How are people with liver mets doing?
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Bliss, thinking of you! livers are pretty resilient and can recover so there's always still hope. Thank you for sharing your news with us & letting us virtually sit with you.
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Dear Bliss,
I don’t usually post. I just want you to know that I am praying for you. I believe, as does Moth, that our livers have great regenerative powers. I pray that healing force kicks in. YourMets sis, Kate from Alabama
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Bliss58, I am praying for you and that the treatment starts to turn things around. We are with you, appreciate you posting and surround you with love.
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So on Friday I started having short stabbing occasional pain in my URQ closer to midline below the ribs. It intensified yesterday. Today it is mild, more constant and tender to my pressing on it.
I’m hoping it is just my gallbladder and not something with the cancer in the liver. I have had a lot of gallstones for years.
My routine trial check up is Wednesday. I will send a note to my trial nurse, but wait for the appointment unless the pain becomes worse.
It is hard not to worry. My next scan is June 14. I have done well so far on this trial. Just wanted to tell someone my concerns.
Dee
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I hear you Dee about the worrying... I had URQ pain starting mid-December, intensifying over a couple of weeks prior to the scan showing the cancer had spread to my liver. My MO was surprised I had pain as typically there is nothing until your liver is full of cancer. However, I have one lesion that is close to the surface and is likely causing pressure on the capsule which does have nerve endings. The pain subsided after I started on Xeloda but unfortunately it has reappeared over the last week or so. It's not as intense but "there". I scan tomorrow after six cycles of Xeloda and can't help but worry that Madame X is failing...
Let's hope it turns out that we are both worrying needlessly! Hugs. Pat
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Hi Dee, oh the stress of all this adds up doesn't it? Every pain and ache has legitimate reason for worrying us. I hope it just goes away and if not, it turns out to be the gallbladder being jealous of all the attention your liver is getting. It *sounds* more like gallstones (fairly sudden onset and episodic acuity)... an ultrasound would be able to give a quick peek so maybe if it doesn't ease up, ask for that stat?
hugs
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Pat- hugs to you. I care. Hoping Madame X is working and the pain is from shrinkage away from the capsule. “In your pocket” for scans
This is a new pain for me. I have had mild liver pain before, but this is different. Grrr Always something.
Tomorrow is our 36th wedding anniversary. Hubby and I plan to celebrate.
Dee
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Dee,
I hope this new pain is nothing, or certainly nothing related to your BC.
And congrats on your 36th anniversary! Terrific.
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Thanks Dee. Wishing you and your hubby a fabulous anniversary. Enjoy
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Bliss, I’ve been thinking about you lately as it’s been a few months since I last saw you on the boards in the Xeloda thread. I’m sorry to learn of your latest developments. We are all here for you, no matter what, bring it on. The forum exists for us to support one another. You have such a sweet spirit and have always been a welcoming support to others here. I will be thinking of you and keeping you lifted in prayer.
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Just picked up Bliss’ post. I hope you’re still checking in here? Know that you are in our thoughts and I especially appreciate the support you’ve given me personally. I want to say hang in there too...but you’ll know how you are. I do hope whatever happens they can get you to place you want to be. X
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Sadie and Dee, I'm thinking of you both and hoping for the very best results!
Happy Anniversary to you and your hubby, Dee!
Moth, your comment about the gallbladder being jealous made me laugh. My scan reports always read "gallbladder is unremarkable"and I always think it must hurt its feelings to hear that- LOL
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Bliss you are in my thoughts!
Dee....share/vent away. Its so hard sitting with thoughts of possible progression especially when we feel pain in certain areas. I just prayed for you and the pain that it is not cancer! I know for the past few days I have had pain burning in my spine where my T3 and C7 is...then yesterday felt a little better...but does make me think the Affinitor is not working..and by the time I scan in late July it will be 3months on the med but if its not working it will be like I have been off meds for 7 MONTHS!!!! (because I was on no meds for 4 months after the Y90) so yea I am scared....but , I am trying to keep the hope that since we just titrated up to the 7.5mg...maybe it will kick in. ((((hugs)))) to you lady!
Sadie and Dee...I did have pain in my liver from tumor but not bc there was a lot ...bc of where it was...near colon wall so my nagging pain would be right below my bottom rib on the side of my body. Sadie you are right when it is near the capsule ppl can feel that pain too. Dee if you do feel pain and if GOD FORBID it is cancer that does not mean its a lot of cancer because you feel it so don't worry about that could just be (like I mentioned and Sadie) location....but I am believing it is NOT cancer!!!
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Hello friends- I'm going to cross post this.
SO . CT scan after 18 treatments of Abraxane = "There is a small focus of decreased attenuation anterior to the IVC on series 6image 20 measuring 1.5 cm which is difficult to perceive. It is mildly regressed in comparison with previous exam." This met started at 4 cm, So this is great ! MRi to compare ( but first one since recurrence so no baseline ) as well did show the other small mets that were seen on my previous CT 12 weeks ago. It said they could see 4 spots that were rim enhancing only and between 4-6 mm only. These could not be seen on the CT. Oncologist said that it's a beautiful response and that those spots could be dead or dying in the centres. This is similar to what happened my first time around where the MRI showed a lit up rim but faded centre. Corresponding Pet scan showed no activity.. So I'm hoping that this is the case here.
I was a little bummed only because my half way scan was just so significantly good, I thought surely 9 more treatments would totally obliterate it. BUT it IS good news. Right now the plan is to stop Abraxane , start tamoxifen again and rescan in 10-12 weeks. She really felt like this was the best we were going to get from this drug at this point in time and that it would be nice to have a chemo free summer.. and just hope that endocrine therapy keeps things quiet.
My MRI also said there is some pseudocirrosis on the go which she didn't even mention at all ( I read it on my report) I know it can be from treatment/ mets , but I mean from what I have read, it's not necessarily a good thing. But I don't know enough about it to have a full idea of what I'm looking at here. Has anyone here dealt with that?
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Sounds like great news BAP! Woo hoo! And yes, a chemo free summer would be awesome. I may join you as my MO only wanted to do six cycles of Xeloda regardless. Waiting for scan results to see what’s next.
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My wife has psuedocirrosis. It's stable, because the cause was the tumors that were destroyed left behind structural changes that look like cirrosis. It's unlikely to get worse as the cause is known and isn't true cirrosis caused by some ongoing condition like alcoholism or viral disease that keeps damaging the liver.
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Sadieservant, why only six cycles of Xeloda? My onc said we may stop after 6 cycles and see what happens. I had/have ER+ bone mets. I recently had ER- mets to ovaries and started Xeloda. I don't have liver mets so I hope it's OK to ask you here.
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thanks Husband ,
from what I could see from Google it looked ominous but the report said even with it , the portal vein is still open and not blocked so I imagine this is as good as it gets if I have to deal with that.
dutchiris-I’m also stopping chemo at the moment. I had six cycles =18 treatments . Not sure about Sadie, but they figure attack until under control and where I am really estrogen positive , endocrine therapy may keep it stable while my body recovers from chemo. We know that chemo is toxic so the more you do the more side effects accumulate and QOL affected. By stopping for a bit , it allows the body to recover. Not only that , we want me in tip top shape if I have to go back on toxic treatment which may be more harsh. My onc said , at this point , there doesn’t seem to be any benefit to staying on it currently because eventually I’ll gain resistance and progress anyway. She thinks this chemo has done as much as it could so to speak and that she doesn’t feel it’ll shrink any further. I’m hoping I just have the one met left and that the small ones are inactive. It’s a scary position to be in but I know that my response was really good.
I don’t know if this helps explain it but that’s our plan right now. In 10-12 weeks of my scan is progressing then I imagine next steps will occur.0 -
BAP ...what does rim enhancement mean on your MRI?
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Sandi,
It’s just that the contrast picks up the spot and that there’s is vascularization there. But it said it’s consistent with metastasis. Oncologist said that they could be dying in the centers but it remains to be seen.
I’m just going on my past experience where my original met was 5mm, and not picked up on Ct. It was picked up on pet and mri. When I had my half way scans that time around, the mri showed it was bright on the outside and faded on the inside. Pet scan right after showed it wasn’t active anymore and so we determined it was likely necrotic and dead.
So maybe I’m clinging on to some hope that the ones seen on My latest mri are small and dead. We aren’t going to do a pet currently but rescan in 10-12 weeks. the current things seen on mri are not seen on ct except for the 1.5 cm mass that started at 4 cm. Ct said it’s barely perceptible.
Maybe someone else knows more about rim enhancement and can chime in
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Hi Dutchiris.
BAP’s explanation pretty much sums it up I think. My MO told me it would only drag me down and he wants to keep it in reserve as we know I responded. I understand the logic as ideally we can move back to an estrogen based treatment that’s a bit easier on the system. Of course all this can change depending..
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B-A-P. Congrats on the good report and that you are getting a chemo break this summer!! Can't help you with pseudocirrosis.
Update- Had my bloodwork checkup today and ultrasound for the URQ pain. good news that nothing appears to be wrong other than lots of gallstones which I've had for years. No inflammation or bile duct issue or kidney problem. Wish I knew what the pain is 🧐
The great part is the larger liver tumor is still stable (they did not comment on the smaller one) Also, my mag is way up (finally). My local MO suggested changing one bp med from HCTZ to Amiloride and my mag is the best in a year. 🙌🏻
Other bloodwork was OK- WBC, RBC, platelets , ANC all a little low. The trial nurse said that my bone marrow could just be "tired from all the treatments" for MBC I've been on the last 2 years.
I’ve always said I’m an enigma with my cancer journey. My next scan & plan is June 14 and since I had the ultrasound I feel less stress.
Dee
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B-A-P -- Great news on the good scan. Your news is encouraging for us since my wife is also on Abraxane. She's only had 3 treatments so far and is on a 2 week on, 1 week off schedule.
Dee -- Sending good thoughts your way for a good scan and plan on June 14!
Sandieservant -- Hoping for good scan results for you too!
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BAP awesome news!!!!
Dee so happy I knew it was not progression!!! YAY!!!!
So my insurance and express scripts that does my cancer meds...screwed up and now today was a big mess...and I am probably gonna be some days without Affinitor... I spent from 8am to 4pm on the phone with them , my MO office, then Walgreens then back to Express Scripts...major mail order issues and spent 2 hours sobbing from the stress...im going to take a bath...
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thanks everyone !
Thank you for reaffirming that it is good news. Because I became NED the first time around and had such a significant improvement at my halfway scan a few weeks ago, I was just hoping it was all gone. I mean .. the ct can’t even see the little teeny ones that was spotted on mri and they can vaguely see the one remaining. It’s gotta count for something, so I really am trying to be at peace with it.
I know that many don’t respond period so I’m practicing gratitude and will try not to think too much about it in between scans. Gotta live !
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Dear BAP - congratulations! You're fighter!
Dear Nicole, I am sorry for the situation with your insurance. Hope things will be fixed soon. I was thinking also... would you ask someone to prescribe you light antidepressants (I am not saying you are depressed) - they can make life much easier, and when the sun shines, it is easier to fight. You went through so much in past years, and even now being so stressed does not help at all. I wish you to feel better and if help is needed, please do not be afraid to ask for it...
Saulius
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Thanks Saulius...yes I have considered that....
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BAP..thank you for the info. It sounds like you have a good report and continued response to your drug.
Dee..glad you can ease your mind after Ultrasound.
Nicolerod why now the afinitor issue? This is crazy that you have to stop a life saving med due to insurance issue after you have started. Is there a insurance advocate at your MO's office to help? You have had so much to deal with lately. I am sorry you suffer.
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thank you Sandi 😔 today supposedly the MOs office called it in again to express scripts....express scripts is the problem. They say they have the meds and are shipping each time ...but don't ship it..we call everyday this was going on since May24th. Then they said I can fill it at walgreens (really you can't) and that wound up not working but we tried to do that so then express scripts cancelled my supposed order that was already shipping since May 24th...now new script called in today could take a week..2 to get I'm done. Seriously I am burnt out. My spine mets still hurt bad everyday so the afinitor is probably not working anyway....I just sent a message and asked my MO if we should just go back to Eribulin....waiting to hear. Realistically I only have maybe 1 year left anyway...6 treatments in 2 years not many options left. 2022 I will go. ...thats if I even make it till then. Just my opinion. I'm not looking for anyone to debate this with. Just how I felt since day of diagnosis .2022. ..and with the way things are going right now its looking like it's probably gonna come to fruition.
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Nicole. hope the afinitor is shipped overnight. This mTOR inhibitor is supposively good with the FGFR1 amp mutation..well, according to mouse model.
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