How are people with liver mets doing?
Comments
-
Meadows, here is a link to the trial.
https://clinicaltrials.gov/ct2/show/NCT03369223
I get one monthly infusion of Nivolumab and take two oral doses of the trial drug daily. I just started my second cycle and so far, no side effects other than a few patches of rash.
0 -
katysmith Your news is encouraging, maybe we will all be able to benefit from immunotherapy someday. Very happy for you.
Nousazy What an ordeal. We need better scans and people who are on top of of their game. But, I'm afraid advocating for ourselves will continue to be the norm. I recently had progression, also after four months of crazy scan results, and have reluctantly started AA. Progression in lung, chest and liver. This is only my second line of TX.
0 -
thanks Grannax for the support and best of luck with AA !! Hope you get this under control in no time
Thank you Katty for the trial info .. so none if tbe locations are really close to me but maybe if I don't have to go regularly maybe it could be arranged.. hiw often do you have to go there?? Can your regular MO do some of the monitoring?
0 -
NouzayO. I also go to Emory. Who is your MO? I’m at Winship across the street from Northside.
0 -
Congratulations, Katty!! You're only taking anti-CTLA-4 plus a checkpoint inhibitor, no anti-estrogen stuff?- have you learned why your doctors felt that there was a good chance you would respond to this immunotherapy trial ? ( given that most ER-posiitive MBCs are thought not to be immunogenic?) Did genetic analysis reveal mismatch repair mutations or other cancer biomarkers they were looking at?! From what you describe, its super-hopeful! And different from other therapies, if the immuno is working, then any other therapies that might be added down the line may work better for you as well, the benefit of having a super-charged immune system. As I'm sure you know, with immunotherapy a small subset of patients show pseudo-progression, where the initial scans on therapy actually can look like the cancer is getting worse but its because the immune system is busting open the mets and making them look bigger, and then on following scans one can see reduction. Thanks for sharing!!!!
0 -
katfuller 15 and nouzayO: I go to Emory as well at winship at the university campus. Dr Meisel is my MO. I really like her a lot.
NouzayO: I have had same experience with my MRIs and CT Chests. I even asked if a radiologist would sit down with me and review my MRIs and scans with me. The answer was no. Go through your MO.
I do love the infusion nurses. They take great care of me. After 17 months on chemo I know most of them pretty well.
0 -
Cure-ious, thank you for asking those questions. I have bookmarked that trial and await all good news. Keep posting Katty!
0 -
Hartrish. My MO is Dr. Neela Natarajan. She’s swesome and truly thinks outside the box. I have often had concerns about scans. Sometimes there very detailed and sometimes they are not. My MO and I rely heavily on my bloodwork especially my liver enzymes since that is my major problem area.
Small world.
0 -
My liver enzymes haven’t been out of the normal range with mets - so far.
I’ve read this can happen and wonder how common it is with liver mets.
Any idea how you can have liver mets but normal #’s?
0 -
Cure-ious, you are way ahead of me in your comprehension of immunotherapy, so thanks for the information! I did ask my CO why specifically I was chosen for the trial. This was the written response he sent me initially. "This study is designed to target tumors, which are not necessarily primarily sensitive to immunotherapy as EP4 inhibitor BMS986310 is expected to modify cancer inflammation to make it susceptible to nivolumab." I don't know any further specifics; I've asked, but wasn't really clear on the details. I've been overwhelmed with information the past couple of months, not to mention stressed out. As far as anti-hormonals, my last treatment prior to this clinical trial was Faslodex which didn't help at all. That was the second anti-hormonal I've been on since becoming Stage 4 in 2015.
Leee, my liver enzymes have always been in range and my MO said that is common which is why they can't rely solely on the blood work to detect liver involvement. Weird!
NouzayO, the first couple of cycles (28 days each) are intense as far as appointments. The first week of each cycle, you are there 3 days in a row (my first treatment day, I was there from 9am until 12:30am the next day), two weeks with one visit each, then two visits the last week. Rinse and repeat. Most of these visits end up being much longer days than stated on paper - MD Anderson is a massive facility and the standard patient joke is that MDA stands for "Most of the DAy." True dat.
Last but not least, I injured my knee two years ago (probably a torn meniscus) and it has gotten much worse this past year, really affecting my mobility. I noticed recently that it has improved noticeably, and I can surmise only that my knee inflammation has been great reduced! My knee pain (along with sciatica) has been the main thing affecting my QOL, so this is a huge cherry on top!
Cheers,
Katty
0 -
LEE: I have had liver markers within the normal range for quite a but of my tibe sunce feung dx with mets. My MO will monitor them and any movement up can indicate trouble brewing, Then new tx may bring them down. Btw my tumour markers were nit usually useful, though I know others find them a good early warning method. My MO continues to monitor everything just in case it's useful.
I have now developed Ascites in my stomach and feel like I’m 5-6 months pregnant, I went to ER on MI’s instruction, and there’s fluid there but in lots of pockets not one or two large ones. So ER doc and I agreed whilst she could drain them it wasn’t appropriate to puncture me so many times in ER. She found no blockages in my liver or bile ducts - which was what I was very scared of. Also my bloods came back all good (well liver markers were highish but stabile for me) ER doc sent a message to my MO (same hosp/actually I’m Kauser Permanente so all care is connected) Back home waiting for MO (who has been unusually slow to respond) I’m a bit laid out and unabke to do much. Very frustrating. A silver lining is I feel much better than I have for a long time except for my stomach and being breathless and immobile.
Am I meant to rest or should I try to do things Dr Google says rest and also she recommended a low sodium diet - would this be worth doing?
Any other advice out there?
Thanks
Sarah
0 -
Leee my liver enzymes have never gotten out of normal range throughout my two years of liver mets. Even at the beginning when I had so many active mets, or now with progression. My MO explained that unless the cancer is blocking the bile duct numbers stay normal. Although it sounds like that is not always true either. Who knows. My MO does not do tumor markers either.
Scwilly I've heard some MO RX diuretics to help with ascites . It kinda makes sense, you might ask your MO.
AA is interesting. My first eight days my appetite went away and absolutely nothing tasted good. Yesterday, my food tasted really good, I was surprised. Then I started having nausea. What?! I don't have mouth sore and have decided to be non compliant about the mouthwash, I'm not using it until I get a sore. I have a track record of turning into a crazy person if I even look at dexamethasone. So, I put it in my cabinet until needed. I do have fatigue, sometimes worse than Ibrance. But it comes on suddenly not gradually, random. Weird. No coughing or any signs of pneumonitis. PTL. So far so good, I think. For some the no appetite gets so bad patients lose 20-30 pounds. Of course if they get mouth and throat sores it's even worse. I go to my MO on Monday, I'll get my BX pathology report. I wonder if it has changed, I'm hoping it comes back HER2+. We already know I have ESR1, therefore resistant to AI. But here I am having to take AI with Afinitor. Grrr. My new genomic test results won't be back for two months.
I'm going to read up on your trial Katy, I didn't realize you're at MD A. That's only four hours from me. Maybe a future treatment for some of us but I don't have the PK whatever it is mutation.💞
0 -
Grannax, I don't think I have the PK whatever it is mutation, either. I was just looking at the trial and they are recruiting in Dallas, as well.
0 -
katysmith really? Which facility? That would be great. Tell me the number of the trial again please. I might mention it to my MO. Of course I won't know if AA is working until March scans. It's interesting for a third line for me maybe.💞
0 -
katfuller and Hartrish .. omg!! What a small world l! We probably crossed paths before in one of those appointments! We should definitely try to meet up for coffee or something! Let's arrange that in a private message if you're interested.
I see Dr. Paplomata at Emory midtown but on days where I have treatments or scans and I don't need to see the doctor I prefer going to Emory St. Joseph next to Northside. It's a bit closer to where I live (Smyrna) and I tend to find the staff there more compasionate for some reason.
Lee .. most of the time since dx my liver enzymes were normal..frustratingly, even when I was pregnant and complained repeatedly about pain in my liver and with an ultrasound that showed some lesions they dismissed the whole thing BECAUSE my liver functions were normal and didn't even suspect cancer let alone Stage IV !! Currently I have elevated liver functions since the Y90 .. one of them just won't come down!! They were also very high when I was put on Ibrance immediately after giving birth and I had neutropenia. It was probably due to all the rapidly dying cancer cells .. my tumor markers were in the 4000s !!
Katty thanks for sharing this info .. that's probably going to be difficult to arrange especially given my little kids but who knows maybe they'll add a closer location. Keep us posted though .. that's truly exciting!!
0 -
Grannax, it says Baylor Charles A. Simmons Cancer. Should be the one right off Gaston ave. Love that hospital, they are really professional.
0 -
bllaaahhh ! All this Miss reading scan talk scares me! I’m having my first scan after four rounds of ac chemo this coming tues. I do think everyone’s has the right to get all of their scans put onto a cd. I’m not sure how much you can read or see on your own computer though. I took a copy of mine with me to mayo for my second opinion and was hoping to get it back but they kept it. My landlord reads scans and he said he woul read mine for me. He seems to be the one they call for second opinions. I need to get that done.
I was so interested in y90 after this ac chemo, depending on what is left in the liver. It isn’t sounding real good though and that’s a shame! I feel I have agressive liver mets and will need to keep after them no matter what! Since it went to my liver, nothing yet has shrunk the mets.
I know taxol is used a lot after ac chemo but since I have already failed abraxane I wonder if that would work? Anyone try both and one worked and other not?
Kattysmith I wish your trial was closer to Iowa it does sound good!
My liver numbers in bloodwork have been reliable as well as tumor markers as far as progression. The doctors act like they are high sometimes but from some I’ve seen on here all my numbers are low, above normal, compared to some.
I’m ramping up my scanxiety! I told myself I know this chemo is working and I’m sure it is slowly working bc markers are going down slowly but still above normal range. It seems though stuff works the first few treatments then fails me. I had odd sharp pains in my liver area after the last round. I then felt a lot better. I don’t feel my liver is as hard and pronounced either. I’m skinny and even skinnier now so can feel it easy. If this is working I’d have two more rounds of ac and then maybe more or move on. I’m just neeed tohave my next step ready.
I’m in need of a happy 2019!
Let’s all keep plugging away!
Sarah
0 -
Yes, Baylor is very close to me.
0 -
This is a trial that has a combo PD1 and CTLA4 drug that is similar to what Kattysmith was getting. It is only for two cycles though. Thought others might be interested who were interested in Kattysmith's trial. The types of drugs are similar in both trials. Just different length of times for the trials. Has other locations that might be closer for others.
https://clinicaltrials.gov/ct2/show/NCT03517488
I am trying to find a clinical trial with a PARP plus PDL1 plus CTLA4. If anyone sees a trial like this please let me know.
Tricia
0 -
Somebody posted this new therapy specifically for liver mets from BC on fb! Really interesting
0 -
I'm still waiting for the liver bx results from a week ago. I called yesterday and they said it's results aren’t back.
My guess is they'll push it to the in person appt this week as they don't tend to call with results like some docs.
The HER2 on the original MBC was borderline and took several weeks because they finally sent it off to Mayo.
My question is do they check for more than ER/PR/HER2 with the liver?
0 -
Hartrish have you been on a PARP? What is your current treatment. Looks as though the trial you post is at Emory. It’s phase I which makes me a bit nervous. I’m ER/PR+ and BRCA2. I was on Lynparza which worked great for 5-6 months. I’m now on Avastin, Taxol, Carboplatin and my Onc through the PARP Lynparza back into the mix. I was at a very critical point back in the summer and my liver got out of hand fast so her thought was to throw everything at the cancer and it worked. Right now I’m just suffering the cumulative side effects of chemo but my MO seems to believe a PARP should always be apart of my treatment plan even if combined with something else. So we are trying to figure out what’s next in getting me off this harsh chemo combo.
0 -
Hartrish, is this something like what you are looking for:
https://clinicaltrials.gov/ct2/show/NCT02734004
There is also a thread on Inspire:
https://www.inspire.com/groups/advanced-breast-cancer/discussion/keytruda-and-lynparza-treament/
0 -
how is one tested for the pd1? Is that through genetic testing or just bloodwork? My uncle has pd1 but doesn't seem to know if he ever had genetic testing. Two others i know of for lung cancer were tested but didn't know either of it was just through bloodwork. Both are passed away and family doesn’t really know is more the case. It’s sad people do not know what they are getting or doing for cancer.
Thanks
Sarah
0 -
Hi Skitzblitz, I had 3 months AC for widespread liver mets. It stopped the growth with no new lesions. I then started Letrozole/Ibrance and slowly the lesions healed by 9 months. Here's hoping the AC jump started your liver to heal.
0 -
Sandibeach5- oh I like to hear that! I already did the ibrance combo so wonder if I can go back to that? Are your still on ibrance?
Gives me some relief. I feel it's working then I get all nervous when you think something is working and have a scan and it's not. At my point in this getting ride of any will help me!
Thanks for the reply!
Sarah
0 -
katfuller .. how was experience with Lynparza .. I just started today but I’m anxious because I only have the somatic BRCA mutation not the genetic kind.. any words of wisdom? The Lynparza thread is REAL short.
0 -
katfuller: I am on carbo and Gemzar. Have been on this combo for 16 months and still working. This is my first regimen since being dx with diffuse liver mets in July 2017. I am triple negative. I have not been on a PARP yet but that is on the list for future if carbo/gemzar stops working
0 -
Skitzblitz: you can find out about pdl1 mutation through either Caris or Foundation One.
Although some docs will try with genomic testing as well
0 -
KPW3: I saw that study and printed it out. It doesn’t have the CTLA4 drug from what I can tell.
Thank you for posting
0
