How are people with liver mets doing?
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Grannax,
My heart goes out to you. I'm sure this is extremely stressful for you, between all of the testing and all of the waiting and all of the meetings. Try to keep the faith here -- until they tell you no, you are still in the running.
I can't' believe you've never had a CT before? What were your docs using to gauge progression? PET scans?
Good luck with getting this all settled out. As everyone always says on these boards, once you have a plan, things become easier.
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Nicole,
I seriously doubt that only your IR in DC can read your scans. All interventional radiologists are radiologists, and especially if they know the background of your situation, they should be able to figure out your scans. I think that maybe they can't read them fully at Inova is because they aren't used to reading scans on someone who has had that much done on their liver. In any event, if you wanted to do a consult with someone else, they could always call your IR at Medstar and she could walk them through your scans.
I would completely put that out of your head.
If your onc says no to the combo of trodelvy and keytruda, then I'm sure she will give you reasons why. I would try and get the names of the docs who the people on FB see so that you are already set up to try and consult with them.
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Bev..whats the point in consulting with them if I cannot go there for treatment? I cannot live or fly or drive to boston or NY every 3 weeks for treatments....?? I didn't mean no one else can read my scans..I meant that the reports of the scans are from INOVA and they say things like there is a huge MASS when really its dead from the Y90 so the new doctor who I consult with will see that and not understand its dead..unless I tell them or they call medstar..thats all I meant..just a hassel
So the Trodlevy and Keytruda is in trial (I believe phase 3)...anyway the one woman I spoke to being treated in NY is NOT in the trial and her doctor is giving her the combo and insurance is paying it!!! I think maybe because both drugs are FDA approved just not approved in combo maybe her insurance missed it??? I don't know... I wrote back to my MO and told her about it all...and asked if we could try to see if insurance would cover it?? OR if I got accepted to the trial for it in NC could i get treatment in VA since they are both FDA approved drugs?? I will have to wait and see what she says...I am leaning towards the Trodlevy....
Thanks for hearing me out....
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Nicole,
I flipped to TN. I asked for Keytruda and my current MO said no because I am not PDL1 positive and it would be outside standard of care. I asked if it was because of insurance coverage and it was still No even if paid directly. A prior MO I had was all keen on me getting Keytruda when I was ER+ but then she quit mentioning it; I wonder now if she tested me for PDL1 and didn't tell me I was negative. That was when i was responding to Femara so i didn't know enough to pursue.
Finding a special MO is the key. Big institutions are no guarantee of a good MO but those organizations may be able to work around the rules more than regular doctors.
There is another drug, Samuraciclib, that has been fast tracked recently that was mentioned on another thread. I will ask my MO to consider but have low expectations.
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Coco...I was originally PDL1 positive...and my MO knows that liver biopsies checking for PDL1 are not accurate..so bc I was previously positive she believes I can get covered. IF i cant there is trials also for Trodlevy and Keytruda even for ER+ now too...so eventually PDL1 isn't going to matter .
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Nicole, I agree with you that eventually Pdl1 won't keep patients from treatment. In the meantime patients die. There is good evidence Pik3 mutation, which I have, works for TN too but there is no Piqray for me. Same standard of care issue.
My point to you is I feel your frustration to believe there are life saving drugs, if we could get them. My current MO didn't even know about Trodelvy and if Abraxane fails me I can educate and pursue it with her because I know it is in current standard of care.
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Coco..I totally agree with you about people dying in the meantime..and now its even worse things were getting fast tracked and now it seems like everything just stopped
. !! Yes advocate for yourself...that is what I am doing...I LOVE LOVE LOVE (and those that know me well on here know lol) my MO!!!!! but I think she is probably a little annoyed with me right now bc in the past 2 weeks I have sent about 10 messages... OH well... I love her, but I also am paying her salary...I have to push the issue I think... I just hope that if she cant do it maybe I can get into the UNC trial and get the drugs here in VA since they are both FDA approved and readily available....0 -
Bev Jen, thanks for the encouragement.
I have had CTs before until about ten years ago when I had a mild allergic reaction. Since then, if I have to have them,they dose me up with steroids to prevent the reaction. During my first y90, four years ago, I guess they didn’t give me enough steroids and I had a very bad reaction. My whole body turned red and the nurses had a hard time waking me up. Of course, to have a y90 or Microwave Ablation they have to do a CT during the surgery but they were extra careful and I was out.
I’ve been followed by PET and abdominal MRI for the past five years.
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Below is a post I made on the clinical trials thread quite a while ago. Maybe discuss with your oncologist, Nicole? I wonder what the TNBC type is likely to be when ER pos bc flips to TNBC, and if there are implications for treatment choice.
Here is an article describing different subtypes of triple negative (ER- PR- Her2-) breast cancer. Basal-like type 1 responds well to chemotherapy; basal-like type 2 is likely to respond to immunotherapy; and the AR-positive luminal type appears to respond to anti-androgen therapy. This word "luminal" is the same word used to describe many ER/PR positive breast cancers that are hormone-driven (at least at first). So perhaps this third type uses AR to grow. They are testing anti-androgen drugs for this type, I assume Xtandi or similar.
https://www.bcrf.org/blog/emerging-therapies-triple-negative-breast-cancer
About testing for AR -- The pathology report for the last breast biopsy I had (2014) reported on AR along with the standard ER, PR, Her2, etc.
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Hi Grannax.
Coincidentally I was just speaking to a friend whose husband had a similar treatment for (I think) a blood cancer. I don’t even think it was a trial. I know it was similar because we joked about the irony of spending our youth trying NOT to her herpes(!)
anyway he is stable now for what’s that worth.I hope you get selected! It’s very interesting and hopefully promising….
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Shetland, thank you for the link. Very informative. My MO treats flipped TNBC like any other TNBC.
Nicole, I know a few women here were on Keytruda since their tumor burden was high. As some who flipped to TNBC, I know your frustrations. My MO has given me Trodelvy, Adriamycin, Anti-androgen (Xtandi), and now I am on Keytruda with Carboplatin+Gemzar. Since there was progression during Trodelvy, my MO will not give me Keytruda and Trodelvy combo. Is there a reason why your MO is not giving you the combo? In my opinion, one on one chat with your MO will clear your doubts better then emails or messages.
Grannax, I had a similar reaction with the CT contrast dye. Now I get only PET or MRI.0 -
S3K....I will be talking to my MO probably on the phone Friday after my scan Thursday. Aren't you ER+? If so why were you on Trodlevy? The reason I believe she is not giving (offering) the Trodlevy and keytruda is bc its in trial....even though as I posted above I just met someone that got it NOT in trial....I got her MO's name she is at Cornell in NYC.....
SP... How do I find out if I am Basal like 1 or Basal like 2 is that something found on a TEMPUS report? I know that I came up AR- 0% on the recent (2months ago) tempus....
I do know that Cureious on here showed some studies where they say that receptor flippers to TNBC from ER+ (like me) respond better to immunotherapy than starting out TNBC...so there is that.
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Nicole I think your onc has to read the paper or talk with one of the authorsto figure it ou. As far as I know, the TNCB subtype does not appear on a pathology report.
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That is great news Shetland, thanks for the update. Wishing you a speedy recovery.
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Cocogal- I have the Pik3 mutation and Iam on Piqray with tnbc. My doctor submitted the request based on that I have the mutation. It was approved. I’ve been on piqray for 4.5 months and it’s helping me.
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KarPC, It's wonderful Piqray can work for TN. And there is research confirming it. My mo just won't budge outside standard of care. She said Piqray is only for ER+. I doubt she would even ask the insurance company. I may be able to get it in a clinical trial but the trial is a double blind trial, so there is a chance I would be assigned to the placebo arm. I don't like the odds there.
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pbsoup. That was my first thought, too. Lol. You’re gonna do what?!?! I’m happy to hear that your friend is doing well. I know they have tried HSV on lots of types of cancer. They have actually injected it into some tumors, like glioblastoma. Infusions are the newest thing. Obviously, for people like me with innumerable tumors, injecting would not work
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Grannax,
Appreciate your details on what you are going through to get on the trial. I suspect I will have to go through something similar. I've been on several trials but never a Phase I.
So sorry to hear that your liver is not doing well. It is a good thing that they seem to be fast-tracking you to get on the trial. I am sending positive vibes your way that this will wipe out your cancer.
Big hugs, Susan
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Dear Nicole, so you essentially want to try Keytruda+Trodelvy, i.e. both at once? As your MO said, both of them could work well, so maybe it'd be wiser to go with one at a time + modern chemo? Also, please do not forget Leronlimab (traget: CCR5) - it was fast-tracked by FDA.
For Grannax and others: could you also check with your MOs about Dendritic Cell therapy? Pretty cheap, easy to make, can be matured with your antigens (from tumor sample or from cell lines), can be made from your blood or blood of your 1st line relative (parents, children). In ~50 % of cases work well for TNBC and some HR+ diseases. Mechanisms are pretty well known - matured dendritic cells teach your lymphocytes to recognize cancer cells. We have done it, and who knows, maybe this is why we are where we are today. I think it is worth a discussion with your MO, could be another viable and good therapy/option.
Saulius
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Saulius you said "maybe it would be wiser to go with one at time + modern chemo"....what did you mean, I can get Keytruda with chemo (taxol)..is that what you mean??? .. Trodlevy I cannot as it is still in trial so no keytruda..but my MO messaged me last night and said she will ask the pharmacy if they can get the Keytruda with the Trodlevy.(but probably wont be able to).....BTW I cannot do the trial as you cannot have had any tretment prior to applying??? This came directly from the director at UNC here is what she said "Generally you would need to be treated at the site running the trial (in this case dana farber or UNC). That trial only includes patients who have not yet received therapy for metastatic breast cancer so I suspect you would not be eligibile."
Also the drug you mentioned... Leronlimab ?? I looked it up and do not see it being prescribed yet..and also is that an immunotherapy I am not sure I understand it I see it targets a specific mutation CCR5 would that show on TEMPUS here are my results do not see it...
Considerations from our molecular tumor board
- The CHEK2 mutation may predict for a higher likelihood of responsiveness to PARP inhibitors.
PD-L1 negative
TEMPUS xT (TL-21-5VG9SNSS) Liver specimen collected 08/20/2021 (Report date 08/31/2021):
MS StableTMB – 7.9 m /MB
CHEK2 p.C420Y Splice region variant - LOF 89.0%
GATA3 p.P409fs Frameshift - GOF 33.4%
CCND1 Copy number gain
FGF3 Copy number gain
FGF4 Copy number gain
FGFR1 Copy number gain
PAK1 Copy number gain
RSF1 Copy number gain
VUS:
FCGR2A c.906C>A p.N302K Missense variant NM_001136219 60.5%ARHGAP39 c.2056C>T p.R686C Missense variant NM_025251 42.4%
ZNRF3 c.2042C>T p.S681F Missense variant NM_001206998 33.3%
WNK1 c.2176_2219delins(46) p.I726fs Frameshift NM_213655 32.9%
FANCM c.4366C>T p.R1456C Missense variant NM_020937 32.6%
NBN c.2029G>A p.D677N Missense variant NM_002485 31.6%
CDKN1A c.549T>C p.D183D Splice region variant NM_001291549 30.6%
SYNE1 c.10941A>C p.E3647D Missense variant NM_182961 25.9%
DOT1L c.3613G>C p.A1205P Missense variant NM_032482 25.9%
SYNE1 c.14924G>A p.G4975E Missense variant NM_182961 22.3%
SYNE1 c.2875C>T p.L959F Missense variant NM_182961 21.8%
SRSF2 c.536C>T p.S179F Missense variant NM_001195427 13.8%
MALT1 c.1768A>G p.M590V Missense variant NM_006785 11.7%
AMER1 c.1253G>A p.R418Q Missense variant NM_152424 8.8%
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Dear Nicole, exactly, I wanted to say start pembro+chemo, and then if it fails, sacitizumab-govitecan, or vice versa, and you, as I understand, want to start both pembro+sacitizumab at once (is that approved at all?)? CCR5 is fund in TNBC and other diseases, and FDA is fast tracking Leronlimab which is an antibody blocking CCR5 (like trastuzumab - ending in "MAb", means "Monoclonal Antibody"). Don't know if CCR5 is associated to any of these mutations you listed from your TEMPUS but could you ask your MO when you meet/phone if you can be tested for it (IHC?) or maybe something already shows the association? I mean, you do not need to test for it now but it is another very powerful drug, probably first "herceptin" for TNBC. Canadian early phase trials did very well with it and that is why FDA is fast tracking it. Saulius
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Saulius, this is good information. I am currently on Pembro+chemo and once it stops working,
I am hoping something new will come along for TNBC.
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Thank you Saulius...I will ask her about it....but if its not FDA approved...we wont be able to get it right now... so she sent me a message here is what she said....
"Nicole - I can ask our pharmacist if they would be able to prescribe Trodlevy + Keytruda I am not positive since it is still being studied to combine trodelvy and pembro, but I can look into it. My vote is to combine the pembro with a regimen that has been studied more (taxane or gem/carbo), personally."
I am still pretty torn over Trodlevy or Taxane + Keytruda. I am not eligable for the trial of Key + Trodlevy as you cannot have had ANY treatment for MBC ?!?!?! What the HECK , right?!?!? So stupid...So ....I have to say I don't know why but I am leaning towards the Trodlevy...my MO either way I will have to do either treatment at some point.
I heard Gem/Carbo is HARD!!!! Anythoughts?
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Dear Nicole, sure, Trodelvy is a good choice (my gosh, how lucky you are to have access to these new drugs!), as well as Keytruda+chemo. So, two options is better than one, especially when targets are different. The other can be chosen later, if needed. Saulius
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Nicole. I took GemCarb. The hardest part for me was my HGB. It went down to 5.2 and I had to be admitted for blood transfusion, two units. I think it lowered my WBC also and I had to wait a week to get my infusion. Then, she lowered the dose. But remember I’m old and so is my bone marrow. So, that might not happen to you.
I’m getting closer to being accepted into the trial. My labs look good enough and my liver BX is scheduled for next Monday. I still don’t know anything about my meds and CTs. Waiting.....
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Thank you grannax.
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I agree with Saulius - two options are better than one. I was on Trodelvy for 5 months and when the scans started showing progression in liver mets, my MO switched me to Keytruda + Gem/Carboplatin.
This is my experience with Keytruda+Gem/Carbo but everyone is different and some may breeze through this! I had some nausea with Keytruda/Gem/Carbo combination and fatigue. Keytruda causes inflammation in joints and also causes muscle aches. My Pain specialist has started me on Celebrex and low dose prednisone, which helps. With this regimen, I couldn't continue working due to fatigue, so I had to take short term disability. After two cycles, my blood count started going down (WBC and platelets). Neulasta Onpro helped with WBC but nothing could be done for the low platelets. I had to skip chemo and get only Keytruda. So my MO has dropped Carboplatin. Since 6 weeks, I have been on Keytruda + Gemzar. This combo is definitely more tolerable than with Carbo. I have fatigue due to Gemzar but it is definitely tolerable.
Three months ago, my scans showed stable mets in bones and liver (no progression). My MO attributes this success to Keytruda.
Now I am at 6 months time point and today I am scheduled for my PET scan. I hope the liver and spine mets are still stable and I can continue on the current regiment of Keytruda + Gem.
Tomorrow I'll have a spine MRI to map for radiation to my pelvic bone and L5 area. Has anyone had radiation to Pelvic/hip bone area? Any complications due to this? I'll cross post this question on the bone mets forum.
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Thanks SK... I wonder if my MO would just do the Gem + Key....and not the carbo you are like the 3rd person that told me once they dropped the carbo they were good...
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Hi. Has anyone developed nonmalignant abdominal ascites and did it gradually dry up?
I have had one parencytesis to remove fluid, but feels it came right back.
My MO suspects my liver is a little beaten up from Y90s and Taxol. She says it should reabsorb. Is she giving me false hope? I am so uncomfortable, plus with swollen feet.
I am off Taxol as the side effects were becoming harsh. My ANC was not getting better..0,5 and platelets were low around 45k.
My next tx is Afinitor/Aromasin and during this week off, looking at trials.
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SandiBeach, if your liver is beaten up, it might be causing the ascites. Protein in blood controls the fluid balance in the body - it sucks the water back into blood from the tissues. And it's the liver that produces most of the proteins in blood.
So if your total proteins and esp albumin are low, that might be the cause. In that case, when the liver recovers a bit and gets better at dealing with the proteins, it should definitely improve.
btw, if you're interested in supporting your liver during while it recovers, eat low fat, high fiber, no fried foods, no alcohol, avoid tylenol if you can, I've also heard lemon juice water and radishes are good for supporting liver health but not sure that's very evidence based....
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