How are people with liver mets doing?
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Has anyone heard from Sheltland Pony?? did something happen and I didn't know about it?
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After 3 rounds on Trodlevy a CT scan showed I have progression in my liver [ lung and spine are stable, breast improving]. I will continue on chemo, but after an MRI I may be getting liver ablation. Has anyone here been through this ? I dont know much about it and want to avoid dr google. Thanks for any information.
Have your best weekend.
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Denny, I'm not native in English.. is ablation same as cyberknife? If yes, my mum went through it early in March. She has a lot of small lesions in her liver that are stable due to Ibrance and Letrazole but 2 biggest kept growing so she had cyberknife done.
3 months after treatment she had an MRI and there was a 3cm decrease and the radiologist said it shows less biological activity so they expect more shrinkage.
The procedure itself was not painful at all and the only 2 side effects she did have were a little burnt skin above the radiated spot (weird) and a lot of GERD followed by a stomachache.
Husband, I'm so very happy for you both!
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daughterof, thanks for your input. It sounds positive. I hope I will get more information when I next have my pre chemo assessment. It's the fear of the unknown and going on the internet is scary.
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Denny, I had microwave ablation about a year and a half ago. It was an outpatient procedure with full anesthesia. I had some light, dull pain for a few days after but nothing too bad. There were also some odd twinges a few weeks later which didn’t last long. The ablation got me to NEAD, which lasted close to a year when multiple new liver mets showed up. It turns out I had flipped to triple negative. I later found out that my single bone met (more now) stayed ER+. Good luck to you!
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That is great news Husband. My wife has taken a break from enobosarm. Her tumors progressed on it combined with Xeloda, so she is now on Enhertu with one cycle complete. While it ddoes not appear enobosarm was effective to stall progression, she had no side effects, and got pretty darn buff on it. So far on Enhertu, so is tolerating it well also. five days after her first infusion we drive from Arizona to Colorado and she knocked out a 5 mile hike at 11,000 feet!
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rosie24 thanks for your response, really useful. I flipped to triple negative this year, after 8 years . The ablation got you an extra year nead , I would like that for my liver . The side effects appear to be tolerable. If ablation is offered I think I will go ahead.
spouseforlife, I hope your wife gets a good result from the Enhurtu and continues to be able to do 5 mile hikes for a long time.
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Did anyone get sudden sharp right abdominal pain with liver mets? Mum's supposed to be stable disease but today she's in a lot of pain and I don't know how to help.
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Has anyone heard from Bev or Shetland?? I messaged Bev on here and texted her...no reply
. I know she was getting ready to start Enhertu...and reluctant to do so.. If anyone has heard from them please let me know. Thanks.0 -
I have some sad news....this is not easy for me. Bev's husband called me. She had pain last week and was sounding confused. They went to hospital and she has not left she has brain mets and mets in neck/spine and ascites pretty bad. They have decided to stop all treatment.
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Nicole, that is truly sad news. I always looked forward to reading her posts.
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Oh that is so sad to read. I hope her final days are as pain-free as possible. She was one of the regulars around here and always thought of her and Pony as a 1-2 combo. Now they both may be gone
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So sad. Another sister of ours being taken with this horrid disease. May she have comfort in her final days. Thanks Nicole for keeping us updated. I hope her husband lets us know when she passes.
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I remember when I first came to the Stage IV group here..Bev reached out to me as she was in MD and I was going to be moving to VA...we spoke so much and became very close. This is really hard. I do know that her son and daughter and grandkids are close by her and her husband. He also said she is not in any pain now with the meds.
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That is so sad.
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I’m so sorry to hear that BevJen has reached the point of stopping treatment. I felt a connection with her too, as we exchanged several PMs about discussions we were having on various threads. I think of her as a member of BCO who truly wants/wanted to help others here in any way she could. I too hope her remaining time is pain free and spent with her family.
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These last few months have been hard. So many of the lovely supportive, regular posters have stopped getting any further treatment. I know it will happen to me eventually , but most of the time I stick my head in the sand and pretend it wont. Every death makes me angry and sad.
I hope BevJen continues to be pain free.
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NicoleRod— thank you for letting us know about BevJen.
I learned so much from her. She gave me strength and hope to see that MBC wasn’t an instant death sentence. She showed how to be strong and fight.
I hope via our prayers we can blanket her with the same kind of warmth she passed out. Prayers for peace and painless days. Prayer for her family. Prayers to those here who knew here
Cancer sucks.
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Thank you Nicole for letting us know about BevJen. I’m saddened to hear this news. She has been such an active, valuable member of this forum who has helped so many. My thoughts and prayers are with her.
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I'm currently awaiting to hear if I'm eligible for the Artest trial which is randomized. I really hope if I get in I get the Enobosarm since my first tissue test said I was 95% positive for AR. The trial is doing their test now. Waiting on that. I progressed in my liver and I'm really scared. I don't like not being on any meds but they said it's better that I get the toxins from Abraxane out of my system anyway.
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I’m so sorry to hear about BevJen too. She is a staple here.
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Oh, our dear BevJen... nooo...
// We love you Bev, you are in our hearts and minds...Saulius
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I am at chemo my blood work showed my bilirubin doubled ...I'm so upset. It hasn't been this high in over 14 months..this for me usually means more tumors in liver....I thought maybe it could be the low dose naltrexone or the modified citrus pectin I started but both of those have no sign they raise liver enzymes and plus when liver numbers go higher from supplements it's the ALT and AST that do too and those are lower....I don't want to ask my MO to recheck it Monday bc she might cancel my ablation for the 26th if I do...but it will be checked next Thursday bc I have chemo again. I'm so crushed.
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Nicole, when was the last time you had a scan? Did it show any signs of blockage of the bile duct? Can it confirm the presence or absence of gall stones that might cause a blockage? How high is the elevation above normal?
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Husband...I have no pain (if there is a blockage) I scanned June 22nd they did mention seeing tiny gall stone but bile duct was fine and not dialated and I have no pain. I'm right now at the high end limit of 1.2 and I am 1.2 but I doubled from 2 weeks ago it's was 0,6
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Nicole,
So sad about Bev. Thanks for reaching out to her and letting us know.
One of the hardest things about this board is that we have no way of contacting people who have stopped posting. We don't know if they died or if they are doing so well that they no longer feel the need to post.
Have you heard anything about AlabamaDee?
Hugs, Susan
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I am so saddened to hear about BevJen. We seem to be losing so many in such a short time. I will miss her posts. Like susaninsf, I always hope the lack of posts is a faint hope that that person is out living a good life, feeling good, good scans. Unfortunately, that is seldom true. I just want to HOPE. So badly.
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I am also saddened and upset to hear about BevJen. I don’t post often these days, but I do read messages. BevJen has always been so willing to lend support to everyone in need. She obviously has a big heart. I hope she has some peaceful, pain-free days ahead. My best wishes go out to her and her family.
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Nicole, always wanting to be optimistic, I would ask your Doctor if this being at the high range of normal is of any concern. If it's a trend, it's certainly concerning. Perhaps its just going to remain at the top end of normal, or something in your treatment has elevated it to this point. Or something previously lowered it?
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I am going to stop the MCP and the LDN for this week only, and see if the level goes down at chemo Thursday..IF it does go down I will restart them bc then I know its just them...but supposably they are both anti inflammatories and yet..I have inflammation bad..my nostrils are swollen just like they use to get when I was first diganosed
. I would like to believe its die off..but ...every time a treatment worked for me and shrunk my cancer I never had inflammation or pain or anything so I kind of don't buy into that , for me anyway. If the bilirubin GOD FORBID goes even higher I am going to restart them and then AFTER my ablation on the 26th I will take to my MO...I just want to get that done... I am wondering what my IR will do if she gets in there and sees new tumors... . I hope she wont stop bc of that... The ONLY good thing that MIGHT come out of me having a new tumor is that it might be able to get me into the Car T- Therapy trial. 0
