How are people with liver mets doing?
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candy - can they switch you to verzenio? Other SEs but not the ANC issue. I went off ibrance onto verzenio for this very reason. Liver mets still under control - for now. Fingers crossed and thanking God.
Also, if you have to go off and liver mets active, might be good time to consider local treatment like Y90
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sorry Moth - this disease takes and takes. I try to find things to “replace” my plans. Finding new things I never would have considered before. It helps....
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Candy, my liver mets grew very fast in 3 months while on both Letrozole and Ibrance. I had developed the FGFR1 ampification which probably stopped both drugs from working. It also didn't help to have a grade 3 cancer. I lasted 39 months on I/L, so not too bad. Now on Capecitabine. (Xeloda)..been 6 months. Doing well
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sandi- thank you for adding your response. 39 months is great although I am sure the progression was disappointing. Happy to hear you are now doing well. Question - did you get a biopsy upon progression to find the FGFR1 mutation?. Were the tumors in your liver stable by PET (meaning still some uptake) or was there no Uptake while on ibrance? Trying to understand the phenomenon. I am on verzenio
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HopeandGratitide, I have reliable TM Ca15.3. It started to trend upward, which triggered scans. In Jan 2019, the liver MRI was suspectful, but not definitive, bone scan neg and PETCT had no uptake. March 2019, CA 15.3 tripled and liver MRI showed widespread disease in both lobes. Had liver bx, sent to F1 which showed FGFR1 amp mutation. Switched from I/L to Xeloda. The June MRI shows liver is responding. Next scan is Sept. My cancer has always been aggressive, grade 3.
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Thank you, Candy. Shetland, I have one wig and two hair pieces ready and waiting. It helps to be prepared. Have you started on a new med to help with adrenal insufficiency? 💞 If so, what it?
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Hopeandgratitude- I had thought of that too--- Verzenio with more GI side effects, but less percentage of neutropenia. I mentioned that to the new MO when I second opinion consulted with her and she said she had not heard of moving laterally from one CDK to another. Could I keep the Letrozole/Lupron hormonal therapy and move to Verzenio? Or would I need to go to Faslodex with Verzenio? If the hormonals are still working, I do not want to change that part of the equation. I do not have any evidence that the hormonals have stopped working. Just the issue with the neutropenia. You are on Verzenio with Letrozole? And you switched due to neutropenia issues? How low was your neutropenia? PM me. I could use you as an example with my MO for maybe changing to Verzenio.
Sandi- I am grade 3 also. Cycle 32 on Ibrance now.
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Sandi - thanks for the information. My new MO, who I love dearly and she is a smart cookie, does not rely on TMs at all and instead has me get PET scans every 3 months. I had been getting TMs with initial MO and was at first hesitant, but then got to be more comfortable with them, especially when they dropped when I had a complete metabolic response in my liver. So, some anxiety at not seeing them as well as anxiety at seeing them. I realize these tumors in m liver may light up once again (they are smaller nw by CT, but something still there that just doesn't light up with PET) and I hoped to avoid seeing a multitude more of them appear when there is progression. I have only been on verzenio for 16 months and I pray I am on it a lot longer, but one never knows. My first sense is that if I do get multiple mets and don't have progression elsewhere, I would biopsy but then go for Y90 and then move on to xeloda, just to decrease the tumor number and burden as long as possible.
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HopeandGratitude,
I know that many of us share your love/hate relationship with tumor markers. I literally get a pit in my stomach when I see that they've been posted on my patient portal. It's not fun.
Just a suggestion when/if you progress -- rather than having your mind set on xeloda (or any drug) it might be worth your while to have a biopsy of anything new and then have genomic testing on it. That way, another therapy may be identified for you that may be more effective for your particular tumors. I recently had, along with my metastatic breast cancer discussion group, a zoom call with a locally well known MO who recommended that if something new appears, even if it's only been a relatively short time since a biopsy, it's generally worth it to get a re-do.
I, too, am a fan of local treatment (had a microwave ablation last summer to a liver lesion) but with all of the new drugs coming out, etc., it's worth it to biopsy and find out what's going on, especially considering what this doc had to say.
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Thanks BevJen - Agree. I know I will want to jump quickly, but my MO has a calmer head than mine and will ensure I move stepwise. I just know it's going to be a hard day when my liver lights up again or if/when another visceral met appears. Mine is Grade 3 and I fear the aggressiveness of that. Almost 1.5 years and I still haven't really accepted it yet. I do feel fortunate I have gotten 16 months from CDK inhibitor, but if possible, I will take a couple years please and thank you.
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Candy, I had severe nuetropenia while on Ibrance/faslodex. My MO gave me Nuelasta shots which helped with my blood counts. I had to get blood transfusion for low hemoglobin.
I take it your doctor has tried nupogen or nuelasta to bring up your counts?
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S3K5- I have posted more about this on the Ibrance Thread than here. I have been fighting this neutropenia since the end of May. My old MO gave a dose of Neulasta. I read that growth factors ( Neulasta and the such) is not normally used with CDK's . The protocol is usually holding the med and dose reductions. When I brought this up to my MO, she did not like that I questioned her. My new MO has not suggested Neulasta yet.
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S3K5- I have been posting about this issue on the Ibrance Thread mostly. I have been fighting the neutropenia since the end of May. My old MO gave a dose of Neulasta. But then I read that growth factors (Neulasta) is not usually given with CDK use. Normal protocol is dose reduction or holding med. I mentioned this to my MO and she was not happy I questioned her. My new MO has not said anything yet about giving Neulasta.
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Hi all.
I had my consult with the RO at Hopkins today.
I have driven there more than a few times but today...OH MY WORD!!!!! My husband and I literally saw a woman take her pants down on the sidewalk and just go to the bathroom....we were both "traumatized" to say the very least. Its also horrible just trying to find the doctors office....Unfortunately though for me...my IR is there and he is the HEAD of the IR department so I may have to go back if I do the Y90 on liver mets.
I was actually surprised he gave the RO at my cancer center really good praise saying he is very skilled in Cyberknife (SBRT). Any way. I liked him because he is definitely willing to treat with local therapy and not just rely on chemo (which has yet to work for me). He said the SBRT to my sacrum would take like 5 visits or so. He also made it "seem" like radiating the C7 isn't as big of "DON'T DO IT" as the neurosurgeon seemed which I was very taken-back by...but did agree that there is not a rush to do it right now since I have no symptoms there and that if I did want to then he would also have me consult with the SPINE RO there at Hopkins. He did say that radiating my liver mets he would do over 3 weeks!!!! Instead of a high dose at less visits...I definitely do not want to commute to Hopkins (an hour and half to 2 hour ride depending on traffic) for 15 days. I liked his idea though about how he would do it....but I'd have to see what the RO at my place says but the RO at my place specializes in Neck and Head not Liver...and the Liver guy doesn't have good reviews
Now I most definitely won't go with him if I do the SBRT for the spine only because since he gave the RO at my center good praise why go in there if I don't have to thats if I even do the neck. My main questions were about if SBRT is better to the liver mets than TACE or Y90...he said he doesn't really think 1 is better its just less invasive than T or Y90.
That was pretty much it. Cross posting.
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well I had my MDACC zoom appointment. My MO talked with me for an hour and a half about my scans, getting my bloodwork trends and clinical trials.
Bottom line is my current treatment has allowed multiple small diffuse mets to form in my liver and that concerns her. My headaches are not going away so brain scan on Monday.
If the brain is ok, I stay on current treatment and go to Houston in October for next set of scans and hopefully another biopsy.
Meanwhile she wants me to look into the FORTRESS trial and CDK 2/4/6 in Nashville. I found a research doc in Kentucky who is willing to try Lutathera off label to target the Neuroendocrine. Plus I still have the NIH doc who says I may qualify for his vaccine+ immunotherapy trial when it comes out in November.
It is so hard to know what to do next. Praying for guidance. I have never had progression free. 😢
Good news is I am in beautiful Iowa with my 82yo dad at his lake house enjoying my first covid trip. We are wearing masks in the house. The weather is perfect, we took a boat ride, I caught a fish yesterday and today I am going out on the jet ski! Enjoying each day for the gift it is. ☀️
Dee
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dee- happy to hear you are enjoying yourself in the beautiful outdoors! So therapeutic for body and soul...and to be with family!!! Sorry the therapy isn’t working like we all hoped, but good news is that you have options. I wish I could offer advice on direction, but certainly hope your MO can help you. Sending 🙏 for guidance for you
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dee I am glad you have options BBC s. Enjoy your visit to the lake and your outdoor tin
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Dee...I totally understand about never being progression free
. hugs to you!!!Have you done any chemos yet I only see Xeloda in your profile...I know you are Neuroendicrine and ill be honest I don't know much about that...but do chemos work on that? Like Abraxane?
Enjoy your time with your dad!
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Dee. Love that you are at the lake with your dad. Perfect get a way.
I talked to my IR again. I'm not progression free either. The MRI did show small lesions in my left lobe. Why the UTSW Radiologist did not mention them in his report is a mystery.
There's nothing he can do till after we see the October MRI. I'm not even sure I'm a candidate for a third y90. I'm not sure my MO is on the same page as my IR. I see her September 1 but don't expect any action. Oh, the life we live.
My MO has never brought up clinical trials for me. If I have to change TX in October I have no earthly idea what it would be.
So, I'm trying to pretend none of that is important right now. Not an easy task. But, I am very good at pretending. Meanwhile, it's too hot here in Texas to breathe. My Grandson's school didn't let the students go out for recess. The heat index was 112. He's in third grade and recess is his favorite so he was not happy.💞
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Grannax so sorry you are not progression free. How long have you had Stage 4? What treatments have you done?
How much damage is done to your liver every time you get the Y90? I guess thats why MO says she doesn't want to play whack a mole...
. I am always not in agreement with her about that...but now seeing that you went through all that and now there's more...I think that is where they prefer chemo to get it all at one time ....Hope you get some good information and good news.
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Grannax-
HugsNicole- Always in my thoughts.
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right back at ya candy!
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Dee and Grannax, sorry to hear about these set backs. I understand what you are going through since I am in the same boat.
I had a routine follow up with my MO yesterday - the first face to face since March. The MRI of spine from this week showed progression and my tumor markers went up drastically since one month. I am on Piqray since 5 weeks now and was hoping that this would work since I had the mutation, but surprisingly it is not doing anything for my liver and bone mets.
I asked my MO (again) for local treatments for the liver. She is recommending chemo since there is progression in multiple areas. She wants to do a systemic therapy. I have gone through so many chemo regimens so far, I am running out of options. She mentioned CMF which was very hard for me to tolerate last year but this combo kept my liver mets stable. I don't want to go through this again.
Does anyone have suggestions for a chemo regimen that is not so hard to go through? I had progression while on Xeloda and Taxol, Ibrance, Verzenio - so these are out.
Thank you ladies, you are the best!
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s3k3
I am so sorry for your report. I was able to have Y-90 while on Doxil because my liver numbers were good enough. I only had 3 larger tumors then and a few very small. Those 3 are all still shrinking! They were doubling in size before local treatment. I keep getting more small ones and want to find the right secret sauce to control/shrink those.
Hope you find something that works and helps. Sometimes it feels like we are throwing darts and hoping we pop the cancer balloons but keep missing 😢
Did you read this article? It says what might be next step after failing CDK 4/6. https://link.springer.com/article/10.1007/s11912-020-00917-8
I got my MO to download it and send it to me
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S3K5...I just replied to you in the other thread...but I am darn near in tears if I am reading your profile correctly that you are ER+ HER2- and you have had Stage 4 for 7 years??? That is a big RAY of HOPE!!! That is THE LONGEST I have ever seen WOW. What was the longest treatment that worked?? How about Abraxane and Tecentriq??? Do you have the PDL1 gene?
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S3K5,
Sounds like a great time to get a new biopsy and second opinion about clinical trials! There are a long list of targeted inhibitors: cdk2/4/6, cdk7, ttk, aurora kinase, venetoclax,HER2-ADC, PARP, BET, and HDAC, all kinds of immunotherapy, and on and on. Your options in terms of off-the-shelf chemo may be wearing thin, but your cliical trial options are many.
Some trials put a limit of no more than two prior chemos, so beware of that!!
Nobody can direct you to which is the 'best", because it depends on the biopsy results and having first-rate, trials-connected MOs looking at your data
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Dee thanks for the link to the article. Very interesting.
Nicole, I have had some luck with treatments until liver Mets started last year. I have gone through Taxol and CMF last year. Taxol worked for 5 months and CMF kept my tumors stable as long I was on this combo but the chemo was too hard. I had to go on disability and had constant nause, vomiting. But since this combo worked previously, my MO wants me to restart this. It makes sense but I am not keen on going through the side effects again.
Between 2013 and 2019, I had Iibrance, verzenio, xeloda, Gemzar, Doxil, and many others. Ibrance worked the longest (18 months) and after that I blew through many other treatments due to progression. Now even Piqray is failing.
Cure-ious, you are right about getting another biopsy and rechecking the mutation. But my MO said that since CMF kept my liver Mets stable, we should go back to this instead of trying a new option. She doesn’t want me to blow through my options unless there is progression.
I am still hoping that the spike in tumor markers is due to tumor flare rather than Piqray failing. Next week I am getting a PET scan to confirm this.
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Whats CMF??
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CMF= cyclophosphamide + methotrexate + 5 fluorouracil (also known as 5FU)
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S3K5
fingers crossed that Piqray is working and tumor markers mean nothing, wouldn't be the first time...
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