and ugly I can't even show them to my dog.
Would love to hear from anyone on Enhertu who will say it's not really as bad as the women on the FB board say... or anyone who has had a Y-90 or similar liver zap? Or anyone else who has thoughts...
THANKS so much. x-posting to Xeloda thread too.
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