How are people with liver mets doing?
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S3K5 - good news about stable mets. Y-90 was good for me. I hope you get a great plan. Let us know how the androgen goes.
Macbookair- you are so wonderful to be looking for hope and positive outlook for your mom. You will find that here. About a second opinion, please consider finding one at a major cancer center if that is possible. Some traveling may be required but can be totally worth it. I did and feel like I have a great team. I can relate to a tumor growing so quickly. I hope you get some answers to your questions
Dee0 -
Elderberry, I’ll look that up. Thank you.
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S3K5....Ummmm so the pain I was experiencing was like a 7 -8 which to me is high. Unless they give something that works wonders I cannot go back on that drug.
. The protonix did NOTHING.... Pepto was apparently possibly making it worse...only Tums helped a little and that was only after being off it for 3 days. I did message MO and ask if she could talk to GI and see if they could give the medicine you are on that maybe if that could help, and then if so maybe re-try Verzenio.0 -
Macbookair2 she might be able to get a second opinion on the radiology AND from another oncologist at a larger cancer center, just to make sure there's nothing the docs at your hospital have missed. I'm doing that at MD Anderson in Houston but so far I've done everything by phone and virtual. I don't have to actually go there unless there is a test or a procedure my doctors here can't do. Insurance (BCBS) has given me no grief about approving the second opinions. They might just confirm what I already know, but that's better than wondering.
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Nicole, I wonder if the Verzenio being in your stomach is causing the pain - in which case coating your stomach to isolate it from the drug would help, or if the stomach pain is a result of the verzenio being in your body - much like the way it lowers blood counts, and that reacting with your body to cause stomach pain? Can you consult with a pharmacist? Maybe they would have some idea of how it is causing the pain, and what strategy might work best? Can you contact Eli Lilly?
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Ok, I got my Guardant 360 results. Does anyone know about how to read the report???
From what I can tell, Negative. I mean no help.
Says.... "No reportable tumor-related somatic alterations were detected in this patient's sample. This may be due to either absence of reportable mutations in the tumor itself or low levels of ctDNA.".
So, what next? Not showing ESR mutation, so AI still working? Not showing Rb mutation, so CDK still working? So why progression? And where do I go from here?
Wonder how much I will owe for this test, and no more information to work with.
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Husband11 I always took it with food and even put every pill in a veggie cap to swallow.... When I called my MO in pain last week and said I was gonna stop the med she said Verzenio is known to cause GI issues...so I assumed that meant could be diarrhea, stomach pain, cramps etc...?? I am on with Eli lilly they said that stomach acid pain is not a documented side effect and then they transferred me to the nursing line and they said
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Hi Nicole,
From what I've read from others and my own experience, diarrhea yes and cramps definitely. I had severe cramps associated with the big D events. However, stomach pain? I think you are the only one I know that has reported this. Wish I could shed some light on why you had this issue.
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Husband11 I always took it with food and even put every pill in a veggie cap to swallow.... When I called my MO in pain last week and said I was gonna stop the med she said Verzenio is known to cause GI issues...so I assumed that meant could be diarrhea, stomach pain, cramps etc...?? I am on with Eli lilly they said that stomach acid pain is not a documented side effect and then they transferred me to the nursing line and they said this is an adverse effect and have to document it....
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I should have know you would be working on it from every angle. The capsule sounded like a good try, to delay the opening and dispersal. Plus the combining with food should have helped. Must be so frustrating and disappointing for you. I wouldn't suggest trying it as a suppository, because it might need to pass through the liver as it does from the small intestine / stomach route. Plus who knows what that would do to the effective dosage.
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Well I will tell ya this Husband.....I am debating going on the Afinitor right now...out of almost 50 women I have spoken to on FB...maybe 4 didn't have lung issues and need multiple pleural enfusions...... I have never been scared of a drug the way I am of this.... I just wrote to my MO about it...she told me that she put a message into the GI doc about maybe getting the Dexilant (to take with Verzenio) that S3K5 took for the ulcer I looked up that drug and it says it works for acid reflux too...so maybe if I get that and take tums from the START of the medication I can tolerate it?
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nola, i totally will look into that. how were you able to get a second opinion/who did you contact?
dee, yeah it sucks having a tumor grow so quickly. they tried kadcyla and enhertu and it grew by 3cm every month on both treatments. i feel like i have no answers. i'll look into a second opinion but i'm her only advocate and i'm young and just confused on how to do/manage everything.
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has anyone heard of TUDCA?? I just spoke to someone on FB that was going into hospice..and did Caboplatin> spelling and TUDCA and is NEAD now.....
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Husband, just wanted to thank you for pointing out the ctDNA testing opportunity with Canexia. As I suspected, their website has changed, removing the deadline of March 31st for the testing. I guess they did not reach the target number of patients.
I reached out to my MO who is on board with getting the testing done. Biopsies have always presented a problem for me as, until recently, I have not had solid tumors to easily test (pleural mets, some potential involvement in the capsule of the liver) and bones. While I now have lesions in my liver, he is hesitant given possible complications (and also there are likely challenges scheduling something like this with COVID continuing to rage). I've sent the links to the requisition so hopefully by next week I can have the test done.
Nicole, I understand your hesitance with Affinitor as it was one of the drugs my MO considered for me. I did express some concern with the potential lung issues given that one of my lungs is compromised from a large pleural effusion. However, to clarify and I hope others will weigh in, it can cause interstitial lung disease (the CDK inhibitors can also cause ILD). I don't believe this manifests as pleural effusion (related to the cancer) - it's more of a scarring/fibrosis that develops which can be monitored and caught before it causes significant damage. I have known several on this site that have taken it without incidence. It's always tricky to tell from stories we read but often those with these significant adverse effects have underlying issues such as asthma, and/or may be older. Not trying to convince you one way or the other but I think it's worth a chat with you MO to better understand where she pegs your risk in this case. Hope this is helpful.
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Sadie..thank you so much for you imput I know you have talked with me about this already so I really appreciate you doing so again. The people I spoke to on FB said they had no underlying issue prior to this drug
. I am however wondering if a lower dose than 10mg would lessen the risk?? I say that bc my MO was going to start at 7.5.....So does that IDL go away or is a permenant condition?
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candy- I am sorry you did not get more news from Guardant. I believe it is FDA approved so maybe insurance will cover.
“No reportable tumor-related somatic alterations were detected in this patient's sample. This may be due to either absence of reportable mutations in the tumor itself or low levels of ctDNA“
if there were no alterations found I would guess it is low levels of ctDNA. I had 2 liquid biopsies with no results, but my tumor tissue biopsy had ESR1 plus some other mutations. Sometimes you just don’t have very many circulating cancer cells in the blood.
Dee
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That is why my doctor thinks liquid biopsies are not very good unless you have high tumor burden...she prefers tissue.
Sadie...my MO wrote back she said :
"I have had one patient develop interstitial pneumonitis on Afinitor, it is < 5% likely. That being said I also had one patient develop it on verzenio as well and on ibrance. So they are rare but possible."
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Macbookair
Check out these websites to get some tools for helping your mom. I have not gone through it, but a MBC advocate I follow posted it and I thought I would pass it on here.
Dee
https://www.mbcalliance.org/find-a-cancer-center
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Dee and Sadie....looks like my MO called in the lowest dose of Afinitor... 2.5 mg....
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Nicole. Good news on the dosage. I am not sure about the pulmonary issues. I know the damage can be permanent and quite severe but it is my understanding that they watch closely for this (any changes will show up on the scans) and stop the treatment immediately if it is suspected. That way the damage can be undone or stopped before it becomes permanent.
Totally hear you on the liquid biopsies but baby steps. My MO is not a complete fan of genomic testing as, in his experience, he has not found them to identify many actionable mutations. But given that this is free, easy (just blood although judging by my ordeal for my CT accessing veins is starting to become an issue - four tries! ouch!) and still relatively early in terms of the number of treatments I've been on, I'll take it.
More good news to share. I was a bit worried when I hadn't heard back from my MO on the CT scan. He sent me a note this afternoon. Stable except for the liver mets which have reduced in size. Whew!! That's a relief. Now I can go into the long weekend more relaxed. Of course, it means SABR is off the table, at least for now but I'll take this win as well.
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Woohoo Sadie on a stable scan. Enjoy your weekend.
I meet with my MO on April 19 to discuss liver tumor board recommendations and Guardant results. I will ask about a tissue biopsy. But the MO nurse said cannot biopsy "unless over 1cm and yours is just over that"--- but largest of mine is 1.6cm. I am going to see if we can biopsy.
Just frustrating that the Guardant test didn't give more information.
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SADIE WHOOOOOOOO HOOOOOOO STABLE MABLE!!!!!!!
Question Sadie...what treatment are you on again? BTW I think I made a mistake about the dose...she ordered 2.5 but will have me take more..she wanted to start me at 7.5 originally..but I am gonna see if we can start at 5 and work up see her next Thrusday
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Hey Nicole. I'm on Xeloda. The HFS thing is a bit of a problem but I'll figure it out. I am thrilled the liver mets are smaller.
Good plan on the reduced dose. You seem to be very sensitive to the effects, probably due to your size.
It's so hard to figure out how we will experience these treatments. With Verzenio I never had the worst of the big D but initially the nausea almost derailed me. Mouth sores were a constant and then the GI issues started to escalate. Go figure. With Madame X the issues with my hands and feet started almost immediately. It doesn't help that I need to walk a lot. At least now I feel confident enough that I will be staying on it that I feel I can invest in new shoes, socks, etc. Retail therapy here we come!
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Sadie- 💃🏻💃🏻 Happy dance!
Nicole- if I remember you are at stable disease in the bones and treated disease in the liver. So the meds are to prevent growth/ maintenance. If you do a reduced dose of Afinitor will you also be on Faslodex or aromison? I can’t offer advice but a reduced dose sure seems reasonable. I had a few bloodwork problems ( a few liver enzymes went high, once or twice I had low neutrophils but I took the filgrastin shot and recovered, magnesium started to dip) but my QOL was really quite good on full dose Afinitor. I hope you tolerate it well!
Dee0 -
Nicole - I developed ILD while in verzenio. It was mild and found on chest X-ray when they were looking for something else. I came off therapy (10 days)and took a short course of prednisone, which cleared it up, and I went back on verzenio at same dose. No problems since. Caught early before I really had symptoms, treated, cleared up with no lingering or ongoing effects.
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Sadie- REALLY GREAT NEWS!!!! So happy to hear.
Dee- love that it’s oral and praying maybe better as alternative to faslodex!! And thrilled it’s working for you especially.
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Thank you Sadie and Dee and Hope.
So Dee I wasn't really stable...what happened was everything Srunk on the Eribulin in Oct scan. Dec 22 had the Y90 went off all treatment and then had progression of bone mets with new met at T3 and it must be really growing bc for the 1st time in my life I have pain in spine and back...
. who knows how much else has grown and new mets considering i have been off all treatment for over 3 months...I do MRI of T & C spine this coming Wednsday results Thursday.Sadie I agree about side effects due to my size no doubt about it even the IR said if I would have had more body fat...the Y90 wouldn't have effected my colon that way
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It’s such an odd place to be. For most of my life I battled my weight. I looked quite matronly in my early 30s. Something switched in my brain at 38, and, after many years of losing, gaining it became easier. I lost about 70 pounds. Then I found the lump. Weight loss was probably a contributing factor. Ironically, after months of working on body image I had half a breast and was completely bald.... have to laugh now.
After that, I maintained a relatively stable weight for many years with focus and a change in diet. (Can’t be very long without veggies. I love them!) Now, here I am stressing about keeping weight on. Talk about irony!
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Yes, candy, I am proud of you for getting an account to access your report! As far as the non-results, this happened to me once. I talked to the folks at Guardant and they said that it was probably because of low amount of tumor dna in the blood, due to low amount of tumor and/or being recently on treatment. We re-tested maybe six weeks later after a treatment break (done for other reasons) and got results that time. Tissue biopsies avoid this problem. The company ought to be able to reduce your cost a lot, just give them a call.
Nicole, following and hoping you get a good plan that will help you soon.
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Macbookair, here are some suggestions for very good places to get a second opinion.
This is an NCI center in Oregon:
Knight Cancer Institute
Oregon Health and Science University
Portland, Oregon
Comprehensive Cancer CenterTo go even "higher" in the ranking, Seattle or Northern California appear to have the closest NCCN centers to you, and these centers would be an excellent place to get a second opinion.
https://www.nccn.org/members/network.aspx
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