How are people with liver mets doing?
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HLB,I re-read his blog throughly and I agree that he is legitimate and has only honorable intentions.
I won't deny that I feel reenergized and excited. Immensely hopeful....everything seems to be falling into place.
I'm so grateful to be sharing this experience with all of you great ladies, God bless you all
I hope you get your pet scan approved ASAP
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okay guys...check this out...another episode of The Mystery of Cancer...brought to you by MSK et all....
My pain level has increased in the past two weeks, to the point were I'm limping and wobbling when I get up, but it gets increasingly better after I start walking.
My lower back pain, shoots into my left hip joint and down my leg, weakening the whole shabang....YET, the results of the MRI of the whole spine couldn't be any better.
No new lesions, no compression and no danger to the spinal cord...so WTF?
What I am to think? I have added a lodacaine patch to the area, but it doesn't resolve the mystery
Have you ever experienced anything similar? How did you resolve it?
Thank you all in advance....
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Miaomix, I'm sorry your pain has been increasing and you've been wobbling when you get up. I don't know what's happening in your case, but when I did a pain course for people who are in chronic pain, the doctor said that a lot of people's pains don't show up on scans. When my shoulder was really painful, the ultrasound just showed usual age-related changes, nothing significant. I guess sometimes a different type of test or scan is needed too.
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Thanks ladies I love my little Farmhouse kitchen remodel. Yes it is a Farmhouses sink. I searched everywhere for one I could afford, found it online at IKEA. I got really lucky on Calcutta Vento. Backsplash is shiplap. The hutch is a salvage from a claim my husband ( adjuster ) had many years ago. I would love to visit at my little Farmhouse table with you. We'd have lots to talk about. My chairs a window seat will be burlap, materials waiting for me. Also, I have the floor, wood-look ceramic tile planks in white, but not the money to put it down, yet.
I've had quite a bit of energy the last few days on X but I did too much yesterday.. And feel zapped this morning, too. It's a bummer to wake up tired. My company comes today, I have to get moving.💞
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Aussie....thank you for the explanation...it's good not to have to worry about loss of mobility.
I put a lodacaine patch on it after I spoke to my palliative care doctor and it seems to be working...
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Miaomix, could you have sciatica? I've had bouts with it for years , and it can cause weakening down the leg when it's cranked up. VERY painful!
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it could be Kattysmith...I'm gonna see if acupuncture can help me...the same thing happened 2 years ago, and acupuncture fixed it in one session, BUT at that time it was associated with progression....
Recent pet indicated progression in bones and it found evena lesion in the liver, but the MRI of the whole spine couldn't find any progression or structural problems that would warrant radiation....
The results of the liver biopsy should clear things up...
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Lucia42: So interesting. Promising.
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When you had pain from your liver, does it last hours? I’ve had right side pain again, started this morning in my right shoulder, has moved to right behind my shoulder blade. Had the same last week, ended up in the hospital for two days! Heart seems ok, no blood clots last week. I think it’s my liver. I just don’t know what to do for it except take Lortab. And heat pad on my back. Any info you can help me with
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Gracie, liver pain can definitely cause shoulder/right back pain and can come and go throughout the day or between days. Apparently, the liver expands 50% during a normal day. Makes sense why sometimes there would be discomfort and sometimes there would not. Alas, I don't have any good suggestions for dealing with it. I use heating pads also.
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miaomix- are you off treatment between the changes or did you have time off?
It seems like every time I have an extra break or week off chemo, even time between them, I have odd aches and pains. I sometimes wonder if chemo is just masking the aches and they surface when we are off them for a bit. I’ve been more miserable and achey off chemo than on. I almost hate time off bc of this.
It’s so odd that even in the same chemo I have different aches each round. Just a thought.
Grannax- before each dose of Xeloda, both morning and night, I took emetrol for nausea. It’s over the counter and was once a prescription. I swear by it and use it still when I need it. I never missed it with Xeloda and had no problems. I started it the same time as my pills. I’d take a dose of it wait ten min then eat and then take the pills. I also took a pill waited ten min and took the other one. I thought it would Be easier on my stomach doing that. 5fu chemo is the same and given over time so I didn’t find any harm doing this. My doctor agreed as well.
Sarah
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JFL I don't know if he talks to them or not. I never had one not be approved before. I work in the medical field and I have noticed that highmark is rejecting a lot more things this year. Things that were paid for years are all of a sudden "investigational" . The reason for the PET not being approved is because I had one before so those results should be sufficient. As if they don't know that cancer progresses. I don't care. I'm enjoying my break and if the doctor wants to do something about it, great. If not, I'm not jumping through hoops. I need to be stress free.
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Hi skitzblitz, I'm supposed to start on Doxil on Friday because the pet scan indicated progression in the bones and a spot on the liver. But the MRI contradicted those findings and tomorrow I'll be undergoing a biopsy of the supposedly liver lesion.
I'm praying that it too is an aberration and that maybe, just maybe, I'll be able to continue on xeloda, my favorite tx so far...meanwhile I am suffering weird pains that would indicate progression,,,,as you can see it's all so confusing....
I was doing very well pain wise till I stopped X, so I hope that what the pet picked up and what I'm experiencing is in reality only inflammation...
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Gracie, You are describing exactly what I have experienced over the past month. I was in the hospital as well.. did a whole workup on me and the only thing they found is my liver mets, which I already knew about. I had a sono this week as well and all my other organs are clean.
Everybody: I want to say thank you for this thread. While skimming through I saw a couple of people talking about Y90 treatment... I looked it up and then sent it to my MO to ask him about it. I didn't hear anything after a day or so, so I called a center here locally that does it and they said that I need a referral for a consult. So I pushed my MO to set up the referral. He said he was "somewhat doubtful" that I'd be a candidate, but he'd set it up anyway.. GUESS WHAT? I'm a candidate!! I don't have cancer in any other organ and my liver isn't failing even though it is full of cancer, But they can do it.. We are getting insurance approval now and the process will hopefully start next week!
Thank you ladies for all your sharing.. you may have bought this TNBC, and Immunotherapy resistant, breast cancer patient more time!!
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Tina, glad you are ok as well although I hate that you were in that kind of pain!!! Anxious to see what you find out about Y90
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Tina, so glad you are ok too, although I hate that you were in that kind of pain!
Anxious to hear what you find out about Y90
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TinaMarie, great news about the Y90! I believe it will definitely buy you some time. This is one treatment that seems to be having a substantial survival benefit impact on us, based on observation. We may have actual stats some day. It can really beat back liver mets in a way that chemo cannot. Unfortunately, it doesn't prevent new mets and doesn't treat mets that are in hibernation but does work well on existing active mets to really get you in front of the liver mets rather than always feeling like you are chasing from far behind.
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Tina - great news that you are a candidate for Y90! Hope it goes as smoothly as possible and is extremely effective!
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Tina. Great news, keep on being your own advocate.💞
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Had a 2 cm resection for Dr Nagourney to do his mad sciency stuff on. Had mapping for Y90. First y90 treatment is tomorrow. I'm ready to kick some cancer butt.
Sunset.
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I wish you good luck with it Sunset! I hope everything goes well!
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Thank you everyone,
JFL - that's exactly what I have been saying for a year now.. we got to get ahead of the liver mets! we've had such a hard time doing so.
Sunset, how did the mapping go? Let us know how the proceedure goes too. GOOD LUCK, thinking of you,
Tina Marie
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Thinking of you today Sunset!!!
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https://podcasts.apple.com/us/podcast/hidden-brain/id1028908750?i=1000436846861
mind boggling results from scientific clinical trials about the power of the placebo effect ...
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Sunset,
I'm so happy for you! Am crossing all available digits that the process goes super well.
Jennifer
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Hope your Y90 goes well, Sunset! Things move fast at your IR’s office! That is great.
Miao, I will read the link re placebo effect. Hey, whatever works!!
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Sunset - great to hear your update and glad you were able to remove a piece for naugorney and get mapped for Y90!
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Great news Tina and Sunset! Good luck to you both. Don't you love how Dr's tell us to stay off the Internet, as if we are too dumb or gullible to find the right info. Meanwhile, we have to tell them about the new treatments!
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Okay folks...I got to the bottom of why we get aches and pains in between TXs.....suspenseful music playing....
As you know, I have been using lodacaine patches in addition to the fentanyl without much relief. I was experiencing horrible sciatica type pain and weakness in my left leg that caused me to wobble and to reduce my usual activities. I also experienced a shooting pain in my right arm, that rendered me incapable of lifting even a glass of water. I had to postpone my Doxil treatment to next week, I felt so vulnerable, miserable and scared. I had in addition booked a session this Saturday with a Chinese acupuncturist that had helped me in the past manage the same type of pain.
And then, last night, I finally figured it out.....I realized that cancer releases lactic acid in our bodies which makes our whole system very acidic. Although the pains that I was feeling seemed to be structural and of a nervous nature, they were in reality similar to a burnout after a workout, which explained why the analgesic medications were not working..
Solution? Just a teaspoon of bicarbonate of soda in a big glass of water that I sipped slowly before going to bed.
Results?
When I got up this morning no acute pains and no wobble, just fatigue.
Bicarbonate is the most alkaline substance out there. Of course alkaline type foods like fruits and vegetables would resolve the problem as well, but it would take a looooonnnngggg time in comparison to the bicarbonate.
So, needless to say...I'm extremely happy and content with myself....the pain after just one teaspoon is now at a 3 level instead of 8, This morning I added another teaspoon to a bottle of water that I will drink throughout the day....
So there you have it! I hope this solution works for you as well...
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Mia, that's amazing! Such a simple fix. I'm so happy you have found a way to relieve some of your pain.
Sunset
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