How are people with liver mets doing?
Comments
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Theresa, Thank goodness your IR was persistent and that your procedure is back on schedule. You certainly didn’t need or deserve all that drama. I will be thinking of you tomorrow.
Hugs and prayers from, Lynne
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Sandi...thank you so much for thinking of me... ya know...I don't even know anymore...lol. My liver was hurting on and off since I started...but recently its been feeling a little better...like not happening as often...but my bone mets definitely have been feeling more active... so I really don't know....but since (as you all know) I haven't had any treatment work yet (well not for more than 3 months,)... I really kind of hope this is working.
I will say this...I am concerned at how gassy I have been..and bloating especially after eating...I am hoping its just the chemo....and trying NOT to let my mind go to "a tumor in duct or in pancreas etc"..... 
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Theresa, glad the procedure got approved. If tumors are stable but not shrinking, then ablation would be the way to go. Good luck with tomorrow’s ablation.
Nicole, a lot of the meds we take can mess up our digestive system. My GI doctor recommended Miralax every other day for constipation. I had bowel obstruction due to extreme constipation and ended up in ER. Of course this is an extreme case, but after that I became more vigilant about going regularly, and Miralax helps.
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BevJen, glad the u/s guided procedure worked for you and I hope you're starting to feel better.
50sgirl and Elderberry, great news on tour results. Elderberry, it was nice for your doc to call you quickly with the good results
Moth, thinking good thoughts for your scans on Friday.
Candy 678, sorry, no help here on the terminology. It's like to say try not to worry too much, but I think that's akin to saying try not to breathe. So, sending calm and peaceful thoughts your way.
Is been a busy couple of days on our board (in a good way! )
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Thank you everyone for the congratulations! Scans are the hardest to wait for
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This has been a busy thread the last couple of days.
I'm doing the count down for tomorrow. No carbs today trying to keep my blood sugar low enough. I hate no carbs days. It makes me CRANKY. At least I can have some coffee tomorrow morning if I drink it early enough. It's going to be a long day.
Glad the Microwave Ablations are over. 💞
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Grannax..that will be me Thursday... scans Friday
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Grannax and Nicole, Thinking of you with your upcoming scans. 🤞🤞
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Nicole- to be honest my profile doesn't mention much, because I don't understand how to fill in the forms..
I have been on Herceptin for about 2 years with no side effects. My tumors are a little tricky (aren't they all) and I am by my best guess weak HER2+. Some biopsies come out negative, some positive. So they do keep the Herceptin in for good measure. We used to add Perjeta but not anymore, not sure why but it seems to produce worse side effects.
Have been on (since recurrence): Paxlitaxel, NAB-Pax, Xeloda, TDM1, Doxil, Halaven--what am I forgetting?
Still not classified as triple negative but getting the parp inhibitor anyway. Hope I can show some results.
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Grannax, I will be thinking of you tomorrow and sending good thoughts your way.
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Grannax, wishing you good scans tomorrow and for Nicole on Friday.
Nicole, chiming in late about liver/bone mets. My MO is more concerned about liver mets, too, as am I. Bone mets have been NED and I've been on Xgeva + Letrozole for 3 yrs. I'm now on Piqray for liver and she switched me to Faslodex for hormones I think because it's standard with the other or approved from the trial.
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this has been a busy site. thinking of those with scans coming up and elated for those with good results.
I’m catching up from the hospital again as I’m waiting for 3 units of blood. My hemoglobin was 5.4 and my hematocrit is at 20. Ugh. At least I’ll feel better soon.
Got my infusion of kadcyla today so feeling that as well. Some days just suck. I know I’ll Feelmuch better in a few.
Oh- good news is my brain ZmRI was best it had been in over a year. Yay! New med working. Only spots radiologist commented on were in previously treated areas with radiation. My radiation oncologist said it was scar tissue. So there is that.
CT scan neck down on Sunday.Take care everyone.
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LFF,
Hope the transfusion goes well and that you soon feel better. Good news on your brain scan as well -- that's terrific. Good luck on the CT on Sunday -- hope you get a good report.
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LFF, you always seem so upbeat..even when dealing with an extreme low hemoglobin requiring hospitalization. I admire you.
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JFL, just thinking of you. I hope this message finds you enjoying your day with your son, your DH and your visiting mom
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LeftFoot, You have so much going on! I hope you are out of the hospital soon. The blood transfusions should help you feel better and stronger. WOOHOO for the brain scan results. I am sending you good vibes for Sunday’s scans.
Nicole, You will be on my mind tomorrow as you have scans. As far as the liver and bone mets are concerned, the liver mets seem to be more of a focus for my MO.
Hugs and prayers from, Lynne
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LFF...awesome for clear scan!!!
Bliss... I am concerned about my cancer now in C7..... I will be re-starting Zometa...and I really don't want to..... I am also debating radiation to there...I have had 2 consults about it...and I am still torn. The side effects can be trouble swallowing and other issues. I posted on FB about it...people that have radiated there said they were bad for a few weeks but then it got better. I just don't know..because if I leave it and it gets worse I risk fracture and paralysis....if I do it ...I risk permanent side effects as well as temporary....
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LFF Great news on brain scan. Now if they could just get your anemia under control.
I made it through yesterday, now I'm counting down hours till noon scan. 💞
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Pocket duty for Grannax, Nicole, LFF, Moth.
Nicole-My previous MO said the liver mets is more concerning than the bone mets (concern of liver failure). I have not discussed with new MO yet. I have a bone met on C2 (diagnosed on baseline PET at diagnosis). No one has ever voiced concern over the location of that met. I have not had any trouble with it, so far. I know the unknown is scary-- paralysis is a big deal. But weigh the risks/benefits of zapping it. Swallowing problems or other possible permanent issues would not be good either. And you may never have a fracture there. So do you treat with radiation on a what-if scenario. Just my opinion.
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Grannax - im in your pocket!!!!!
Candy...I agree thats why I haven't touched it
. but if it has grown considerably on this scan tomorrow since last scan July....I am probably going to consider zapping it 0 -
Grannax,
Good luck on your scan today! Thinking good thoughts for you!
Nicole,
Good luck on your scans tomorrow. I hope you show signs of responding to your current drug regimen.
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PS and good luck to Moth and LFF!
Candy, thanks for always reminding us who has what going on -- that's a great service to help us support each other through all of this baloney.
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Moth, I am sorry that I had forgotten about your scans. (Thank you, Candy.) You will definitely be in my thoughts tomorrow as you have your scans. I hope you don’t have to wait to long for results.
Hugs and prayers from, Lynne
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Okay, guys, just had to share because this made my day for some odd reason --
the report of my ablation procedure from Monday just appeared on my patient portal. I know this isn't really true, because I have more mets than this, but it was a bright light in my day -- the IR indicated the following in the procedure report:
Therapeutic intent (QCDR): Curative
From his iips to God's ears, I hope! We have to take a little bit of joy where we can get it.
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Good luck Moth, LFF, Grannax and Nicole! In my prayers and in your pockets.
Thank you Candy for being our calendar! The giving and receiving if support is so vital for us all!
Nicole - would xgeva be any better for you than zometa? I have been on xgeva since April with noissues but understand you have underlying concerns. Radiation might be best alternative if needed. Let’s hope the meds are working!
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LFF, great news about brain scan! Hope your anemia gets under control with blood transfusion.
BevJen, Rejoice ! I hope this ablation was indeed curative.
I am waiting for my pathology report , curious to see if my tumor is still hormone positive and Her2 negative. My MO said she will send the sample for genetic profiling too . MSK has their own genetic profiling tool called IMPACT, which is equivalent to Foundation one.
Nicole, I understand it is a hard choice whether to radiate or not - my first Mets diagnosis was the tumor on C7 in March 2013. The radiation oncologist did cyberknife radiation to that spot and I had very minimal side effects. So far that spot is sclerotic. Would this be an option for you? With Cyberknife, the radiation is pinpoint to the diseased bone so the other areas are not affected. Maybe you could ask your RO about this?
All the best to everyone getting scans today and tomorrow.
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Theresa, did you have the microwave ablation today? Hope everything went well. Thinking about you
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S3K5,
How are you feeling after your ablation? On the mend? I stupidly took oxy that was prescribed for me and it made me terribly nauseous. Some people never learn -- I just cannot tolerate any kind of heavy duty pain killers -- oxy, Percocet, none of them. Yesterday was pretty bad bc I had taken a pill just before bedtime the night before -- work up with dry mouth and nausea, and drank water all day to flush it out of my system -- finally by late day I felt a bit bitter. Would rather deal with the dull pain that's left than the meds.
Theresa,
Yes, how did your microwave ablation go? Hope all went well.
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Hope... I am allergic to Xgeva..HIVES ...and if you research the risk of Osteonecrosis is even higher on Xgeva than Zometa
S3K5 my cancer at C7 ...is a lot ...first..the shape of the bone that it is in looks exactly like a wish bone (do you know what I mean?? Well that whole "wish bone" was shaded light gray/white..thats mets... so I don't know if thats like what you had there?? Also they would do SBRT which is I believe cyberknife...if I am remembering correctly. here is what the report said:
. There is an enhancing hyperintense lesion within the lamina and spinous
processes C7 most compatible with metastatic disease in the breast cancer
setting.
2. No additional lesions are seen within the osseous structures of the
cervical and thoracic spine.
3. There is a stable pattern of cervical spondylosis.0 -
Is the carb restriction for an abdominal CT scan? I have my first one next week.
Yesterday I had a Brain MRI to rule out anything there. Please send prayers it's clear. To have the Liver mets announced in Sept and the bone mets in Oct, I feel I'm still wrapping my head around everything. I've had a few swollen lymph nodes on my neck since July and my primary dr said to wait 4-6 weeks to see if they clear but I was in the hospital 2 times in august ( they had gotten pretty big by then) for breathing problems and had several drs feel them. Even my MO wasn't worried because they were smooth & rubbery. Even though 2 of them are super small, one says bigger and when I asked my MO yesterday she said she believes I have cancer in my lymph nodes and it's very common in Stage IV. IS THIS TRUE? She doesn't feel the need to biopsy since it doesn't change our course of action.
I did get some good news that my AST that was 195 on 9/1 is down to 43! My enlarged liver had gone down in size and my TM is back down to a few points below baseline. Now if my brain scan comes back clear I feel I can exhale a bit this week!
Leftfoot--good luck with your transfusion. Awesome about your brain scan. what's the 'z' in ZmRI?
BevJen--take that message as a sign things will be good for awhile!!
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