How are people with liver mets doing?
Comments
-
JFL - I have never had a biopsy positive for HER2 but my blood serum levels of the HER2 protein is 3X normal. My doctor in Japan thinks her2 is driving my crazy new growth in the liver. I got one herceptin perjeta infusion in japan. I am supposed to continue here. Will start discussion when I meet with onc in a couple weeks. I hope I don't have to get another biopsy but I am guessing I have to to prove her2 status. Very interested in every one's efforts to get herceptin.
Z
0 -
This thread is so great, the way everyone helps each other.
Yes, Liwi, everolimus is Afinitor.
Z, no tissue left anywhere for CISH? I wonder if insurance will accept a liquid biopsy, or an oncologist’s opinion. Yes, I could feel my liver by my ribs when it was biggest. I could also see a lump below my sternum.
0 -
Z froathy urine or Bubbles in urine is protein spillage. This might be great! Pain in that area is great! The treatment is working. I remember the pain in my liver area after SBRT, it was confusing and I wasn’t sure what was good on...but my scan months later confirmed cell death! Hope you are getting stronger every day
0 -
Claire, you are awesome working in spite of everything. I’m so glad your trip is still on. What prompted the change to land?
0 -
the original start of Taxotere, Herceptin and perjetta was based on the HER2 scores of my first ( 2005) and second (2012) bcs. ( both stage 0 but HER2 positive- second being less strong than the first) End of 2013 brought the mbc diagnosis, bone only, but many lesions. Early 2014 they did a biopsy from the spine. It was still positive, but barely. MO asked for a second opinion and we treated as positive. ( btw, Z- I found H &P to be very easily tolerated). When those failed, we did a biopsy from my right hip. Even weaker HER2 expression, so we changed tracks. I got a year out of Ibrance and Femara. Then many rapid (3-6 months) fails since then.
When the liver mets showed up we did the first soft tissue biopsy. She said it would be more accurate. It was almost identical to the hip one. As I said, she has sent it off for 4 additional looks.
Since my mbc dx I have been very lucky to have Medicare and UHC supplement that has covered everything. It’s almost unbelievable. It was strictly a timing miracle and we met with a Medicare advisor that got me on the complete coverage one. We pay quite a bit monthly, but they have payed more, for sure! I did have to have PAN help for Ibrance. Otherwise, no problems.
As I understand it being equivocal means our MO does not have a clear road map. I’ve been through 9 treatments in 4 years. But, I’ve had fours years!
0 -
Kaption- it’s wonderful your doctor seems to be very thorough.
Z- wondering what the blood serum test is called that found the 3x elevated level of HER2 protein?
ShetlandPony- should I ask for a CISH test at this point ?
0 -
Has anyone done both Doxil and Halaven or had to choose between those two? I am moving off of Abraxane now and onto one of those. Based on my last set of blood work, my CA 27-29 did a little jump. That plus the slight progression shown on PET means treatment change. Curious about which one is more tolerable from a side effect profile. I like that Doxil doesn't cause full hair loss but have generally heard Halaven is pretty tolerable (other than hair loss).
Z, I have a liquid biopsy pending now and am hoping that shows clear HER2 evidence so I don't have to do the CISH now. Keep me posted if you have any luck obtaining Herceptin/Perjeta in the US. The FGF/FGFR trial coordinator emailed yesterday to say she inquired from the trial sponsor whether there is a spot for me! She was fine with my 2016 F1 report (which is based on a 2014 sample). As it turns out, she was using FGFR “mutation" loosely to mean mutation or amplification. However, I know trials take some time to set up and assume it would be months before I could possibly clear the enrollment phase.
Kaption, your MO really goes the extra mile for you!
0 -
JFL That is very interesting news for you about the trial. I'm surprised they don't need a new BX. I've taken six different chemos during my other three DX but not the ones you mentioned.💞
0 -
JFL. I had 2 doses of Adriamycin. It’s the only chemo I’ve had that made me seriously nauseous. I failed it quickly.
0 -
bstein - can you elaborate on the frothy urine and protein spillage? why might that be a good thing?
JFL - I do have a little tissue left from my last biopsy. I suspect from the biopsy results that they biopsied one of the older tumors and not the new generation that is causing all the trouble at the moment, but I'll look into it. I hadn't thought of a liquid biopsy. That will be the thing to try first. Great information, thanks.
I am not sure what I am feeling in my abdomen. My abdomen feels firm right under my right rib cage and the firmness extends to the middle of my abdomen and up towards my sternum. Nothing pops out, not painful when i poke it, it's just firm relative to the other side of my abdomen. Feels like a contracted muscle. The other side of my abdomen is mushy and squishy.
Is this is the trial you are being vetted for ...
Open-Label, Dose-Escalation Study of INCB054828 in Subjects With Advanced Malignancies
I am wondering if you might just stay on abraxane until this trial starts even though it is only half working. It won't be too long before the trial starts ... maybe a couple months at most. Have you asked them? It seems like you won't be on the new chemo long enough to learn much or accomplish much.
There are four different arms to the above trial.
- Gemcitabine + Cisplatin + INCB054828
- Pembrolizumab + INCB054828
- Docetaxel + INCB054828
- Trastuzumab + INCB054828
Docetaxel is another taxane, similar to abraxane. Interesting question whether to add something to a taxane chemo or ditch taxane chemos altogether at this point. Trastuzumab is herceptin. Maybe your liquid biopsy will confirm HER2 and you can go on that one? Gemzar is a good chemo. Keytruda is not something I would do in this context. Interesting trial. Curious to know if this is the trial you are doing. If so, I may be joining you.>Z<0 -
JFL. I’ve done both Doxil and Halaven The Doxil is just once monthly and the Halaven is 3 weeks on. One off. With Halaven I had Hair thinning. With Doxil I’m having minor HFS. Both are pretty tolerable. Right now since the Doxil is working so well on the liver mets I’m staying on it. Plus it’s giving my poor veins a much needed rest. But I still have Halaven to go back to. It didn’t fail me I switched when I was going to be in Paris for 3 weeks and couldn’t afford doing chemo while there
You can pm me specific questions at any time
Babs
0 -
Babs, thanks for the info re: Doxil and Halaven. I will PM you!
Z, yes, that is the trial for which I am being considered. The reason I am more quick to ditch Abraxane is that I am nearing my tolerance for toxicity and am worried about further or permanent neuropathy in my legs/feet. It is not common to remain on the every three week power dose I take for this long. Most people take weekly Abraxane at a considerably lower dose. If it weren’t for that, I would stay in it through the Y90 and maybe until the trial. Why would you not consider the FGFR arm with Keytruda? Curious about your perspective. I don’t know which one to take - Taxotere would not be a wise option at this point for the current neuropathy issue. Gemzar and Cisplatin sounds harsh as I am already wiped out from Abraxane but is not out of the question. I could begrudgingly join that arm but would prefer an alternative. Herceptin would be ideal if my HER2 results miraculously come through for me. The coordinator did ask if I was HER2+ and I told her no. My liquid biopsy results are with MO but he hasn’t reviewed/released them to me yet.0 -
Keytruda as a monotherapy immunotherapy is a long shot for ERPR+ breast cancer. We don't know if FGFR inhibitors complement immunotherapy drugs such that Keytruda plus FGFR targeted therapy adds up to more than the sum of each treatment... IOW does the FGFR treatment somehow drive an immune response such that Keytruda works when it would otherwise not work? Not sure at this point.
Based on discussions with MBC patients in the Keytruda trials, I believe the long term toxicity of Keytruda is greater than currently discussed and reported. I would take Keytruda in the context of a very carefully structured immunotherapy play. However, the use of Keytruda with an FGFR targetted therapy appears random to me. It is certainly a question for the trial team if they want you to consider that arm ... why is that combo in this trial? what synergies do they expect to achieve? and ask for the papers to back it up. IMO, there are likely better and more important settings in which to try Keytruda.
Gemzar + Cisplatin looks interesting to me.
>Z<
0 -
Z, I saw further up the thread where you asked me some questions about my gallbladder history. I'm traveling and can't answer at length right now, but I wanted to pop in and say YES, I think you would be wise to have an introductory consult with an endocrinologist, preferably one who is adept at scope procedures and knows a thing or two about cancer. Reason being, if you get into a situation where you need that relationship, it very likely will be a Right This Minute situation.
I had a thread here at the time where I posted a bit about the experience. I think this is it: https://community.breastcancer.org/forum/8/topics/...
And I posted on this thread about it in November. Search for "gallbladder armageddon" and it will be the only post that comes up in the results.
It's good that you're keeping an eye on your bilirubin. Watch how your body reacts to lean vs fatty foods. That should be a clue. When my gallbladder is touchy, I get away with nothing. Soon after my first stent was placed, I triggered a horrific pain attack with two grilled shrimp. (I can eat meat now with no issues.) I've only had two bad, all-nighter gallbladder attacks in the past four years, and both were triggered by barbecue. No more barbecue for me! I'm a Texan, so this is tragic.
Hope you are feeling better.
0 -
Hello Ladies,
Wanted to ask for a bit of advice my onc is wanting me to start IV chemo again and I said no. I’ve been on Xeloda since November had the feet and hand issues but it was bareable . I went on holiday and mentioned to my onc that I wanted to hike somshe cut down my dose from 1650 mg to 1500mg. When I returned my tumour markers were up ten points. Then she raised the amount to 1850mg I was told for my height and weight dosage would be 2200mg but was glad to be under that. I caught a really bad cold coming back from holiday and have been nursing that one and now my tumour markers have gone up seventy points. My once reaction was to suggest the “red devil” I said no thank you.i asked about Ibrance and she said my cancer responds better to chemo, but we left it with Ibrance as I am still hormone positive. Now I’m at home thinking if I have to wait a week to get the Ibrance why not give Xeloda another shot at a higher dose? I’ve read that increasing dosages can cause the TMs to rise also idk. I find this is all so fast. I really appreciate any input.
Babs your family is so beautiful and you are looking great☺️.
Z I tell my onc very often about how clever some woman are about all this stuff and I’m thinking always of you.
0 -
Wendy, Have you had scans that show progression or are your MO's recommendations based only on tumor markers? How are your blood tests? Any increases in liver numbers? If I were you, I would be reluctant to change back to IV chemo based only on TMs. They should not be used alone but along with other signs. They haven't been found to be completely reliable by themselves.
Hugs and prayers from, Lynne
0 -
Lulubee - We can always count on you to develop the appropriate terminology from these experiences. Gallbladder armageddon indeed. I am so glad you figured that whole thing out and are here with us today to provide gallbladder armageddon coaching. I have not had my gall bladder assessed for gall stones and I will get started on that. I did just start zometa and that was promptly followed by an MRI that said my gallbladder walls had thickened. My medical team blew off that detail, but I will not.
Wendy3 - What were your tumor markers previously, it is the relative difference that matters. That said it is never responsible to switch treatments based on tumor markers. Rising tumor markers should trigger a scan, not a change in treatment. If scans show progression, then you have a lot of options ...
Ibrance is always done with hormone suppression. It looks like Faslodex failed you, so what hormone therapy were you considering with Ibrance? Have you been on Aromasin/Exemestane? It is not a standard combination, but Aromasin and Ibrance may make sense for you.
Depending on how aggressive you think your cancer is, you might consider a bigger gun from the CDK 4/6 arsenal like abemaciclib. There are arguments for trying ibrance first. Not a clear recommendation. I have a thread on abemaciclib that may be of interest. Abemaciclib can be a monotherapy.
My gut is that increasing the Xeloda is not going to hold off this cancer if it has evolved to evade Xeloda at low doses. Increasing the dose will increase the side effects. That is just my gut opinion. Not an expert here.
I am not ready to do IV chemo either, but I have been talking to people who have done it lately. Or rather people who have done it have noted my hesitance and PM'd me in a concerted effort to get my head back on straight. In these conversations, I have reconciled myself with the fact that there are certain scenarios where a taxane type IV will be the right treatment. Some of those scenarios are pretty likely. I don't think I'll ever be ready. Mostly, I see IV chemo as an unpleasant and ineffective way to try to delay a fate that I cannot avoid. Let's just get on with it and I'll die with my hair, thank you very much.
However, I see a benefit in buying some time and IV chemo can do that. Immunotherapy like adoptive cell therapy and oncolytics are coming of age. Many of the more interesting treatments are coming out of Canada and the trials are in Canada. It may be that your onc is right and IV chemo is the right next step. Pull the string on the CDK 4/6 inhibitors and the increased Xeloda dose (I am NOT the last word on Xeloda dosing) and LISTEN to the options for IV chemo.
Every one of these options suck in their own particular way. The Abemaciclib thread I started should have been called 50 Shades of Diarrhea. And none of them is certain to work. We shouldn't have to face choices like this. That's the real issue. But we do face these decisions and we make them. It's your decision, not your Onc's.
Where exactly did Onc get this idea that hormone suppression doesn't work well for you cancer?
Can you update your treatment profile, so we can see what you have done. It will help the Liver Met Brain Trust help you better in this difficult time.
>Z<
0 -
Thank you so much Lynne and Z I can’t tell you how much I appreciate your input. Lynne my last scan was end of January and it was great everything was shrinking. My Tms were end of January were 80 then they went up on holiday 10points and after another month of Xeloda they are now at 140 is that a lot? My liver enzymes rose during this timeframe also ten points. All pointing to some thing I know...
I will update my profile today have to look a bunch of stuff up.
Z I read through all the posts I’m very glad you are feeling better.
Babs so happy your TMs came down it always surprises me how good I feel when they go down instant energy.
0 -
Wendy, I follow this thread since so many of my friends are here and I want to learn. I wanted to chime in on TMs....my MO just remarked last week when I saw him that a cold or flu can make your TMs jump up. Going from 80 to 140 is a big jump. It might be worth some other test so before making a treatment change. (My TMs had jumped 25% in month and we were in watch; then they went downbeat 30%...and MO made the remark and I remembered feeling poorly the month prior
0 -
Jen - that is interesting about a cold or flu making your TMs rise.
The basic underlying theme is that TM's are not sufficient to determine progression. That requires a scan.
>Z<
0 -
Yeah Jen it’s a lot I guess, probably the reason I’ve been tired and feeling a bit wonky. So I talked to my Onc she actually phoned me after work and we are going to continue on the Xeloda for one more cycle since I would have to wait for the Ibrance anyway. I want to be sure it’s off my list before jumping onto something else. Not going to a higher dose because she said exactly what Z said just more SE.
Thanks ladies
0 -
so which liquid biopsy would the group recommend?
0 -
JFL, So sorry to hear you are moving on from Abraxane. How long did you get out of it?
Which Doxil are you referring to? There is Docetaxel which Z pointed out is a taxane. Then there is Doxorubicin which is an anthracycline closely related to the red devil. But you don't get all the harsh side effects from it, like the devil.
I hope this helps and will help you make a decision.
Robin
0 -
Z, you have been on my mind. Praying for some clarity to come your way on your treatment.
Robin
0 -
Hartrish, I would recommend the Guardant liquid biopsy.
Robin, I have been on Abraxane 7 months now. The Doxil is liposomal doxorubicin - the adriamycin relative sans all the side effects. Infusion every 4 weeks and no hair loss! Docetaxel is Taxotere. I have taken it in the past but it could be in my future down the road farther. How are you doing? Are your platelets behaving?? How is Abraxane treating you?0 -
I finally found the courage to go to my primary care doctor and get the abdomen symptoms diagnosed. Amazing how hard that was for me. I just can't take another diagnostic with another potential disaster awaiting me ....
But I did it. I got an ultrasound which showed no gall stones and nothing obviously wrong with the pancreas. However, serum levels of lipase, a pancreatic enzyme, is high indicating pancreatitis. My lipase level is 480 and normal is 390, so not super high, but high. If it were 1000 I'd be in the hospital getting my sustenance by IV right now.
The symptoms of pancreatitis more or less follow what I am experiencing.
- Abdominal pain that may radiate to the back
- Nausea and vomiting
- Worsening pain after eating
- Tenderness to touch of the abdomen
- Fever and chills
- Weakness and lethargy
The doctor explained that digestive enzymes released by the pancreas are not normally activated to break down fats and proteins until they reach the small intestine. However, under some conditions these digestive enzymes are activated while still in the pancreas, they start breaking down the tissues of the pancreas and inflammation and local damage to the pancreas occurs. The inflammation then aggravates the enzyme production further and the situation escalates. He said that many medications can cause pancreatitis. Most likely the meds cause inflammation of the pancreas that screws up the enzyme production and the start the cycle, which then self propogates. I mention all this because many of the medications known to trigger pancreatitis are cancer meds.
The treatment for mild pancreatitis is a clear liquid fast. The idea is to shut down the production of pancreatic enzymes so the pancreas is no longer eating itself and inflamed. That resets the pancreas and it starts producing enzymes that are activated outside the pancreas again. I can only have liquids I can see light through until my lipase levels get back to normal. Apparently, the pancreas ignores anything that is not solid and you effectively shut the pancreas down for the period of fasting. Hopefully it takes a little nap, the inflammation dies down, and it wakes up fresh and ready to properly produce enzymes again.
This sounds appealing ... I was making myself eat solid food even though I have little interest in solid food. So lots of soup broth and light juices for me this weekend. He says it should resolve with this diet in a week or so.
So here we go ...
>Z<
0 -
Hi Z -
Just found this thread and am learning a lot. You are all so knowledgeable, and I am so new to this, so I don't understand a lot of the jargon, but I will keep at it and try to educate myself more. What I wanted to tell you is that for 10 years now, long before my BC diagnosis in 2013, my lipase levels have been high. Routinely in the 400s and up to the 600s. My primary care started testing them because I was having some stomach pain. Turns out it was something unrelated. I did see a gastroenterologist. The numbers seem to be normal for me and nothing to worry about and my pancreas is fine so far. But they do test once a year to keep track. Don' t know if this pertains to you, but thought I would mention it. Hopefully the diet will work things out for you.
Donna
0 -
JFL, Thanks for clarifying. You had a good long run on Abraxane. I have only been on it for 5 weeks and already my tumor markers have gone down from 625 to 277! So it seems to be working but my next scan will reveal more. But Im very hopeful. MY platelets are not a problem with this drug, just my red cells. I had a blood transfusion on Tuesday and feel like I have a little more energy.
Let us know what treatment you choose.
0 -
Z---So very proud of you!!!!! I know this was a big step for you, but I'm sure some of the worry is now gone. It is for me!!!!
0 -
Z I’m so happy you went knowledge is power though sometimes it’s so hard to force ourselves to do it. Here’s hoping a diet change will help with things.
Still working on educating myself here I’m very proud of all you woman, the guy at the lab the other day said to understand this stuff you need to be a doctor with ten years of experience I said well I know some woman who would disagree lol. Keep at it
0
