How are people with liver mets doing?
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Bliss,
I just noticed that you listed that you are HER2+. Just a thought -- perhaps you could ask your doc how that might impact your reaction to hormonal treatments? I have no idea how you get around this, but perhaps she could add a HER2+ treatment to the mix? Or what about something like Shetland Pony's trial -- the SUMMIT trial -- which incorporates HER2+ treatments with faslodex and neratinib?
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BevJen,
I need to update my profile since I'm not considered Her2+ anymore per FISH, but am 2+ by IHC, so we consider me Her2-low. Thanks for the reminder of Shetland's trial and I will ask about that. She said we'd hold Piqray in my back pocket, but now that I know what it can do to me, I'd be willing to try it again albeit at 200mg dose instead of 250. I have the PIK3 mutation per my liver bx and it seemed to be working on the cancer since my TMs were dropping.
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Bliss,
Shetland and I share the ERBB2 mutation(s) but we are not considered Her2-low. But, as you know, SP is responding well to her trial that seems to hit all of the bases.
I also have the Pik3CA mutation necessary for piqray, but I've been scared off of it. But if your doc is willing to titrate up with that drug, if I were you, I'd consider using that one again. I just checked on clinicaltrials.gov, and there are no locations for that Summit trial in Colorado. However, I do think that some docs are using the drug (neratinib) outside of the trial. Also, though, it might be worth asking about just going on an anti-HER2 drug.
I guess it depends upon how adventurous your doc is and also how friendly your insurance co. is -- if it's not FDA approved for your situation, I'd venture a guess that you won't get it covered by insurance. Big sigh.
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Bliss- The mixed report is tough. I care that you are having to deal with this and hope for the perfect next step.
MOTH - hoping for a good report for you.
Sadiesservant- gut punch cancer reports is s good description. hoping you can get the biopsy and genetic testing in Canada. It does help with finding possible drivers of the cancer. Meanwhile we are here and care.
Dee
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Sadie, Sorry too that you find yourself here, but welcome. It sounds like you enjoy your job and the paycheck, so I agree with the others to stay until you no longer enjoy it. I was already happily retired about 2 years before my dx but I sure did appreciate my job and my work friends when I was going through a divorce years ago. Having a “normal place” to go in times of stress is a big help.
Bliss, sorry about the increased liver mets. I hope your next treatment knocks them back down. If I remember right you’ve been NED for quite a while? Hopefully you’ll be back there for another run before long.
I don’t post here all that often but I read and feel all of your ups and downs. Hoping to hear from Nicole soon that her pain is improving. Saulius, your son is adorable.
I have a liver microwave ablation coming up in about 3 weeks. I’m hopeful for its benefit but a bit nervous too. I’ll keep you all informed.
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BevJen, thanks for checking on Colorado trials for me. I already went through 3 treatments with Her2 drugs that failed and why MO decided to biopsy the liver. She's thinking the PIK3 is now the driver of my cancer rather than Her2, and why I'm willing to go back to Piqray now if Verzenio has failed me as it seems.
Thanks Dee & Rosie for the well wishes. I was NED with bone-only for 4.5 years, but that ended Dec. 2019. Yes, keep us posted on your ablation, Rosie.
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Dear Bliss, mixed reports suck:/ I sometimes wonder why CDK inhibitors almost "cure" some and for others do nothing... IHC HER2++ means it did not loose Her2 properties completely, so as BevJen says, it would be good to target it with, for example, ShetlandPony's (let's call it like this) protocol. I wonder how MOs approach this: clinical trial interim results are good, toxicities are more or less known, all drugs are approved, so can they decide to go for this combo or they would never do that (I mean they would do that only within clinical trial)? Saulius
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Saulius, good point about Her2++, and I agree about the CDK inhibitors. Thanks for your input. My onc appt. has been moved from Friday to tomorrow, and I'll be armed with questions.
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Saulius,
The one thing that keeps our docs from experimenting at all in the US (among other things ) is that if our Food and Drug Administration has not approved a particular drug for a particular purpose, you cannot get insurance coverage to help pay for that drug. For example, I am now on keytruda. But there was a question before I went on it whether it would be considered "off label" until my MO stepped in and said -- no, it's been approved for tumor mutation burden high by the FDA. If it's off label (not approved for a particular purpose by the FDA) then you can have a heckuva fight to get coverage paid for.
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Bliss, hope your MO comes up with a viable plan. You could use somebody up there cutting you a break.
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Hi all. I am not sure where I got this article, likely from someone on this site!! (so thank you). It's worth a read - and maybe some hope - for those of us who are Her2 low (Her2 1+ or 2+ by IHC/ neg by ISH). No ERBB2 amplification.
HER2-Low breast cancer:pathological and clinical landscape. J. Clin One Vol 38, Issue 17, p1951-1963.
Looks like some challenges but also possibilities - early stages, but some hope!!! Anyone following or hear more?
Looks like the DESTINY-Breast04 is testing in Ph 3 in this population, Some antibody-drug conjugates with Ph 1 data that seems promising. And vaccines. We just need more and better drugs!
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Hi, got my CT results yesterday & I too got a mixed bag.
on the plus side - liver mets continue to shrink! They're not gone but they're still shrivelling up, even with a 6 week break from treatment during which I had rads (& all my liver fnxn tests are normal for months now. Yippeee!)
neutral - lung met which was radiated in Dec is probably shrinking but might have new gunk beside it. But it might be inflammation or encapsulated necrotic tissue or who knows what. Radonc told me this scan would be too early to tell if the radiation worked so I think we just don't know anything here yet. I still have a bit of a cough so something is there.
possibly bleh - something new on T10. They're not sure what but it's something and I'm going to have a nuclear bone scan to see if that gives more info.
I also got my Foundation One results from the lung met biopsy and the only sort of actionable thing is a PTEN loss ... I had been in a Roche trial for ipatasertib which apparently targets PTEN loss. But I was randomized to the placebo & then the trial ended; MO is trying to see if Roche would give me ipatasertib now but it doesn't seem likely as it's not a Health Canada approved drug. Otoh, if I'd been in the tx arm when the trial closed, they would have let me continue it. So, she's trying to convince them. Apparently we have no PTEN targetting drugs in Cda right now & the only trials are for chemo naive pts.
So - I'm happy about the liver mets continuing to shrink as those were definitely trying to kill me last year.
The lung might be trying to kill me but we don't know. And the bone - well hopefully it's nothing and if it is something, we'll problem solve then.
hugs everyone
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Hi Moth,
As you know, PTEN tumor suppressor activity is low or missing in many MBCs.
The new statin, Pitavastatin, principally kills cancer cells that have low PTEN activity, so you could see if this would help with the lung mets. It scores more highly than other statins in cancer killing. I read a study already combining it with other drugs to fight ovarian cancer
https://www.sciencedaily.com/releases/2020/03/2003...
https://www.pnas.org/content/117/8/4158/tab-figure...
https://faseb.onlinelibrary.wiley.com/doi/abs/10.1...
Also, the supplement i3C (broccoli extract) selectively boosts PTEN activity in cells that have not lost the gene
https://www.cancer.gov/news-events/cancer-currents...
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Moth, sorry you got the mixed bag, too, but shrinking liver mets sounds like fabulous news. T10 could be something already healed or maybe degenerative; fingers crossed. I think it's positive, too, that the radonc thinks it too early to tell about your lung met. A shame you were in the trial placebo arm, but good on your onc to fight for approval just in case.
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Bliss- you could look into Enhertu- it’s the drug in Destiny04- I heard about 37% response rate for Her2 low- JFL is on it outside of a study and Theresa45 is in Destiny04.
It was mentioned to me at UCSF for my Her2 low when I progress. You need a few biopsies in the study. not sure if they can be bone biopsies, but, the study does not require “ measurable disease “ basically meaning bone only Mets is ok.
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Cross-posting. So, my appt today was with another of MO's PAs. We discussed possible next steps, but she said although I did have some progression, they think I haven't been on this treatment long enough to make a difference since I was off tx for a while. So, we're gonna give it another month or two unless my TMs skyrocket or liver enzymes go crazy. We'll rescan and then reaccess. Sounds reasonable.
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Dear Moth, your report sounds good... as usual, reports are never good enough, except for when they are NED:/ Let's hope shrinkage continues and that these other "spots" will disappear too.
Dear Bliss, wow, seems you have a very robust team, and latest decision sounds really reasonable. I also forgot that you were off drugs for some time which makes it even more reasonable.
Dear BevJen, thanks for explaining the insurance but cannot they be "outsmarted"? I mean, if your MO sees a good combo in clinical trial with success, and both drugs in that combo are already approved for BC use, could you get both drugs covered by insurance if prescribed by your MO? I believe insurance guys are smart enough to know the combo is not yet approved but maybe there are some workarounds to get these drugs "separately" and then go on as per clinical trial protocol? I am asking because here in LT all oncology drugs/combinations are state guaranteed, so MOs cannot improvise at all but US system seems much more flexible?
Saulius
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Saulius,
I'm not sure about the ins and outs of getting drugs for compassionate use or other ways to get them, and my MO is "very by the book," meaning that she doesn't vary from what the FDA says. I think, but I don't know, that some MOs are able to get around "the rules" by prescribing certain ways. I have read on these boards that some people are using combos that I wouldn't think possible, so who knows how their docs work this out? I know that some docs do use drugs "off label" but I don't know how that works out. All I know is that I was shaking in my boots when the financial people at my cancer center questioned the use of keytruda/pembrolizamab for me because I would not have been able to afford that drug if it wasn't covered by Medicare.
I guess there are benefits to each health care system. In yours, drugs that are given are guaranteed payment. In our health care system, not so much. And here, the whole insurance thing is very complex to understand.
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I have not posted for sometime. I have been struggling with pain and swelling in my legs. Three weeks ago, it started in my right leg. I was in the hospital for 4 days on IV antibiotics since the drs thought it was cellulitis. It got better so I was discharged on oral antibiotics. After a couple of days of coming home, the right leg started to hurt again and the redness/swelling returned. I went to the lD care specialist who started treating me with IV antibiotics. After 3 days, I thought my leg was getting better when the snow storm hit and everything was shut down for a couple of days (yeah, bad timing!). In the meanwhile my left leg started to turn bright red with swelling and pain. The ID specialist didn't think it was cellulitis, since it looked different. He has been talking to my oncologist all along and after seeing the pictures of my legs my MO thinks it is a delayed reaction to Doxil. My chemo was put on hold during these past 6 weeks since she didn't want to complicate the issue. I am hoping the leg issue will resolve soon so that I can get back on my treatment.
Yesterday the MO talked about getting me back on treatment from next week, instead of Adriamycin she is going to give me Gemzar/Carbo + Keytruda. I hope things go well and there are no further set backs. I have been referred to a dermatologist who specializes in skin toxicity issues due to chemo. Maybe he will have a magic wand to get my legs back to normal!
Have a good weekend!
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Cure-ious, thanks for that info. Very helpful as always!
S3K5 - ouch, oh no. I hope your legs heal up quickly. Fingers crossed for derm magic wand and I hope keytruda is good for you!
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s3k3- how horrible! I have had cellulitis twice in my Lymphadema arm. I hope whatever you have goes away and stays away. Have they checked your IGG levels? Mine tanked from cytoxin and I have had to be on IVIG ever since. Get well and get back on track!
bliss- hope continuing the current treatment packs the punch you need
MOTH- great news about your liver. Let us know about the bone scan. My SBRT treatment to the lung took several months to show real change.
Rosie- hope your ablation goes well. There are a few here who have had that procedure- check out that thread on local liver treatments.
I appreciate keeping up with all the helpful stories here!
Dee
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Sadie, so sorry you have to be in our club. You'll find lots of support here, though.
I woke up angry this morning I really wasn't sure why until I started to brush my hair Yep, the hair falling out has begun I was hoping for a small miracle, there have been a few on Eribulin who have not lost their hair
As you all know, I should be good at this loss of hair thing since it's my fourth time I'm honest, I'm not. it's not one of those things you get good at EVER
I was sort of using denial as a coping tool Did you see the verb “was" Now, what shall I use to cope? I haven't even gone to look for a wig More denial This morning as I brushed a sink full of my long, white hair out into a pile, I still brushed the remaining hair into a ponytail bun My denial for today
Am I feeling sorry for myself? Yes All the other times I've done this I could say that it's only temporary With stage four this will be permanent Most likely I will go to my grave bald I'm on my last ditch effort for a chemo that my tumors will respond to, according to my MO and me I've exhausted all local liver TX This is it I won't know until April if it was even worth the effort That's why this time is different No wonder I'm angry
Meanwhile, I started Cycle 2 of Eribulin on Wednesday My first Cycle started on January 15 So, today is day 24 since my first infusion On all of my other TX, that caused hair loss, it happened on about day 10 to 14 I guess the weekly doses are smaller and took three infusions for the process to get to this point I'll have another infusion on the 10th
On another subject, I am having trouble getting the second dose of COVID vaccine. it's supposed to be tomorrow but it's going to take a miracle for me to get an appointment for tomorrow, the way things are going I'm still going to pray for a small miracle even though the hair one didn't work out
Wow, sorry this is such a long post, mostly about hair loss. Of course, we all know it's not really about hair, it's about this deadly disease Especially, deadly liver monsters that keep growing in spite of our efforts to keep them at bay I'm four years into this and fortunate to have had these four years, we've lost so many who didn't get nearly so much time
I'm sure I'll find a way to cope, one that's more productive than anger, but probably not today I'll give myself today and then move forward I am only able to write this because I know all of you get it Thanks for that, BCO liver mets friends 💞
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Grannax- My dear virtual friend. You have a right to be angry. And to feel a bit sorry for yourself. Who wouldn't. What we (MBCers) have to go thru. I lost my hair once (so far) when I had the A/C chemo at the beginning. I now have a full head of hair (though thin), but probably will have to lose it again in the future. And I dread that. Boy, do I dread that.
I have read that a person can be a couple weeks late on Covid vaccine #2 and it still be ok. I will pray you get an appointment this week.
I posted yesterday and today on another thread to another MBC sister about my fear of what progression will look like for me in the future. I asked my MBC sister what her experience was like. I know each is different, but I wanted to know what MAY be in my future. The uncertainty. The fear. God this is hard.
I will continue to pray for you Grannax, my strong, wonderful sister.
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Grannax, that's about the same timeline as me losing my hair on Eribulin, about the same time the neuropathy hit. Fourth time I had lost my hair as well, it sucks each & every time. Scalp was really tender this time. It's was working, didn't fail me, but the neuropathy in my feet was severe. Severe enough that Dr's were concerned it may become permanent. So I could as some point try it again, if I wanted. Good luck, I hope it's the ticket!!
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grannax2
Emergency hug!
Dee
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Grannax, you have every right to be royally PO’d. This disease sucks and is so unfair. But I sincerely hope it will be the ticket and Eribulin will turn things around.
I’ve been slow to follow up from my earlier post. It’s been a busy week. Thank you all for your kind words and support. Finally got a copy of my CT report late Wednesday and am a bit puzzled. The report indicates there are two lesions, one in the right lobe and one in the left, both approximately 2 cm. The left lobe lesion is a bit smaller than that. However, my MO indicated that there was about 10% involvement which doesn’t seem to jive. I’ll have to follow up with him to ask - he may have looked at the scan himself and decided there were additional areas of concern. I have started Xeloda but intend to pull together research material in preparation for a conversation about interventional treatments.
I also appreciate the comments about work. It’s been an ongoing saga for me. While I love my job at this point, four years into this, it’s getting harder. Some days it’s easy but other days not so much. My job is often very stressful and demanding with crazy, unrealistic timelines that can translate into long days. I finally took the step to cut back to what was supposed to be four shorter days a week but it has been with limited success. I can typically manage holding firm on my day off (but not always) but the shorter days are a joke, partly due to my own inability to walk away I admit. It’s the way I’m hardwired. But LTD is proving to be challenging as the system is not designed for people like me who want to keep working but will have reduced capacity over time. As a result, some of the financial impacts are almost more significant than if I just go on full disability. And OMG those forms! I’m a bureaucrat but even I think they are over the top, particularly the ones my MO is supposed to fill out. (I told my boss that this LTD thing was going to kill me before the cancer does! Good grief.)
I think where I have landed is to work full time over the next few weeks to see how everything sorts itself out, kicking the disability can down the road a bit.Let’s see if I’m successful.
Thanks for listening and sorry for the long post.
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oh Grannax , I just went through the same. This is my second time. I had grown out my hair , had the awkward phase , the mullet , and in September, I finally got my first big cut. It was gorge and all evened out. It was a day I was looking forward to. But I was rediagnosed in December . I was told it would likely thin vs fall out. I got through cycle 1 (three treatments) intact , but then it started . First slowly so I thought maybe it would just thin.. but then it started coming out faster and faster with bigger clumps. So I had to shave it. It felt awful. I don’t think it ever gets easier , even if it’s your fourth time.
It adds insult to injury. You feel unwell and look it as well (atleast that’s what it’s like for me )
sorry you’re dealing with it yet againDoresnt quite feel fair
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Grannax,
I've only lost my hair once, on my first go-round in 2004, but I still can feel your pain. For me, I think that was the most significant side effect of the whole thing -- and that, despite the fact that I was sick almost all of the time, slept all the time, etc. I can only imagine how this difficult this is the fourth time.
But try to keep the faith. This drug may help you significantly and that's what's important. Also, as we always say here, there are a ton of drugs coming out all the time, even if you don't have a mutation for some of the currently more popular ones.
Hoping that tomorrow is a better day. Thinking of you.
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Hi Ladies...it's been a while. Thank you for all of you who sent private messages, asked about me, and most of all prayed for me.
So I am going on week 7 from the Y90....it has been the roughest thing yet far of my Stage 4 journey. I have not taken the Dillaudid pain med in 7 days. I will NOT take it unless my pain goes above a "6". I took some Milk Thistle last night because my liver still hurts daily very sore...and I am confused why bc supposably the Y90 does its "stuff" within the first 3 days after procedure. When I asked the IR about it she honestly said she hasn't had anyone have pain in the liver especially this many weeks out usually if people even have side effects it's usually within the first 1-3 weeks. That didn't happen with me...the first 2 weeks I was great...it was after that everything started. My whole back is hurting very bad like achy really really achy. I have been doing shoulder rolls every day and aching a little backward hands on hips (per my neice who is Pys. Therapist) I can't take any ibprophen bc of my stomach and tylenol does nothing. Bev was right with her original thoughts when my CT scan (3 weeks out) showed thickening of the colon wall (coloitis) but really that wasn't where the majority of my pain was it was and is in my stomach. Like BAD acid pain. I am taking Prilosec 2 times a day (actually I dropped to once a day yesterday to see how I do) and Pepto bismal in between and I have to take Xanex to sleep through the night. I still am unable to lay on the right side or flat on my back.
Not being able to lay on my back is VERY VERY worrying to me right now because I have the PET scan tomorrow and I will have to lay flat
. Originally my MO didn't want to PET yet bc of all the inflammation but the IR wants to make sure there is NO uptake in the stomach or colon etc. (bc of me still having pain 6 weeks out.) Lets not forget I was due for PET and MRI's February anyway. So on top of worrying about pain during it I am worried about them finding more cancer....or that the cancer in my C7 is worse I mean I have been off of treatment since December Anyway thats where I am at. Still not out of the woods.
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Dear Nicole,
I think about you every day, and I'm so happy to see you post even though it is about your ongoing pain and struggles. We will all be with you for your pet scan today and hoping for good news and comfort. Again, it was good to "hear" your voice.
XOXO
Katty
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