How are people with liver mets doing?
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I just have to say again that 5 FU is my favorite name for a drug that fights cancer.
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Shetland I totally agree with you about 5FU.. Crazily appropriate. I took it once many years ago.
Nicole, I'll be four years out in December. But, this is my fourth DX of BC and MBC.
Since December 2016 I've taken Ibrance/letrozole, Arimidex/ Aromasin, Xeloda and Gem/Carb. All failed. I'm on Faslodex nine months, it is working on my lung and chest mets. But not my liver mets.
I've had two sets of y90s. The first kept my liver mets dead for 18 months. Then new ones started to grow during all the chemo that failed. It did not damage my liver. My liver numbers were perfect. So, I had my second set of y90's nine months ago. The ones in my right lobe showed no uptake, getting smaller and probably dead or dying. Once again, it did not damage my liver, numbers are perfect.
I never expected that y90s would be a cure. The IR can only treat the mets he can see. The microscopic ones cannot be treated until they get big enough.
Bottom line, y90s are the only TX that has helped with my liver mets. They are very stubborn. None of the chemo touched them.
From my other three DX I am heavily pre treated. CAF, Taxotere and Abraxane. Also because of ESR1 aromatace inhibitor are ineffective for me. No wonder IL and AA did nothing. My old MO did not have any faith in genomic testing. I did finally fire her.
Finding a chemo that will work on my liver mets does not look promising. 💞
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S3K5 hoping TM's mean nothing!!! They don't and never have for me so I will blow over to you some of mine that don't work and hope yours are just being fussy right now!
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S3K5, isn’t 5 weeks way too early to assess whether a treatment is working? I am starting Piqray in a few days. My tumor markers and liver enzymes flare at first on nearly every drug. They always go up before they go down. Could the bone mets be a tumor flare? I don’t scan prior to 3 months. Not even 2 months is long enough to permit a treatment to work. I hope this is just a flare for you
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Grannax, has it really been 9 months since your second Y90? Seems like you just had it yesterday. I would like a second Y90 but not sure if my liver is up for it right now. My liver markers have been elevated for some time now, from treatment and likely now progression.
My last PET mentioned “redemonstrated pseudocirrhosis” which has a life expectancy of about 3 months. It was kind of thrown in there without explanation. No PET has mentioned that before so not sure why it says it is “redemonstrated”. My MO didn’t think it was valid and my DH and I went through the scan and are not seeing it. Hoping it is just an overzealous IR resident stating that due to the diffuse nature my mets. Has been a hard week after hearing that. I stopped taking two of my COC protocol drugs known to be harder on the liver to give my liver a break.
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JFL... I am praying it was just IR resident for you. Which drugs on COC did you stop Mebedazole? I think you know that made my ALT and AST skyrocket...someone just told me on FB that Fenben won't do that but Mebed will? I don't think I believe that because people are always on the Fenben page mentioning elevated liver enzymes....
I pray you do not have progression!
Grannax. thanks for all the info. I too cannot believe its been 9months since you had Y90 I feel like you just told us about that. I don't think I have the ESR1...I just looked on my F1 Report I don't see that. I sure do know what you mean about none of the treatmements working...and for me...the Cryoblation to my liver mets as of now is the only thing that has worked too...except for the the first 3 month scan on Ibrance ...everything shrunk then a month later grew back.
Go figure....I am praying that this Eruibilin does something....if not...I may be on to Abraxane and Tecentriq.
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Hi Nicole, I stopped the mebendazole and the statin for now. I do have some progression based on my PET last weekend and am switching from Gemzar to Piqray but the progression has been worse in the past. The thing about the COC protocol is it did seem to give me longer on Gemzar. I lasted 9 months which is the longest I have made it on an IV chemo, despite being 5.5 years into diagnosis. I lasted 9 months on Doxil but also did Y90 with that and suspect most of that 9 months was due to the Y90. I would like to continue COC protocol in hopes it will give Piqray a better chance at working. I am not sure whether a non-chemo treatment will work for me right now and the COC protocol could give Piqray a boost. However, my alkaline phosphatase needs to go down and my AST and ALT to a lesser extent.
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JFL. What a weird report. I'm sure glad your husband can put in his opinion. . I would have had a panic attack.
Sorry for progression and out of range liver numbers. Hoping for wisdom on which chemo to take next. 💞
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JFL yes I too was on the Statin when I was on the Mebedazole..so that also could have contributed..I don't want to blow up this thread with the COC stuff..but I will say that I just read some interesting stuff about FENBEN and liver enzymes as opposed to Mebedazole...I will post to you in the Jane thread
Ref liver enzymes...I have Gilberts Syndrome well I think I may have figured out something that kept elevating my bilirubin...I would go to my blood work/chemo day fasted...only fasted about 15-20 hours...well I read on the GS page on FB that fasting is very bad for GS...so this week I ate a bowl of corn Chex with oat milk at 6am...blood work at 10am.... bilirubin lowest it has ever been 1.2!!!!!! But now my ALK Phos. jumped a bit I am thinking that is from the chemo.
I envy you getting 9 months out of Doxil..it was such an easy chemo I wish I would have gotten that too.
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Hi everyone,
I am not certain what is in store for me but I found out last week that I am showing progression to my liver and lungs via a CT scan. SIGH. It was as if when I had my last CT scan, there was nothing there and then boom! Suddenly these two growths are being detected? Wild stuff!
The liver mets in segment 8 and my MO says it is about 3 cm. The lung met is in the right lower lobe and is being measured in millimetres so sounds small...the language used in the ct scan report says this: "Multiple small areas of ground glass density and tree-in-bud nodularity in the right lower lobe, for example on series 9, images 63, 64, 76 and 83, most suspicious for an infectious/inflammatory etiology. There is continued prominence of the perifissural nodules in the right lung, the more lateral of which appears rounder and slowly growing compared to a few of the previous examinations. This measures 6 x 7 x 7 mm today, previously 5 x 5 x 4 mm on 5/12/2020. Notably, this was not present on 10/30/2018. The more medial visual nodule is linear and less suspicious. There are multiple additional areas of pleural thickening without a nodular or masslike component."
Can anyone translate that? I can pretty much but of course my brain is totally mush right now as I digest this new info. I can definitely drill my MO about these findings at my next appointment in 1.5 weeks.
I have a liver MRI on Wednesday and I am currently away on vacation trying to pretend none of this is happening and quite honestly eating a lot of medical marijuana edibles that seem to be helping me psychologically SO much at this time. I feel practical and rational and I will know in about a week what the next steps will be.
Thank you all for your wisdom and sharing your experiences. I truly felt calm immediately knowing I can come here to you all and find hope, optimism, and great questions to present to my oncology team.
Hugs,
Philly
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Lovefromphilly so sorry about your progression.
sorry that I cannot be of help with interpretation...0 -
Dear Lovefromphilly, I'd go for a "second opinion", i.e. for another radiologist to re-read the scan. We do this by simply ordering a scan read at any private clinics (notably where good radiologist work), they do it fast, usually in one day, and without any "previous" scans or comparisons tell their opinion. Once we were in the situation where our NCI radiologist saw "progression" in several places in the liver and two other opinions re-reading same scan in different clinics said... NED. The difference in stage IV between progression and NED, I'd say, is huge... Up to this day I wonder whether there was some mixing with other person or they hurried too much? Strange things happen... anyways reading CTs or MRIs is "shadow science". Saulius
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Philly,
Good to see you back but not so good for the reason (possible progression).
I agree with BSandra about getting a second read, either from the radiologist at your cancer center (if you can) or sending it out. FYI, the Cleveland Clinic has a service where they will read your scans and give an independent reading. I almost did this last October until my MO freaked out. The one bad thing is that your MO has to sign off on the form to get the re-read, so it's not like you can do a stealth report. I think it costs around $250, if you want to do it, and you have to send them your scans - I think on a disk, but it's possible you can also do it electronically.
Sounds like a pain, but if it gives you more info, I think it's worth it.
Meanwhile, try to enjoy your vacation.
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Oh Philly. Been missing you but sorry you have to come back with this news. How long has it been since your last scans? To now have areas in liver and lungs. What treatment were you on lately? The lungs could be different things I would think. "Ground glass" - isn't that seen in inflammation or infection? That is what I was thinking. And people can have lung nodules that are not cancerous. I have a nodule that we have watched since the beginning-- no growth so they think benign.
In your pocket for your liver MRI next week.
I do not know about the reread of scans. I have never done that so I don't know how it works.
Please keep posting and we will give you all the support we can.
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Philly! You're back, girl! I think ground glass infiltrates are signs of inflammation/infection. On nlarge scale it's how covid presents on xray & ct. Some other things sound like beginnings of fibrosis - deposits of connective tissue which result in less elasticity of the lung tissue. It can have many causes.not related to cancer growth so I don't know.. could it be old scarring showing up? Did you have lung mets in that region before? Did you have pneumonia recently? The little nodule which grew from May... might still be nothing maybe? I keep hearing how many people have benign lung nodules...so maybe it's just one of those.
Edibles ftw! No smoke for you with those lungs
Hugs
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Philly -you might want to be checked for ILD/pneumonitis which is a warning for all CDK inhibitors. Looks like you are on ibrance. I had Grade 1/2 and wasn’t aware. I really was asymptomatic - they were checking for potential heart issues. Chest CT/lung X-ray picked it up. I was off verzenio for a week while I took prednisone. And then went back on at same dose and lungs have cleared and remain clear from that.
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Hi, Philly but sorry to see you here. I know the liver MRI will probably clarify the mets. Or it could confuse the issue. In my recent post you'll read about PET/MRI dilemma. My IR says it's like comparing apples to baseball. But, since this is the first time you've had liver mets ( if I'm remembering correctly) MRI should be definitive. I hope so. Then you can move forward to the next TX. Also, they should do genomic testing by getting a BX of a liver met. It can give direction as to TX. Keep us updated.💞
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thank you all SO SO much!!! What an incredible group of people on these boards! So much wisdom!!!!! You know how your brain doesn’t work so well when you’ve gotten a new diagnosis, welp that’s where I am. And I came to EXACTLY the right place. I am going to write all of these recommendations down and talk about them with my MO. Thank you again soooo soooo much!!
and Moth - you are right, no more vaping and no more smoking joints for this gal! I’ve found the perfect recipe for edibles and I make the most delicious chocolate chip and peanut butter chip almond flour cookies that are sooo good. I only need 1/4 of a cookie to feel better!!!
So much love and sending you all huge hugs! I am looking forward to catching up here and seeing what folks are working on and dealing with. Love to everyone!!!
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Philly, glad to see you back posting, but I'm sorry to hear of possible progression to your liver. I have had several lung nodes that would pop up suddenly, my MO would follow for several scans, and then they'd disappear. So these lung nodes may very well just be infection and benign. My MO said this is very common for lung nodes to appear, but not be cancerous. I remember you having some inconclusive scans a while back when I did, too. The liver MRI I had was one that was inconclusive. I finally had a liver biopsy in late May that has confirmed my liver mets. I wish you good luck and will be in your pocket!
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Hello, Philly. Nice to see you. One thing I love about our BCO community is that people can drop in and out according to their current needs and emotional state...Cue Cheers music...”You’ve got a place where everybody knows your (screen) name...”
Grannax2, I believe you asked me about treating the adrenal insufficiency. I started taking a low dose of hydrocortisone to see if that will help me feel less fatigued. I have many questions left for the endocrinologist, but so far she has not responded.
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I’ll drop in and give my two cents...
I still have spots in my lungs that haven’t changed since my first Tx of the red devil. I think it’s histoplasmosis. I live in a state where it’s very common. It is true that a lot of people are walking around with spots without a cluE. us cancer chicks get the works and worry about all spots. I too had radiation fibrosis.
What’s the brand of the watermelon lemon drink? Looking to expand. Most everything tastes yucky.
Love the list SP.
My ob nurse friend says Fiji water containes electrolites.
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I asked this in the bone mets thread but want to ask here too...has anyone had proton therapy to liver or bone mets? I know insurance gives a hard time and doesn't always cover but I am still gonna ask about it at my consult next week.
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Last Friday, I finally had a microwave ablation to a 3.7cm liver tumor in my left lobe that has been growing on my current treatment (Enhertu on DESTINY04 Trial). The recovery has been surprisingly easy - one day of nausea and a little discomfort. I had a harder recovery after a liver resection in June of 2019, so I'm thankful that this recovery has been easier. The IR is hopeful that she "cooked" the entire tumor, but we won't know until future scans. She was hoping to also treat a second tumor in my right lobe, but the first tumor took awhile, so she wasn't able to. The first tumor was near my stomach, so she had her resident continuously spraying water to separate the stomach from the liver while she was performing the microwave ablation to avoid burning my stomach.
My heart goes out to everyone who is experiencing progression! My last scan was stable, but my TMs have started rising, so I'm once again researching next options. I recommend Enhertu to anyone who is HER2+ or HER2 low (IHC 1+ 2+ and FISH-). Many patients have significant regression and durable responses.
Thanks for all the information that is shared on this thread!
Theresa
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Philly, good to hear from you although I wish it were a better reason. Were you still on Ibrance when you progressed? Ibrance is known to result in an explosion of mets when it fails. Although it does not sound like you have at all an explosion, don’t worry it grew so quickly between scans. I went from one scan being fine with inactive and shrunken mets for over a year on Ibrance to 70% of my liver being mets 3 months later back in early 2016. However, things fell back in order on my next line of treatment just as quickly. I can’t help you on the interpretation of the lung scan. I hope you receive the answers you need on that one.
Nicole great news your bilirubin increase was due to fasting. Must be a big weight off your shoulders!
Grannax, comparing different types of scans is definitely problematic. My MO initially wanted me to rotate CT/bone scan with PET scan every 3 months. The first time I had a CT rather than my typical PET was a big disaster. My MO never brought that up again.
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Theresa,
Glad to hear that your microwave ablation went so well. Your experience with recovery bears out my own. I am a year out, and my last MRI of my liver/abdomen was at the end of May, and the reports are still reading that the microwaved lesion is necrosing and has blood remnants in it, or something like that. So it must take a LONG time to completely resolve. Will you go back to have the other lesion treated? I've been stable for the last year in my liver, but as soon as something changes, I intend to try to have more local treatment.
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on way back to hospitSl. Getting one unit of blood outpatient today snd then 2 more outpatient tomorrow.
I’m at sm sll time low for hemoglobin 5.2. Hematocrit is 17.1.
Steroids going back up to 80mg/day which is 2 times what I’m in now.
Trying to keep it together.
Not my best day.
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LFF - this news sucks. I'm sorry to hear the anemia is unresolved and still plaguing you like this. Steroids - ugh, the double edged sword. I hope you tolerate the dose increase well. It's ok to not keep it together.... don't waste energy on it if it's easier to just let go for a bit.
big but gentle hugs, stupid puns, irreverent jokes, kleenex, cups of tea - I'm virtually bringing it all to your bedside
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My brain scan is clear! 🙌🏻
I just had a talk with the CEO of my home clinic. after 7.5 years, I am changing doctors at home. He recommended a young new doctor who loves research. 😷
I had a melt down today. After waiting 2 hours to see my local MO he did not have the results of the brain scan in his hands to give me the answer. He hadn’t even looked at them. I had to ask him what my results were and could I please have a copy. There were some new little non- cancer notations that I asked about- his answer was “don’t read the fine print, the bottom line is no cancer. “🤬I had a urinalysis on Monday too and he didn’t know about that. I think I have been having bladder stones because of the acute pain, pink on the toilet tissue and then I’m some better. He had to ask for the results. There was blood, leukocytes, protein in the urine but the culture came back inconclusive. he agreed to call me in an antibiotic and ordered another culture.
We tried to talk about next steps for the cancer but he basically said to pursue the clinical trials (CDK 2/4/6 dose escalation) I tried to get him to talk to me about that trial results so far as reported by the researcher, to see if it was a good fit or if I should try a chemo combo. He couldn’t/wouldn’t give an opinion. Said to talk to the doctors at the trial. 😤
BTW-My MDACC doc called me yesterday. Asked about the brain scan, told me that trial was available in Houston and said it is reasonable to try the cdk 2/4/6 now, before I have any more progression. However I need to tell her what they said
After 1.5 years of this trial they still have some patients with stable disease. They do not have any one with partial response (>30% shrinkage) I am concerned that this may not be the goal for me, but if I don’t go for it, there is no going back to it- limited to 2 chemos. Plus it requires weekly visits to Houston for 2 months. A biopsy that may or may not have enough tissue to use to get PDL1 and new mutation info. They have this trial in Nashville so I am trying to get into the Sarah Cannon research institute.
I will consult with my new home MO next week and get his perspective and contact my MDACC doctor again through my chart (she is great but will be going on maternity leave soon and warned me she may have to pass me off pemanently 😢)
I feel good about getting a new home doctor and no brain mets. I’m actually sitting in the infusion area getting my IV magnesium and the fact that I am changing doctors is already made the rounds. 🥴
Dee
Sorry this is so long. 😉but you all are the only ones I can share this with who understand besides my hubby.
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LFF so sorry about your news...ughhh I DONT LIKE BAD NEWS !!!! (((((hUGS))))))
Dee...wow I have had the same thing happen a doctor come in and NOT have the results not my current MO but I know how you feel..it's like, HELLO???? You KNOW I AM HAVING SCANXIETY AND YOU DON'T HAVE MY RESULTS READY??? Annoying.
sorry about the urinary issues I battled a recurrent UTI for 2 years and I know the struggle. Praying you get something that works and helps.
Glad no Brain Mets WHOOO HOOO and excited for you to get a new young doctor that is up on the newest stuff.
I did email Sarah Cannon about that same trial...but I decided to go ahead and do my chemo...I have 10% PDL1 and already asked my MO if my current treatment fails can I go to Tecentriq with Abraxane next..she said shouldn't be an issue...but now I am thinking about Verzenio IF and only IF this treatment works...but good luck keep us posted about that Nashville trial
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LFF - so sorry to hear about the anemia and higher dose steroids. No reason to feel like you have to keep it together, go ahead and let it out. Going through all of this certainly gives us the right to rant!!! And then take some deep breaths. I pray they can figure this anemia issue out. Sending hope and hugs your way.
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