How are people with liver mets doing?
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Just got my TMs from last night. They went down. First time in a long time. Yippee! Still very high but down is wonderful!!!!
Bab
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Zarovka..a little worried about you. Are you under medical care for your gall bladder fears? Hoping every day brings you better health news.
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Babs- great news! With tm is all about trends. Down is good!
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Me, too, Z. Did your labs reveal any news about Japan TX? Seems like you're in a scary place right now. 💞
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Lalady - Hoping your head and face heal quickly. And glad you are done w the rads.
Z - Welcome back to the North American continent.
Babs - that's hopeful progress. Glad for you.
Had a liver crisis yesterday that started in shoulder the evening before. Ended up w my first dose of morphine. .25 ml. That's 5 drops from a small syringe. Took 1 drop every 15 minutes so I would know how my sensitive body reacts. Well, it did little to cut the pain at that low of dose. I did vomit which makes pain worse. And had a weird rush I don't like. But am still here. Today back to x strength tylenol but mostly for lower back since the other pain set me down too long. What started the liver crisis? I think sitting in this office chair without a seat donut? And using my arms for printing, thus the liver / diaphragm got overworked. Won't do that again.
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Bluebird-DE that is very scary! Hope you get relief soon.
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Z- Thinking of you!!!!
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Hi Everyone, just posting as promised after scans and visit to MO. Just finished catching up on posts and feel that I'm learning so much, thanks for passing along your wisdom!
Hi Vilma, Just wanted to let you know that after CT scan and visit to MO there has been a 30% reduction in liver mets, and bone mets are barely visible on the scan. So I guess Femara rocks after all!! Such a relief to have shrinkage for once. There is word that Ibrance will soon be available but I think I will stick with just the hormone blocker for now. I know that you have scans coming up soon, and I hope that your results are positive as well! Take care, sending you hugs from the other side.
Does anyone attend the MBC conferences; and if so are they helpful?
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Hi All,
Three years ago today I was diagnosed with MBC to the bones. I was on Letrazole for couple years, then moved on to Faslodex and Ibrance for eight months and for the past two months I've been on Tamoxifen and Afinitor. I realized when it was too late that Ibrance causes stomatitis, I thus suffered from diarrhea, flatulence, indigestion and nausea for a few months. My MO at MSKCC sent me to see their gastroenterologist that unfortunately couldn't help me.
I have since resolved my gastric problems by ingesting, before I eat anything: 2 capsules of hydrocloric acid from Thorne. 3 ox bile salts from Douglass Laboratories, 4-5 capsules of pancreatic enzymes, and various other digestive enzymes and probiotics. I have since eliminated Imodium and the nausea medication. My appetite is back to normal.
Z- I don't know if this information is helpful to you, maybe you're already taking a bunch of digestive Enzymes, but I know what you're going through, and I felt I had something to contribute that maybe helpful to you and others with cancer medications induced stomatitis.
You're all great women, and I feel fortunate to be able to read your stories, your victories, and your struggles. Now I'm ready to share my own. May God bless us all
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Z- You are such a source of encouragement, advice, compassion and sympathy to all on this board So sorry to hear that you are not feeling well, I am very concerned ablout you...hope you are feeling better.
Marie
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Miaomix - thank you for the detailed information, it does help.
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Hello Bluebeard-DE
I am sorry you went through that painful liver crisis, and glad to know you’ve learned how to transcend it without the Morphine. I recently discovered that I no longer needed the Fentanyl patch I had been wearing for eight months for my lower back pain. I was suffering from two collapsed vertebras, that received what has turned out to be a successful khyphoblasty. I forgot to change the patch and that’s how I knew I no longer needed it. Better late than never....
I hope you continue to find inner strength and resources in addition to good medical care to continue staying strong and vibrant.
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Bluebird - Worried about you. How are you doing now?
>Z<
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Hey Gals-
Celebrating the victories I have read about. Babs -yay on tumor markers going down! Esperer-love that liver met shrinkage!
Hoping to get there myself as recent PET showed mixed results. Very stable bone mets, but progressing liver mets. So, ditching the Faslodex and moving on to Xeloda. Have appmt. with IR to discuss possible Y90, and MO's office tracking down nearest cancer center that has trial with AKT1 inibitor. Feeling like satisfied with the plan.
Z- concerned about the abdominal pain. will you be checking in with your MO on Monday? Sounds uncomfortable. sure hope it continues to improve.
Bluebird-sounds like a revolting event-so sorry you had to endure it.
Thinking of you all as we attempt to endure these lousy liver mets.
May the force be with you-MJH
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Wanted to share a good day. Took our granddaughters to their first Broadway Show today. Of course my DIL wouldn’t let us go alone so we went the 6 of us. But it was such a joy! Now I’m laying in bed. So exhausted but worth it!
Babs
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Babs, What adorable little girls! I bet you had a blast!!!!
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Has anyone heard from Artistatheart? When she posted a few days ago, she was going to have a scan to determine if she had a blood clot or pleural effusion. She was experiencing SOB and exhaustion. I am worried about her.
Lynne
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Lynne,
I’m worried too. We PM occasionally, but I haven’t heard anything since that post a few days ago either. She sounds miserable.
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Hey Artist? How are you doing?
>Z<
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Artist-please let us know how you are-we care!
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Artist, I hate so much how this stupid disease keeps beating you up. Sending hugs and good wishes for things to calm down. I do hope you have people who are advocating for you to receive prompt care.
Zarovka, I have been worried about you. Please be very kind and gentle with yourself and recover from your recent treatment. International travel is exhausting under any circumstances. By the way, I can see your daughter takes after you, super smart and capable.
Babs, I love the photos and I also love that your TM went down. Yes! High five.
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Esperer, congratulations on your improved scan! Regarding your questions about conferences — there are two kinds in my experience: some are best for information and ideas, and some are best for support. Scientific conferences, aimed at doctors and researchers, but open to patients, provide high-level and new information, as well as a chance to ask questions of some top people. Prepare for a huge brain workout and tons of note-taking. The other kind of conference is aimed at patients. At these you can find amazing support meeting and sharing with other patients, and exchanging tips. If you are really into research, the info may feel dumbed down and be what you already know. But if you are just starting that learning curve it may be just right.
MJH, I do like your plan. See you on the Xeloda thread?
Bluebird, I hope you are feeling better. So much to manage.
Welcome, miaomix.
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Lalady, I’m glad you are finally done with skull rads hell. Between that and your fall, and your weight loss, it’s a sad picture. Why does such a lovely person, inside and out, have to go through this garbage?! Things must start getting better now. Please take it easy and heal.
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Lalady - I am thinking of you. Hope you are having a restful weekend and improving on all fronts.
Shetland et.al. - I am doing a lot better. I've been craving red chile since I got back and eating it every day, only to find it's the latest superfood and highly anti-inflammatory, particularly in the gut. I appreciate your thinking of me. Trying to rest and eat well and see where that gets me. Small improvements each day, so sticking with that plan for the moment.
>Z<
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Zarovka, even small improvements are definitely the right direction, so that is great. It’s good you are on a med that doesn’t preclude eating hot chiles!
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Z, the last time my biliary tree went down from damage caused by lobular mets in my common bile duct (2013), the surgeon went in with a tube & scope and pulled out the clogged plastic stent that he had placed in the duct only two week earlier-- and my uncorked gallbladder spewed infection everywhere. Thankfully, he was already in there with the tools, so he sucked out all the infection immediately. He told my husband in the OR waiting room afterward that I was spiraling down on the table while he worked on me, and had I not gone to ER when I did... well, I wouldn't be typing this right now, that's for sure.
I would say that I do not mean to scare you, but maybe I do just a little, out of love.
Do not hesitate to go to ER if your pain levels escalate. Or if your color changes, if your pee turns dark, or your stools turn clay colored and start to float. Listen to your body. By the time I got to ER, I was starting to experience loss of mentation. I can always tell a nurse what I need, rather infamously, you know? But when we got to the hospital, I was saying fuzzy not-at-all-me stuff like, "Whatever you think, I don't know, you decide" and thinking it would not be so awful to just close my eyes and float away to heaven. Five years and two grand babies later, I'm sure glad I didn't.
Take care, my friend. Let us know how you are.
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Shetland Pony. I see you were on Afinitor Aromisin for awhile. What did you think of it? My MO said AA would be TX for me at progression. I've read nothing but bad stuff about it.
Z Glad to hear you are a little bit better. I know you are very proactive about your care. I wish there was some way to know if your Japan TX is working. If you feel well enough, tell me your thoughts on AA. Mine are all negative. Especially the lung SE.
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Z - so glad you are feeling better. We all worry about you. You have put yourself through so much. You are brave and we respect and admire you. But we also worry about you.
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Z-thank god you're feeing better! I hope each day shows more improvement .
Babs
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Hi Ladies,
Shetland P. thanks so much for your kind words and feedback. I can see the benefits of attending either conference; however, you have confirmed my decision that the latter would be more helpful. I have actually found more helpful advice from all the incredible ladies on here than I have on podcasts from some of the research conferences. The research is important and leads to our Tx plans, and it is usually accessible either online or from our cancer centres. However, day to day, we have continued issues and concerns.
MJH Thanks it is encouraging, and my first shrinkage! May the force be with you too!
Miaomix Very helpful information, and good to know that you had a couple of years with leterozole!
Zarovka I hope that you continue to improve now that you are home. Thanks for all the thoughtful postings regarding Tx, they help us all! The information that you provided from the Japanese doc that specializes in cancer metabolism was very practical and I love your action plan! What I'm getting from this is that we all should consider more balance in our lives. And to reconsider extreme diets and focus more on healthy intake. After researching the health effects of maintaining a high core body temp. back in the fall my DH and I decided to purchase a sauna for our own use. I feel so much better since my last scan in November, and it really helps the bones feel good. Whatever helps, right?
Vilma Shout out to you, hope all is going well and you have seen the posts!
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