How are people with liver mets doing?
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Dee - Yay!! Brain scan clear!! Yahoo! Great news. And fantastic you are getting a new MO. I switched and it was smartest move ever for me. Pray that your docs make best decision for you regarding trial vs other treatments. Not always easy decisions. Push them on their reasoning and then let your heart and head decide what makes most sense for you. From trial, doyou know what percent of patients have stable disease and for how long???
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Dee- that’s fabulous news. So happy for you.
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LFF,
I hope you are soon feeling better. That's both upsetting and scary. I hope they can get you on a more even keel with your blood.
Dee,
Great news about the brain scan. Congrats. And congrats on switching docs -- it sounds like it was the right thing to do.
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LFF- Gentle hugs to you. Prayers.
Alabama- Woohoo on clear brain scan. Sorry you had such a frustrating doc visit. We do not need that. Frustrating.
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LFF
So sorry for the hospital visit. You are going through so much. Silver linings-We are so fortunate to have quick answers to blood tests and quick access to help.
Prayers that this is all temporary and you get well soon.
Dee
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Hello! My doctor told me yesterday that my liver enzemyes are back to normal and that the chemo treatment is working! Prayers are working! Thank you God. I know It is still a long road. But, I love to hear good news. Prayers for all of you and your daily journey!
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Kimintx
Awesome news!! Are you on carboplatin/taxol now? we live good reports.
Dee0 -
Dee, happy to hear about your scan. Hope you sort out the bladder issues - so painful. I'm on prophylactic antibiotics for uti. Taking them 3 times a week.
Kimintx, that's a really good sign! When do you scan next?0 -
Kimintx...AWESOME!!!!! WHOOO HOOO !!!!! Are you ER+? How come they went straight to chemo and not Ibrance/Endocrine therapy?
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kimintx - always awesome to hear good news!!
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Cross posting with Ibrance/ liver mets/clinical trials thread:
For anyone who might be interested in immunotherapy, I'm passing along info about the Cancer Research Institute's virtual patient program on immunotherapy on Oct 2-3. I attended a live version of this last year, and it was EXCELLENT. Also, they have a company with which they are affiliated that will match you with immunotherapy trials. This is also extraordinarily useful.
Their website is: cancer research.org and the info is there.
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Thanks Bev!!! Well I just registered..and it said I do not match to any trials
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Thank you Bev! That sounds good.0
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Thank you, Bev, for the CRI virtual conf. info! I registered.
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Thanks BevJen. I saw one for Sept 9 and another for Nov 4 , am I in thr correct area?
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BevJen – Thanks for the heads up for the immunotherapy program! I really wanted to attend it last year. I'm glad that your liver lesion that was ablated over a year ago is still showing increasing necrosis. Of course, we'd rather see it completely dead. I'll try to moderate my expectations at the first scan. I do hope to have a second lesion treated in the right lobe with microwave ablation. Hopefully I can make that happen.
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BlueGirl,
Here is the registration link: it's for October 2/3 -- they also run other programs, so I'm guessing that's what you are seeing.
https://www.cancerresearch.org/virtual-immunothera...
Theresa,
Hmmm -- you raise a good point that I hadn't even thought of -- my IR always refers to my ablated lesion as "looking appropriately treated" but you are right -- why isn't it completely "dead" on my reports? A question for my next IR visit, which should take place in late September.
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LFF, I'm struggling with anemia too. It resolves with transfusions, but how long can we keep that up? The upside is that after a transfusion everyone asks if I've had a facial because I have color back in my face. I'm lucky I don't need steroids now, they have been a lifesaver when I've needed them but I puff up like a blowfish and crave sugar.
Besides the anemia I am doing well on Olaparib (Lynparza, PARP inhibitor). My two years of hypercalcemia resolved almost overnight and my liver enzymes and kidneys have also stabilized. They like a break from chemo. I never get a scan until we've tried a new treatment for 3 months.
Trying to read up on tumor flares. They explain my period of fever spikes and also the hypercalcemia. They seem to be both dangerous and potentially a good sign? Anyhow I am grateful that period's over.
Happy sunday everyone /arolsson (Amy)
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BevJen, I'll also ask my IR what should expect to see from the ablated tumor over time. Do you have periodic liver MRIs? I have CT scans and brain MRIs every 6 weeks for the DESTINY04 trial. I have not had a liver MRI in a long time.
Arolsson, I'm sorry that you are dealing with anemia, but I'm glad that you are still on Olaparib. I was on Talzenna (PARP inhibitor) for a year and it was so much easier than chemo. It was one of my favorite treatments, if a treatment can be a favorite. Lol! I'm so disappointed that the Olaparib trial in patients with BRACA-like mutations did not show better resultsin patients. I was so hoping that PARP inhibitors would be an option for many more patients with genetic DNA-repair mutations. I'm on the DESTINY04 trial of Enhertu for HER2-low patients now and praying that Enhertu will be effective for HER2-low patients and available to many more patients!
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Theresa,
I have MRIs of my liver/abdomen every three months. I also see the IR after that, separate and apart from my MO (they are both at Hopkins, so that makes it easier for me). In June, my last appointment with the IR, I honestly think he was trying to kick me off of his service, since nothing much has been going on. But he does the orders on the liver MRIs, and so I don't want to stop doing that at all bc it gives a much clearer picture of the liver, from what he says, than any other imaging modality. My next one is next Friday, September 5. Honestly, I think my MO actually prefers those, too, but for some reason, she orders CT scans instead.
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Bev...my cryoblated tumors on the first few PET's showed even what looked like UPTAKE...but my IR assured me they were dead...and sure enough now on my last PET (I had the cryo in Oct 2019) now 10months later they look "dead"
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Yeah, I"m not really worried about it, but my IR has never used the word "dead." On my CTs, there is a slight bit of signal intensity around the rim, but the report always says all normal, nothing to see here -- never used the word "dead" though. I will ask next appointment and see what he says.
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The people at my cancer center that read it..never use "dead" either..but I personally asked my IR Dr. G. that last time we spoke and he said yes.
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Thank you BevJen for the link
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Hi everyone! I'm newly dx'd and still trying to wrap my head around it. You are all so caring and supportive to each other and you have so much information and experience to share. I think I found a good place!
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Hi SeeQ, welcome. Sorry you find yourself here. How are you, physically and emotionally? It's tough but it does weirdly get a bit easier as time goes by.0
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SeeQ, Welcome to this site although I am sorry you have to be here. You are right this is a good place as everyone here is friendly and accepting. Ask any question you need.
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Welcome SeeQ. I hope you are doing ok. We are all in this together. Lots of experience and advice shared freely on this thread. Feel free to ask away....
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Welcome SeeQ so sorry you are going through this but you are in a great place here with lots of caring women!
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