How are people with liver mets doing?
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SpecialK..beautiful words. Thank you. We all just validated her humanity and she won't be forgotten.
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SandiBeach, so happy to hear your good news. Congrats! I am on day 3 of Xeloda and praying for good results. It is new to me after 4 years on Ibrance.
I too am saddened to hear of the passing of nbnotes. She will be missed. May her soul find peace.
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Hi Intolight.
I was a long time I/L user, too. Got 39 months. I suspect my FGFR1 amp mutation caused the quick progression.
The only advice I have is pay attention to your side effects and don't hesitate to call your MO team. I had bad diarrhea and around day 13 on first cycle (3300mg/day), my feet were bright red and swollen. I couldn't walk. My MO had to stop Xeloda and wait for healing or back to a grade 1 HandFoot description.
She said it was better to stop tx and heal, then to continue on and have to stay off the tx for months. So call and get instructions.
I dose reduced 3 times, now on 2000 mg/day, 7 on, 7 off.
Next cycle, I attempt to add 150mg to my am dose. She is finding the best effective and tolerable dosage for me.
Thinking of you and hoping Xeloda is killing cancer as we speak!
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Sandi thank you so much
From your lips to Gods ears! I messaged my MO with 6 trials..lol she did reply about 1 its mostly for blood cancers (immunotherapy) but I would qualify...she said it wouldn't be the first one she would pick for me...but she will look at the others. * I scan July 13 & 14th results 16th. 0 -
Bliss58– thank you for sharing the sad news about NBNotes passing. Her posts were so uplifting to me when first DX MBC.
SpecialK- thank you for sharing your personal experiences with Nancy.
Prayers to her family. Hugs to all of us who had to say good bye to another metster. I hate this crappy disease.
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Ohmygosh, Special K, my dear friend from our chemo lounge days! I didn’t know you were friends with nbnotes, and so very much appreciate your beautifully written post about her, telling us about your friendship with her and how she touched your life and those around her. Many hugs to you.
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Sandi, just popping in here to say how happy I am to see your scan results. Yay! You and IntoLight were two of the first to welcome me on the I/L board so I do like to check in and see how you are doing. 😊
Hugs, Penny
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I am saddened to hear about nbnotes. It is wonderful to hear about her talents and accomplishments.
I too worry about Frisky and think about her often.
Sandi, congrats on the great results!
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Farewell nbnotes, hope you are in a better place, though it sounds like you enjoyed livimg in this world too.
(here comes a long rant, skip if you like!
I've spent the past 3 days with a 103 degree fever, trying to navigate the as usual dysfunctional system. The last talk with the onc was the "pre-talk" meaning we have nothing left to try and my liver met is now 11 cm and growing fast. Now I find out that the 2thousand dollar test I ordered in february (Foundation One) could only produce a "qualified analysis" meaning not a full analysis, because my hospital didn't send over enough tumor material to do a complete analysis. And nothing has been delivered yet and I can't see results until the onc does and has done the 15 second discussion at the Hogwarts tumor board wizard meeting. Months ago they could have done a new liver biopsy (mine is 2 years old) and just sent it in. Luckily Foundation One offers to deliver a full analysis as soon as they get enough tumor material. May have to find a private clinic that will do it to save time.
this leaves me with (as I see it)
-pushing again for Tecentriq (every single test shows I am HER2 - or perhaps only weakly positive -- I need to prove I am triple negative (have already proved to have the PDL1 mutation)
-demanding a new liver biopsy (both useful for proving I am actaully triple negative and getting the F1 test done
-demanding that my oncologist at least talk to the iterventional radiologist who works with Y90
-skipping the whole damn thing and dying in peace.
They had me scheduled for doxil, herceptin and zoledronsyra (for my superhypercalcemia) but when I reminded them that my doctor was insistent that we not do another treatment until we had decided on next steps (this required calls to my assigned nurse (mythical figure, not sure she even exists), to the infusion center( always grateful to know these issues so they dont have to throw out expensive medicine at the last minute) and my advanced home care team (angels--absolute angels though they can't reach my oncologist directly) So I got them to move the chemo back a week--but of course that meant I had to remind them that my zolydronsyra would be almost 6 weeks away instead of 3. Finally got the angels to offer to do that infusion for me. By this time seriously delirious with fever and with an incredibly painful UTI.
That night the angels came with strong antibiotics, some more gabapentin and cortison to help pep me up. Still weak but the fever is down and I feel strong enough to get out to my country place and get things ready for renters there (finances too tight to enjoy it myself anymore).
This is hard, hard, hard without somebody to yell at idiots on the phone for me and keep me a calendar. My liver hurts, and my right shoulder, and I am just so beaten down. The folks that tell you to keep fighting must be those who don't understand the cost that fighting has on your abiity to enjoy or even manage any other aspect of life.
Also moderators, best advice for friends is do NOT offer to be there "anytime, anyplace, whatever you need" if you really just intend to bring by a basket of muffins once so you can feel you did something. I don't eat sugar anymore, have no appetite and it hurts to swallow, so muffins aren't a big help.
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morning arolsson
I sent you a PM before reading your message on this board - you do not have to respond me on how things are with tests and treatments as I have read it all here.
I feel for you so much. You saying about someone managing your healthcare team for you - I found that many people do not question healthcare providers and just go with what they are told so having someone may not be enough..
I find it mind boggling that you in your position still managing renters - hugs. Could you have gone with a friend there or your daughter so they would know what to do next time ?
thinking of you and sending you wishes of healthcare slotting into place , pain resolving and you enjoying what life has to offer..
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Arolsson, yes, seems you need new liver biopsy as soon as possible. Can you or an advocate get that scheduled within a week? If so, prior to procedure, tell the IR that you need adequate amount of tissue for F1 AND for potential trials.
Then ask your MO to send that tissue with note of F1 expediency as the earlier bx yield insufficient results for treatment. Your MO can call Foundation One personally to request fast turn around. You need results for mutatiional burden and anything else that can determine if you are candidate for immumotherapy..even if trials.
And also get an immediate appointment with interventional rafiologist (maybe the same who would do bx) and seriously look at liver targeted tx, like Y90.
Sadly, your MO (and staff) should be doing this..not you. You are freaking sick with a 103 fever. What is wrong with the medical system? Arghhh.
Whatever stength you have..now is the time to get answers. I get the feeling from your posts, you are not ready to stop treatment.
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I too was very sad to hear about Nbnotes’ passing. I admired her devotion to her musical gift and career, and her zest for life. Thanks Bliss for letting us know and thanks SpecialK for sharing with us too. She lived a full life but is still gone too soon.
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on Ibrance and aramidex 3 months complete , done with blood labs all normal except liver enzymes GGT-160 (Normal<34) and AST 135 ( normal<34) my liver enzymes were normal before starting Ibrance , ANYONE ELSE EXPERIENCED elevated liver enzymes after starting Ibrance and aramidex??
CA 15-3 decreased 2 folds that’s good news alhumdulilah mashallah
pet scan due tomm ..
Last pet scan before Ibrance showed whole left lobe (16 cms) involved and 1 small tumor in right lobe . Hoping this pet scan shows some regression but liver enzymes disturbing me
Scanxiety happening
Prayers needed
-Concerned daughter
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arolsson, I am so sorry you have to fight all of this alone. I am praying God sends you more angels that will help you navigate all the "stuff" and that you will be able to find some answers and some relief soon.
Faripari, praying for good results in your scans and that the rising enzymes are a just flare from working medicine!
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SpecialK, you have not intruded at all to share your personal experience with Nbnotes. Your words were heartwarming and wonderful to read. Thank you very much for sharing. She truly was a special person.
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Faripari ....The high ALT AST could be die off...since your tumor markers are down.
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So heartbroken about nbnotes- she reached out to me early in the Ibrance journey.
Sandy- so happy for you.
Arrolson- Yikes! please specify how your friends can help- if you can. Most people have no idea how to help- but, are willing to with some guidance. Including your children- people tend to get paralyzed and don't realize that their help can be quite welcome.
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yeah my moms ast and ggt are only increased rest fine , did u all ever experience liverenzymes flare ups
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Arollson, I am sorry you are at a point where you have to make decisions, none of which seems like a great option. It is not surprising you feel exhausted and it is wrong that you or any of us have to spend so much time and energy advocating for ourselves. I wish you had someone to do that for you. A bit scary you were having such high fever. Glad you finally received some meds to help with that.
There is nothing more frustrating than not having enough tissue for an F1 or similar analysis. It is sadly a very common occurrence. I went through that nightmare a few years ago, except there was not even enough tissue to send any to Caris or even F1. The only reason I was getting a biopsy was to have a genetic panel done from one of those companies so I could qualify for a trial. I already knew I had the mutation but needed a more recent genetic panel. Both companies require large samples but Caris has even greater requirements than F1. The radiologist used up all of my tissue sample like a drunken sailor testing me for basic ER/PR/HER2 tests which I did not need. Biopsy for nothing. I found out part of the problem was also that my MO forgot to tell the IR that I needed a specific amount for Caris. If you do get another biopsy, make sure your MO communicates exactly what size and how many tissue samples F1 needs and request they get extra samples (just in case). If you have an 11cm tumor, the IR shouldn't have any trouble getting some good sized tissue samples. It is common to lose some sample when the radiologists are prepping it. F1 has very specific requirements which can be found on their website. I am saying all this, but also know that you are feeling tired of having to advocate for yourself. So maybe this is too much to do any of this. Just passing along the info in case you end up needing it.
Hoping that the red tape clears up for you and that you are able to settle on a path forward that you feel good about whether that means more treatment or not.
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Faripari, I agree with Nicole, the fact that you mom's tumor markers are dropping is a good sign. Treatment itself can cause elevated tumor markers, depending on the treatment, and sometimes there is a jump in liver enzymes during the die off phase. That happens to me quite often.
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what do u mean by “treatment itself can cause elevated tumor markers “ and “jump in liver enzymes when die off “ you mean dying of tumor cells or the normal liver cells. Please see I attached the report (reference levels are there too)I feel better talking to u guys , I just want my mom to be healthy I want her to see me getting that MD and being the doctor.
I love you all , I am praying no mother no father no child goes thru this . God gives everyone challenges tailored to their will power , only the strong willed people get tough challenges/trials and my mom and u all are very very very strong people . May Allah protect all of you from pain and anxiety and give all of you all good health and happiness and peaceful heart and mind .
I am a doctor from India trying to clear my boards here in chicago so that I get into MD residency , I know I will Inshallah , I just pray that my mom is still there to see that and to be there when I am in labour and to be there to hug my kids . You know when I will get that MD I PROMISE to help people like my mom as much as possible withh my medical knowledge or even if it implies giving money . I promise I promise I swear on my lord I want to be a good doctor who is an asset to the society . Please pray I get that MD .
I just spoke to mom she came out of scan couple of minutes ago . It’s really bad in India the hospital system is garbage no vents no beds all hospitals full plus the politics of richer getting served better , people dying everywhere and COVID thing is making it worse my mom went with wearing PPE to the diagnostic sca center where COVID patients are getting tested , that’s another thing I am so scared abt .
Scanxiety is a real thing , she doesn’t worry much but here across the world I get anxiety .
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JFL...wow so glad you just mentioned about the size of sample for F1 I had no idea..and I am at this very moment in the process of seeing if F1 will cover another biopsy since it has been over a year and since I have failed every treatment in that year
I am going to make sure to ask about this.
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test
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arolson I have no words to express how I feel after reading your post. I won't tell you to keep fighting. I see how those words can seem trite and not "getting it". By your words I hear how exhausted you are, too sick and tired to make sure everything you need is being done. It's just wrong that you, the patient, has to be the one to double check every detail of your care. I'm so sorry that are in so much pain. 💞
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Nicole, I recall at the time that happened to me with the biopsy, it happened to two other women on these boards around the same time. My IR actually took 4 large core samples. He even commented on how large they were after my biopsy. However, by the time they were input into the radiologist's database to be assessed by another department, there were only two samples left. WTF happened to the other two?! I think there is a lot of error and waste when radiologists (or their technicians, more likely) are preparing samples and putting them into slides and the like. My IR was shocked to hear there wasn't enough tissue sample because he took a good amount of biopsy tissue. One would think that the cancer centers have the process down pat by now for collecting tissue samples for F1. However, it sounds like it is not as common to do F1 reports and many doctors still don't encounter it all too often. I thought everyone was doing the tests now but maybe it is just a small subset of stage 4 patients. Most MOs spend much more time seeing women (and men) with early stage disease.
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Had a PET scan today. Unfortunately, I only see my MO's PA on Tuesday, but I'm very interested in the results. I think the tx I'm on is not working since my tumor markers doubled again. We shall see.
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Bliss,
Easy to say try not to worry -- but I know that's not realistic, especially over a weekend. And I have the marker anxiety as well, so I know how tough that can be.
I hope you can have a few moments of peace over the weekend. I would try to get my report (if you can) on Monday or at least call the PA and see if you can get a quick result over the phone. That's too long to wait.
Thinking of you.
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Fingers crossed, Bliss. Waiting is hard! Any way for you to access your results in a patient portal?
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Question
How many of you experience pain in the liver area? This is new symptom for me. I hope it’s because the tumors are dying off. Mine is mild but becoming more persistent and a bit uncomfortable.
Dee
BTW - all done with SBRT to the lung lesion. Fatigue has set in. They said 2-4 weeks hopefully will return to whatever normal is in this fight.
I appreciate what everyone here is doing to fight back. My RO told me I am well educated in my own care and to keep it up! Thanks to everyone here for all the good advice and education.
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Bliss, I agree with BevJen on calling for info over the phone if you find the wait too difficult. I usually try to stay busy and try to prepare mentally for good and bad reports. It doesn’t really help, as we know. I call after a couple days. I like the processing time before seeing my MO too. Thinking good thoughts for you
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