How are people with liver mets doing?
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Apples to oranges, Apple's to baseballs. My IR called comparing PET to MRI as trying to compare apples to baseballs. So, from now on, I get PET and MRI for liver. I'm hoping for no confusion this time.
I'm in scanxiety mode because scans are October 22, results 27th. I've made up a new word to put in our dictionary. Scansdemic. Stupid COVID has made my scanxiety blossom to a new high.
My de-stressor has always been hugs from my grandchildren. The pandemic has reduced my time with them to a bare minimum. They are in in- person school. My son is concerned that I'm at high risk and they might infect me. So, no hugging. That's a serious bummer. 💞
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grannax2
I like your new word Scansdemic. It is real to have anxiety and most friends and family don't get it. I also get your frustration about not seeing the grands. They bring so much joy in this hard hard time. I used to keep mine twice a week. We finally lifted the ban on seeing each other then she went into preschool. I don't get too close and we both wear masks. I see her for a short visit every other weekend. No hugs. Well she did hug my legs on my birthday. 😉
Dee
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Grannax2. Scansdemic.
Perfect.
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Dee, leg hugs should always be allowed! Lol New rule.
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candy...praying its not mets !!! ((((hugs))))
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Leg hugs. So sweet. I'm sure my granddaughter would have given me leg hugs when she was little but she's fourteen now. Where does time go?💞
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Dee, like your new avatar photo. Sorry you"re having migraines. Any better?
I imagine it is so hard for those of you with very small grandkids who you can't hug tight. Got together recently with two cousins, who I haven't seen in person in years, and we just couldn't resist the risk of brief hugs, with masks on, and it was so nice.
Saulius, thanks for the info and reminder of ultrasound. I have often thought about it and wondered why it's not used especially when IR deployed it with my liver biopsy. I didn't inquire, but just felt like he had a clear picture of what was happening in my liver.
Arolson, please check-in and let us know how you are doing. (((Hugs)))
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Bliss,
Funny you should mention ultrasound again -- on the 19th, I have my microwave ablation and another biopsy, and the IR is using ultrasound. Previously, for both procedures they used CT scanning. As Saulius said, in the hands of a skilled ultrasound user, this is much safer for us and also helps to keep down the radiation that goes into our bodies.
On my first liver biopsy, they started off with ultrasound. Even though I was doped up, I heard the IR say "I can see it" referring to the tumor being biopsied. She asked the supervising IR: can we just go in (this was with the US). I assume he said no bc they then started up with use of the CT. That was odd, and I never thought to question it, but maybe it's time we all did.
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BevJen Ihope everything goes well for you on the 19th. Although I don’t currently have liver mets I have requested the occasional ultrasound to check out my liver between my 6 monthly ct and 6th monthly mri scans. I like the fact that you can get “involved” with the ultrasound and get immediate answers.
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Dear JFL, how are you doing? Just worried...
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BevJen, My liver biopsy was U/S guided. The GE who ordered it indicated CT-guided, but the IR said it was his call. He said if they could see what they needed with the U/S that's what they would use, and would switch to CT only if necessary.
Dee, I hope you had a good appt with your neuro and can get some help with your migraines.
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My liver lesions were all deemed pretty small by CT, MRI and PET. Each radiologist and my MO were not sure any were large enough to biopsy, but the IR could clearly seem them with US and said he could do it. I started thinking then, why do they not use US on me anyway? Yes, lessening our radiation exposure plus no contrast to aid our kidneys. It took all three of those first tests to even get to the dx!
JFL, thinking of you. Please check in if you can.
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thanks bliss for the compliment on the new photo. That was on my birthday in front of the beautiful yellow flowers that bloom this time of year.
The Neurologist gave me a numbing shot In the occipital nerve to see if I could break the cycle since my headaches start there. It worked for a day, but she warned me it was just a temporary thing to calm that nerve. Still dealing with the headaches and flank pain.
BTW My second liver biopsy was with ultra sound guidance at MDACC. It went well. The 3rd one I just got was CT guided because the IR had to go up high between 2 ribs. I think it has to do with where the tumors are in the liver in choosing ultrasound vs ct.
Dee
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I hope we hear from Arolsson soon, too.
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just want to thank everyone for your support. My feeling of disappointing my girls comes from me not being able to be there to support them and be the mother I want to be-my girls are adopted and this week I've also been trying to make sure all their papers are in order. Reading the promises that we are the perfect family--not a dad who would abandon them (round one of cancer "scared him") and a mom who would get MBC--it is almost too much to bear. And I am a generally responsible adult, I certainly know better than to mix (mild, but still) sedatives with a glass of wine--especially with my anemia. But ok, chalk it up to desperation. I sense that you all understand in a way most people cannot.
We actually have an excellent, fantastic health care team--NOT my breast cancer center,( they are highly qualified but incredibly dysfunctional)-- but rather the palliative and geriatric home health care team of professional, compassionate and efficient nurses, counselors and physical therapists. They've seen it all and really help keep me on track.Had a two hour session with my therapist, guilt and dread both if the scan shows progression AND if it by some miracle shows improvement. She got it.
So panic over and back to cancernormal. Had a lovely evening laughing with my girls who showed me their latest dance moves. YOU GUYS ARE THE BEST!!!!!
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arolsson....forgive me if you mentioned this...but I see you are her2+....but I don't see Herceptin in your profile?? Did you try that???
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Arolsson
So glad to hear you have had some time to process and some talks to help through the emotions. It sure sounds like those girls have a great momma who loves them so very much. You are brave to be vulnerable and sharing a part of your story here. I hope you learn the moves and feel like dancing with your girls!
Dee
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Much affection and relief coming your way from Texas!. I'm so glad that you had a compassionate therapy session and fun with your girls, the best therapy there is.
Thank you so much for checking in.
xoxo
Katty
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Dear Arolsson, you do deserve that happiness... being with your children is the best remedy for your soul, I am sure. I also believe your scan results will come good. Hugs, Saulius
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arolsson, I'm so glad to hear you are doing better. Regarding the guilt towards your daughters, I have to say I doubt there's a parent alive that doesn't FEEL like they've failed their children, somehow, at some point in time. We are all human, and that's part of parenting, too. Hugs to you.
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arroisson I am so happy to read your words and that you have an excellent support team. Your girls are so blessed to have you but I can easily imagine the guilt you feel at times. Yes, we get it. I still feel guilt from the consequences of my first DX when my kids were 18 and 20. My youngest had to drop out of the university he was attending because of money. He had two years left but dropping out changed his path and threw him off track for years. But, look at him now, he's a doctor! He's 46 now and it's his second career but worth all the time and effort to get where he is.
JFL We're thinking about you hoping you will check in soon.
My second liver BX was US. The tumors were small but my IR was able to get to it easily. No pain afterwards. I'm allergic to iodine so US is better for me.
I finally got the results back on my Echocardiogram. It showed mild aortic stenosis and thickened heart muscle but my doc does not seem worried. I do need to get my diabetes under better control. My A1c has been getting higher since I have gained some weight on Faslodex. Always something, right? 💞
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Good afternoon Ladies (it's afternoon where I am!),
Coming over here from the Doxil thread. Doxil stopped working for me and I now have two more liver mets to add to the two I already had. Going to participate in a clinical trial my MO is involved in locally with Eribulin (Halaven) and a trial drug called Balixafortide. It's a 50/50 shot if I get the trial drug along with the Halaven but I would have received the Halaven anyway so I've nothing to lose!
Interested in any of your experiences with Halaven/Eribulin and the SEs you've experienced as well as how long it's been effective for you.
Hope you are all having a good day and enjoying life despite struggling with this disease!
Cindy
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Welcome Wallaby! You might also want to cross post to this other stage 4 group "Are you currently (or have you been) in a clinical trial?"
I'm sorry to hear that doxil didn't work out, but you will find lots of support and solid information on both of these threads!
Katty
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Wallaby Doxil failed me too..I am on Halavan...you may want to go to the halaven thread... or Chemo Starting Aug....there are a few of us in there on Halaven
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Very interesting discussion about scans BSandra. I didn't know how "out of it" I was. I originally got CT's in 2002, then PET came along and I was getting a CT and PET, then they combined the two for a PET/CT (CT only outlines the organs, PET gives an uptake score but not a measurement of size like a separate CT). Now I'm hearing that I should be having an MRI, or an ultrasound with the PET/CT? I will ask my doctor about MRI's next month when we video chat.
I have liver mets that resolved on last PET Scan, but now having perirectal and pelvic sidewall nodes lighting up on PET. Markers going up. I just had surgery in Dec. , a laparoscopic small intestine resection caused by MBC (can't find that place in any literature but be wary if you lose lots of weight and have digestive issues, finally found on CT after 6 mos. of telling me to eat more fiber).
Oh I do remember for my biopsy they used ultra sound because the CT equipment was in the basement of the new hospital and they were 3 floors up- I was nervous when I found this out but now I have more confidence in Ultrasound, except my first tumor was discovered by CT and ultrasound couldn't find it even after they were told where it was (back in 2002, maybe machines are better now.
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I am moving from taxotere to Trodelvy in a few weeks. How were the side effects? I’ve been warned about bad diarrhea and nausea.
What is your experience
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There is a Trodelvy thread here https://community.breastcancer.org/forum/72/topics...
not many people are on it but they check in pretty frequently
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Elderberry - I think you have a scan today? Thinking of you.
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Sofie..what type of breast cancer do you have?? Have you been stage 4 since joining in 2010?
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S3K5,
Good luck to you tomorrow with your liver ablation. I hope that it goes well. Since you are having general anesthesia, I have a suggestion -- not sure how you usually react to sedation, but I know that I get queasy with any kind of sedation. So for any procedures -- even something like a colonscopy -- I always tell them beforehand, and I especially note it to the anesthesiologist that I get queasy. It's very easy for them to add anti-nausea drugs, and it's much better than feeling like you will barf right as you come out of the anesthesia. Hope that advice works for you.
I am scheduled for an 8 am procedure, but if the doc cannot see my liver lesion on ultrasound, he will move to TACE instead and I will have to spend the night in the hospital -- not my favored result, but I'll deal with it. I'm hoping we can just go with the microwave ablation, since I had that in July 2019 and didn't have a bad recovery from that.
In any event, I'm thinking of you. Fingers crossed that it all goes well.
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