How are people with liver mets doing?
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leftfoot- Neratinib is supposedly good very good for brain mets- also would Abemaciclib be an option at some point ?
There were some recent Her2 discussions on onclive that involve Neratinib with Capecitabine:
https://www.onclive.com/peer-exchange/advanced-bre...
https://www.onclive.com/peer-exchange/advanced-bre...
https://www.onclive.com/peer-exchange/advanced-bre...
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LFF. Hard decisions. Hope your MO picks the right one for you.
Has anyone ever taken Gem/Carb combo? I'm really curious vas to why it causes painful lower back pain after each infusion. I start my second cycle on Tuesday. I plan to talk to my MO about it. My guess is that it's the chemo attacking my bone marrow.
I started a Gem/Carb thread, if anyone else has had this combo I hope you will post.💞
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Update on liver mets;
I had a meeting with my MO today and he said that we are starting Xeloda. Since PET machine is broken I can’t have a PET scan and my brain scan with overall health is enough. He said that we have several options an Xeloda was the one with minor SEs. So I’m starting Xeloda today, 2 weeks on and 1 week off, then again the same cycle. I’ll have Herceptin also with 3 weekly periods. I hope it helps, I have minor SEs and wont affect me much.
Lots of love..
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It was reported on the Memorian thread that Animalcrackers (Cathy) passed away June 30, 2019. I am assuming it is correct information, but I want to believe it is not true.
I was hoping she was handling her pain from her bone mets and continuing her life. She was also a liver mets sister.
Animalcrackers was diagnosed Stage IV (I believe de novo to bones), in 2014.
I hope her life was well lived during these past 5 years and she was happy.
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Oh, no!!!! This is horrible..
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I am so saddened to hear about AnimalCrackers. I had heard that no one had heard from her in a while. I didn't realize she was in bad shape or having major troubles. Sandibeach, thanks for letting us know. Another one lost too soon.
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thanks for letting us know about animalcrackers- I’ve been worried about her for quite awhile. Very sad.
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Not Animal Crackers, too. I guess everyone has heard about Gracie.
I got my blood transfusion on Thursday. By Friday, I transformed into Wonder Woman. Just amazing how having enough blood can make you feel. I hope it lasts for a long time.
I'm waiting on results of a culture of my infected port incision. Pray nothing grows.💞
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I'm very sorry to hear about AnimalCrackers (Cathy). It's just heartbreaking. Thank you for letting us know.
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Grannax, glad you are feeling better. I felt the same way after I had a transfusion last year. You may want to look into ashwaganda to keep your hemoglobin levels boosted/anemia in check. It makes me feel like Wonder Woman on steroids. My hemoglobin is almost in normal range now with the help of ashwaganda and I have redeveloped a good deal of muscle in my legs/hips since I started it 3-4 months ago. It has many benefits on top of increasing hemoglobin, including building muscle, fighting the cancer and helping to make chemo more effective.
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Grannax, I was astonished by how normal I felt after my tranfusion last August. Unbelievable. I hope your port problem gets resolved.
JFL, I've heard so many good things about ashwaganda and badly need an energy boost. I often feel trapped in amber, although that may be partly psychological as well as physical. The new trial I'm starting specifically prohibits Chinese herbs, but I'll have to ask about an ayurvedic herb.
So sorry to hear about Animal Crackers.
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Where do you get Ashwaganda? What brand. My MO said my anemia is antineoplastic anemia. From my cancer. I assume yours was too JFL Katty?
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JFL, can you tell me more about ashwaganda? Like recommmeded brand and dose? In the meantime, I will make sure it doesn't affect the Ibrance/letrozole and my current supplements. It sounds like it could help me.
Grannax2, I am concerned that chemo and labs are being utilized with your infected port. Hopefully the cultures will give you the all clear. Just sitting here in cyber land biting my nails with worry..especially if you have to have it replaced.
But I am worry wort as you and several others are on thar list!
P.S. How's that cute ponytail that you rock?
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Hi All -
Still here. Been travelling more than normal. May be more stationary for awhile. Still have to travel 3 hrs to and from husband's (our) house every week. Not complaining. Just living this life I have carved out for myself.
Labs, chemo plus Xgeva, see Dr Angel, all tomorrow. Abraxane and Carboplatin planned. Will see if she approves both. She has held Carboplatin last 2 times...
Have been reading everyone's posts...just not posting much...will work on posting more. Need to go back and re-read to keep up with you all amazing warriors.
Gumdoctor
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Gumdoctor- Good to hear from you. Post after all your stuff tomorrow, if you can, and give us an update. How are you feeling with the chemo? Hang in there.
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Sandibeach. Nothing has grown on my culture. I had it done on Thursday. That's 3 days and they watch it for six days. I'm almost out of the woods. It looks better, too. I text my IR a pic every day.
Gumdoctor I don't know how you are managing all that traveling. Do you do all the driving?
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Grannax and Sandibeach, I did a lot of research and selected Garden of Life, MyKind Organics ashwagandha. I have purchased it from Vitamin Shoppe and Amazon. Part of its mechanism of action is that it keeps cortisol levels in check. It is an adaptogen. When the body is not in stress mode with overactive cortisol, then the body can focus its efforts on healing and growth in other ways. I can't remember exactly now but it is important to have a standardized version with a certain amount of "withanolides", at least 30mg, I believe. I am taking a does of 600 mg (30mg withanolides), which is the recommended dose on the box for general use. I can't recall if it is okay to take a higher dose for BC. At the same time I started ashwagandha, I started taking maitake proX4 mushroom extract and turkey tail mushroom supplements.
Grannax, I do not know whether my anemia is/was related to cancer. I know that bone marrow mets can cause or contribute to anemia but rarely are we tested for bone marrow mets. My MO said that when he was a resident at MSK, they tested for bone marrow mets in all BC patients and he said that pretty much everyone had them. I started developing anemia after being on Doxil for 6 months. Doxil was definitely involved but I don't know whether it was the sole cause.
Katty, interesting the trial expressly prohibits Chinese herbs. It makes sense though. Hopefully, ayurvedic herbs are okay.
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Thanks for the info. I might order it.
I know lots of anemia is from different chemotherapy drugs, or losing blood somewhere in your body. Confusing for a lay person. That's scary about the bone Mets. Yikes.💞
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can't sleep hello ---
Tx went fine. No surprises. No carboplatin. She wants to hold it until scans in a month. Very disappointed but understand her concern. My right big toe is pretty much numb. Tingling in all fingers and toes and lups plus tip os tongue. This is at the 90% Abraxane dose and only 1 dose of Carboplatin in the first cycle. Yesterday was cycle 2 round 1. Next tx next Tuesday.
Grannax - I am doing the driving because I have to. My kitties live 3 hrs from my husband at the big house with the amazing views. I cannot consolidate because his house is too small. He won't move. So we are at this impasse until I can no longer do the trip every week. Then most of the kitties have to be re-homed. I cannot bear it so I will keep driving. Back pain is only slightly agitated in the car. We will see how long I can keep it up.
Good to read everyone's posts. I will keep working on catching up...
Gumdoctor
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Gumdoctor, I sympathize with the neuropathy. Mine kicked off when I was on taxol/gemzar, and has slowly gotten worse on Halaven. I did dose-reduce this last round, so am hoping to keep it at bay. Sounds like your MO is erring on the side of caution, which is a good thing.
Sending hugs to all ~ JL
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Hi Jaylea -
So good to see you here. Yes this MO, my Dr Angel, is erring on the side of caution. But she also worries me by telling me most of the chemos on the list can also cause neuropathy...there may not be many choices for me in the future...
And all the taxanes are already off the table because I had them for stage 3 tx...I am in the heavily pre-treated category...
I have to just not think about it all now...learning to take things one day at a time...
Gumdoctor
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Gumdoc, How about some kind of immunotherapy trial combo, is that an option? Or move from chemo to a targeted drug like Piqray, Alisertib, the new CDK2,4,6 inhibitor, or Faslodex/Crizotinib or Faslodex/Venetoclax- have they done a recent biopsy? I haven't kept up with all the back-and-forth, but I don't like the idea of running out of options, chemo may be no better than targeted drugs, although its more accessible, but they come with these neuropathy problems
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Cure-ious,
Thank you for thinking of me...MO has said only IV chemo from here moving forward...
But she is really totally focused now on containing this highly aggressive liver progression first...no biopsy yet...we have been in emergency mode when it grew from 4 to 9 cm in 2 wks and brought more than 10 smaller lesions with it.
I also have a very large blood clot in inferior vena cava which makes any procedures very risky. On blood thinner Eliquis now.
3 scans scheduled in 3 more wks. We will know more about status then. When we can breathe a bit...we can discuss other options.
Gumdoctor
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yes!! Breathing is good!!! And then an immunotherapy combo when you get to stable!!!
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CT scan from neck down shows my liver is stable and possibly slightly better. Nothing new and none of the old lesions are larger: do a win.
Next up is an echo and a brain MRI.
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Congrats, Leftfoot! Spectacular news!! One scan down, two to go.
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Leftfoot- Way to go!!!!! The next scans will be good too, I can feel it. Woohoo!!!!
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leftfoot. Happy Dance here for you.
Gumdoctor. I haven't had any neuropathy on Gemzar, yet. I have some in my feet but I've had it for awhile, from diabetes and I am also heavily pre treated. So, who knows?
I'm going today to get another blood culture done on my port incision. It just won't heal. The other two incisions healed and the first culture came back negative. But, yesterday it got puffier and redder. UGH
My next infusion is next Tuesday. My ANC was too low last Tuesday. There's always something, HGB was at 8 on the 20th, blood transfusion, it's still only a 9. Grrr.
I'll keep trying.💞
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Grannax- Sorry to hear you are still having problems with the Port incision. Hoping for better days ahead for you. How is the reno going on your flooded house?
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candy Thanks for asking. My plumbing is fixed, even though that part is not covered by my insurance. My bathing has been demoed , New floor is complete, white wood look ceramic tile, leftover from my kitchen floor. I love it. Tonight will be painting, and installing my toilet. Yay Next will be new cabinets. Then finally my pretty quartz countertop and sinks can be replaced.
My IR is going to try another antibiotic.
How are you doing?
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