How are people with liver mets doing?
Comments
-
My heart is giving you a gentle hug, Nicole
0 -
Hi everyone. I haven't been on here in a while (life has been busy with kids at home during the pandemic!
). I am wondering if anyone has been on Trodelvy at a lower dose and then increased it with success? Also, does anyone have experience with both Trodelvy and Enhertu? I posted yesterday on the Trodelvy thread, but haven't had any responses yet.
I was on Trodelvy June 2020-Jan 2021. I was on a 50% dose the entire time, and I had a really spectacular response, but unfortunately had progression in January. We debated going up in dose, but decided instead to try Abraxane. While I had one of the larger liver tumors respond to Abraxane, the rest have increased in size and activity, so I need to move on. I am again thinking about going back to Trodelvy, but at a higher dose. I am also looking into access to Enhertu. So curious if anyone has any experience or words of wisdom.
I am heavily pre-treated and the Phase I trial world seems quiet right now....
Thanks for any thoughts
0 -
Nicole - Sending hugs and wishes that you start feeling better. It is ok to complain. How else are we going to find out about SEs, options for treating, including a different drug. SEs are real, and sometimes this site seems like the only place to discuss them.
0 -
Nicole, Thinking of you and hoping you’re feeling some improvement in your pain. I can understand that you can’t live with the pain you’ve been having but I still have hope for you to get past this. I bet your new pup is cuter every day
0 -
Thanks all...
I spoke to my MO yesterday she agreed to stop the Verzenio and try to get my stomach under control. I was about 10 days or so in on it...she said it is usually after the 2nd week that GI issues start...though MOSTLY its usually diarrhea...She couldn't believe I am actually constipated on it. She asked if in a week or so if my stomach is better would I want to try the Affinitor after all....it doesn't have the same issues..(of course it has different ones though)...I said I will be willing to.
My stomach is still bad today but not as bad right at the moment as yesterday. The Sucralfate does seem to help a little but only for a short time...I am also doing Tums.
0 -
Nicole,
Happy that the pain is somewhat better. If I'm not mistaken, one of the SEs of Protonix can be constipation, so maybe that, combined with your usual issues, is why you are constipated on Verzenio. Hope the extra stuff is helping you -- Tums, etc.
Hope you have a good weekend.
0 -
Nicole, glad you're doing better, but sorry Verzenio has constipated you. I didn't have diarrhea with it either. We think it may not be working for me now though or maybe it's doing battle with the liver tumors; I hope.
I've been lucky to never have cancer pain, but had a couple days discomfort in the liver area then the 3rd day sharp pains that MO prescribed Tramadol to control. Saw her yesterday and my TMs are up a bit, otherwise, labs look good. So now we'll scan and see where we go from here.
0 -
Bliss58 - please remind us when your scan time is close. Keeping you in my prayers
0 -
Nicole. I’ve had Gerd/ reflux for about 20 years. I’ve been on all the different ProtonPump Inhibitors(PPI). They have kept me mostly pain free. Mine was caused/ made worse by toxic chemotherapies through the years. The worst ones I call “ acid attacks’ they would last for hours sometimes, so painful. I was sure I was having a heart attack. Keeping it under control is key. The one I’m on now is Omeprazole 40 mg daily. If chemo makes it worse, I take two. This way, over all these years and so many different chemos, I’ve been able to tolerate most of the TX I’ve been give. I’ve been doing this for 30 years, I’ve had lots of different types of chemo. It has to get in your system and stay in your system so that it can work consistently for years. Don’t give up.
0 -
Random question. My daughter keep bringing up a crazy sounding TX. She says there’s even a clinical trial at MDA. It uses dog dewormer, seriously? She even told me about some friend of a friend who went to the Feed Store to buy his own dewormer! I was just flabbergasted. Have any of you heard of this as a TX for MBC?
Unfortunately, I’m at that place where I don’t know what’s next. I had my second infusion of my fourth cycle of Eribulin, next week scans, next week results. Praying for it to be working but what if it isn’t? What’s next? I know of nothing that matches my MBC, not even any clinical trials I have made a decision that I will not travel to for a CT. I’d rather stay here with my family. If there is a local one that has any real chance of working on me, I will agree to do it.
My magnesium was low again last week, even after having one gram by IV. So I had another IV on Wednesday. Eribulin is so hard on my magnesium. Other than that, I’m tolerating it okay. Extreme fatigue but that’s my new normal.
My friend got my new “ mostly tomato” garden planted for me. She even put in an automatic watering system. I’m looking forward to watching it grow and produce.
0 -
I also have cucumbers and onions. Cantaloupes will be planted soon. Yu0 -
Pocket duty for Grannax.
Bliss let us know when your scans are.
0 -
Grannax,
I've not heard of a clinical trial with the dewormer medication, but that's definitely a thing. Google Jane McLelland and you will come up with plenty. There's even a thread on here about it -- though I don't think it was as active as it had been last year --
https://community.breastcancer.org/forum/8/topics/...
It will take you a while to read through, but it has a lot of info. Some guy in the US (Joe something) used this while on a trial for keytruda at MD Anderson and he has been in remission since.
If there is a trial at MD Anderson, I'd be all over that if I were you. Or at least look into it.
0 -
Grannax,
Check out Joe Tippen's story: https://www.mycancerstory.rocks/single-post/2016/0...
He was in a trial at MD Anderson after being given 3 months to live. A vet friend suggested that he add FenBen since the vet had seen it be very effective against tumors in animals. Joe tried it without telling the trial doctors. He was the only person in the trial who got better so he confessed what he did and is alive to this day.
I created a FenBen thread several months ago in the Stage 4 section but it got over run by people who are not Stage 4 and mixed up with the Jane MacLellan protocol. I plan to try FenBen if standard treatments stop working for me. I'll start another Stage 4 thread at that time. I follow other people using FenBen-it works for some people, not for others but if I am given three months to live, I'd certainly roll the dice on it.
0 -
Grannax2...My wife has been on the "dog de-wormer" for 2 years since she found out about the mets to her liver. The drug is called fenbendazole. There is an entire facebook group dedicated to it. She certainly believes it has helped. I am a Doc, and while I can't confirm that it has helped...it certainly has offered her a considerable amount of hope...which is priceless. We did tell her med onc who seemed pretty agnostic about it or any other herbal thing we try.
In fairness, despite de-wormer and Ibrance/faslodex, and then de-wormer and Everolimus/faslodex, her liver mets kept growing (though over 2 years, no new ones popped up anywhere). She was starting to go downhill last October, so we did 4 weeks of targeted tomotherapy and she is now on 2,000 mg of Xeloda 7days on, 7 days off...in combo with the de-wormer/faslodex. This seems to be working (though I think most of the credit goes to Tomotherapy). Her CA 27-29 has finally reversed course and has been dropping from 6000 to 750, and she feels quite well.
0 -
Spouse4Life,
Wow, you just dumped an awful lot of interesting information in that little post!
I've read all about the fenbendazole and get that.
I've never heard about tomotherapy and just did a quick look-see on google. Was the covered by your insurance, if you don't mind me asking? I am on Medicare and I found one thing that said it would not be covered by Medicare. Dammit.
Also, wow, your wife's CA 27-29- That's a fantastic drop. My TMs are now in the low thousands, and I am totally freaked out.
If you get a chance, I would really appreciate learning about the insurance and also about where your wife is treated. If you would PM me, that would be great. It sounds like your wife has a very creative and understanding MO, or else you two win the award for finding the most unusual treatments and combos (didn't know that anyone would give faslodex with Xeloda, either.)
Thanks.
BevJen
0 -
BevJen...we are in the Phoenix Metro area. I would not describe our MO as creative...though she has been rather tolerant of our choices. Continuing Faslodex with Xeloda was per our request. She was pretty adamant that tomotherapy would offer no benefit. She said it was simply playing whack-a-mole.
Our reason for ignoring her was based on out level of desperation last fall, and a conversation with a leading non Breast AC Onc in our area who shared with me that he too had that same whack-a-mole mindset until his own father was afflicted with metastatic prostate CA that went to his liver. He did the tomotherapy for his father, who also had an excellent response, and seemingly died years later of non-cancer old age stuff.
So we sought the tomotherapy out on our own here it town. Our insurance has covered everything once we meet our gigantic deductible, But we maintain traditional commercial insurance and not Medicare.
0 -
Spouse4Life, that is interesting information. I did a quick search on tomotherapy, too. Is it directed at just a few defined liver tumors or do you know can it be used for diffuse liver mets?
0 -
Spouse4Life,
Thanks for the info. Much appreciated. I am on the East Coast in the DC/Baltimore area so I'll have to do my research.
I'm also amazed that your MO did allow the use of faslodex with Xeloda. I recently went to keytruda (I have Tumor Mutation Burden-High so FDA approved). But it did occur to me that I've been on anti-estrogen therapy since 2004, and queried whether or not we could/should continue faslodex for that reason. Of course, I sent that in an email, and got zippo response. But that is interesting.
I am of the whackamole theory myself -- but not the way your MO is. I believe that controlling tumor burden has to be better than just hoping that systemic treatment will get everything. I've had three microwave ablations to two different lesions -- the last one was a redo bc they didn't get it all at first sweep. But I really had a tough time with the last two ablations and next time I need to do something, I'm interested in this tomotherapy as an option.
Thank you for raising all of these points.
BevJen
0 -
Bliss 58. I do not know if it can be used for diffuse mets or not. I do know that the rads onc Doc spent hours programming in the plan and they created a specific mold for her body so that she was always positioned in the exact spot each time.
0 -
BevJen...I clearly understand the whack-a-mole concept. But after two years with the original mets growing, but no new ones popping up anywhere, it was worth it, if nothing more than to control tumor burden. I will say that the rads onc Doc believes there are data that support that this type of radiation tx can create and an immune response to potentially target latent cells elsewhere. Again...this is conjecture based on limited data...but still reason to hope for something simply beyond tumor burden control.
0 -
Explain "tumor burden". I think of that term as the burden the cancer tumor has on the body. Is that correct? *****How do you measure that?
My tumor markers are not reliable for me. They fluctuate each month, but never got really high like some on here say theirs does. Even when I had the original 8 centimeter liver met at diagnosis. And the numbers have not changed much now even though I am having progression (albeit small progression).
My liver enzymes have always been in normal range, even with that 8 centimeter met.
So, it seems my body is not under too much of a burden. Am I correct?
0 -
Candy,
I don't know the technical definition of "tumor burden" other than that I think of it as how much cancer is in your body. Getting rid of any of it, to me, reduces the tumor burden -- at least that's how I understand the term. And I think some number of people cannot rely on tumor markers because they are not accurate for all. Also, they can be influenced by so many things in your body.
My liver enzymes have always been in the normal range as well, even when I had evidence from scans that nasty things were going on in there.
Can't answer your question about tumor burden.
0 -
Thanks BevJen. I also have bone mets, but monitoring that is hard for me. I also have RA and previous bone scans have lit up everywhere. RA or mets???? I have not had a bone scan in over a year. So do not know how much of a burden the bone mets is adding to the liver mets. We can monitor the liver well with MRI.
0 -
Spouse 4 life. What is tomotherapy?
I’ve had lots of “whack a mole’ therapy in the past four years. Two y90’s, 2017 and 2019. I got one and one half years from the first set. I got a year from the second set. Then in November and December 2019 I had two Microwave ablations. My IR killed four tumors with the MAs but it felt like he almost killed me in the process. I am not a candidate for another y90 ( too much ittrium) and I will not have another MA. My body’s reaction was too severe. I don’t believe local TX to my liver is an option for me anymore. I also have mets to my lung. I’ve survived four years and I credit local liver TX for giving me this time. I’ve failed all the systematic TX that has been mentioned except dewormer. I would need lots more convincing and info about its history with my type of MBC.
0 -
Grannax2...the non technical explanation of tomotherapy is that it is similar to regular CT guided radiation treatment. However in this case, the tumor(s) are mapped out in detail based on your individual needs.Then you lie in a contoured sleeve that is also mapped to your body so you line up the same way each time. Next, the radiation beam rotates 360 degrees over and over, turning on an off as needed to try to target only the tumor and not healthy surrounding tissue. In so doing, they can deliver a higher dose off radiation to the tumor, while minimizing the overall radiation exposure.
I think my wife may have been uniquely sensitive to the effects (though she had zero side effects), as the Rad onc Doc said it can take 6+ months sometimes before you see tumor reduction and marker drops (instead you typically see a halt in progression). In her case, you could see shrinkage 5 weeks later at her final session. She had a PET 3 months later which showed additional shinkage and central necrosis of the largest met. Rad Onc guy was thrilled. Wife was mildly bummed, as she was hoping it would be gone completely. However, the trend thus far continues to show reduction via tumor markers, so we will ride that wave as long as possible, as I have no clue what the next step would be. I personally want her to try Enobosarm if that trial ever comes on board.
0 -
geannax...I ready tried omprozole it didn't work for me either I tried prilosec..nexium and protonix....and I already take 40mg 2 times a day. I do NOT get acid reflux burning in my esophagus I only had silent gerd on Eribulin. I get acid pain severw only in my stomach now not reflux in esophagus...
0 -
Hi Candy,
Tumour burden relates to the amount of cancer (also number of cancer cells and size of the tumour) throughout your body. I believe I have a high tumour burden as mine is in my right lung (pleural mets), throughout my skeleton (spine, hips, scapula, ribs, skull, etc.) and now in my liver.
In terms of TMs, mine are also not at all responsive. CEA is normal and CA 15-3 is only slightly elevated (43) even now with progression to my liver. My MO indicated that some cancers shed tons of the markers and then others.... Not very helpful when you are trying to decipher clinical symptoms versus stable scans
0 -
Spouse4Life, thanks for your reply. Sounds like it's a targeted thing, so not workable for me right now.
0 -
Pocket duty this week for:
Sadiesservant- scans Monday--- when results?
Grannax- scans Thursday- when results?
Anyone else?
0
