How are people with liver mets doing?
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Gumdoctor— alcohol-free dexamethasone rinse! The same stuff they prescribe to swallow but you swish and spit. In your case gargle also I think. You need the big guns and Magic mouthwash is not it.
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Thinking of you, Gumdoctor, and all the things you are experiencing.
I’ll be starting Halaven on March 17. I have progression after only two cycles of Xeloda. I had my 3 week follow up doctors visit yesterday. Increased liver enzymes, bilirubin and ALK. CEA is 702. CA 15-3 is 493. After explaining my symptoms and severe pain, I had several tests including CT scans. I have portal vein thrombosis a s small amount of ascites. I’ll be doing self injections of Lovenox twice per day. The first self injection went better than expected today. I’ll be joining the Halaven thread to gather as much information as possible...I like to be prepared. I’ll receive more info / details on my scans Tuesday. Getting nervous each time something negative happens with my health. I’m sure you all feel the same.
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gum doctor
So sorry you are going through this. Can you suck on ice during the Halavan infusion? Just a thought about preventing mouth sores?
Dee
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Gumdoctor, so sorry you are struggling with so much. I am praying for you and sending virtual hugs.
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bbpie...what is your Bilirubin number and what is your ALT and AST??? Also what is Lovenox and what is it for??
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Hi NicoleRod, thanks for responding. My AST is 199, ALT is 132, Bilirubin is 2.6. Lovenox is a blood thinner given by injection. I have my suspicions that this is all caused from taking Xeloda. I wonder if Halaven (erubilin) is also a “red” drug. Seems like these chemos don’t filter through the liver properly.
I recall ShetlandPony and Gumdoctor also have clots in the portal veins.
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bbpie -
Yes I have portal vein and 2 more blood clots. MO started me on Eliquis then I developed another blood clot and she switched me to Lovenox 2x a day. After several months, she let me switch to 1x a day, different dosage.
All 3 clots are still there but seem to be healed down.
My Lovenox seriously burns for 10+ min like sciatica...
I hope yours is easier than mine.
Gumdoctor
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bbpie, I do not have any clots; you must be thinking of someone else. I'm sorry you and gumdoctor do I wish you didn't have to do those shots.
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Hi All -
Met with Dr Angel. Grannax, as you predicted, she was not happy about weight loss. And that was only due to 1/2 of the weight I lost.
When she heard the 15 lbs loss from me...she was livid (not at me but at the situation). She reduced Halaven dose by 10%, prescribed oral dexamethasone for 3 days after each infusion and Carafate oral rinse. She also ordered me to call if this happens again. I reminded her I don't like to whine...and she was very firm...this is not whining.
Still have to continue Zarxio (Neupogen) injections and oxycodone for severe bone pain...
I need to organize my meds again so I can stay on top of them all...
Seeing dermatology tomororrow...
Thank you for all your support Everyone...
Gumdoctor
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bbpie...believe it or not..Xeloda is processed in the Kidney...its not many that have elevated liver numbers on it...I believe I am one..but only if I take other things with Xeloda...I will know more this week the 19th when I get blood work.
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Gumdoctor. I agree with Dr Angel. You are not a whiner. Glad there is something she can do to help you. Wish I had a Dr Angel.
I go in Friday for my all important six month PET. I wonder what precautions they have in place at my cancer center UTSW. I sure hope they don't cancel it. I've waited too long to monitor my lung mets. Grrr A catch 22.
Crazy making life we live. 💞
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Best Wishes for your scan on Fri Gannax. You are such a gritty, survivor role model for me.
My throat thing waited 6 hrs later to show up than the last 2 infusions. Does not seem to be as severe but defi itely making itself known. We ate lunch out so all my new meds are at home. Will have to get them in when we get home.
I am heading to dermatology appt now.
Gumdoctor
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gumdoctor. I hope they let me go on Friday. I'm calling to check on that today.
Six hours? Who knew?💞
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thinking of you all.
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I am on self isolation for 30 days. I am fortunate -retired and DH is careful in public..gloves, places clothes in bag when he returns, then showers. He is careful to handle grocery items as they might have living virus on outside of container.
I am drinking my lemon, garlic, ginger elixer.
Is it wrong to pair that with a big bowl of potato chips..? Might open cheetos next.
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Popping in to say I got into the clinical trial. atezolizumab and paclitaxel + either ipatasertib or placebo
Treatment starts tomorrow. My liver tumors have been progressing while we waited for the trial enrollment process to finish & have been impacting liver function. I needed 2 units of red blood cells last week and I've had 2 separate albumin transfusions of 1 liter each. After these treatments I feel much better... before I was essentially bed bound due to incredible fatigue and weakness. Also new is that we think the liver swelling is squashing my stomach so now I have to eat lots of little meals because otherwise I get horrible indigestion.
COVID is all over in my city. I'm in self isolation, only in contact with 5 people who either live with me or drive me to appointments & we are keeping our distance from each other as much as possible. With a large necrotic lung tumor, covid would be very dangerous for me. The cancer center is putting in lots of precautions. Nobody is allowed to accompany me in the chemo room anymore so that will be lonely and kinda sad. I'm also not sure how I'll fumble with my hand and feet icepacks on my own as my husband did that for me last time, and then he'd turn on my ipad and get my headphones etc as I had giant mitten hands. I'll have to manage somehow.
My anxiety levels have been through the roof and I'm also having problems sleeping. I will have to talk to my MO about this. There is a counselling and psychiatry team avail but I wonder if they've moved to telehealth now. Honestly, I just want drugs at this point.
ttfn - stay home, self-isolate, wash your hands, etc etc etc
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moth..great news regarding the trial. Can you also post on the Clinical Trial thread? Looking forward to hearing that you have a good response. You have suffered while waiting. Oh my, the anxiety you must feel.
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Moth...so you might actually get nothing and be on a placebo??? or am i not understanding that correctly?
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SandiBeach,
I'm right there with you on the chips. I rarely eat potato chips, but as my husband went to the early morning shopping hour yesterday for over 60s, I asked him to get some rippled potato chips and onion dip. I'm embarrassed to say I've put down at least a third of the bag already today, and the onion dip is looking kinda thin.
This whole thing is SO stressful. And I also made the mistake of watching the President at his daily (now) press conference. As he talked, the channel I was watching had the Dow up, and I watched that nose dive with each thing he said. Between those news conferences and the Dow slippage, I might have to send my hubby out for more chips!
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I scored some Ruffles and onion dip, too!
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Apparently onion dip is hard to find at a lot of places! I never realized it was a stress food -- but guess it is now!!!
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NicolRod - I'm for sure getting taxol and the atezolizumab (which is immunotherapy). It's just the 3rd med that it's 50/50 whether I'm getting.
My MO wanted me in the trial for atezolizumab plus taxol. Previous trials show that for TNBC it improved progression free and overall survival.
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moth. Great news. Yep ruffles and dip are my stress eating foods. Popcorn, too.
But tomorrow is prep day for PET, no carbs. Greer💞
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Hi everyone! So sad to hear of all your complications, heard on the radio that stress from health and financial issues are the worst. So we hit the jackpot!
I talked to my MO today and am cleared for my Doxil treatment friday. But he wasn't happy to hear that I was still going out doing errands. I can barely walk anymore and am not supposed to use taxis or public transport. All of the delivery services I usually use are swamped so no help there. They advertise home delivery but the wait for food is two weeks. Friends want to help but at this point everyone has someone in their circle who has tested positive and they are frantic that they will infect me. Plus, the ones who are healthy need to prioritize their own family over 70. Kids try to help but the schools are strict about them being online throughout the school day. So risk or not, I am basically hobbling around doing all the shopping, cooking, cleaning, recycling and errands I always have, though I know I should be isolating. That I might be even risking others by being out. But how am I supposed to get food, medicines, take kid to the dentist...?
Hate feeling guilty about doing essentials for me and my family. Sorry for venting but it's bad enough to be a single stage IV mom with no support system, now more alone than ever and have to hide the fact that I am high risk just in order to survive.
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Moth...so are you triple negative?? Were you already getting the taxol and the atezolizumab even without the trial...or only with the trial?
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Arolsson- Bless you. I don't have much support system either, but I have no children. I am sorry you are going thru this. This is surreal.
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Arolsson,
Maybe you can reassure your friends who want to help that it is far more dangerous for you to be getting out in crowds to shop etc., than for them to drop off something that has been disinfected on your doorstep. On Facebook I've been astonished to see how many people have stepped up in my neighborhood offering help for those of us who are seniors and have a disability. Luckily I've still been able to use a curbside pickup service at one of the supermarkets, and I'm married and we have family here who can help, so I do have backup.
I wish for you more physical support; it's so hard to know just how far we should go in protecting ourselves, particularly if this goes on for months and months. I hope your child is old enough to be able to help with the housework!
Katty
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Nicole - yes, I'm triple neg according to the tests now (initially in 2017 I had faint staining on my biopsy pathology so they had me as ER+/PR- at first). I wasn't on anything since we got the results showing CT lung mets on Feb 10/20 & then liver mets on the 12th. The atezolizumab is approved for use here in Canada but not covered by the gov't plan so it was either get into the study or try to get compassionate access/reimbursement through private insurance which might still have meant considerable out of pocket expenses. And you can't start any chemo if you want to do immunotherapy - it disqualifies you and it apparently stops if from working if you do chemo before hand so I couldn't start anything & then change later. Hence the tense wait.
Anyway - had it today. Everything went fairly smoothlyAND Yay for steroids because after I crashed and had a benadryl nap when I returned home, the steroids kicked in & I did a live 1hour Zumba class on Zoom with one of my favourite instructors! I did a very low impact version and had to sit one song out in the middle but I came back to finish.
cheers everyone. Wash those hands, stay 2 m / 6 ft away from other people & let's get through this stupid virus0 -
Moth.... I see you say that they say Immunotherapy doesn't work if you do chemo first...but there are trials now with Chemo + Immunotherapy....hrmmmmm... I guess that is changing???
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Today is PET and the first day I've been out of my house for 8 days. I won't get the results until Monday or Tuesday. Hoping for stable lung mets and inactive liver tumors ( post y90s).
Meanwhile, I need coffee!💞
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