How are people with liver mets doing?
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My goodness, I hope everyone is getting on okay since the last updates.
My emergency CT came back with good results thank goodness. At my last scan, it only picked up my largest tumour and saw nothing else, which is why I've been asking for concurrent MRI's because it is more sensitive and specific for me ( I.e. Last ct showed one met, MRI showed 5) . Normally, this larger met kind blends in with everything and it's hard to measure. It started at 4 cm, then 2, then maybe 1.5 they said. As of my scan, they can see it even less which suggests further regression (Possibly). My Mri is in 2 weeks so hopefully it'll confirm regression and stability. I was told to stay off the Tamoxifen until then and they will repeat the bloodwork to see if the AST has gone down and if I'm feeling any better. I know it's for the best so we don't prolong this mystery of why I'm feeling this abdominal pressure and general grossness, but it feels wrong to do nothing. My MO tried to assure me that prognostically, being off the tamoxifen for 2-3 weeks is not going to have a huge impact progression wise, but it feels like I'm leaving myself open to attack, ya know? Like opening a door saying " Now's your chance !" I know she would never steer me wrong , and I know that not having ovaries is helpful in all this. But still. Feels weird.
Going to try and be positive that the news currently is good. I know how fast that can all change.
Much love to everyone who is struggling today
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BLMike, I'm so sorry to hear about Polly. In reading your posts it was always clear how much you cared for her, every step of the way. You are in my prayers.
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B-A-P, take the good news & enjoy it! I hope the adbo weirdness turns out to just be mystery nothing!
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I find it so odd that so many of us have mets on our c-spine. It’s supposed to be relatively rare but…. I’m presently trying to convince myself that my neck discomfort and right sided facial numbness is due to degenerative changes which have been demonstrated by CT. Doesn’t help that I am currently off treatment and I have mets on every vertebrae.
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Moth- Absolutely! I am super happy that I'm at least stable if not better. I'm just a nervous Nelly being on a med break. It's really hard to sit and wait even if it is for the best.
I've never hoped more for a run of the mill GI issue lol
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Nicole update. Small correction, fracture is at C7 like previously said, mistake was made in relaying to her about it being at C2/being new. Brain MRI came back clear (Woo hoo!!). She wanted me to report she will be getting rads to C7. She's experiencing a lot of pain at T3 as well. She's currently still in hospital on oxy for pain. Praying for our girl to be able to go home soon and the drs can work their magic to make than happen sooner than soon. We are all behind you Nicole!
*cross posting bone mets*
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grannax they made mistake in report nothing at C2 just fracture at C7 they will probably radiate C7 and T3....I guess the Y90 will have to be pushed out?
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Mike - I am sad to hear about Polly. You have been an inspirational husband and supporter. Thanks for joining us on our threads - you and Polly have blessed us all by being a part of our community. You have cared for all of us and I hope you can take the time to take care of yourself. You are in our thoughts and prayers.
Oh no Nicole! You said 'just a fracture' - you are one tough lady! I am so sorry to hear about this. It sounds like they will come up with a plan right away.
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Uhh, dear Nicole, it is so good to hear from you! Brain MRI clear, woohoo. Let's fix the spine, and then kill off suckers in the liver and then... big party!
Dear BAP, wow, big party on your island this weekend? Don't worry too much about Tamoxifen, its half-life is very long (please check the graph below), so you are well protected after last dose for 3 to 5 weeks. Tamoxifen is an old drug, so serum concentrations were analyzed are well known for past 40 years, and your MO is absolutely right - not a big deal to get a short break and then check if it influences your AST. I personally believe tamoxifen might interfere with your metabolism (estrogen suppression in young age), and maybe if your disease regresses, you could go for a smaller dose?
Saulius
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Salius,
Once again, you've been incredibly helpful. This is very comforting. I have been on Tamoxifen for 7 weeks this time around so I figured that it would be out of my system quicker, than perhaps if I've been on it for months or more. I do lack ovaries so I do feel a sense of "At least there's that on my side" Prior to diagnosis, I was very estrogen dominant. I think I may bring up maybe moving down to 10mg if it is the cause of my symptoms, rather than eliminating it completely as a treatment all together. Before trying another AI, we discussed trying to get far away from my last Letrozole treatment as possible ( Since it failed).
MBC is such a roller coaster. I tolerated tamoxifen the first time around so well it felt like I was on nothing, so for it to be so different now, is wild.
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BAP, I think 7 weeks is enough (https://acsjournals.onlinelibrary.wiley.com/doi/pdf/10.1002/1097-0142(19810815)48:4<876::AID-CNCR2820480403>3.0.CO;2-Q ). Saulius
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B-A-P & Nicole: so happy to hear about the scans, that’s great!
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Thanks Lafsunshine! It's certainly positive. Hoping the MRI in a few weeks will confirm these findings, but the decent CT Scan certainly tampers down the anxiety until then
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Kabuki,
Got way behind on this thread. So wonderful that it is so active.
I see Hope Rugo at UCSF. She is amazing. As Cure-ious once said, "She's the best breast oncologist on the planet". I have also heard many positive things about Melisko.
Hope you are able to schedule your second opinion soon.
Hugs, Susan
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BLMike, I am so sorry to hear about your dear Polly. I cry to think of you guys there at the hospital dealing with pain. You were with her, which is so much. What a loving husband you were. As you say, she is free from pain now. May the good memories of your life together crowd out the memories of hard times. What a loving husband you were to her.
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Nicole, I am adding my good wishes for a speedy resolution that gets you back on your feet.
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Thank you so much ladies and thank you SP...
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Thank everyone for your kind words. Although the last few days have been difficult (as will the next few), I recognize I'll have good days and bad days from many weeks/months/years.
You all have no idea how helpful and what an inspiration you were to Polly and me. It was so helpful to hear the the successes (and even the failures) as each of you pursued your own MBC journey. Having said that, now it's time for me to sign off and wish each of you peace and pain-free days. Thanks again for allowing me to participate.
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BLMike, I’m so sorry to learn that your wife, Polly, passed away. You have my deepest condolences.
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Nicole, I don’t remember the date the y90 was scheduled. I guess each area in your spine will require ten days of rads. I wonder if both areas can be done simultaneously.
I guess it will be a first things first for you. I think reducing your pain would be first.
I got brave enough to message my MO about the CT, Dee. I sent it on my portal on Tuesday and haven’t heard back yet. Maybe tomorrow.
I’m enjoying my break and looking forward to two trips in September. One is a family vacation in a beautiful cabin in SE Oklahoma. The next one is a Cancer Retreat near Galveston, Tx.
Last weekend my granddaughter taught me how to ice cupcakes with a piping tip. Never had done that. I’ll post a pic
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I love that photo and now I want a cupcake!
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grannax you look so happy and beautiful. Thanks for the update!
Dee
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I just had my scans and it says moderate diffuse ascites which is not hypermetabolic. Stable appearance of the omentum may represent peritoneal metasis however there is no significant uptake in these regions accounting for what is believed to be bowel activity.
My MO says I have cancer on the omentum. Has anyone had this and recovered. She said the only option is to try another chemo. But it probably means my liver is not working.
Thanks
Julie
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Grannax - Love the photo! Your granddaughter is adorable. I'm glad that you are feeling well and have trips to look forward to!! Praying that the CT results are ok!
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Is there a doxil thread?
Thanks
Julie
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Jjzn, there's a weekly doxorubicin thread here https://community.breastcancer.org/forum/8/topics/...
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Kattysmith, luckily I froze some. Wish I could mail a couple to you. My DIL and my granddaughter own a Baking company. It’s brand new and they don’t mail their cakes, etc yet. As soon as they do, I’ll put the name here. Their cakes are unbelievably beautiful and so good. The icing is their Secret Recipe. It’s delish.
Dee and Theresa, Thank you. I’m always happier when I’m with my grandchildren.
Jjzn, I don’t know anything about MBC of the omentum. Do you know if your labs show increase in liver numbers? Those will usually show whether or not your liver is functioning. I’m so sorry you got this confusing news. I hope someone here will give you the information you need
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Grannax2
Thank you.
AST is 58 up from 46 last week.
ALT is 23
Luckily there is not enough acitities to drain. So I take that as good?
Julie
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Moth, thanks for the link to the doxil thread; I just had my first doxil infusion 2 weeks ago. I couldn't find one using the search function, since I was looking under doxil instead of doxorubicin.
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