How are people with liver mets doing?
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Cure-ious- guessing this oncology and clinical trial mess is related to $ and bragging rights for those that find the cure😣 plus other things.
I agree it should be so much easier to access information about clinical trials and the trials too. I tried an online clinical coordinator and that didn’t work. I just keep Googling and I am soooo thankful for u and everyone else that shares what they have learned.
By the way for those with lobular, I was interested in the ROLO trial in the UK. Actually got an email response from one of the MDs which was a surprise. The trial there hasn’t started yet but learned one may start in the US. Don’t have any more info on it but will try to learn more.
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You know what else, Ann? If we could enter into any open clinical trial across the country, our docs would have to be more informed- right now they mostly only ever offer whatever is nearby. If we could take any of the trials offered at Memorial Sloan Kettering or UCSF or UCLA or Mayo Clinic or MD Anderson, and have them right in our own doctor's office, they might take need to dig a little deeper about what to recommend to their patients, ask around some more about what seems to be working..
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I agree Cure-ious that would be a huge barrier removed for us. Getting them to truly embrace the paradyn shift that stage IV BC is a chronic disease not a necessarily terminal one is the first step for the medical community. So do the “standard of care” with a little creativity please. Give us options for the newest drugs/treatments nationally and internationally. Then give us access- insurance coverage needs updating too. I know wishful thinking. But a girl can dream...
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Amen Cure-ious.
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Hi, anyone heard from Z? She’s always on my mind. Hope all is well with her.
Suxy
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Z - we miss your posts, but understand if you need time away from BCO. You have expressed concern for so many others, especially with all the topics you have started these past few years. You have been through a lot lately and we care.Just know that.
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She posted on another thread today. I think it was the Abraxane thread.
Sounded good.
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I heard that Z will return soon, Zoom, Zoom!
Z is for Zorro, Zumba, and Zeitgeist. Come back, Z!!
Ann- that is an excellent point!! They keep telling us to consider our cancer as a chronic disease, and I do, because they could (and better) come up with a cure or long-long-long treatments within our lifetimes, But chronic diseases get treated locally by our own doctors, you shouldn't have to go all across the country to get treated for a chronic disease.
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Just finished my first four 4 rounds of Ibrance & L and had scans Mon. Saw onc today and bone news was mostly good, some "significant" improvement and some unchanged with a possible (not certain) compression fracture in previously involved vertebra that we will watch. All liver lesions had shrunk since April and are now a lot smaller than at dx. I have a ways to go yet but I'm glad of improvement and good liver numbers on bloodwork. My lung issues are also much improved according to the scans also. Mostly good news and the onc says he's not changing a thing.
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great news muddling through
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Congrats, MuddlingThrough
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Congrats, MuddlingThrough!
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glad to hear the good news on your treatment MuddlingThrough
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Thank you hartrish, JFL, and Liwi.
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I started carboplatin and geznar today. My liver is growing and I have ascites. Doxil worked on my bones and lymph nodes, not my liver. I think I am running out of options. Anyone take these drugs? Side effects?
Lisa
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Hi Lisajo, I was thinking about you and hoping you were doing okay as I haven't seen you post in a while. I haven't been on those drugs but others have taken the combo with good results. I hope they help to shrink your liver and reduce the ascites. Have you ever thought about local therapy such as Y90 for your liver? You may want to check out the thread on local therapies.
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Lisa - I hope your new combo works well for you. I’ve also,seen others with that combo on this site.
I am in a bit of a waiting mode right now. My last scan showed really good results on my liver but it looks now like I may have mets in my G.I. tract. Some BC showed on polyps in my colonoscopy which didn’t worry my onc, but then I suddenly have had some issues with acid reflex and vomiting when I eat or drink almost anything including water for the past couple weeks. I saw my oncologist today and she suspects it’s due to the cancer now being in my G.I. tract somewhere. If that’s the case I’ll have to move from Ibrance/Faslodex to a new treatment. And that will have to be IV chemo to start because of my gastrointestinal issues. They did a CT scan today and she arranged for the colon polyps to have some more testing on the ER, PR, HER2 status of that discovered breast cancer. I’m disappointed because I thought the treatment was working well and it was very tolerable but I knew it wouldn’t last forever. My biggest concern now is just being able to eat. Gemzar was one of the possible chemo she mentioned so I’m also in any information about it.0 -
Hi Lisajo6 - I am on carboGem (as I like to call it, sounds fancier, right?
) since February. I was diagnosed stage 4 in January with 2 liver mets. Started CarboGem in February and by end of April my PET scan couldn't detect cancer in my liver. I just had another PET scan this week, also clear. I hope that CarboGem works well for clearing your liver mets too! I get Carbo and Gem together every 2 weeks. I feel bleh (a little tired, a little nauseous) the evening after chemo and the day after. After so many rounds of it, I have started to have some issues with neuropathy. My WBC counts are holding pretty well, but I think a lot of people have issues with that on CarboGem. The other issue I am having is rising liver enzymes. My oncologist seems a bit perplexed by that, as I don't think that's a typical side effect seen with CarboGem. I don't know that it is caused by the chemo, but the rising levels correlate with starting chemo.
Best of luck!
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hi Liwi,
I experienced the exact same symptoms after 8 months on ibrance and fas, minus the polyps. The gastroenterologist at MSK couldn't help me with the relief of my symptoms and digestive problems. What I realized was that the accumulative SE of ibrance had wiped out my stomach ability to produce hydrocloric acid, had destroyed my bio-dome and bile duct.
All my digestive problems resolved when I started taking a supplement called Bio-gest is made by a company called Thorne. It contains a mix of everything the body needs to digest and assimilate the food that we eat. The tummy aches, gas, nausea and diarrhea return everytime I forget to take the bio-gest even when I eat fruit.
I hope it can resolve your digestive problems too.
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lisajo6: I have been on carbo/gemzar for 11 months for liver mets. Has worked well for me. Side effects: fatigue, constipation, some muscle aches for 1-2 days after infusion, low wbc (on neulasta). Has been overall easy to manage side effects. Pray it keeps working.
Prayers to you that this combo works well for you.
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Lisajo, I agree with JFL, consider talking with a IR doc about local therapies.0
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Thanks for the suggestion Miaomix. It makes sense to me. I’ll look for the supplement online. I’d been taking digestive enzymes with some HCL since last June before I started Ibrance and they worked great for even my lifetime constipation problems but they suddenly stopped working about a month ago. They may not have been strong enough or included all I need at this point.
They did a test today that showed that my stomach is not emptying fully, probably less than 20% moves on to small bowel. Since I’ve barely eaten and lost much of what I try to ingest for over two weeks my oncologist wants me to go to the hospital if I vomit again so they can empty my stomach and find a way to get nutrients into me. The procedures all sounded rather unpleasant but I understand and share her concern that I can’t afford to let my body get too weak. So it’s pretty likely that’s where I’ll be going tomorrow.
The good news is the CT scan did not show any GI system cancer.0 -
Hi all - I also posted on a few other threads that some of you have mentioned. Curious if anyone has any experience of thoughts.
I had a PET/CT this week and it shows that GemCarbo is still working. My April scan and this week's scan both show no metabolically active cancer in my liver (previously 2 liver mets). I am wondering if anyone has done a local treatment for liver mets after becoming NED? I was originally considering radiation ablation or resection etc. but that was before we learned the chemo would take me to NED.
Thanks in advance!
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Thriving mama. I'm wondering about what I R would say in your situation. When you are NED can anything be seen? If nothing can be seen, I dont see how a local treatment could be done. If it says NEAD, that's even more confusing. I too, would be very curious to hear an answer to both of those questions.
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Hi,
Has anyone had acsites? My doc won't drain it, he wants the chemo to get rid of it. I am constipated, tired, and nauseated for the carbo combination. I am getting scared this is the end. Everything else is stable. Dang liver.
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Lisajo6,
Someone posted earlier this summer - maybe Zarkova? - about using a bolster pillow and some yoga positions to help drain the fluid. Maybe more regular contributors to this forum remember more about it?
Use the search function to look up acsites, too, maybe you can find some good information from those who've had it.
Are they giving you premeds with your chemo? I was on Carbo & Etoposide for a few months and got steroids (Dexamethazone) and Zofran beforehand. I know some people don't take the steroids, but I haven't had problems with it. Keep taking your nausea meds for a few days after chemo, too. Constipation? Drink a ton of water, prune juice and take Senecot. It's a gentle stool softener. I always start these a couple of days before my chemo and it helped tremendously. You are probably doing all these things already.
I wish you all the best, hope you find some comfort soon...I know, it's scary. You are in the right place (here), there are so many knowledgeable metsters with sound advice.
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Hi Lisojo,
If you go to the peritoneal carcinamotosis (spelling?) thread you will find several ladies who are dealing with ascites. It seems to be more common for those of us with belly mets, many of whom have ILC.
Pat
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HI Lisajo it's not the end. But you could do a sonogram and the report will tell you the level of ascites you have, moderate or more than that...It definitely could be drained, it's a procedure, so maybe maybe he wants to avoid that, BUT it depends how much it's bothering you, and it should not get out of hand, that's why a ultrasound would be helpful. Yes, it could be from belly mets, but a lot of ppl with liver mets get it, and it could be managed. So if you have to get a 2nd opinion about it.
Also, ginger helps with nausea. And yes, Zarovka wrote extensively of how she used the bolster pillow and it helped!
Worried about Zar, hope you are ok and wil hear from you soon!
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mixed emotion day for me. I posted in the brain mets and Xeloda threads.,
My liver is stable in currentvtreatment but there is s question if it is keeping my brain mets stable. There are 4 spots that may or may not have been there in Zmay when I did my brain treatments.
Time to treat the brain again.
Thankful my liver is stable.
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lisajo6, I have/had mild ascites on my last MRI and CT Scan. I thought it may be gastro issues from the Taxol but not sure. Belly was bloated, uncomfortable. Taxol failed now onto A/C chemo. Belly seems better so it may be that the A/C is working. Tumor marker down and LFT tests down as well. Chemo works on rapidly dividing cells, like hair and intestines. Chemo definitely affects your gastrointestinal tract. Hope you find some relief, I know how it feels-Jill.
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