How are people with liver mets doing?
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Faripari...Sorry to hear about your mom. You may want to go to the IBRANCE thread there is wealth of information there and people post regularly so you will probably get a lot of advice and answers
That is one thing I really miss about being on Ibrance....was being able to ask questions daily and always get answers.Ladies... My PET is tomorrow please pray nothing new... PLEASE... Love to you all. (Hoping to have results Thursday at MO appt and start of first IV chemo)
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Nicole, I'm holding your hand girl. Nothing nothing nothing is our chant ...
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Nicole- In your pocket for your PET tomorrow.
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Nicolerod. Cheering you on for good results..you've been kicked down way too long and deserve good news.
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Heartbreaking to read about Gumdoctor's progression! Why can't this disease better controlled.....relentless!! Prayers for her and her loved ones. Thank you grannax2 for sharing. Faripari- I was diagnosed with widespread liver mets in January/18. After 6 months of chemo, I started Ibrance 125mg that has helped to keep my mets stable for almost 2 years thankfully 🙏. It’s a good treatment without a lot of terrible side effects for me. Nicolerod- praying specifically for nothing new on PET! Hopeful visit with MO!
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Nicole, In your pocket with good vibes for tomorrow! Nothing is the word. 🤞
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I LOVE you all SOOO MUCH...you all lifted my spirits today and I needed it!!! My son in NY is just getting all better from a horrible bout of the Corona Virus...he had it very very bad...and then last night my mom went in the hospital with a bout of Pancreatitis...but turns out she actually has pneumonia in 1 lung..so now she is at risk in the hospital to catch Covid....
I am taking you all in my pocket tomorrow!
and Thursday for results and 1st IV Chemo!0 -
Sending good wishes to you and your family, Nicole!
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good luck Nicole, wow you've got alot going on. best wishes that all goes well for you & your family.
so sad about gumdoctor.
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Right there with you. Prayers coming your way Nicole
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anyone here with 70% liver with mets shown regression or shrinkage in size after using ibrance and aramidex(anastrozole), her pet ct shows half of her liver lit up .
concerned daughter
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Faripari, amazingly, the liver can still function well with a large amount of tumor in it. If the liver is not in a dangerous condition, Ibrance + anastrazole or letrozole is a standard, recommended treatment. If the liver is in a dangerous situation, it would be common to first get things under control with a chemo, commonly Taxol, then go to Ibrance + anastrazole or letrozole to maintain. (That is what I did.) So your mom can ask her oncologist how serious the current state of her liver is, and why the Ibrance route is recommended right now, and how the oncologist will monitor her to make sure the treatment is working and things don’t get out of hand (tumor markers, liver enzymes, scans).
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Lol, Sandi, you said that at your liver biopsy when you had questions, “I think they started that IV fentanyl,versed quickly just to shut me up..“ When I had my most recent stent exchange, the anesthesiologist asked for a better-fitting blood pressure cuff for me. I confirmed what size I use, but they did not have one handy. So he said to put it on my leg. It was too tight and really hurt when it took my blood pressure. I said, “Ouch! This is not acceptable! It is squeezing too hard. I'm a dancer and I don't want an injured leg." It squeezed again, and the last thing I remember was protesting and insisting they get the right size arm cuff for me. “This is unacceptablllll 😴..." One more note for me to give the anesthesiologist before the next exchange.
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Leftfootforward, I saw your update on the neratinib thread. I hope your onc is already doing the paperwork to get you that tucatinib, so you can start as soon as you are ready. Thinking of you often.
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Nicole, thinking of you with your scan tomorrow.
Sandi, to your question about the aftermath in the liver after tumors shrink, I get the sense it is pretty individualized based on tumor size, aggressiveness (aggressive tumors starve to death in the center while growing on the outside), the natural way the body responds during the healing process, etc. It is possible to become truly NED in the liver with all remnants of dead tumor disappearing but that may not be how it works in most cases.
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Nicole, I hope that you have two pockets because I want to fit in there to today for you, too!
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Nicole, I hope that your pocket is a very large one as I will be in there today with the rest of the gals for you, too!
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Nicole. That must have been so scary for your son to have Covid19. Was he in the hospital? Now your mother!!
My SIL had his blood tested for antibodies, turns out he did have it! I'm so surprised because he had very few symptoms for a short period of time. My daughter was sicker for longer but tested negative on the antibody test. She's going to get retested. The test is wrong 15% of the time. Our world is crazy right now.
I haven't heard from Gumdoctor's husband. I'll text him soon.
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My dear friends...I need you... thank you for all being with me today...but something happened.... After I left the PET scan the scan place called me...they asked if I had the records of my Ovary removal from November....I said I didn't...obviously I was panicked...but confused as I have no ovaries...and when I did the biopsy was all clear in them... Well I called my MO bc I was scared..and she called over to the Doctor reading the scan and called me back and said " I have to be quick because I am going in room to see a patient...but I called over there and they wanted those results because I never wrote that it was benign for ovaries on the report back in November and RIGHT Now she saw some UPTAKE IN THE PELVIS. I will see you tomorrow at your visit".....
So i guess that means (from what I am seeing on line) it says uptake indicates cancer....so I mean what in my stomach?? I don't get what else is around where the ovaries were???
I am obviously panicked...UPTAKE...
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Nicole- Breathe. Breathe. You don't have enough info yet. Could be nothing. Breathe. Praying.
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Dear Gumdoctor- soar with angels sweet sister......
Nicole- a couple pet cans ago, my whole stomach lit up. It was nothing-probably inflammation from the chemo. My MO dismissed it. Radiologists report every little thing they see, but it is not always clinically significant.
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Thank you candy and MJHJAN!!!!
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Nicolerod, I have heard same thing from my MO. She said PET can pick up inflammation and cause more questions than answers. That is why she hesitates to use this modality.
Your MO in her rush should have said that to you to ease your mind until the two of you meet tomorrow.
You will always have support here.
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Thanks Sandi...My MO actually really did me a huge favor by calling the person reading the scan to find out why they were even asking about my ovaries.since she knew I was so concerned..there was no way for her to reassure me of anything more because she doesn't even know the full results of the scan....unfortunately...
She really (other than this ) is so amazing....so I am not upset with her... I think I am just more upset at the cancer...and that I guess I just thought foolishly I might actually get a chance for a treatment to work (longer than 3 months) before i would have to deal with cancer in more places in my body. **if that is in fact the case** I am so grateful that you are all here wishing me well...and most of all understanding what I am feeling. I love my family ...but they just don't "GET IT"....they don't get the feelings the full emotions the full stress the full scanxiety all of it...but you all do
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Nicolerod - I’m sorry you are going through this! Breathe, it’s all so much to take in and we are never prepared for disappointment. I agree with others....Pets can pick up inflammation....,.I’m praying it’s picking up Inflammation from your November surgery. I’m so happy that you trust your MO and I have no doubt she will have a plan for you! Praying for that one treatment that kicks back the cancer wherever it is.
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NicoleRod- I agree there are so many things besides cancer that light PET scans up.andctadiologist report everything they see. I’m sorry you have to wait fir answers however. The last thing we need is more things to worry about.
got my TDM2 treatment today. Found out t he at I need a transfusion. My hrr Er Mo globing was 7 it was 8.3 3 weeks ago. Explains so my r of my fatigue. Friday is going to suck as I get my transfusion and then my friend will drive me to my last cyber knife treatment. But next week will be great. No cancer appointments.
Thanks everyone.,
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Nicole- In your pocket today for your MO visit.
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Nicole--I am still using Herceptin as part of the "mix" because I am weakly HER2+, but I am not one of the lucky ones that can just have herceptin. I haven't hada treatmetn that has worked in --gosh, over a year, though who's to say that my progression might have been even faster if I hadn't taken them?
Just got my blood tests back that I took today. My GT, ASAT, ALAT and ALP are rising pretty sharply and my leukocytes and netropens are just under normal. I find this worrying and am curious what they will say about my next Doxil treatment on monday. All I can find onine is that the liver values indicate alcohol overconsumption which is definitely not part of my lifestyle these days! My liver function values have been pretty good all this time so this alarms me a little. Also the hand/foot syndrome and rash have kicked in. So though I am thankfully corona symptom-free I may ratchet back on activity in general. Did anyone else experience rapidly rising liver enzyme values on Doxil?
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arolsson - you're not taking acetaminophen are you? That can make liver enzymes go up.
My weekly chemo got cancelled today because i woke up with a 38.4C fever. I've had ongoing fever & chills issues for weeks but usually it's been going to 37.7 or 37.8 & the MO has been sort of ok with ignoring those as they'd just go away, though we really never had an explanation for them. 38.4 was too much to ignore though...
Ugh. Worries me to skip chemo I had delays and skips when I was stage 1 cause I was constantly getting ill & I can't help but wonder if that was part of why we didn't 'get it all' & now I have to start antibiotics again - they think this is a recurring stealth bladder or kidney infection even though I've had a couple urine samples come back with negative cultures but then a week later, wham things to sideways again. Now there's weird crystals in the urine. Jeez, always some weird complicated thing with my case.
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hi ladies thank you for being with me today!!!
Ok got PET results. No New growths...just growth in the existing liver tumors and the sacrum. There is uptake in the pelvis but they are not concerned its cancer. My bilirubin is a little high today at 3 we need to pray it doesn't go to high or we will have to switch therapy. My MO also said it could be thst the 2 tumors in my liver that have grown is whats elevating the bilirubin and if thsts the case..and the Doxil works it can actually make my bilirubin go back down if it shrinks the tumors so we are praying for that.
My first Chemo infusion went well probably bc you were all with me. Also my IR at Hopkins looked at my MRI and said both tumors under the cryo are shrinking...one is not growing under there.as the radiologist last week that read it thought!! Here is a pic of us today there ...if you are wondering what my shirt and hubby's hat says its Yeshua/salvation..Yeshua is Jesus actual name in Hebrew.
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