How are people with liver mets doing?
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CelebrateLife, hope you get good results!!
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Celebrate life fingers crossed.
Miaomix you made me laugh about the MO. Love that paragraph. And so true, if they are always making fun of the supplements then why the fear? Hmm interesting question. We went to the top guy at MSK, did not have a pleasant experience.
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LaLady/Claire - Are you back from the big europe trip yet?! Want to hear all the fabulous stuff you did in London, Belgium, I forget where you were headed?
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I’ve been in email contact with Claire. She returned from London jaundiced and feeling bad. She’s seeing her MO tomorrow to see what is next.
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Thanks, Kaption!!! Dang, I hope she's OK and I bet the trip was worth it, regardless of what is going on, she knows how to live it up!!!! I forget what she was taking, but hopefully we hear about it and if she needs a change in regimen or a trial, we can help her research stuff too.
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Kaption that is so upsetting. Thank you so much for letting us know. She was so excited about the new job, it better just be a bump on the road.If you could please send her our love.
I was just thinking of you moments ago, could you tell us again the name of what helped you with many UTIs?
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Momall, my onc seems to be moving pretty quick on things. Now if I could just deal with my anxiety...! Thanks for your encouragement! Hugs
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Tganjs to everyone who was reading my posts. Last week was crazy. I had an appointment every day. 120 miles back-and-forth, plus treatments, sorry meant appointments, and I was exhausted by the end of the week. So I start cyber knife on Friday for my brain Mets and then another treatment on Monday and one on Tuesday and hopefully tgat will zap them
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Sending you lots of strength Gracie as you go through all of these appointments and the drive and everything else on top of it
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Hi ladies - I enjoyed London, but ran out of steam the last day and did Stonehenge in a wheelchair. Got home, unpacked and went back to the hospital for second gallbladder stent. I'm at home slowly getting better but onc watching all my numbers. Having a vanilla ensure daily, but not a lot more is staying down. I am not logging on for awhile, so please PM me only. No regrets about my trip - used most of my miles to go first class.
)(()) C
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Thank you so much Jens
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Gracie-Saying prayers for you for your upcoming procedures! Hugs!
Lynne
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Hugs back Lynne!!
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Checking in on you Gracie. How are you doing? Thinking of everyone in treatmen
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Has anyone heard from Zarovka? Worried about her.
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Jens, I seem to have come through cyber knife in pretty good shape! Some swelling that they controlled with dexa and now I’m done! Yea! Now to pray it god it’s jib. I’m on to Abraxane for the liver spot!
Hope you are having a great day.
Z? You doing ok
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LaLady, glad you had a great time in London! Sometimes it is good for the soul to go on a trip. Hope you are starting to recover some.
Gracie, I am happy for you that the cyber knife did its job. And all the traveling that you survived these last ten days. You are like the energized bunny, you just keep on going!
Happy fourth everyone! Love the fireworks Curious.
Z, where are you?
Therese
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Also wondering about KC as well as Z. Hope you are both doing well and busy enjoying life. You are in my prayers.
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Zar we are cheering for you!
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<Z> hasn’t posted since June 27...that is not like her at all. Thinking of you
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I believe she said she had company coming for the 4th?
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Hi Kaption! How are you doing? Haven’t talked to you for a while.
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Hi Gracie. I’m okay. Just had my third Kadcyla treatment and I’m having a rough side effects week from it. Fatigue and nausea mostly.
Just hoping it slows stuff down. I haven’t had much good news in a while.
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I have been following and saw that things were getting difficult so was glad to see you post. I’m starting Abraxane probably next week and just had cyber knife and a pretty good sized lesion on my brain.
How is the Kadcyla going for you? Sounds like hard se’s ? You’re in my thoughts a lot. Sometimes I wish I had the time to make a trip up north and have coffee or something, but maybe someday
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kaption- kadcyla really shrank my liver tumors. I did have s reaction the first time so had to be pretreated each time. I found I was the most sick about 5 days after treatment for day ior two. I also remember night sweats.
I hope you feel better soon.
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I have gotten a flurry of concerned emails and posts ... Sometimes I wish my family cared this much. I know, it's different. They are dealing with this 24/7. In any case, thank you. It really helps.
After Gamma Knife in late June I went to Colorado to spend time with my brothers family ... they will be guardians of my kids if it comes to that. My husband has his own statistical expiration date related to his heart. So I was pretty focused on family time with Bro. I was wobbly and stayed off my mountain bike. My head felt like it was too big for my skull .... !HOT TIP! Don't take a vacation at 11,000 ft immediately after brain surgery. But overall I was doing great, hiking up 1500 feet to climb peaks.
Then 9 days after treatment when I got home, to a lower elevation, I hit a wall. I was so exhausted I could not get out of bed. It felt like healing, it did not feel bad, but it set me back 2-3 days at a bad time. BCO dropped off the todo list. Now I have so much to write, it's overwhelming. In short, once that exhaustion lifted, I felt pretty damn good. I do have had various symptoms and SE's. I had to figure out how to manage the SE's and I have put the time into managing them ... also absorbing time, keeping me from hanging with you guys. I will get to it. Conclusive diagnostics on what is going on with my liver will help make sense of everything, so I am holding off until then.
Liver MRI was bumped by Gamma Knife Surgery and moved to mid July ... that's the key to figuring out how the liver is responding to Abraxane/fasting ...
Hugs and positive thoughts to everyone
>Z<
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Z so glad to see you! Sounds like you are coming out the other side of the gamma knife! I haven’t hit that wall yet but just finished Tuesday. I start Abraxane Monday.
Glad you got good family time and we’re able to get out and get physical!
Will continue to hold you in my thoughts and prayers!!!!
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My last PET scan was the Thursday before last Monday’s treatment. It was “ mostly stable “ except for a few liver mets, which show increased uptake. My new lymph node mets ( found in February) were also mixed results. Two were smaller, 2 were brighter. My CEA on Monday had a good drop, but it’s hard to get excyabout that. My response has always been good, hopeful early news followed soon by bad news. This is my ninth or tenth systemic treatment- since 2014. My body is tired.
Sorry to be a downer, but that is where I am right now. Four years and 9 months since mbc dx.
Kadcyla is close to my last option. You all still amaze me. Glad you’re here.
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kaption- I hear you. I felt similarly when kadcyla failed me. Now I’m back on Meds I started with in dec 2012 upon metastatic diagnosis. I am very tired as well and a lot more angry this time around. My brain and liver mets don’t respond to the same Meds it appears and Herceptin is basically not an option for me long term as it decreases my heart function.
I am holding on to the fact there is another drug like kadcyla in the pipeline and it might be available in a year or so. I remind myself that when I started this process kadcyla wasn’t available. It helps a little. I knock off one day at a time hoping I survive long enough for a new treatment. I am running out of options as well.
Lots of hug
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