How are people with liver mets doing?
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Thanks, LFF! That is good to hear!
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Katy well you know I failed Xeloda too
. (well shoot I have failed everything lol) but I am sorry you did...how did you find it the cancer as neuroendocrine features?? Did they do a biopsy and F!?0 -
Into the light do you know what GRADE your cancer is???
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My cell phone keyboard not respinding when typing messages..told mods. So typing difficult, can't correct.
For those who have fast growing liver mmets after Ibrance/letrozole, a New bx and F1 important. Need to check if still hormonal positive and if you have mutations.
I did not have the PK3 or ESRI mutations, but did have FGFR1 amp. Which I believe caused a rapid progression To liver. So bx important so not wasting time on tx That mighT not work. Emphasis on MIGHT NOT work.
Systemic tx wAs best decision for me for next tx. On Xeloda..now 6 months and respinding. MRI nExt month to confIrm.
Sorry or teirible typing, but can't cotrect with whatever is going on with my BCO.
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Nicole, my first oncologist at MDA in Houston mentioned it when he reviewed the biopsy when I was first diagnosed with MBC in late 2015. INo one ever elaborated on it, though, and I was too freaked out by everything at the time to investigate further.
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Nicolerod- Neuroendocrine is determined by the Immunohistochemical staining (IHC) that is done at pathology on the tumor. Neuroendocrine (NE) stains for synaptophysin. It is rare in breast cancer and usually an ignored incidental finding when considering treatment.
The blood test for chromagranin A is a type of tumor marker for NE. Mine tipped at 2000 when the normal high is 140. It is not a reliable marker because it can be affected by many things even position such as lying down or sitting up.
NE has a special target- somatostatin receptors. There is a Dotatate PET that will confirm if the tumors are SSTR+ I am having another scan on Tuesday to see if the newer tumors have uptake. I had good uptake in my first dotatate PET.
IT IS FRUSTRATING TO HAVE THIS and not be able to get the SSTR+ treatment because it is breast cancer. I have called center after center to get into the trials only to be turned down. Finally I am getting some traction, one at University of Kentucky and another at MSKCC who expressed willingness to pursue the SSTR+ status with the PRRT targeted drug Lutathera off label. I will have to get insurance or the Pharm company to pay and that is a long process. I am not at “right to try" status since there are many drugs I can try including the CDK 2/4/6 trial. I'm going for that consult Wednesday.
FYI-My original tumor had 90% Neuroendocrine architecture and 10% breast. The metastatic biopsies confirm Neuroendocrine structure also. This is why I am pursuing traditional Neuroendocrine treatments but I hit a wall when I tell the doctors and clinical trials it is breast. There is no crossover other than Afinitor treats both cancers.
Prayers that I can get this treatment eventually. The CDK 2/4/6 trial only has stable disease status so far. I will take that while I am still looking for partial or complete response.
Dee
Sorry for the tutorial. I'm still learning myself
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Dee, fingers crossed you eventually get the treatment you need.0
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SandiBeach, I need to contact the Mods, too. For the last several days, I'm not able to type a complete message on my phone without first clicking "use rich text editor." Otherwise attempting to type a 2nd character auto takes me to the advertisement at the page bottom.0
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Select "use plain text editor" below message box. It is to the right of Preview and Submit.
Another member suggested I try this and it works.
Hope BCO IT can figure out the problem. Mods have been alerted.0 -
AlabamaDee I hope you find the right treatment soon.
SandiBeach57, I hope Xeloda continues to work for you. Good luck with your MRI.
My PET/CT report from last week's scan shows improvement in my bone mets and stable liver mets. The SUV numbers are lower than before I started on this treatment plan 6 weeks ago (Piqray). Initially the tumor markers had jumped which led to a PET scan. With all other chemo regimens, the best response I ever had was 'stable' but this is the first treatment wherein the tumor activity is actually lower in the bone mets. I am so glad this targeted treatment is working !
I will continue on Piqray for 6 more weeks and then do another MRI. I am hoping this drug will work equally well on my liver mets too. Agreed, it is probably too early and maybe the liver mets will eventually start regressing.
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S3K5 - great news, hope piqray continues to be good to you
I'm well. Just had bloodwork for treatment tomorrow and liver values are all normal (which is a good indicator for me as my liver mets were significantly affecting liver function earlier this year)
I currently have few side effects and hardly feel like I'm in any treatment. No fatigue, no pain so life is good
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Not a good day -- sort of cross posting here with bone mets thread, but here goes --
preliminary report on my MRI of liver/abdomen from last Friday just came through. So, on the liver front, this is what the report said in part:
New 1.2 cm enhancing lesion in hepatic segment 5 appearing since 5/27/2020 MRI suspicious for new solitary metastatic lesion.
Really upset. I'm guessing one more month on Ibrance, then switch to Piqray. Have telehealth appointment with my interventional radiologist on 9/22 and will see what he thinks about doing another liver ablation on this new lesion.
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Sorry to hear this, BevJen. Sucky news. I’m glad your IR appointment isn’t too far off
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BevJen, that sucks. I'm sorry to hear that there's a new lesion. Ugh. Glad you can see your IR guy relatively soon.
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BevJen- So sorry to hear of your liver progression. Hope the IR has some suggestions. And that Piqray is a good med for you---shrinks the bugger and mild on you.
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Thanks, all, for your good thoughts. Still waiting for the final report, and the appointment with my IR. Was not expecting this bc I had just gotten a note from my MO today saying that my TMs were "stable" and that she wasn't going to do my CT scan for another month or two. Whoops!
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Ugh, Bev, I was hoping you would get a better report. With liver and bone showing something new, it does look like a new treatment is in order. So you will talk to the IR, and probably start Piqray with Faslodex?
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Hi, SP,
Well, as I said, I'm still waiting for the final report. So things may yet change somewhat. Also, I looked closely at the prelim report, and it was partially dependent upon my MRI of my skeleton which had the worst written (and basically indecipherable) report I've ever seen. I am currently very down on radiologists, as you can tell.
I will see what the IR has to say, and then see what's up at that point. Piqray, though not my first choice, was suggested as the next treatment by the Hopkins Molecular Tumor Board after they reviewed my F1 report, so unless something else pops up, that's where we will go, I think. My MO is very high on piqray, although she did warn me that of all of her patients who are on it but one, they all have blood sugar issues so we'll immediately, or shortly after, move to metformin to help control glucose. Faslodex will continue.
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My onc often goes to the radiologists and asks them to clarify items in their reports and provide further interpretation. Do they realize how we hang on their every word? What is your first choice?
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Yeah, I'm not loving radiologists right now. My reports lately have fluctuated between almost unreadable to understandable plain English. At Hopkins, every scan at the mother ship is read by a fellow and by a supervising radiology professor. I'm guessing that this preliminary report was read/written by the fellow. It will change -- I just don't know what part will change until they post it.
My first choice right now, which was in fact recommended by the molecular tumor board, would be immunotherapy by itself to see how that works. I am eligible for Keytruda, which has just been approved for use with tumor mutation burden high, which I have (about 25 mutations). And it can be administered every 6 weeks too, now. So even though it's IV, I am a fan of immunotherapy and would like to go to that. My MO says that using the pills (Piqray) would be easier on my body. She is a bit scared by some of the long term SEs of various immunotherapies and although she realizes that they only affect a small number of people, they can be persistent and difficult to treat.
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BevJen- I’m so sorry you have experienced progression in your liver also! I’m with you. It sounds like you have some good options to think about. Ablation, immunotherapy or piqray....I’m curious. I hope you get your finals results soon and nothing more to address. Hugs
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They are doing so much work right now on making ER+ bc more responsive to immunotherapy, that I do not mind waiting for that if something else will work in the meantime. My F1 says high mutational burden but MSI stable. Did I scare you away from the SUMMIT option with my rough start, Bev?
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SP,
No, you didn't scare me off of the neratinib trial. The molecular tumor board at Hopkins said Piqray (possibly with something else -- not specified); keytruda; and then neratinib, in that order. Keytruda has been approved by the FDA for either Microsatellite instability or tumor mutation high. Plus, I've got that little issue that in my F1 liquid, the ERRB2 mutation isn't there.
I am going to have another consult with Dr. Cristofanilli at Northwestern before making any decisions. He's been involved with liquid biopsies for about 15 years, and I trust his interpretation of my recent F1 liquid plus a Biocept CTC test. Lots to think about.
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Got it. I’m glad you can consult Dr. C again. (Did you see my PM about my liquid biopsy story?)
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BevJen, I'm sorry about your progession. I hope you get a more clearly written report on your MRI. I know I've had doctors call the radiologist to get a plain language interpretation of their report - they really want to make sure they have a perfect understanding before passing information to me, which I appreciate.
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Dear BevJen, so sorry for your latest developments. It is good your team is aware of everything and reacts quickly. Lot's of hugs, Saulius
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BevJen, sorry to hear about the new met. Hopefully you'll be on a suitable treatment plan soon. I understand that it is a stressful period every time a treatment stops working.
I am curious about what your IR says regarding spot treatment for your liver. I am on Piqray now and even though the bone mets have shown a reduction in activity there are 3 liver tumors (about 1.9 cm each) which are not affected by Piqray so far.. My MO was talking about a referral to the IR for these.
If you choose to go on Piqray, based on my experience, it has been tolerable for me so far. My only issue is higher blood sugar, which is completely under control with metaformin (I was not diabetic before I started Piqray). Other side effects are minimal compared to the chemo regimens I had.
Good luck with everything. Please keep us posted.
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S3K5,
Thanks for the piqray plug. The high glucose is the one side effect that my MO said almost all of her piqray patients have, and I have been a prediabetic levels of glucose for years (I come by it honestly -- both my weight and genetics). My biggest concern is diarrhea, honestly.
I have had a 2.1 liver met removed via microwave ablation before (last year). I've mentioned it on this thread (a year ago) and mostly on the thread that talks about local liver treatments. You should look at that thread if you have not -- tons of good info there. It is a bit of whack-a-mole, because things can reappear or new things can crop up (I am probably example no. 1 of that) but it's worth investigating for you. I'd ask my MO about it, especially if he/she is on board. Generally, most MOs are not fans of local treatment bc their training tells them that BC is a systemic disease that requires systemic treatment. Plus, interventional radiology is a rather new, and evolving practice area, and so when our MOs were trained, probably never the twains would meet.
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So I just messaged my MO...I want to move scans up to week of Oct 5th. No need to wait until Nov now...I have had consistent pain in my liver for the past 8 - 10 days...this for me is like "tumor markers" is for others. after my 1st dose and 2nd of Eruibilin all my liver pain went away for almost 3 weeks..now...back again. I just messaged her and asked if we can scan week of Oct 5th I will have had 7 treatments at that point.
Right now...I am in NY for my son's fiancee's bridal shower...I know what you guys are gonna say .."enjoy your time there...cancer can wait"...and I am...but..I had to leave this morning and take a drive and yell and cry...and cry out to God for help I promised myself I WOULDN'T get my hopes up this time with this treatment but after 3 week of no liver pain I couldn't help it...I thought it was working!!! Shame on me I know...I sat saying to myself "what is WRONG with YOU?!?!?! YOU know everything has failed you and you got your hopes up?!?!?! UGHHHHH. I also should mention when I had no pain my bilirubin was 1.1 lowest it has ever been..then last week started rising....1.3.
Anyway thanks for letting me vent.
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