How are people with liver mets doing?
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Dear Regina, I wish you strength and want to tell you that we respect every decision of yours. It is a blessing to have you with us. Saulius
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rk2020, Regina- I respect your decision. My prayers are with you. 🙏
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Regina - I am so sorry to hear of further progression. You and I have been in many of the same threads and as others have shared, I also found your posts both supportive and informative. I hope that palliative care can bring you some relief from your pain and more good days than bad and may you be able enjoy the birds and your gardens.
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emac877, candy-678, bsandra, irishlove, exbrnxgrl, divinemrsm, aprilgirl1, sf-cakes, cblaurenceauthor
Too often we underestimate the power of a kind word, a listening ear, a walk down memory lane or an honest compliment - all of which have the power to change a person’s day for the better. A smile is so valuable and I’m blessed to have you all put one on my face. Thank you for caring. Thank you for your encouraging words. Thank you for being you.
You all amaze me. There is power in numbers. Together we are stronger and all you wonderful ladies have proven that over and over again.
Love, Regina
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Hello all. I recently rejoined after 8 years NED. I now have lesions on my liver. Onc is prescribing fulvestrant injection and ribociclib pill. Can anyone give a rundown on experiences, side effects, results, etc. Still new to this so looking for any info out there. Tha ks much!
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@rk2020, I have not posted often but have been reading. Your grace in adversity is inspiring. I greatly respect your decision. Thinking good thoughts your way. Kathryn
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Dear Regina, you inspire us all… to be better, to smile, to love and to appreciate every moment. Thank you. Saulius
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Dear Regina,
I've been laying low for a while and just saw your message. I'm so sorry. You've been so helpful to me through different treatments. I hope palliative care gives you some relief and you find inner peace - so needed. You'll be in my thoughts and prayers…no longer as rk2020, but as Regina.
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Dear Regina
I'm so sorry that you are at this point, but awed by the courage and grace with which you are handling it. I second every wonderful word that the other women have said about you. Your posts were knowledgeable, compassionate and very helpful to me. I understand and respect your choices and thank you for setting such a wonderful example of how to deal with decisions we will all need to make at some point.
I don't know whether you have ruled out radiation to the clivus. I had that in June, 2022 and would be happy to give you the details if you are considering it.
Love and positive energy sent your way.
Eleanora
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@eleanora Thank you for your kind words. 🩷
I would really appreciate hearing your experience with radiation to the clivus. I need the raw truth because I’m most concerned about collateral damage. I’ve already had rads to my cervical spine so I’m familiar with the mask and know I can handle that (although I sure do like it when it gets unsnapped!). I would be getting 15 sessions.1 -
Regina
I had 10 sessions over a two week period. Yes, the ugly mask is required. There were multiple things that were not explained to me, and I hope that by making you aware of them, you can avoid them. Neither my MO or RO prescribed steroids or anti-nausea meds for me and I needed both. Got those starting on Day 2. Make sure you get them on Day 1.
Radiation to the skull increases pressure that may make you dizzy, lightheaded and queasy, as well as give you double vision. I held on with both hands on stairs and did not feel that I could drive safely. These effects will all gradually diminish and eventually go away within a few weeks. None of them were at an intense level - for example I took zofran 1 hour before each treatment and again before bed, but didn't need it all of the time. The steroids continued for two weeks after the end of treatment with a one week taper at the end. The effects I can attribute to them were an increased appetite, heartburn and sleepless nights. I was given several different prescriptions for sleep and nothing worked until the steroids were done. Prevacid worked on the heartburn.
They also did not explain that, while the most intense level of the radiation beam is focused on the clivus, there is a "bounce back" effect of decreasing rings of intensity from the center out. I learned this when I developed what looked and felt like an intense sunburn on my nose and spreading onto my cheeks. When I brought this to the attention of my RO, he immediately went to the treatment area and had them cut away the section of the mask covering that area, which helped tremendously. Apparently, the mask was intensifying the effect on my face. The same bounce back will irritate your throat and it will feel burned from just above the uvula down to where it will meet the heartburn from the steroids. Milkshakes, smoothies, ice cream and ice water will be your best choices, but avoid any citrus or tomato flavors. A lemon ice pop brought me to tears. I mixed whey protein powder into the shakes and smoothies for some nutrition.
I had bald spots on either side of the back of my skull, where I assume 2 other beams entered, but the hair mostly grew back. I don't think I have any permanent negative effects from this treatment.
Sorry for the long and potentially scary description, but I wanted to give you an accurate accounting of my experience. If I were told that I needed this again, I would agree without a moment's hesitation.
Please ask any questions you like. I will be rooting for you.
Eleanora
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Hello Ladies,
I have had quite a hiatus from this site but back with the discovery of liver Mets. Right now I seem to have 3 spots about 1.5cm in diameter. I start Xeloda as soon as the drug arrives. I was originally diagnosed in late 2016 with a large brain met (which has been stable since original surgery and radiation) and bone Mets (Ibrance for 6yrs and clinical trial Ipatisertib for almost 2years). Two recent clinical trials had no response and the. The discovery of liver Mets. My bone Mets have been very painful since thanksgiving and on a lot of oxy to manage that. I would love some encouragement both about liver and Xeloda if you can as I am really stressed out.
Also I can’t figure out how to update my signature if anyone can tell me. I am having a liver biopsy scheduled currently Er/Pr+ HER2-
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@josgirl I found xeloda quite tolerable and wish I had been able to take it longer. I did baby my feet so I had to stop Aquasize for a few months but was eventually able to join class again while still taking xeloda. If you look at my signature, you will see what I’ve taken and I found Xeloda and Everolimus to be my easiest drugs.
Speaking of signatures, reach out to MODERATORS. Signatures are very helpful to me when I’m responding to posts but I don’t remember how to do it. 🤦♀️ I just know that I make my own format rather then use the signature automatically spit out by answering a few questions.1 -
Regina,
I just wanted to say that I'm thinking about you. You were one of the first people to respond to me here, and I have been touched by your kindness and support. Sending warm wishes for strength and peace to you.
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