How are people with liver mets doing?
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I just found and answered several private messages that were written months ago! I never think about checking those. So embarrassed. Kaayborg I did answer yours today, finally.💞
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Grannax, it turned out the Monday appointment would have been with one of the IR’s fellows (so as not to delay me in getting treatment). I said no and will see the actual IR next Wed., March 7. I am going to Miami Vascular Institite which is affiliated with MSKCC. I had planned to go to Moffit in Tampa (top 10 cancer hospital in US) but the head of radiology at U Penn recommended I go to Miami Vascular instead.
Woody, I think you are right re: HER2. Your story is incredible. I have been researching CISH and formulating a strategy to get one performed. The best way may be via another liver biopsy and re-try to get a Caris genomic test performed. However, it sounds like Caris uses its discretion whether to perform a CISH when performed as part of the full genomic panel. I would need to contact them to ensure they include it regardless of what the others HER2 tests say
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Kaylynne - Did you hear my sigh of relief when I read that you will like respond to Xeloda quickly? It's a good drug and I want you to get it and be very successful on it.
JFL - I prefer Caris but they do make their own decisions on what to test for. I had huge issues with that when I had my test done ... they decided certain tests were not relevant to breast cancer without knowing the treatment protocols I am pursuing. Still furious. But even with these gaps they are more robust and extensive than F1.
>Z<
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QUESTION - What do others use to detox the liver while on treatment? And how do you alter with treatment so are not destroying the treatment if that could be happening?
I have chosen Ojibwa tea, the all natural 4-herb make myself tea. Plus milk thistle extract.
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Bluebird - Not a believer in supplements for detox. I don't believe we know what they do. My strategies are exercise, sauna and steam room time. You want to raise your core body temperature and increase circulation ... to get the toxins to your liver and kidney which actually deal with the toxins. And then of course lots of water. . Depending on how you feel, exercise may seem unrealistic but we're only talking about doing what you can do. A 20 minute brisk walk is the minimum effective dose of exercise ... it's not much.
>Z<
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Bluebird - As simple as it sounds water is the best cleanser for your liver and kidneys
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Z, disappointing news re Caris and their discretion but overall the test sounds good. Did you reach out to them re the tests you wanted that weren’t performed?
Bluebird, I take 1T of apple cider vinegar before bed for liver detox and various other things - keeps me regular, has probiotics, it is alkalizing. I also squeeze a full organic lemon in warm water first thing in the morning sometimes. I am supposed to be doing that every day but I forget to buy the lemons. Grapefruit is truly “drano” for the liver but has interactions with many treatment medications - chemo and targeted therapy - and is usually off limits.
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Bluebird, I drink daily an elixer made from lots of water and combination of fresh lemons, garlic and ginger. I also walk and try limited cardio. My heart rate and BP do not like too much exertion!
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JFL, keep us updated on the Y90 front.
I have good news.....My tumor marker fell 112 points after my 3rd transfusion of Abraxane!!!! I pray this chemo continues to work for me for a long time. On the bad side, I am having nose bleeds and I am very week. My RBC numbers are borderline for a blood transfusion, so I will be calling my MO tomorrow and see if I can't come in tomorrow or Friday. I can barely walk from my room to the bathroom without feeling out of breath and faint. I have had a couple in the past and know that my body is telling me its time!
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Just in case someone doesn't know, grapefruit and Xeloda definitely don't mix. My understanding is that the grapefruit can reduce the effectiveness of the Xeloda.
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Z-I thought that might have been you.
Snowfall- thanks so much for that advice. I just bought some.
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rpoole-yea on the markers!!! I hope mine drop. After two infusions mine were 155, but I did not have them done for two months, so I have to use 155 as my baseline. I too get nosebleeds and get very weak. My onc lowered my dosage. You may want to talk to him/her about that.
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Lisajo, are you on Abraxane? and for how long?
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rpoole - thrilled about the tumor markers but what's with the weakness ... can you trace it to your bloodwork?
Consider me your biggest fan in Japan ... rooting for you with everything i've got.
>Z<
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Rpoole,
Yes I am on it. I guess for as long as it works. I have only had three treatments. I actually have to go today.
Lisa
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Hello everyone,
I don't post here much but would love some of all ya'lls wisdom on what my oncologist wants to do. I've been on Taxotere since Sept 2017. It was working well at first- good scans and tumor markers decreasing. The last few months the tumor markers have been rising; the scan in Feb showed "no convincing evidence of progression" so he wanted to get a few more treatments in before considering any change I have been with my oncologist since 2007. I like him a lot, and know him to be super smart, very caring and aggressive in approach to treatment. I didn't go along with his aggressive approach when I was first diagnosed but now that I am metastatic I'm in. I think. I met with him yesterday and we are testing the marker again next Monday. If they have gone up he wants to add Xeloda and docetaxol! He knows it may affect my QOL and if so we would stop. He is looking for a complete response like I had with Doxil and Cytoxan. At this point I am somewhat reluctantly agreeing to give it a try.
I would so appreciate any input anyone has. One question I have for him is if we do some Xeloda in combo can we use it later as a single agent.
Gratefully,
Lisa
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Hi to all. I have also been off for awhile so Shetland we all get the need to take a break. For me the ascites were pretty severe last week so i basically zoned out on the TV too. Glad to hear from you Shetland!
Robin, I am so happy to see you posting again and thrilled that Abraxane is working for you. it worked well for me too besides the neuropathy it seemed to induce. But I'll take that over mets or ascites any day. I hope they figure out the nosebleeds and get that under control. I am finally getting my infusion today after 5 weeks of bureaucrat maneuvering. Of course it is dumping snow. A bit nervous to start yet again another Tx but here we go....
kaayborg, I am glad to hear your combo seems to be working for you. I start Gemzar alone today and am hoping the same...
Woody, Same to you, nice to "see" you posting. I finally answered your PM! I hope the fatigue and indigestion issues decline over time and you are feeling better soon.
babs, thinking of you on Friday! Y90 prayers for you.....
JFL, I hope Y90 get approved soon. I always follow this with much interest. Granny posts are so encouraging....
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Lisa - there are certainly questions, like why not just switch to Xeloda. the combined side effects could be rough. it's times like this when a second opinion at an NCI designated cancer center really pay off. in general, it is important to setup the relationship and have it in your pocket. of course it is a lot of work right when you are stressed out.
>Z<
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artist,
I started gemzar today also. Hoping for us both...
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Z, I believe the weakness is red blood count. I have felt this very way 2 times before and a blood transfusion did the trick. My red count does not meet the standards for a transfusion, but the last time they pushed it through saying I was symptomatic. I call my MO today and I am going to see her tomorrow at 12 and she did mention the red wasn't low enough. She said maybe some fluids would help. I don't thing fluids are going to help my breathing. I am out of breath just walking from my bedroom to the bathroom. My hemoglobin is 9 and hemocrit is 27. My MO said it need to be 8 and 24. Seriously, what is the big deal with getting blood? I am almost begging for it, because I know how great it can make you feel.
How are things going in Japan?
Lisajo, good luck with your treatment today!!!!
Robin
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rpoole Keep advocating for what you know to be true for you. 💞
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Robin - It's crazy you can't get blood but I agree the respiratory issue is a different matter. Any theories on that?
Japan is chill. Treatment harder this time. I may be symptomatic from the cancer as my liver has innumerable mets and is enlarged. My liver markers are elevated. I havemore gastric and digestive issues than previously. The kind of thing you get when you travel and eat things you don't normally eat, but it's severe. I am exhausted and shaky and I have nausea. I have pain and pressure in my rib cage that comes and goes. It's particularly focused on the left side so costocondritis could be a piece of it. But I am sure some of it is liver pain. My abdomen is bloated. There is a lot of rumbling and burping suggesting gastric issues, but I did have ascetites developing in my last MRI so I get that to worry about. I think I can feel my liver poking out under my rib cage on the right. Kind of a firm area not present on the left side? I believe I am not supposed to be able to feel my liver. That definitely freaks me out.
They are cranking up the hyperthermia a couple of degrees, hopefully cooking the tumors into little dead piles of tissue. If that is happening, I am sure that is effecting the liver and how I feel. I have so many tumors. The fact that I may be symptomatic from the treatment makes me hopeful that it is doing something. But maybe the whole thing isn't working and its the tumors blocking my bile ducts. My optimism is a function of my pain level ... I am sure you know the drill.
One interesting thing is that they found high levels of HER2 proteins in my blood which gives them a potential target. My biopsy did not show HER2 but its hard to imagine where it is coming from if not the cancer. Herceptin and Perjeta are monoclonal antibodies that attach to the HER2 receptor and create a little docking station for immune cells ... they basically signal to the immune system that this cell needs to die. It would make sense that the rapidly growing tumors of the past 6-8 weeks are HER2+ because that is characteristic of HER2 cancer. I got one Herceptin/Perjeta infusion on Monday. They would like me to continue in the US, but I will probably have to prove HER2 status with a biopsy before insurance will cover. Blood levels of HER2 are not accepted as proof of HER2 status.
>Z<
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Z. You have a lot going on, all in a country far away from home. I know you like your doc there, I hope they will help you with your symptoms. So sorry you're hurting.😢
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Z I’m so sorry things are tough this time. Im thinking it’s because the treatment is working You are my idol. Going to Japan for treatment! Amazing!!!
Babs
Having my y90 tomorrow am. Fingers crossed it works. Next I have to deal with my cough and shortness of breath probably due to my lung mets. Always something!
Bab
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Z-wishing you complete success with your treatment.
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Z, The respiratory issue is probably related to the lung mets that grew while I was on that dreadful clinical trial.
I am so sorry you are not feeling well. I hate having digestive issues it can be so miserable. One reason why I'm a little scared of Abemeciclib. I also have a pain behind my right ribs that come and go. I just hope its the tumor dying off. Hopefully this is the case for you. How rough is the hypothermia? Are they giving you any chemo this time around?
That is so bizarre about the HER2. Do you think if you had another liver biopsy it would reveal HER2 this time? I was wondering if mine may have flipped to HER2. My disease went crazy when I was on that trial. My lung mets are just a few and have basically stayed unchanged for 2 years, then out of the blue...BAM, took off like wildfire.
You are our hero here at BCO and we are all praying this treatment works for you. When do you return to the states?
Hang in there Z.....You got this!!!!
Grannax2, I plan to state my case very direct and sternly to my MO. All she has to do is look back at records to see I had a transfusion when my levels are where they are now. But she is a dingbat and her records are a mess.
Robin
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Hang in there Z! Ohio is hoping that Herceptin aka the Smart drug...kicks your cancers a$$.
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Z, your reports are inspiring. Thanks for letting us know what you are up to, and good luck with treatment in Japan!
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Robin - Yeah. I am watching abemaciclib for now. The gastric issues are a potential problem with immunotherapy. You want a healthy gut because it somehow drives the immune response. However, I've managed to screw up my gut without the help of abemaciclib by eating Japanese fruits and vegetables. Or maybe its somehow related to impaired liver function. It's not hard to screw up the gut.
Hyperthermia was nothing last time, but this time I have a lot more tumors and they've modified their protocol to maximize dose. I am here to kill cancer and the efficacy is a function of dose, but it may be more stress to the system. It seems like the side effects are not from the hyperthermia alone, but a combination of the treatments. On the day where I got hyperthermia and herceptin/perjeta I felt fine. I get shaky and my ribs cage is in pain after hyperthermia with the NKC infusions.
Given the presence of high levels of the HER2 protein in my blood, it is likely that some tumors are HER2 and some are not at this point, and they just hit one of the older original tumors with the biopsy. Probably the more aggressive tumors are HER2. I did ask the IR to go for tumors that showed more signs of life ... it was amazing to me that I actually had to ask her to CHECK THE FRIKIN MRI FOR A TUMOR WITH RING ENHANCEMENT. She was going after at tumor that was mostly dead unlikely to even produce live tumor tissue. It seems obvious that the interesting tumors are the more active ones. She did find an active tumor she could get to but that was back in November and things pretty quiet everywhere at that time. The cancer went bananas in January and that is probably when HER2 expression started. So yeah, I think if I get another biopsy I have shot at finding HER2 expression and a justification for Herceptin/Perjeta coverage.
My last treatment is today in 3 hours ... hyperthermia, NKC infusion and dendritic cell vaccine. I get on a plane at 5pm the following day. Back soon. Faslodex shot and tumor markers on Monday ... first indication of whether I accomplished anything at all here. If there is any sign this worked, I'm almost certainly going to have to come back, again, soon given the mega disaster that was my liver when I arrived. Too much cancer for 1 billion NKC tackle in just two weeks, I think. But like any treatment, it will be a while before I can figure out if I am responding.
Anyone else tired of this? I am super duper tired of this. I have two kids and a great husband so no choice but fight like hell, but man.
Babs - get that Y90 behind you ... you have grandson who needs you at his college graduation!
>Z<
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Z
I am praying for you as you fight through this treatment. Your posts always sound so strong and brave, and I admire the spirit I sense coming through. You are a true warrior! I hope you can experience rest and relief, and I'm praying that these treatments will be effective!
Blessings!
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