How are people with liver mets doing?
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Sorry to hear about y'all's struggles. Keep us in the loop as to what's going on.
JFL and Sarah - have you gals looked into the taxol in pill form trial? It should be opened to people who failed taxanes before and it might be a good solution as Taxol is usually suggested when liver mets are getting out of control.
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Daniel, the pill form Taxane sounds great. No IV is always good. I might consider it down the road but am still trying to recover from Abraxane neuropathy in feet/ankles. I have already taken Abraxane and Taxotere and tried Taxol but was severely allergic. However, I would consider trying it at some point. The taxanes are not necessarily cross-resistant with each other based on the different binding agents/delivery formats
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Husband-my MRI came back as cirrhotic or fibrotic but my oncologist believes it’s cancer. LFT’s have been up and down. My spleen is enlarged too and he thinks that is because of mets in my liver. No biopsy yet but I would feel better if we did. I’d like to know for sure.
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Husband my pet/ct says worsenIng cirrhosis with ascites. oncologist doesn't think it's cirrhosis but nothing looked like cancer either. Just doing abraxane and he put in for a liver consult.
My liver tests have been high for months except the bill, which is always normal. He says the high alk phos is from having bone Mets and other than that my liver numbers are better than his. I was shocked about the liver as well as terrified, but hopefully abraxane is working. I do think the ascites are going away. Very gradually. I think.
I'm thinking of you all and I hope all these issues can get resolved.
I just saw a commercial about BCO!
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Still no news about my MRI results. Usually I would say bad news travels fast so it must be good news. Not this time. I have an inside source at my IR office. I tested her yesterday, she said she would tell my doc and he would look at the image's. Not wait for a report. After all he is a radiologist. No news. I know Katherine would not let me wait and worry this long. Something is wrong, I'm thinking those four tiny lesions in my liver have grown and we all know what that means. 💞
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Idk if I would worry. I gave up a long time ago trying to figure out what they know by the look on their face or tone of voice. And they all say wait for what the doctor says. I don't bother asking because they are strictly not allowed to tell you anything.
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Oh if I could master the not worrying part of me...... how wonderful that would be.
I did hear from Katherine, she is my IR Physician Liasion. She is the one who picked me for my modeling gig. She is not a tech, although I am good at reading techs, proven instincts many times.
She texted me today and said that my I R has looked at my images but still wants to look at my August PET. She said he would call me today.
I think that could mean that those four tiny lesions have not grown. But, he still needs to confirm in his mind the exact location of the 2cm increased uptake area from August. What reason? I won't know till he calls.
Funny thing is my PET isn't scheduled until December 27th, MO appointment December 28. It too will be compared to my August PET. Kind of backwards but to be honest I trust my IR more than my MO. And I trust MRI for liver more than PET.
I'll let all of you know as soon as I know. 💞
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Fingers crossed, Grannax. The goods news is that if he needs to compare something to a prior scan, I would bet that there is nothing extreme on your scan, even if worst case scenario, there is something you don't want to see.
I met with my MO today and his plan is for me to move into an NCI MATCH trial for FGFR mutuations with a drug called Erdafinitib. I am happy about the plan, except feel very nervous about the whole waiting to be accepted into the trial. The NCI requires a new biopsy which I am trying to schedule for next week. They require the biopsy be sent to them to do the gene sequencing. With the holidays, the time to make it through the red tape could end up being even longer than usual. I wish they would permit patients to be treatment while waiting for registration to be approved.
Some good news - I received a promotion at work and am taking on a meaningful leadership position! I learned today that it will be announced on Monday in the office. Nice to focus on something positive. Much more fun than focusing on the recent PET scan with the two new lesions.
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congratulations JFL for your new leadership position at work and for preparing to get on a new treatment plan you like. May they bring you renewed health and great satisfaction.
Don't fret about the lead time, it will do your body good to clear out the old medications....and prepare the ground for the new one.
I too have made some progress...no more limping and limited response in my left leg. My antioxidants and antimflammatory diet has been working well ....now I just hope these positive results last.
I also been visualizing myself running by spring time, an impossibility considering my constant fatigue and two collapsed vertebrates....but its nice to switch my mind into positive thinking again, instead of feeling as if I’m constantly drowning....
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Good news here today for several of us, me included.
My IR just texted me, 8AM on a Saturday morning! Who does that? He said he does not want me to be overly alarmed, he just does not agree with the radiologist who read my PET and wants to talk to him. He decided it would be wise to wait until after my December 27 PET to make his determination. But, if anything came from talking to the other radiologist, he would let me know. Wouldn't it be nice if we could all have direct conversation with our docs? So comforting. He is one of a kind and I appreciate him.
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I’m impressed with your doctor Grannax, what a guy! And wise too...a correlation with the Pet sounds like the right move....best wishes
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Me,too. When I first met him 1 1/2 years ago, he was not my favorite person. His bed side manner needed a lot of improvements. Even then he gave his patients his cell phone. It was his Physician Liaison that chose me for the Fashion Show, the one where they did the video. Now, that video is on his website. Hmmm maybe I'm getting special treatment, since I advertised for him. I hope not, I wish all docs would do this. It saves so much wasted energy by not worrying.💞
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Question. Does anyone know what it means if your liver MRI report mentions "artifact" in the report? I just remembered a conversation I had with my IR receptionist about a week ago. I don't have a copy of my report but she said it mentioned artifact. IR did not agree with that because it's usually only mentioned when a patient is extremely overweight or obese. He said she is not a big lady, this is not right.
What does it even mean in regard to an MRI report. I'm wondering if it's an area the radiologist cannot see clearly? Anyone know?
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Hi Grannax- artifact usually refers to something extraneous that shows up in a test. In the lab, say, we may see something on a slide that is caused by the staining procedure and is not a cell or anything organic. We would call that "artifact". Sometimes it is difficult to tell the difference, but an experienced eye can distinguish. On an MRI, it might be an area of shadowing that was a result of the test conditions on that particular day, but is not true pathology? Love to you, Mary Jane
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Thanks MJH.
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Grannax2..thinking of you. I am having a liver MRI in January to look more carefully at cysts showing up on CT scan. It just seems to be part of our lives..scans, labs, treatment and worries. Ugh.
I look forward to seeing your new gown and jewelry at your next modeling "gig". You help make me smile (even thou I realize you get scared, too), so thank you.
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Grannax2...thinking of you too, and hope that next PET will help provide more conclusive answers. Hate that you have wait so long though...I have CT scans coming up this week. I'm rather new to this, and the anxiety of the waiting is making me crazy.
JFL...sorry to hear about the new lesions. Sorry if I missed this and I don't understand the mechanism exactly of how the y90 works, but does the new lesions imply that your y90 was not successful? Or is it that the Doxil is no longer working? Praying that you'll be accepted into the new trial quickly. Please let us know how that goes, I too have a FGFR1 amplification and am interested to know if that may be an option for me at some point. Congrats on the promotion!
PB
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JFL. Yes that waiting to get a trial thing sounds very frustrating, all the possible pros but no real statistics. Scary. Then all of them seem to make patients
be off treatment for for so long prior to trial. Nerve wracking. But, I like that it seems to match your genomic testing results. I hope all of us could have treatment that matches mutations. It just makes sense to me.
Seems like everything is trying to keep us from feeling all the joy of Christmas. There are several of the ladies I modeled with in October having huge setbacks. One has four small children. So sad. One had to have major brain surgery to remove a large tumor from her brain and now chemo. Cancer is evil, I have decided.
I am very into Christmas as it is also my birthday. This year, for the first time I'm not getting to decorate. Bummed about that. My kitchen is being remodeled. There is not one space in my whole house that not covered with kitchen stuff. Grrr. Gradually, my kitchen is looking like the vision in my head. So, I'm trying to be happy about the trade off.
Merry Christmas🎄
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Grannax, you are a Christmas baby! My son was born the 26th. Cancer is certainly evil.
Pboi, what my IR, MO and DH state is that all Y90 areas are inactive. The new spots did not exist when I did Y90 so they were not treated. Y90 will only help active tumors that are currently highjacking the hepatic artery’s blood supply. It doesn’t have a preventative effect and wouldn’t treat dormant tumors. Sadly, I would have been better off if these tumors existed or were active then. My liver lesions spend their time either in dormant mode or speed mode. Not all are active at the same time. This is a Doxil failure, unfortunately.
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Well we will do this progression in liver after Y90 together. I talked to my IR today. He was able to talk to the radiologist who read my most recent MRI. It now shows a small lesion in the exact area the PET showed almost four months ago. He doesn't look like something he can y90 yet. The other four are not growing but still suspicious for mets. Could be just dormant or slow growing right now. Like you said, slow or fast seems to be random.
He said he's sure my MO will want me to change treatment. During the September scare, which now we know was real, she wanted me to take AA. I don't see her until 28th but I'm sure that will be what she will have me do. He also said it's not in a good place for microwave ablation.
I have not seen my report yet. Merry Christmas to us.
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Grannax, I am sorry to hear the scan news. No progression is good but I am glad it is small and appears slow growing. What does your IR say about having additional Y90? I would love that approach but not sure if that is possible in my case.
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He said he didn't want to use up the y90 now. Wait till they are bigger and more then he will reevaluate. Microwave Ablation is out completely because of the location. What I'm wondering now is, can a BX be done? I hope so. I want to see if my cancer has mutated to having different receptors, therefore I would need different drugs to treat it. I also want to have the Foundation One test done on this one.
I have the report now. There are about six suspicious places none bigger than 1cm. I've also realized that the PET is more definitive for me rather than the MRI. Not the norm but that is my MO. I always fall into the rare possibilities category. Now I'm really wondering what my PET will look like. I'm also wondering if things should be speeded up a little rather than waiting till after Christmas.
You know it takes time to get BX receptor studies back. So if I could get my PET sooner and then a BX. I could get results back and start on the right meds instead of a shot in the dark like AA. Of course that might mess up my Christmas plans.
But these liver mets have been untreated for four months already, we know from the very beginning they don't respond to Ibrance. So, what to do?
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I'm nearly 6 weeks out from SIRT (Y90) and my liver feels hard. Is this normal? Have my second dose of Carboplatin on the 17th since the procedure. Hope these treatments dont fail. Already had to start taking Endone for the pain caused by the tumour in my brachial plexus that does not want to go away.
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No, Tennille my liver did not feel hard after my y90. Something to check on, I think.
I have speeded up my plan. PET is Friday, MO appointment on Monday to discuss results and to schedule a liver BX. This show is gonna get on the road and fast. I'm not messing around on this. Cancer, especially in the liver, goes at its own speed regardless if it is an inconvenient time, like Christmas.💞🎄
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I need to vent. I am sitting here (like all of us) terrified what the liver is going to do next. I am on carbogem-but of course it will stop working. I have morphed into triple negative so of course I am doomed. Sooner than later. I have been dealing with this beast since 1998. And I am eternally grateful I had 15 cancer free years. But I have no hope. I read the comments and everyone says it will get you in the end. I suppose it will. I guess I wish I could read something positive on these boards. I am sorry-I am just babbling. I just can't enjoy anything. I am not a candidate for y90. So I wait for hospice. I posted earlier my liver panel is going up. My bilirubin is at the high end of normal. 1.0. last time it was .5. that tells me things are not good. Thanks for listening. I live alone and my friends do not get it and my cats cannot talk.
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lisajo6, dont worry so much about going triple negative (I did too) the research focus is on TNBC and there are many trials coming up. I have heard Immunotherapy is good for TN. Have you looked into it. Keep fighting. Dont give up.
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Lisa
I am TN as well.there are several drugs out there and trials for triple negative. How is your treatment working now? One thing that effects my bil and liver enzymes is the amount of water I drink. If I don’t drink at least 2 liters a day it seems my bil and enzymes go up. So are you drinking enough water? I know it sounds like a simple thing to do but it does make a difference in my labs.
I know this is a hard time of year too. I don’t read stats anymore. I try to focus on positives things in my life, yes some days are tougher than others for sure. I also get discouraged at times and just have to find things to do to take my mind off of things.
Venting here is a good place to get things off our chest and minds. We are all on this journey together and can help each other through
Sending uplifting prayers your way. Hugs
Tricia
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Dear Lisajo, it's natural to feel overwhelmed at times especially when we have to switch treatments and don't know how we will be affected next.
From my perspective, you have also many reasons to be happy and celebrate. You have been fighting and winning against this terrible disease for 18 yearrrrssss! That's an amazing feat!
Congratulations and good for you! Obviously you have immense inner resources, and there's no reason for your good fortune to end now....give your team a chance to come up with a plan.
Meanwhile it's okay to feel overwhelmed and express it....we ALL understand you....we have ALL been there ourselves ( except for the 18 years survival) and like Scarlet O’Hara are here to tell you that tomorrow is another day...
Sending you a warm embrace and best wishes for uplifting thoughts and feelings.
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Thank you ladies for your encouragement and wise words. I appreciate it more than you know.
Love and blessings,
Lisa
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Some interesting news regarding immune therapies...my favorite although still unavailable TX
Researchers Develop Nanodiscs That Can Wipe Out Tumors
https://futurism.com/researchers-develop-nanodiscs-that-can-wipe-out-tumors0
