How are people with liver mets doing?
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Nicole. My 3 month response from I/F showed my lung mets to be stable but my liver mets grew. Mixed response. I had y90 for the liver mets. So, the IF continued to keep my lung mets stable for 18 months. My y90 kept my liver mets inactive for 18 months.
Agharta I had a similar dilemma almost a year ago. I chose to stay on my same TX Ibrance/ Femara, for 3 months in spite of the MRI vs PET scan conflicting results. Wrong choice. So I had progression in January. I was put on Afinitor/ Aromasin. It made me super sick and failed. Then, Xeloda for 3 months, it completely failed and cancer grew the whole time but it was an easy TX. Now, I just started IV Gemzar/ Carboplatin. It has some SE, they all have SE, but not hair loss. I've been heavily TX with many of the same ones you've had. All that to say,I don't know what your MO will recommend.
Keep us posted with updates.💞
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Katty- If it were me I'd be 100% on board with your onc-recommended trial. You now know that your cancer is sensitive to immunotherapy, which is huge, so now its a race to figure out how to revive the immune system or expose the cancer to get it all working once again. Radiation from y90 might also help the immune response, but right now your immune response is not working, so I'd put that on the list for later and focus on getting into a trial.
There are also reports that metformin can inhibit the NLRP3 inflammasome so if you decide to go meet the trial docs ask if that might be a good supplement to throw in there. This is really cutting-edge stuff, I see the guys have been presenting about this trial at meetings in 2019, so I'd ask to see their powerpoint, how do the data look?
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Thank you so much, Cure-ious!!!
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Katty, I'm nowhere as knowledgeable as Cure-ious, but its great that your cancer responds to immunotherapy drugs and it seems like the next option is just as exciting. They will be following you very closely it seems, so you'll know soon enough if its working. Ive heard of injecting directly into tumors to be a very exciting option for solid tumors in general, so hopefully it works very well for you!
Hugs,
Ann
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Thanks, Ann! The study chair, who I adore, still teases me about how leery I was of joining the first trial. He looks at me as being a real success story, so I think he wants to keep me around.
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Katty. I know nothing about immunotherapy except that I hope someday it would work on me. You go girl, pave the way for us.💞
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On the Gem/Carb thread, liwi told me her three month scan showed improvement. I'm so happy for her. Also, I'm hoping my three month scan will also show improvement. She gave me much needed encouragement. But, since I'm in my first cycle, I have to wait three more months. UGH 💞
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Glad to hear Liwi is having a nice response to Gem/Carbo. Grannax, I think/hope you will also have good results. It is an effective combo.
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Shetlandpony.. how are you doing?
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Gumdoctor? Are you managing the chemo?
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KattySmith - did they talk about doing another biopsy of your liver? The reason I ask is that my sister had partial response to her immunotherapy trial and then a scan that showed progression back to the original size (about 19mm) and progression to lymph nodes and bone. They did a new biopsy and her cancer changed - AGAIN - from triple negative to ER+.
She's now on letrozole and piqray. MUCH better SE than the trial and hopefully a good response.
Thinking of all of you.
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Hi cool blue water,
Yes the first thing they did earlier this summer when I showed progression on my scan was to do a new liver biopsy, and my tumor hormonal status remains unchanged.
In fact, as part of the trial qualification protocol I will have to have another liver biopsy before treatment starts!
Who knows what will turn up this time!
Thanks,
Katty
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Katty. So you decided to do the trial. Sure hope you respond again. You go girl.
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Grannax, I'm taking the path of least resistance and will start my qualification tests the first week of September. I just saw in my portal that they are going to do a tip-to-toe nuclear bone scan!
I hope you're feeling well in this beastly heat. I wish someone would turn the furnace off.
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Good for you, Katty. The heat is unbearable. Even in the morning when I go out to my garden. Fall please come to Texas.
My new port got infected. UGH. Always something. So I'm on antibiotics and my IR has me text him a pic of it every day.
Today, as if I don't have enough going on, the restoration company is coming. My toilet overflowed and flooded my master bath, bedroom and living room. I cleaned it up but they have to check for any leftover moisture and kill the germs. If they find any they will start ripping out my wood floors and carpet TODAY. OMG I am not ready for that. I guess I will move into my guest room for the duration of clean up and then installing 3 new floors. However, I am excited to get 3 new floors.💞
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Shetlandpony and Gumdoctor, I am thinking of you. I hope you are just trying to maintain your current treatment and trying to get stronger.
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Grannax, you have been dealing with so much! I hope your restoration isn’t too much of a hassle. The immediate clean up you took care of is behind you know, but it really showed your strength and resolve. I hope the port infection can be treated without too much discomfort to you. (I’ve not had a port yet. Is it hard to adjust to?). Hoping for this treatment to be tough on those liver mets!!
Hi Gumdoctor, hoping your treatment is a powerful one too, and you’re managing ok
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Grannax- Sorry to read of your flood and your port infection. When it rains, it pours, right.
Shetland and Gumdoctor- Hoping you are doing ok.
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Thanks for checking on me, Sandi and candy! I amwaiting for my Guardant 360 liquid biopsy results, so my onc and I can finalize our plan. Everything in my liver and elsewhere still looks good except for those two rogue spots. Now that Ihave had some time to recover from the recent procedures and drugs, i am trying very hard to pick up my regular chores,and dance and yoga classes Trying to resume my "normal" lifeBut I don't really know what's in store for me after the genomic test results come...
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I had rhe same test done. Nothing was actionable so it did not change anything. Best of luck to you.
Gumdoctor
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Glad you both checked in (((((hugs)))) and prayers!!!
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Rosie Thanks for thinking of me. Yes I'm in the midst of restoration equipment as we speak. Seven noisy, huge fans The blowing away the leftover water in my bath and bedroom. Water was under my laminate floor in the bathroom. They tore it out in one hour. Told me NEVER to put down laminate, it is literally trash when water gets on it. They did compliment me that I did all the clean up myself. He said most homeowners don't do anything. WHAT?!?! The adjuster comes today, the restoration guys tomorrow then the contractor on Monday. UGH. I have chemo on Tuesday, the first three days are bad, how am I going to cope with contractor and crew putting in three new floors while I recuperate from chemo? UGH
Another day in the life 💞
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Grannax2..Oh my goodness. Somehow I missed this water flooding catastrophy. You did clean up by yourself? So..what good drugs are you on, I need those.
AND you are undergoing chemo..you must not be resting. You are tough..very tough.
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Hi Grannax, sorry to hear about everything you are dealing with. Hopefully the home insurance covers some of the cost but unfortunately you still have to put up with the disruption. Not a great way to recuperate from chemo.
Shetlandpony, good for you to try to resume your 'normal' life. Every time a test is done, we are faced with unknowns!
Since 4 days I have been in the hospital with a bowel obstruction. Don't know what caused it. I have been on IV and today transitioned to a liquid diet. I hoping to get released from the hospital soon. Since I am on weekly Taxol, they cannot schedule a scope yet. So liquids diet for me, till I get an okay from the GI dr.
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Grannax2, I would have just cried. What a tough cookie you are. Remember Zarovka going over, bald head and all, to move furniture while on chemo when her renters’ place flooded?
S3K5, I hope you get to go home soon! Can they not do ultrasound and CT to get a look, at least until a scope is possible? That’s how my bile duct blockage was first seen and judged to be caused by a tumor in or near the junction. Then I had endoscopy to get a temporary stent. My onc and I are hoping systemic treatment will enable me to get the stent removed and not replaced. In your case, hopefully the cause is something simple to treat
Gumdoctor, I hate it when they say nothing actionable. Two years ago my G360 showed an actionable mutation but we decided to just go with Xeloda. If that same mutation shows up at a high enough level now, we will go ahead and add neratinib for the Her2/ERBB2 mutation. It seems Xeloda is still working for all but two spots. How are you feeling?
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Gah, Grannax! I am thinking of you. Shee-it, as we say. I just sat on the deck for a few minutes, nursing a gin and tonic with cherries, as a thunderstorm rolled in and dropped the temp to the lower 90ies...it was almost autumnal. I've been the caregive this past week as my husband has been dealing with an inflamed gallbladder and is preparing for surgery. I am whooped.
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ShetlandPony -
Thank you for asking. I am doing pretty well actually. Neuropathy seems to be settling down with the 10% dose reduction. What little hair is left is falling out. I shaved it all of a few weeks ago (live Facebook video). No issues with nausea. Just constipation.
I count myself very blessed to be feeling this good after such a rocky start with Xeloda and then full strength Abraxane + Carboplatin.
Hoping things continue to settle in...
Gumdoctor
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That's good, Gumdoctor. Sometimes a dose reduction is the best thing. Here's to killing cancer while preserving your fingers and toes.
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Shetland Pony, Fortunately, I'm in my off week that certainly helps.
After the adjuster came today, I'm more confused about what's next. I am thinking about using my own contractor/ handy man who has done all of my remodeling. Things will go slower but maybe that's best, I can do things when I feel well enough to do it.
The big decision is I've decided I have to do the plumbing first. I'm not risking another flood after this claim. That part is not covered but I think I know someone who can do it for less than most.
Gumdoctor. Glad to hear things are finally settled down a little for you.
Katty. I saw a recipe on FB. How to bake a lasagna in your mailbox. LOL
S3K5. A bowel obstruction, I'd rather have a flood any day. Are you in a lot of pain?
Sandibeach. No good drugs. I just did the divide and conquer thing. Used my first things approach. I'm not sure if I mentioned my husband of forty years was an insurance adjuster for forty years. I learned a lot from him, I knew what to do first, second, etc.
Tomorrow the restoration guys will come and get the seven very noisy fans. I'm ready for silence. 💞
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so in my most recent meeting with my ZmO she surprised me by talking to me about two different treatment plans. I think she is as tired of my brain Mets continuing to grow.
I guess there was a drug trial with keytruda that she thought I would be eligible for but evidently they went another direction and I’ve been around too much and had too many drugs that I no longer qualify. She believes that I may and most likely roulettes now Wu’s Lucy for compassionate use. Not s given however.
D
She also mentioned Neratinib. Previously she said no way to this drug as no patient she ever used it in lasted more than s few weeks due to SE. I guess they have found a new drug ( steroid) that you can take that helps with the SE (diarrhea) that makes it tolerable now. So if I can’t get in the other drug she wants me to try this.
I’m currently on taxol/ herceptin/ perjrta with taxol weekly and the other two every third week. I have developed some neuropathy and done days the SE are not so much fun. But it appears to have killed/stabilized the cancer from my neck down. And since I am recycling drugs after 7 years we decided to stay on the current stuff until not tolerable. I have CT scan in 20 days and an EKG as well. Hopefully those are good. If they are, I will stay in them. I have a brain MRI in September and those results will drive my treatment. There are only so many times I can do gamma knife and it is clear current t treatment is not controlling my brain Mets.
Anyway, I am writing all of this because I wanted to know if any of you have been on or know about keytruda or Neratinib. I am pretty sure thee are other threads firvtgese drugs but trust you guys most.
Thank yo
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