How are people with liver mets doing?
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Thank you all for the welcome. I feel like I have already learned a lot from you by reading earlier posts.
Moth, thanks for asking. Physically, I'm tired and achy from the meds - hoping that will improve (and knowing these are not the worst side effects) and liver pain. Intellectually, I'm little (ok, a lot) overwhelmed and my memory is not reliable, which I figure is a reaction to stress. Emotionally...does "vapor locked" makes any sense? I'm pragmatic by nature, so I wouldn't say that I'm in a panic, I just can't really figure out where I am, so to speak. I keep thinking, when I get that next piece of information, then I'll know what to think about it and how to feel. Until then, I'm...waiting. Right now, I'd really like to know that the treatment is working.
I have an appt with a new MO tomorrow (my original referral). There were some insurance-related delays, and the 'interim' MO I was seeing was not a good fit at all. I've heard really great things about the new MO, so I'm looking forward to it.
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Philly- I was thinking you had MRI last week. Any news?
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BevJen- Pocket duty for Friday, MRI right?
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Bev with you tomorrow (candy I think the MRI for Bev is tomorrow Wednesday)
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IntoLight- Thinking you had scans coming up too????
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Candy, yes, scans tomorrow. Thank you for remembering. Thinking of Bev and others who have scans this week. I think there are several of us...
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Into the light...I am with you in your pocket praying for you!
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i love that y'all track scan timings for each other. Such thoughtfulness and kindness in this group. I apologize for not tracking so well, but sending all of you with scans coming up prayers and hopes for best possible results. Mine are not until the end of the month.....I tend to start my scanxiety early.
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HopeandGratitude- I try to keep a sticky note next to my computer when someone comments they have scans coming. You are now on the list too. I have scans Sept 28.
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Prayers definitely going out for test results and treatment plans for all you amazing metsers! Also, asking for prayers for my CT scans today. On my 28th month of I/F. I feel blessed to say this as my mets are pretty numerous. But, those darn TM have been rising for a few months now😞. I’ll go over my results on Thursday with my MO. My mind is starting to race.... Appreciate you all
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Anewbreath- In your pocket for scans today and results Thurs. On the list.
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I'm getting CT results tomorrow.
Hugs to everyone. I'm in everyone's pockets. I got a flower basket on the weekend with an adorable little fairy so I'm going to use his little wings and flit around to everyone
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moth- Waiting to hear results---they WILL be good. Love the fairy.
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Awww love that Moth..also here with you!!! GREAT ((((((((VIBES)))))))) sent to you for results tomorrow!
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Candy,
I have an MRI with a skull protocol (whatever the heck that is) tomorrow and my every three month MRI of my liver/abdomen on Friday. Thanks to you and all for thinking of me! I'm pretty calm about both but we shall see.
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prayers for all having scans!
De
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ANewBreath & Moth, sending {{{positive energy}}} and all my fingers crossed for good scan news tomorrow.
Bev, in your pocket for tomorrow and Friday scans. Joining others for upcoming scans as I have a PET/CT coming up on Sept. 11.
SeeQ, welcome! Glad you found us, but I'm sorry for your need to be here. So important to have the right MO and sounds like you've found one. Wrapping my virtual arms around you.
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Good thoughts for all if you with scans/results this week. It seems like a busy week.
You have your very own fairy wings, Moth. I love it!
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Just wanted to stop in and say prayers to all who are having scans. Praying for good results, healing and comfort. Hugs.
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Dear all, I join the support group for those who are into scans. All the best for you, be kind to yourself. Being an eternal optimist this time I again believe results will be good. My Sandra's interim ultrasound is coming on the 10th of September too. Sincerest hugs to everyone, Saulius
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Moth waiting for results today with ya! Bev in your pocket for scan today and Friday!
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I saw PA yesterday, my MO wasn't there again. I did get my PET/MRI scheduled for October. Both on the same day.
I found out something interesting. I know most of us have TMs done. I've always told everyone that mine never seem to be an indicator of disease process for me. I was wrong. PA told me that my CA 15-3 went up to 34.4 last November just prior to y90s. I had noticed that but no one ever said anything to me at the time so I dismissed it. I didn't seem very high to me. She said yes it is an indicator for me. When they saw it jump from about the tens to the thirties, basically tripled, they noticed and it correlated with scans. So, now I know to watch it.
I don't have yesterday's back yet but June was 8.9. Ever since the y90s and Faslodex it has continued to go down dramatically. I hope it's a good number this time too.
Hoping for good scan results for everyone.💞
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Grannax,
That's really interesting about your TMs. I could only wish that mine were that low. Prior to May 2018, my CA27-29 numbers were consistently in the 20s and 30s (but within the normal range). In May of 2018, they started to rise, which resulted in confirmation of liver mets in May 2019. Since that time, they've never been back in the normal range, and they fluctuate quite a bit (usually to the upside). But nothing really new on scans, at least not until now. My MO thinks it may be subtle changes in bones. I guess time will tell.
great that your numbers are so low!!! So if your docs do think that your TMs correlate, then the potential issues on your last scans could be nothing more than that -- potential issues. Terrific.
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Mine don't even work lol. my MO doesn't even check them ....
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Hi SeeQ,
I don't post often, but I too have vapor lock. I call it being trapped in amber. I'm very pragmatic and very much a realist, without being hopeless or fatalistic! You will find a lot of information and support here and I wish you all the best!
Hope you had a good meeting with your new MO. Having someone who is straightforward and simpatico is so important!
Katty
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Good mojo (and maybe mojitos!) to all having scans this weeks!
Katty
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Good news from my CT - significant response, all lesions continuing to shrink0
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GREAT NEWS moth!!! Congratulations!!! Wahoo!!!
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Woohoo! Great news, Moth!
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Katty, it's nice to know someone understands how I feel, and your description nailed it. I especially like your "trapped in amber" analogy.
I really like my new MO. It felt like we had a detailed and direct conversation at the person-to-person level, not just doctor-to-patient. I really appreciate that. And he has a patient portal - which sounds like a no-brainer, but the interim MO didn't use one. WTH?
The news is potentially not great. I had a big jump (almost 4x) in the 15-3 TM from before tx started to after 3 1/2 weeks - which is really early, but still... I'm at 7 1/2 weeks of treatment now, so he wants current bloodwork before sending me for PET scan early. We hope to have lab results (and better numbers!) tomorrow.
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