How are people with liver mets doing?
Comments
-
Timothy - Congrats on stable!
>Z<
0 -
Timothy,
Congrats on stable. You and I follow very similar paths. My wife will be starting with Xeloda soon, though it will be her 2nd line treatment. What you mentioned gives me hope.
0 -
Timothy, That is great news!!!!
Robin
0 -
My wife's biopsy result for her liver mets show some changes.
ER+ (90%) no change there
PR changed from +20% to negative
HER2 negative (+1)
Any ideas on what this PR status may mean treatment wise and what does HER2 status negative but +1 means ? I know there is a HER2 possible status of zero
0 -
Letmywife i posted on the Xeloda thread, I do wonder what the response will be about the status. What did your Onco say about it? I think only when it's Fish 3 or something like that, then they consider it HER2+. And what happens to it being PR- , it's the same situation with my daughter, I am thinking maybe she could try TNBC tx? I wonder. the ER is also very strong by her. 98%
When will you be starting Xeloda? Are they adding a/t to it?
My daughter is on Xeloda/Ixempra/Herceptin. I can't find anyone else taking Ixempra, i dont' know why she is taking it. Very odd.
0 -
Letmywife, Your wife's results are just like mine, but I received just HER2-, but it wasn't the FISH test so my MO is ordering it. She says the FISH is a more accurate test. I was once told by a previous MO that PR- meant it was a Luminal B type of cancer. I have never been told that by anyone else, so I don't know if all PR negatives are considered luminal B. Maybe someone else can clarify. I am going to write down this as a question for the head of clinical trials I am meeting with on Monday. He is an expert in breast cancer and works at several cancer hospitals and is well respected.
Robin
0 -
Mom,
You raise an interesting point. The FISH result is still not out. The HER2 score of +1 is "immunohistochemical" score. In March it was 0. We shall see what the FISH score says.
According to oncologist, since she is strong ER, she is still considered hormone receptor positive.
The fact I could find about Ixempra is that it's a chemo for advanced BC often given with Xeloda. I never heard of it either
0 -
Robin,
Thanks. I am also eagerly waiting for the FISH result. Please let me know what your MO says.
What does Luminal B mean treatmentwise
0 -
You can find a lot of articles on pubmed that basically say that the estrogen receptor depends on the progesterone receptor to function. That implies that if you are PR-, then estrogen suppression won't work because the estrogen receptor is not driving the cancer. This article explores that space, walks through the theory of the relationship between the ER and PR receptors and discusses the clinical implications. They conclude you are probably still responsive to hormonals, but it's complicated. The article is worth reading.
This is a more recent review of ER+PR- cancer.
With PR- you have a potentially more aggressive cancer that may be resistant to tamoxifen and hormone suppression. I freaked out a bit when it sunk in over Xmas that I was PR- and what the implications might be. However, I am PR- and responding to hormonal treatment. As usual, there is no bright red arrow telling you what to do. But it's worth reading the articles and understanding this enough so you can talk to your onc about how the PR- status is influencing treatment decisions.
>Z<
0 -
Thanks Z.
The article suggests that PR- responds better with AI than Tamoxifen. That explains because I do not think Tamoxifen worked for that long for my wife before she was diagnosed with metastatic disease. I wonder if the MO should have checked for her low level of PR at the very beginning, given her Lupron or taken out her ovaries and put her on AI from the very beginning.
We are going to talk to UCSF tomorrow and see what they say.
0 -
Letmywife, My previous oncologist said Luminal B doesn't respond well to hormonal treatment. But I agree with what Z stated above. I have seen plenty of women on this site respond well to hormonal treatment that were PR-. I remember when that oncologist told me that,,,,I went home and cried all night. He was always so negative....reason why I switched oncologists!!! I was originally only 30% PR+ and only got 3 years on Tamoxifen before the cancer returned. I was also 100% ER+ and was pre-menopausal. My oncologist never put me on ovarian suppression or recommended to get ovaries out. I know hind site is 20/20, but I often wonder if I had my ovaries out when first diagnosed, would the cancer have returned?? I knew nothing back then...I was a good little patient and.just did what the oncologist told me and took his word for gold! Now I know different and have learned to be my own advocate! I research and follow this site for a lot of valuable information. Get this.....I asked my MO if I could send my tumor sample to Rational Therapeutics for chemo sensitivity, and she said she had never heard of it. Really?? This shocked me!!
0 -
Robin,
My wife was pre-menopausal too and I still wonder why the doctor started with Tamox when there are so many studies showing low efficacy of Tamox for PR- (or low PR) patients. Like you, we also blindly believed in her MO back then. Not any more.
Our MO did hear about Rational Therapeutics but said not many people use it. We take that comment with a grain of salt but the reason we paused with RT are different. First and foremost is that RT takes decisions based on how tissue samples respond to different chemos in petri dish testing. That is a very different thing than testing of tumor cells inside a human body. A lot of times, successful petri dish testing (or even animal model testing) do not translate into successful therapy for humans. The other reason was that they needed a large tissue sample preserved in nitrogen. Most hospitals use formaldehyde in the US and a large sample means an invasive surgery. With all that said, will we ever consider it if we start running out of options ? Possibly yes, but depends on how long the patient wants to keep up the fight.
0 -
stage 4 de novo...my breast tumor was 5% ER+. PR- and her2 + (I don't recall a percentage ). My liver tumors were 50% ER + PR- and her2 +.
I started with taxol/herceptin/perjeta. After I dropped the taxol we added tamoxifen and xgeva. I have had zero issues going on 4+ years.
We did recently change from tamoxifen to an ai and a shot...my mind just went blank with the name...because tamoxifen has a conflict with the Zoloft and Wellbutrin...which I was on all 3 together for over a year...oh well. Everything is fine.
This is my long winded way of saying I think tamoxifen is standard of care for pre-menopausal women. (I was 34 at dx).
I haven't kept up with this thread much, but I wish you all well and I need to follow because there is so much to learn!
0 -
KJones,
I am no medical professional but my guess is that your continued success with your treatment (and I am sure it will stay that way) has a lot to do with Herceptin than anything else. After Z pointed me to a few articles, I did some study of my own where I found a common message that Tamox is known to be much less effective for PR- patients than for PR+. In contrast an AI had much better success especially when coupled with mTOR or PI3K inhibitors.
Again, this is just my layman's assessment.
0 -
All - LMWL just shared an article with me with a different theory on why ER+ PR- cancers are more aggressive. In this theory, the PR receptor, when present, acts as a brake. I do think it is a good idea to understand the different theories because it can influence what treatments might work and perhaps allow a deeper discussion with the onc. I am feeling a little more positive that A/I's can work on ER+PR-, contrary to what my oncologist said. Thanks for the discussion.
Kjones - Thanks for your post. Statistically, it seems well supported that tamoxifen doesn't work well on PR- but we're not statistics as you have proven. Congratulations on a great run. Look forward to hearing from you.
LMWL - functional testing generally tries to grow the cancer cancer cells from a small sample. They need to grow the sample to get enough cells. 60% of the cells don't grow or die, so the chemos are being tested on only 40% of the sample that will actually grow in a dish. According to my onc, the average functional testing results are poor.
Dr. N needs a large sample because he doesn't grow the samples. He has a way of causing them to form spheroids which are similar to tumors. In any case, the reaction you get from most oncs regarding functional testing is based on a different test that handles the samples differently and really doesn't work. I do think Dr. N has solved some big chunk of the issues with functional testing and gets better results.
It does require a different sample so it takes some forward thinking and, of course, it still may not work. I am holding off as well for the moment.
>Z<
0 -
KJones,
I meant to say that the efficacy of your treatment is related to Herceptin and not Perception. Sorry I did not catch the auto spell check on my browser. I corrected my post.
0 -
Wow I will read and reread all these posts, I do find when I come back to it after a while I understand things better.
Hmm to throw a wrench into all this, my daughter was PR+95% PR15% Her2+ 1 only KI67 30%she is Luminal B, which no Onco ever told us or bothered explaining to us, I found out about the importance in this site.
She was put on Tamoxifen of course with all the other chemo, rads, but was not told about taking out the ovaries, and BS was not in favor of mastectomy, he said studies have shown it did not make a difference. This lasted only 2 yrs, very short time on Tamoxifen which in itself is already a sign that is aggressive, then after much prodding to the Onco, a new biopsy was done, (also because scans were constantly showing progression), and it showed PR1% and then it showed the HER2+ change. At that time she was advised to have an oophorectomy/hystero asap, which she did. In her late 20's. It was eating me up. Not that she was thinking of more children at that point, but Menopause at 27… she dealt with it better than I did. But it did allow access to more treatment options for Menopausal women.
She had 3 biopsies. Biopsy of Iliac bone, Foundation One, then BT with Guardant360, then this year Foundation Act also BT (because there was constant progression). All have shown the same. Onco said to me, well we could see she does not respond to Hormonals, that's why she took her off Ibrance/Letrozole (they were trying it, even thou it's for HER2-). I was thinking if she is ER+98% how could she be not responsive to Hormonals, now I am thinking so is it because the PR is 1%?They don't take the time to explain. I waste so much oxygen wondering!
And also now they tested for Androgen Receptor, which came back at 75% I believe. Butwe have not gotten to speak about it yet. It seems in the future Onco wants to be able to access it. Not that there are known tx for Androgen Receptor in MBC but maybe….
Letmywifelive Thank you for looking into the Ixempra thingy. I understood that you were not so keen in going UCSF, do you have other options?
Zar what a terrific link you sent, I am trying to understand it, but it's very informative.
Robin - Letmywifelive there is def a problem with trusting you doc. It's hard for me to just let go. And no, I don't trust them. In a major Cancer Center just a few mos ago, I happened to ask my daughter if they gave her the Xgeva, and btw the Herceptin has to be given etc...( i called her she on the chair having the other chemo), she asked the nurse, and she said oh they took you off it, Onco was not in town, I was like what? they didn't tell us about it, but then Onco said oh they misread my notes, and because of that she had to have Herceptin started again as a new infusion(time wise) instead of just the regular follow ups. Not the end of the world, because I caught it, but this goes on all the time everywhere, in my opinion if nurses see something that has been given from time immemorial and it's not there, she should double/triple check and if it's a new thing, they should double/triple check. You guys no the drill.
And it's not just the doc in a private office as in the good old days, now there is a whole Hierarchy so whatever doc says is not enough.Oh I could tell you stories. Sorry for the banter, but I could so understand you.
0 -
We now have two opinions from two difference cancer centers
Background - my wife recently failed on Ibrance + Letrozole and now waiting for next treatment. She had bone mets which are still stable but developed 10+ spots in the liver (largest 1.5cm).
Stanford - Start with Xeloda
UCSF - Go for Solar 1 trial which is a randomized (1:1) trial of Alpelisib and Faslodex combination. Alpelisib is is a PI3 Kinase inhibitor. Of course she needs to have PI3KCA mutation for which we are pending test result. If she does not have the mutation, she will start with Xeloda.
We are thinking going for the Solar 1 trial is a good option since if she starts Xeloda now, she will be excluded from this trial.
Would love to get some feedback / suggestions.
0 -
letmywife,
My wife has liver mets and was on Xeloda for several months before scans showed progression in the liver and new bone mets. At that point, her doc recommended her for the SOLAR-1 trial. Unfortunately she only lasted on the trial for 2 weeks because she had major liver dysfunction, either from the trial drug or the tumors (we don't quite know). She's now on gem/carbo which is shrinking the tumors. I bring up her experience because I don't think prior treatment for Xeloda will necessarily prevent your wife from getting into the trial. I hope that it works well for her if you do decide to take that option. Xeloda is also a very good treatment for many people. I think the route you take depends on the aggressiveness of the tumors. Best of luck in your decision.
0 -
gp193,
You raise an interesting point. When I look at the exclusion criteria, I see the following
- Patient has received prior treatment with chemotherapy (except for neoadjuvant/ adjuvant chemotherapy), fulvestrant, any PI3K, mTOR or AKT inhibitor (pre-treatment with CDK4/6 inhibitors is allowed)
The UCSF onc also told the same thing that taking Xeloda at this point will exclude her from this trial. So not sure if it was the right choice for your wife's onc to go for Solar-1 after she was treated with Xeloda.
How extensive were your wife's mets when she started with Solar-1 ?
0 -
Letmywifelive awaiting to see what you will decide. You should know I called directly Foundation One(that's what you are waiting for right?), and spoke to someone and got them to fax me the report. They were very nice, Onco took a few more days to call me. In my case, I sent them POA of my daughter, and no problem speaking to them. If you have POA, maybe if you would like you could try to contact them and see if you could get the report in case it's ready.
Were you comfortable with those Oncologists?
Question for all: Onco did a B12 test it showed 376 (not too bad), Ferritin 64.0 Iron 45 TIBC 431 UIBC 386 Iron Sat 10.0 . Sorry to bore you with these numbers, but Onco never did these BT before. I just saw it on the Portal. Does anyone know what that means? Why would they have done this now? Nothing is so crazy on the BT that I could tell that would make do these tests. Sodium is on the margin. Hmm, what would bring that on anyway? Onco does not deviate from the norm in BT they do every week, in the past I've asked for Vit D etc...they did not think important to do. So why this? Next week we have an appointment again, I could ask then, but would like to have some background info to be able to ask the right questions. Thx for any info.
0 -
LMWL - The solar trial sounds interesting. If it were me, I would do the solar trial and draw every bit of benefit you can out of hormonals. If you've got the mutation and the alpalisib allows you to get some more time out of faslodex, go for it. That said, Xeloda makes short work of fast growing tumors so if you end up on Xeloda, that may work well. Very pleased that you have a couple of good choices from these institutions.
Did Dr. Munster consider the trial that she is running? Seems like an interesting immotherapy, hormone therapy, HDAC inhibitor triple threat. I like triple threats. Seems like cancer needs to be cornered with multiple attacks.
Reversing Hormone Therapy Resistance With Epigenetic-Immune Modification
>Z<
0 -
mom,
To be fair oncologists confuse me a lot. They are all humans so bound to have preconceived notions, bias and shortcoming. Also they are dealing with a disease that is highly unpredictable. So I sympathize with them as well when their predictions always do not come true. As far as clinical trials are concerned, they are also often limited by what trials their center offers.
Saying all that, I felt that UCSF is taking the right approach but only future will tell what was right or wrong. As non-medical professionals all we can do is to apply common sense but some times the complexity of cancer treatment is way beyond common sense.
Unfortunately I have no knowledge about B12 test as it was never ordered for my wife.
0 -
Thans Z. I am still following up with the trial coordinator on the trial you mentioned and let you know as soon as possible.
Lets just hope that my wife has the necessary mutation to be eligible for Solar-1.
0 -
My wife's doctor is at MSKCC, which is one of the sites for the Solar trial, so I'm guessing that the MO was able to get her into the trial despite the restriction on prior Xeloda treatment. At the time it seemed like the best option, but unfortunately it didn't work out for her. She has multiple and diffuse liver mets, though none were very symptomatic at the time she started the trial. Things went downhill quickly for her and luckily the gem/carbo has brought her back.
0 -
Letmywifeli was it Foundation One that it was sent to? If so would you call them directly? That's what I mentioned above, I did. SO Iwas able to check things out even before speaking to Onco. Just saying. Some people like doctors to get it first. If I could help it, I always try to get reports instead of waiting.
0 -
mom,
Stanford is using something different than Foundation 1 and they call it STAMP testing. I have been told it is pretty much the same. Thats why we are waiting for our MO at Stanford to get back and she is usually pretty quick about it. Here is some more info on STAMP : http://www.stanfordlab.com/esoteric/test-stanford-...
Z,
Regarding the trial Reversing Hormone Therapy Resistance With Epigenetic-Immune Modification, I just learnt it has been closed for ER+ patients. I am trying to get some info on the reasoning behind the same.
gp193,
Thanks for the info. My wife does not have diffused mets but several small ones. She is also asymptomatic. I am hoping that SOLAR-1 will be beneficial for here or at least not put her at a greater risk - if she qualifies for it. Do you know if your wife got the placebo or the real pill ?
0 -
LMWL - Thanks for the update on the Epigenetic Immune Modification. I'd be interested to know if they closed because it's not working for ER+ or because they had met their ER+ quota. I would let them know that you are PR- and possibly effectively TNBC.
>Z<
0 -
Z,
Thats the same question I have for UCSF team and waiting a response. They already know that my wife is PR- so there must be some reason why they did not bring it up. Btw, Dr. Munster commented that a switch to PR- is very common for people who progress on Ibrance.
They still do not consider ER+/PR- as TNBC as I learnt yesterday.
0 -
They still do not consider ER+/PR- as TNBC as I learnt yesterday.
Well, that is good news for sure. Very interested in everything UCSF says.
>Z<
0
