How are people with liver mets doing?
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lollll Isy, it was almost dawn , i had taken my sleeping pill but nothing came of it except typos hehehe. L have not been sleeping well lately. I am glad you enjoyed your guiness and even happier your sister is with you.
PET. Scan will show unusual acticity in hot spots in the body , example cell activities met sites. It is called SUV The higher the SUV is the more it is likely your tumors are prgressing. PET is not very accurate in size but 99% accurate in detectting metastatic activities throughout the body. CT cannot. In stage IV PET. Is used to be able to follow the patient more closely along with the mets. I have been having those since december 2014 every three months. So i guess this will be your baseline.
Sometimes the lesions show but when there is no activity on them it will mean your cancer is there but not active. Try to keep yourself busy until you get the results.
I pray you have an encouraging one. Enjoy your time with your sister. Hugs.
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Isy, I think I see why your onc has ordered the PET. You said you look and feel good, and labs are good, but CT looks bad. As I understand it, a CT will show the shapes of tumors, but the PET will show how metabolically active, or not active, they are. In other words, sometimes tumors show on CT, but the PET will show that they are slow or dying or dead. (This is what happened with me after taxol.) So I hope this info will reduce your scanxiety. Enjoy your visit with your sister!
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thanks Shetland. It would be lovely if all those mets were dying but after only four treatments it's unlikely don't you think? Doc also said something about checking for any activity in areas outside the liver. Now that is scary. Fear of the unknown again. Sometimes I think I'd rather not know.
I'm also in the scanner on Wednesday Moni though maybe in different time zones. Where are you? Hope it goes well. Will report back.
Hope you sleep better tonight Woody.
Xx
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I follow this post regularly - I have two questions regarding recent posts - my onc has told me that Medicare is now allowing only 3 PET scans for lifetime - this began sometime in 2013 I think - I have already had two since this started - has anyone else encountered this - it worries me that I have not had one in almost a year - I am having regular bone PET scans as apparently this is allowed but not full body and the bone PETS do not tell them what is going on in the liver.
Also, I am on my 5th cycle of Navelbine and am continuing to see rise in liver enzymes - enzymes were not elevated before starting Navelbine even though there were 3 active, rather large tumors. Contrast CT a month ago (after 3rd cycle) showed significant reduction in size of tumors so I am wondering why the rise in enzymes??? I will have a PET bone scan this Friday and another contrast CT after cycle 6. I think I read somewhere that Navelbine itself can irritate the liver and cause a rise of enzymes.
I have been lucky that my WBC and RBC have remained stable enough to continue treatment. I would be happy for any knowledge or feedback - Susie
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apackoftwo, if your scan show reduction this is good even if you have change in liver enzymes. Most medications we take irritate the liver so does nevalbine. They will return to normal eventually.
As for the PET scan , i am not an american but i do have family and friends there, i know that all Medicare systems will not pay for a regular PET it is too costly for them, how ever insurances do. I hope you find a way to keep scanning at least till you pass one year of stable or NED then you reduce the gap. I am so happy nevalbine is working for you and i hope it keeps reducing the tumors.
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isy--I am not on the same meds as you so I can't answer in that respect, but when I did half way scans,,,tumors in liver were reduced by half. Take any reduction! Even stability! Whatever the outcome, we are here for you
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Hello Ladies,
I guess it is time I join also! I was dx on 07/08/15 with stage 4 bc right from the start. PET scan that week showed little spots in the liver, but nowhere else in the body, so here I am. I had ovary removal 1 month ago and just (today) finished my first Ibrance + Femara cycle. I think it will help me to read back and get some more info for liver mets so I can see what I am up against! I am so new to the bc world, this has been quite the journey allready! I hope everyone is doing well, thanks in advance for allowing me to join you!
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Isy- I'm in Ca, USA. I guess you are way ahead of us and that your PET is over. Crossing fingers for some good news!
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Mama2twinsplus2,
I am really sorry you are here joining us. A cancer dx is no one cupcake . Liver mets are not the easiest mets, since the liver is a very important organ in the body and our whole blood system passes through it. But it does not mean no hope. Thanks to many new treatment options people are surviving lnger and doctors are managing the disease better. It is not an easy ride, it takes a lot of strength and faith.
They strated on the newest trial and i hope it will work to banish your lver mets. But keep in mind there a lot of other options and one maybe the ne for you.
I welcome you and hope you find BCO helpful and supportive. To me it is like family and all the ladies are wonderful and caring. We are here to support each other in the good and the bad.
Wishing you a good response and i pray you will pass rhis.
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Thanks, Woody! You're the best!! PET results yet or have you even had it? I remember it was cancelled or postponed for a bit. Let us know. Always rooting for you and all of us who have joined this rollercoaster ride!
Debbie
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Moni, yeah it's all over now but was in the waiting room when I saw your post. Managed to get quite a good sleep waiting for the contrast to kick in! Should get results Friday. Good luck with yours
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Isy- Waiting with you! (((Hugs))))
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Thanks Woody, I really appreciate the welcome and the encouragement! I need all I can get right now! I look forward to getting to know all of you and and gaining/contributing more knowledge!
Alissa
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Hi all! Well. it has been an interesting morning! Got a call from the onc's office that she wanted to go over the PET results. Said I had an appt on the 1st. She said the MO wanted to see me today and how fast could I get there? Talk about and oh sh^% moment! They never do that for good news! Turns out not that bad though, more lymph nodes throughout the chest and peritoneal areas, but no other major organs, liver and breast that we already knew about. The receptors changed from triple + to ER/PR- Her2+. Didn't expect that! So she is not sure if it is mets from the first time or if it is mets from the second. She is leaning toward first though with a flip-flop. I explained the need to not miss work for 6 weeks and could we wait. She said no, I do not have that time. She wants to start chemo on 9/29. She said this is very aggressive and is worried about liver function. Dang it! Anyway, guess I just boarded the roller coaster!
Isy- Any word yet?
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It's never simple, is it? It's really good that your doctor is on this and not delaying. Does she think you might be able to work while on chemo?
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Hi ShetlandPony- Ahh, no never. Yes, she is hopeful. My job will not be physical now, so she said go for it. No way I could have worked the old job any more. Office called after I got home and said my allergist will be at the infusion center with me for this. Blew me away, love that guy. He actually teared up when I told him what we suspected with the liver.
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in the waiting room moni.
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Oh Isy, that is almost worse! Waiting with you..(((hugs)))
-Monica
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definitely the waiting room is worse - and getting calls like you did Monica! If only they could give you some idea
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Oops! I'll continue.. If only they could give you some idea of what it's about before telling you to rush in. I had something similar. After my PET scan the tech said she just had to show it to the doc before I could leave. She then came back and said they were now going to do a brain CT scan as well. I knew my onc hadn't ordered this so was of course immediately convinced that they had found something in brain and needed a closer look. And as I was leaving I got that sympathetic, head on one side look from the tech that made me even more convinced I only had days to live. When I told this to onc he said it seemed they had started doing this as standard practice and not sure why. However he would tell them to explain that to patients in future!
Anyway, back to PEt scan. Nothing to report that we didn't already know: mets are extensive and haven't responded to treatment yet. However, they have NOT spread which is what I wanted to hear. I feel if I can contain it within my liver I can deal with it. She's a tough old boot my liver and when I looked at the scan there were still large green areas there so I'm not feeling too bad about it. Just got to find the chemo that works!
Hope your treatment goes well Monica, make the most of the time off work if nothing else. Welcome to the roller coaster indeed!
Hope everyone else doing OK
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Isy, if they have not spread more , that good stable is good . As for scanning the brain , well i know is not something anyone wants to hear, but maybe at a certain level they do scan by precaution. The waitng kills, i know but i do hope nothing comes out of it.
Meanwhile, i hope they work on finding you a good combo which destroys these mets. Keep us posted. Prayers heading you way .hugs.
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I know when I had my PET scan a few months ago, the same thing happened to me. They just explain that the CT scan was needed to get a good, well rounded picture of the brain. I was very worried, but the onc concurred and then I found it it was all clear, the brain CT that is! Hoping the best for all you ladies!!
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Isy- that is terrible! Of course the first thing you would think is brain mets! Glad to hear that the mets haven't spread and hoping they find the right combo to knock them out!
Does anyone else have pain with this? My digestive system does not seem to like anything I eat, and I have a continued gnawing pain over the liver area. I can't take opioid pain meds as I am allergic. My MO gave me a script for fentenyl tabs, but I can't find a pharmacy that has them. I also have been using toradol, but they said only three days worth because of renal failure in the past. So I use those sparingly to make them last. Do not know where to turn now, but open to anything.
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The brain is a metabolically active and use glucose. As the PET scan relies on glucose uptake to determine cancer activity, it is not a great test for showing brain tumors. That is why they use a CT scan or MRI to check the brain. Hopefully that is why you are doing the extra test, not because they saw anything.
Best wishes
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leftfoot,
It has been a while since you last posted, how are you? I hope all is well .
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Well things just keep snowballing. I can not get the pain meds that my dr prescribed because I am opioid naive. I am opioid naive because I am allergic to opioids! Unfortunately, I do not have those records as the Dr and hospital where I was treated closed and I am sure the Dr is dead now! Incredibly frustrated! So what happens when I need end of life pain relief? Need to find a street vendor......
I read the PET that was posted on-line and it was more that the MO let on. She conveyed the urgency of treatment, but not specifically why. I now know why: so many lymph nodes from supraclavicular to groin gave up tallying, met to left lower lung lobe, over 75% of the liver has been replaced by tumor. And to top it all off, the MO's request for and emergency drug approval is not happening that fast. I will have to sign a letter of being responsible for the Kadcyla infusion on Tuesday! The MO's office feels it will be approved, but not by Tuesday.
Not sure how much more I can fit on my plate. Feeling a little hopeless tonight.
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Moni, I just don't know how you are managing to cope. Please hang on and get to tomorrow. From things I have read on here things can make a remarkable turnaround over night. My heart is with you and I will say a prayer for you tonight that you find the relief that you so desperately need.
hugs
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Hugs Moni.
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Woodylb- Thanks for asking. I am doing ok. Running on fumes but I guess that is going to happen when chasing 4 kids and doing chemo. I had a brain scan two weeks ago and everything is still all clear. I had an echo this week and saw cardiologist thursday. My heart is doing better than ever. Thinking hitting the gym with the trainer 3x a week is not hurting. If only I could lose the weight. I have another Herceptin infusion on Tuesday coming up. Will see my oncologist that day. Which is good, as I heard through the grapevine that she was leaving. She confirmed so I expect we will have a lot to talk about. I have to find a new oncologist which is stressing me out. I know it will be ok, but she is the only person who has treated me so that is a little scary. Ill have one more CT scan before she leaves probably in the next few weeks. That will be an interesting one, as it is the first scan since my surgery. I am sure it will look funky as my liver is regenerating and there will be scar tissue. Just hoping of no new lumps. It would such to have to start yet another protocall with a whole new doctor. What a way to break them in right.
Anyway, I am doing well in the grand scheme of things.
leading a team in the local Strides against Breast Cancer and am currently the 2nd biggest fundraiser and my team is second best as well. I take pride in that.
Hugs to all
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Oh Moni so sorry to hear you're going through all that I hope you manage to get some pain relief soon! And something to calm you. Like we said before, transparency and honesty by our medical professionals is so important, it is NOT nice to find out these things by yourself or give you so little information you're left wondering if you're getting the whole story.
herceptin is doing great things for those with liver mets and once you get yours I'm sure the fog will begin to lift and you'll start seeing results. Thinking of you,
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