How are people with liver mets doing?
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Great photos, Grannax2. I can see a lot of family resemblance.
Thank you all for the congrats. To answer your question Amica, the wonder drugs are not chemo, but the hormone therapy Faslodex, and the Her2 targeted therapies Herceptin and neratinib. My onc and I believe neratinib is the star here. It addresses the Her2 mutation in the cancer, and we guessed, correctly it seems, that it was the driver at this point. The genomic analyses done on tissue and liquid biopsies showed us the Her2 mutation. My onc is going to bring up my case at tumor board again, mostly to share the success. Her2 mutations are not common, but with bc they are seen most often in metastatic ILC. The trial is a basket trial, so several types of cancer that have a Her2 mutation are being treated with neratinib. The other drugs vary by what type and subtype.
Nancy, what the heck is happening? I hope you can safely take some time off for your body to re-group. By the way, Halaven did not agree with me. Fevers, felt unwell, swollen ankles, etc. It just seemed like the wrong thing for me. But you have also had gemzar recently, so it is complicated.
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Grannax2 - What great pictures and memories to have!
Shetland -- Thanks for checking! It is all so complicated & crazy, which is what my body likes to do with new meds. Apparently gemzar can cause fluid in the abdomen so that is what was initially believed to be the swelling for me or at least how it got started. On Monday, I was put on 2 diuretics to see if that would help and then to see her yesterday. I have gained somewhere between 25 -35 lbs of fluid weight, have no pants that fit, etc. and was just plain miserable. My legs decided they needed to get in on the action and swell all the way up too. I could not cross one foot over the other knee w/o physically reaching down & pulling it up it was so full. Yesterday, I was at the point of "i don't care about covid or being in a hospital right now just put me there and tap me like a maple tree to get this fluid out.
MO thinks it was a perfect storm of lingering issues of gemzar, starting halaven and my counts going super low (and .092) and needing fluids b/c I was dehydrated but also iv antibiotics, etc along with some liver counts that went randomly higher. My system just freaked out for lack of a better term. We are holding off on the halaven to get this under control. She added high dose prednisone & doubled each of the two diuretics to hopefully get something going and attack it from multiple sides A STAT parencatesis (sp?) was also ordered & hopefully that will take place today or tomorrow. She has also referred me to a liver specialist to see if we need to do some more testing, a new liver biopsy, etc. Nothing miraculous yet, but there has been some reduction of swelling which I will gladly take. We are going to hold halaven until this is figured out.
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Nicole- Scans today? In your pocket.
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Grannax - awesome pics of you and your family. Thank you for sharing x
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Shetland. I'm so happy that your MO is able to figure out which drugs are working. It sounds so complicated..💞
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Good Morning Ladies.... So I am done with Xeloda...no big surprise there.
So my 2 tumors that were cryoblated under 1 "dome" so-to-speak, 1 of them has shrunk (as it was suppose to) the other looks to have grown. The other 2 tumors down low in the liver have both grown. I believe something like 0.2 cm now 1.2cm and the other was 2.8cm now 3.6 cm(not exactly the number the results aren't in the portal yet but I believe she said something close to that)
I will now have a PET to have a base line for starting the Doxil. She is ok with going to doxil over Abraxane first based on my level of disease. She said if my liver had been loaded with mets or if I had wide spread mets in a number of organs we would go right to Abraxane but she felt Doxil will be ok.
I asked if she had any patients with my type of cancer ER+ PR- HER2- GRADE3 that are NED on Doxil...she said there are 5 patients of hers with my same cancer on Doxil but none are NED...I (think) she said 3 are stable...I told her I do not have high hopes for Doxil either but ok..... If I fail on Doxil too we will look to a specific trial she wanted for me (but I am not yet eligible for bc I would have needed to fail 2 lines of Chemo) or we will then go to Abraxane.
I feel .......very..... Disappointed. I don't want to say I am upset because in my gut I knew, and there are some of you that know I didn't feel it was working from the get-go...but I kind of feel like... ya know what you take a test and during the test you pretty much know you are gonna fail the test...then you get the graded test back and it is a failing grade...you are not surprised..but you are disappointed and sad.
Ladies...I have now failed 2 treatments in exactly 1 year... The only 2 treatment I have tried.
Any hope...or words of encouragement and real good stats or stories of people that failed their first 2 lines of treatment like me but then eventually had SOME kind of success ...I would love to hear....Nicole
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I am very sorry to hear this Nicole. I had high hopes for the xeloda. I know there are women on here that have had success with it with liver mets, and also women who did not have success with it. I really hope some will comment on what they switched to and worked. Its clear that drugs like ibrance and xeloda don't work for everyone. I know there are women who have had long term success through switching treatments, and that clearly would not have been necessary unless they had multiple failures requiring it.
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Nicole, I had 3 lines fail me in about 18 months and am now on weekly doxil. Alpelisib & falsodex, xeloda and eribulin. Technically Eribulin didn't fail but the SE's for me were pretty bad so MO decided that we may cycle back to it on a very low dose later on. I've been on doxil for 10 weeks, had a CT 2 weeks ago & it shows growth but much slowed growth and MO thinks maybe she scanned too quickly at only 8 weeks, but wanted to make sure it was at least slowing things down. My TM's last week also dropped 40 points. I will have another CT in 6 weeks.
I always seem to have a hard time on new drugs, my body just doesn't want any part of them which is why we are doing the weekly. Very do-able for me. Very hot feet on chemo day, I ice them. I ice my mouth during the push & use magic mouthwash for a couple of days. They give me pre-meds of anti nausea & steroid. I have terrible insomnia on night 2, don't know why but every single cycle. RBC is low but i don't feel tired etc. Good luck. dee
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Nicole- So sorry to hear of your progression. I do not have any advise for you, sorry. But hope others will chime in here to give you some help. Keep us informed--I don't know if there is a Doxil Thread, but post here. Hugs to you. If you need an ear, PM me anytime.
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Nicole, first, you did not fail two treatments; they failed you. Maybe Doxil will work for you. It is a different sort of chemo than xeloda. If it does not, maybe your onc will come up with a great trial for you to join. After xeloda, the next two chemos I tried did not work. But then my onc suggested this trial with a kind of targeted therapy I had not used before, and it is working. We used my Foundation One and Guardant 360 results to help us choose.
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Hi Nicole. Yes...YOU are not failing anything, the therapies are failing. Always keep that in mind. I am not sure what you have been on already???? I could not tell. My first site for metastasis was the liver - about 8 tumors across both lobes. I was on Ibrance plus letrozole for about 5 months but because of low ANC, switched to Verzenio plus letrozole. I have a achieved a complete metabolic response by PET in the liver while on Verzenio (7 months) at not quite 1 year out. Liver has remained stable as CMR, but bone mets now creeping into spine. For right now, staying on verzenio and switching to faslodex, adding xgeva to see if we can slow the bone mets. I am also hoping if no more appear, we can zap the 2 that are there on L1 and L2 with stereotactic radiation surgery. If the liver mets light up again, I am going for Y90 treatments. Ablation not an option for me. I wonder if Y90 could work for you. Grannax2 has had the procedure twice with great success.
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Grannax2 - BEAUTIFUL photos!!!
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Ladies and Husband11 Thank you...once again you have succeeded in giving me happy tears....
Shetland and Hope....I never thought of it as "they failed me"... As I read your post and that line out loud to my husband we both just teared up.
Hope I did Ibrance/Letrozole/Faslodex for my first line....so we don't know which one out of those or if all failed... Then I went to Xeloda.
Have thought of a few positives:
1. I don't have to take pills anymore
2. I only have to go once a month
3. I don't need a port yet
4. I wont lose my hair yet...
Just trying to find the rays of light (besides God) in all of this...
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Just a quick update === I had my parancetisis this morning. They drained essentially 10 lbs of fluid out of my abdomen which was great. I could immediately feel a difference. But...the interventional radiologist said that much of my fluid was actually under the skin and couldn't be removed in that way. I'll have to continue you with the diuretics to get that fluid out. So here's hoping the combo will help!
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Nancy,
Glad to know that the paracentesis helped somewhat. Hopefully the diuretics will get the rest of it soon. Thinking good thoughts.
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Nicole, I am sorry to hear about Xeloda. Good luck with Doxil. You may be in a better position for Doxil to work well because you have not taken an anthracycline yet, while nearly everyone who takes Doxil has already taken doxorubicin.
Judy Perkins tore through 12 treatments in two years and then was "cured" on a trial of immunotherapy (NCI TIL trial) after her doctor gave her the "talk" and was pushing hospice. For better or worse, this disease is unpredictable.
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Nicole, I'm so sorry to hear that Xeloda failed you. You are such a fighter and we are all in your corner.
Xoxo Katty
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JFL thank you!!! Katty...Thanks I need you all in my corner and I am glad to have you here with me.!
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Dear Nicole, we always have hope, that is why set-backs are painful. Xeloda, in my impression, is a strange drug, as far as I read on these forums. Some get years on it, and even get to NED, others do not react at all... I somehow don't understand why there are almost no partial/golden middle cases with this drug:/ As I always said, if your tumors are aggressive (high ki67, high grade) harsh chemos (like anthracyclines and taxanes) should work... Big hugs to you and let's move forward. Saulius
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Sualius..thank you....
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Nicolerod, my liver mets are also high grade and responded to Adriamycin and cytoxan at dx. I had never been on these treatments and was told that was even better for cancer cell killing. Once my mets were stable, I was switched to I/L..which unfortunately failed you.
This could be your magic chemo! Why not?
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From your lips to Gods ears Sandi......(((((hugs)))) thank you!!!
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Nancy, glad to hear you are getting at least some help, what a nightmare!
Nicole, count me in as your Doxil sister! Although Xeloda is one of the few drugs that have worked at all (taxols, nab-pax, eribulin, kadcyla, halaven...and a few more I've forgotten)--I am now doing well on Doxil. It is SO much easier for me to tolerate than Xeloda, you still have the hand foot syndrome but not as bad. I take it every 3 weeks, but that is just so I can do it together with the Herceptin.
Interesting to hear from those of you who have done Foundation One. I have set aside the 2000 dollars to do it in hopes that it will help identify some international trials I can get my MO or his students to sign on to. Otherwise the Doxil is end of the line for me.
Also pushing for the Y90, and have found a doctor just north of Stockholm willing to look at my scans. They do Y90 regularly for other types of cancer including primary liver cancer but rarely for BC. I am waiting to get my scans in late May before pursuing that further.
Suddenly our litte Sweden seems to be in the news everywhere as the "corona virus outlier" ! But gosh, so much misinformation. well, that's a topic for another thread...
hugs to all. What a thrill to see photos, Grannax2! Such a beautiful family.
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Thanks Arolsson....the Doxil thread doesn't seem to move that often....
not much info flowing in there.... Is the Herceptin working for you??? 0 -
Grannax so beautiful!!
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can someone speak more about Foundation One and Guardant 360? I think my clinical trial is doing Foundation One on me but they're not sharing those results with my MO or me.
IF/when this immunotherapy trial fails me, I'm wondering if I should get these tests done. But I'm wondering what it would help with exactly? Does it help with picking among the more regular chemo treatments or is it only to help access immuno trials? Trials here are closed now for new enrollment because of COVID and even when they should reopen, I don't know that I could easily access many of the newest trials in the US. And in BC there are only so many drugs which are covered for MBC and they tend to be the 'typicals' xeloda, doxil etc. So do those tests help with selecting among those standard treatments?
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MOTH
I don’t see why they would not share the results with you. It’s your body and your info to be better informed about the makeup of your cancer and possible future treatments.
I had my molecular profile done on my tumor biopsy through MD Anderson. It shows where I have gene mutations. This will help when choosing some of the newer targeted therapies that work with that mutation.You may already know this but as an example, if you have PIK3ca mutation there is a drug called Piqray. I did not have any mutations that would help me here.
The ESR1 mutation which I do have has shown to be resistant to AI therapy so I skipped using an AI in metastatic lines and went with faslodex instead. There is a trial for people with this mutation but I did not qualify.
FYI- I had 2 “blood” biopsies and both came back negative for any mutations so I had to get actual tumor biopsy on my liver for the molecular profile.
I hope someone else can help you more.
Dee
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Moth, my MO only gave me a page or two of my first report and didn't give me the second. I learned you can call F1 directly and they will email it to you or let you download the form online. I can't remember which. Call them. Phone number is on their website. Or check to see if you can request it directly on the website. (Guardant is also available to the patient directly - on their website I believe. I found mine there before my MO reported the results.)
I have had both F1 and Guardant 360. The two F1 tests were conducted several years apart and were pretty consistent. The second aligned with the first for the most part except that it showed I developed an ESR1 mutation which is typical when one fails AIs. Also, the second report listed other mutations or amplifications that were not available when I first had the test done. They are constantly adding to their test. With Guardant (which I had conducted a year in between the two F1 tests) it stated that I had zero mutations/amplifications, although both F1s showed a large host of amplifications and a few mutations. With Guardant, it is a blood test and will only pick up what is circulating through the blood. I did have that test done when I was on Abraxane and it was working. May be better to have the test when one has failed a treatment to understand what presents at that time.
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thanks for explaining a bit more about these genetic tests! We don't really do them here as part of treatment. Even oncotype is still sort of newish for us and not everyone qualifies for it (though if they have money they can do it privately of course). It's a whole privacy hassle too as sending medical information across the border freaks out our privacy commissioners so there's a gazillion consent forms.
When I signed up for the trial I gave permission for them to do all sorts of genetic testing on my samples but they do not release that information to us. They did release that I was PD-L1 positive because that determined which arm of the study I'd be randomized to. I believe they use all the other information later to analyze all the data. The only thing I will get from them is that if/when this combo stops working for me, they will do some genetic analysis of a fresh tumor sample and they will give me that info which we can then use to guide my treatment further. But honestly I'm not sure what that analysis is... I've been in such a daze
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Sometimes the genomic tests give you useful information, and sometimes they don’t. I have had something like three Foundation One and three Guardant 360 tests. The reports show any possibly effective drugs according to the mutations, including standard approved ones and ones currently in trials. They also show any standard drugs that might not be expected to work because of a particular mutation. Cancer acquires more mutations as time goes on, presumably in response to treatment, as it tries to find a work-around. So my first F1 showed only three mutations and no treatment suggestions, while my most recent one showed something-teen mutations, three of them targetable. My onc and I guessed that the driver was the Her2 mutation that had shown up a couple years earlier as well. (At that time we chose to go with the old standard Xeloda.) My insurance approved single-agent neratinib but we decided to go with the SUMMIT trail three-drug combo for Her2 mutated ER+ mbc. Bam! It worked. So that is a genomic testing success story. Generally the time to test is when you are contemplating a treatment change. In line with what JFL said, I learned that with the liquid biopsy, if there is not a lot of tumor or if you are still on treatment, there may not be enough circulating tumor DNA to give you much in the way of results. But liquid biopsy is a good option if you cannot safely get a tissue biopsy, and it avoids the problem of tumor heterogeneity. My trial also does genomic testing that they do not share with patients. It is good your trial does share test results if/when. At some point you can ask what testing that is.
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