How are people with liver mets doing?
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Grannax2, have you ever had a taxane?
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yes I had Taxotere back in 2001. So I might be able to take one again.
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Frisky- Thank you. I will ask MO about MRI of liver. And hope insurance agrees !!!!!
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Candy,
I second Frisky's recommendation. This past May, I had a PET/CT with contrast, and it showed what was described as a "wrinkle" in one of my liver lobes. The radiologist suggested an MRI. Guess what? The wrinkle was actually 6 separate lesions, 5 of which were sub-centimeter in size. They were only really visualized on the MRI. Convinced me that that was the best test to show the liver. I would push for the MRI.
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Thank you BevJen. I will ask MO for an MRI. I worry the insurance will balk about a MRI since they initially denied this CT, but we can try. Should I just do this 1 MRI and see how goes or should I have serial MRI's like I do the CT (every 3 months)? Never had a MRI of liver so they cannot compare it to previous ones.
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I'd say let them see which scan modality reveals the best information for you, especially with that ILC component. It's not just location but the character of the particular cancer that matters, I believe. And the purpose of the scan.
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Thanks Shetland. How are you doin? I read in one thread, forgot which one- I bounce from one thread to another, that you are recovering from stent exchange and biopsy. Maybe rad therapy since you cannot do chemo right now?
Sorry to be stressing over millimeter changes with me when you and others are having it so bad. I just worry that I could be starting to have changes and once things start they can change quickly. You all know how that can happen.
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No apologies, candy. We have each been dealt our own unique lousy set of cards, and they are all lousy in their own way. And yes we know things can change quickly. I like it better when I can ignore that fact and not have it in my face like now. Right? I’m supposed to start chemo in a couple weeks, but what happens when two days later there is another fever? I am asking about local treatment for the one near the bile duct so I can get rid of the stents, which make infection more likely.
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Shetland- My prayers go out for you. Anytime you want to vent, just PM me.
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Candy, RECIST criteria consider progression to be increase in solid tumors of 20% in sum. Anything less than that is considered stable. Most if not all clinical trials use the RECIST criteria. With individual MOs, I don't think they necessarily follow that to the "T". There is probably a range of practices among MOs.
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Just logged on again.
Thanks JFL.
Not to keep harping on the subject, and I will have a discussion with MO on Monday. But based on the RECIST criteria, I do have progression. 7mm X 6mm last scan and 9mm X 11mm now. 20% of 7 is an increase of 1.4mm and 20% of 6mm is an increase of 1.2mm, so progression.
I have decided NOT to change treatments yet. See what scan in 3 months shows. I will ask MO about getting MRI to see what that shows.
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nothing wrong with going on on the topic specially if it is a material observation. Even if it was not- the matters discussed are literally of life and death so no amount of talking about them is too much. Good luck with your Monday appointment. Hope it's ok that I write here - I do not have liver Mets; I just get lonely with my chest ones as there is no active thread about it 😂0
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Does anyone know what will help with referred pain from the liver to the right clavicle-shoulder area? My onc told me that this was what I was experiencing the last time it happened. According to my research “The liver, which is segmentally innervated by thoracic nerves T7 to T9, can refer pain to the right shoulder through its contact with the central portion of the diaphragm”. Indeed, a deep breath increases the pain for me. I’m getting pretty tired of it, and not sleeping well. My nurse suggested ibuprofen. But given the odd origin of the pain, are there other things to try?
Anotherone, how odd — there seems to be no active lung mets thread. I just saw posts by two new stage iv members with lung mets. Maybe in addition to hanging out with us liver metsters you could start a current lung mets thread? Or are you saying you don’t find others with chest mets?
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shetlandpony,
I too been suffering from debilitating pain and a sort of numbness into the right shoulder and arm.
what works for me consistently is taking 400mg of magnesium citrate as soon I wake up and another 400 mg with calcium at dinner time. It works instantaneously and then I can use my arm without any pain in my shoulder.At times, I take another magnesium at lunch. And I don’t get diarrhea either.
I hope it works for you as well...
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shetland , I am everywhere at the moment - food threads, reconstruction ones, liver, fenben, H&P, abraxane - you name it .:)
I have no symptoms whatsoever , have not had any local procedures so I do not feel I can contribute much to fellow lung matters. I keep an eye on signatures and do not see many ones anyway..May revice old one if anything.
Hope Frisky's tip is helpful to you.
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I have the referred pain to my right shoulder, too. I take magnesium at night but will start taking it in the AM, too.. But,, I still am bothered most by the pain in my right side under my ribs. Especially, when I try to sleep, it seems positional. I have reflux so Advil is not an option.
I'm extremely worried about about my recent PET results. Because the report was not explicit, I don't know what percentage of my liver is affected. I'm sure it's a large percentage. I have not seen the images. I know both lobes have a lot of tumors. Scary. When will it block my bile duct, like Shetland? Since my MO appointment was so unsatisfactory, I'm going to my IR next week. I'm finally ready to see my liver monsters, I've been unwilling to see them for three years. Now is the time. Of course I'm praying that he will be able to do another y90, the only thing that has touched my liver tumors for the past three years.
Why do ineffective chemo again? I might be done with chemo. I know I'm done with targeted therapy. Am I frustrated? Yes, big time.
My lung mets are basically stable, so I think IR will like that. We all know we cannot do chemo and y90 at the same time. We all know liver mets are much more life threatening than lung mets, mine have hardly bothered me at all. Liver mets are deadly. Duh.I also know my IR is on my side. He does not treat me with flippant remarks like my MO did. He's really on my team. If there's anything that he can do for me, he will. Even if it's risky. I trust him. Plus, I've gotten to know my liver monsters, they don't respond to any other TX. Am I close to the end? I'm not ready to give up yet.💞
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Grannax I think you have a good plan...have that talk with clever MD Travis Van Meter that you love so much, if he can do Y90 again you would be well set for a long time, and your body will have time to recover from the devastation of chemo.
we're all in the same boat...never knowing what’s next with this fkg disease....I’m going to get a pet scan soon to see what the heck has been happening in my liver...
I hope it turns out to be a good consultation and you feel a lot better afterwards....
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Grannax -
Your extremely positive outlook and tenacity surely count for something. And they inspire all of us here...
My love to you,
Gumdoctor
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Grannax2, I have only found one other person on BCO whose bile duct got blocked. I don’t think it is common. The question I have about chemo for you is, what class of chemo have you not had yet or not had in ages, and can they try a low dose of it perhaps? Same for targeted. In other words, what can we try that is different?
Thanks for the tip about magnesium, Frisky. I have it on my list of bone health supplements, and I guess I could start that protocol now beginning with the magnesium. I haven’t wanted to start anything new during this process of figuring out the bile duct stuff and preparing for the “procedure”.
The biopsy Inside the duct showed inflammatory tissue, not cancer. Still waiting on results from biopsy outside the duct. What if I have a completely different problem than cancer in this area? I’ll need to see the GI docs soon.
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Thanks Frisky, gumdoctor and Shetland.
I've taken all of them and both targeted TX. No going back on targeted/ IR because of ESR1 mutation, won't work. Possibly, Doxil or one of the new Taxane type chemo although I've already taken my lifetime maximum of the red devil. I've had Taxotere, too. I'm not willing to do any of these TX until I have exhausted all local liver TX. After recovering, I will consider it. I have heard of many liver mets patients who have bile duct blockage, liver failure follows. Glad that's not your case, Shetland. 💞
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Um, thanks?
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Shetland, I NEVER meant for my words to hurt you. From what you've said, your cancer is not blocking your bile duct. So, you are NOT in the situation I described. I'm so sorry that I offended you. Please forgive me.💞
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I know, Grannax2. I’m sorry for the tone of my reply. My great fear is that if the stuff constricting my bile duct is not cancer but scar tissue from inflammation, then chemo will not get rid of it and I will get liver failure if it progresses.
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I know. We have such big fears, all too real. Because this stuff is scary. We don't know what we are up against day to day. How we keep functioning through it all is beyond me. At least we are here for each other, no matter what. We get it.💞
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Yes we are. Yes we do. Hugging you, Grannax2.
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Hugs Grannax. And group hug to everyone.
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ShetlandPony,
My situation is not the same as yours but there are similarities. I have 3 large blood clots in inferior vena cava, right and left portal veins. And 3rd one appeared while I was already on Eliquis (blood thinner) for the first two.
While they are "non-occlusive," they are bad enough to cause numerous, rare liver infarcts (areas of liver cell death) due to blocked blood flow...
The experts were consulted by my MO and they are sure they don't know what is going on, supposedly because of liver infarction rarity.They are also sure it is all improving so they tell me I should not worry right now...
I have to give myself 2 very painful Lovenox injections daily and indefinitely because the Eliquis obviously was not enough.
As you know, being told not to worry is one thing. Not worrying is another thing completely...
While I do not know what you are going through, the worry and fear I feel has to be similar to yours in some way. Livers are so important and so precious and it seems we have very little control over what is going to happen.
My thoughts are with you. Even if there are few people with your exact situation, you know we are here in your corner, in your pocket, rooting you on through this.
Prayers for you,
Gumdoctor
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Grannax,
Thinking of you this week as you head to your IR. I so hope he/she has some great tools up their sleeve for your situation.
I head for Abraxane infusion #10 and cisit with Dr Angel. I hope and pray there are no surprises to interfere with tx tomorrow.
I was up all night last night and have been dealing with severe burning on urination like a UTI. Started 5 days ago. Also had this a few infusions ago but urinalysis showed no infection. Hopefully they will do a urinalysis tomorrow and give me more info than I got last time.
Worries swirl in my head every time something comes up...if it isn't a UTI...what is it then??? Something really bad??? Cancer-related???
You all get it here...the worries that magically appear...over the smallest things...
Hoping your IR visit goes so well and you report back with some great news...
Love to you,
Gumdoctor
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My Ragdoll Max is 16+ yrs old. He had to get a "lion cut" to get ahead of his fur mats on Friday. He has been shivering since and taking several blanket-wrapped naps on my lap all weekend. He has never been one to like being under wraps...
Here's the thing...of course I love being able to comfort him in this way...and I love that he comes to me for comfort...I am all he has...but I see him suffer because of my cancer's collateral damage...dealing with horrible guilt...
I am at the house where the kitties live 3-4 days a week...I am at the house where my husband lives 3-4 days a week...all scheduled around appts and treatment and side effects and and and...
I can't be with Max every day to brush him and keep a close eye on him or any of them all the time...it is heart-breaking. The vet has told me to quit beating myself up over this because they all seem to be doing very well.
Still...I feel the guilt...
And I am SO NOT READY to start finding new homes for them...
I am hanging on to them for my own survival...I love loving them...and I love them loving me...each one is so beautiful and so special and have such a survival story...
Thanks for letting me ramble on about my kitty children love...
Gumdoctor
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Gumdoctor, those sound like some serious complications. Our situations do seem similar. We educate ourselves on liver mets and then weird stuff happens and we don’t know what that will mean for us. I’m so sorry you have to give yourself those shots. Have you gotten any help for that? Lidocaine prilocaine cream? It just occurred to me that it’s like your liver had strokes. Why?? They can’t tell you. About the burning, could it be the chemo on skin made sensitive by it? Maybe try rinsing after and applying a protective ointment, kind of like when we put A&D on a baby’s bottom. Just brainstorming. I remember my onc nurse telling me when I was on taxol that there was something that could happen that seemed like a UTI but wasn’t.
Lovely, lovely kitties. Try to let go of the mom guilt. And remember that when you are away they will cuddle each other.
Grannax2, what a scary place to be, wondering if there are effective treatments left that you can tolerate. I hope your docs come up with a good new idea. Second opinion time? I know, it sounds exhausting.
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