How are people with liver mets doing?
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Grannax,
So sorry about your report.
What's going on with your attempt to get on a trial? How about those that Cure-ious listed, which I think are actually at your cancer center? I hope you are able to find a treatment that can work for you.
Thinking of you.
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Grannax...so so sorry to hear this hopefully you will begin a new treatment and things will start shrinking hang in there!
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Oh Grannax...{{ hugs }}.
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Grannax2, So sorry about your pet report. I hope your MO can get you started back on a good treatment asap.
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I had a sleepless night. That PET report really got to me. What I didn’t mention is the new lymph nodes that lit up. One is near my heart, two are near my esophagus. UGH The heart one scares me. Has anyone ever had mets there? The new rib mets don’t scare me and it doesn’t hurt (yet?).
The uptake on the liver mets was up in the 10-11 ish. UGH. That’s scary too.
My MO sent my records to Baylor Cancer Center Research Department. I don’t expect to hear back for a week. UTSW does not have any trials that I qualify for.
I don’t think my MO is going to want to wait too long to start something I have a feeling, after she sees the PET, I will get a call She wants to start Exempra/ Xeloda
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Grannax- My heart goes out to you. I hope your MO has some new ideas for trials for you. And if you do go with Exempra/Xeloda that is knocks the cancer back and fast. You are a wonderful woman and I hate to see you hurting.
I do not fully understand the PET uptake numbers. My last PET said my liver uptake was 21. Previous PET was 7.8. So I am thinking Wow the liver is really active, but the size is only growing a few mm at a time on the MRI scans. I asked my MO about doing another PET after starting the new drug Lynparza to compare the uptake numbers--- 21 before treatment, and ___ after 3 months of Lynparza. My MO said we do not compare uptake numbers from one PET to another. We will do a MRI to monitor the liver and look at the size of the tumors. So I do not know how you should interpret the uptake number on your PET.
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candy-678,
Are you BRCA+ or does your doctor think Lynparza will work for ER+ disease? Always looking for drugs we can use.
Hugs, Susan
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Dear Grannax, my heart goes out to you. You need some plan. Your MO will for sure come up to something. We'll wait for the news... Saulius
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Uh, at least some good news in our front: skin punch biopsy (connected to that wound) from mastectomy scar is negative for cancer - only scar tissue! Phiu... now we have to fix these damn lymph nodes:/ Saulius
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SusaninSF- I am BRCA+. That mutation showed up since the beginning. But when first diagnosed with ER+/PR+/HER2- my MO started me on the standard Ibrance/ Letrozole. I have had small, steady increases in the size of the 4 liver mets over the last 3 scans (3 month scanning, so steady increases over 9 months). I had a repeat liver biopsy this April and it showed ER flipped to ER-/PR+ and still showed the BRCA mutation so we changed to Lynparza. No repeat scans done yet (I have been on Lynparza 1 month now).
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Congrats Saulius really happy for you both
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That is great news Saulius. What a relief.
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That's great news, Saulius! Woo Hoo!
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yay Salius !
I’m already feeling fatigued from fluvestrant and ibrance atleast I think it’s that. I’ve only been on it three days. I feel like I’m just dragging myself about and just want to rest all day. I’m trying to be patient with myself since I have the other problems going on plus other meds I take since my hospital stay. Anyone feel this when starting ibrance?
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Wonderful news Saulius!
Grannax, I’m so sorry things have gotten to this place and sincerely hope that your MO will find a new treatment soon.
BAP, I found I had quite a bit of fatigue with Ibrance but it took a few weeks before I felt it. Mind you, it made my hemoglobin tank and, if I recall correctly, you have been having trouble with counts. Hope the fatigue lifts.
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thanks Sadie - my hemoglobin was just normal at last check on Tuesday so I’d find it suspect to drop so fast. Trying to remember I’ve been through a lot and perhaps I’m not the norm
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grannax, well that,s a bummer. Sorry to hear. My results say numerous masses in liver. Pretty disconcerting. Now pain in or under left rib cage so wondering what’s next!, hang in there, girlfriend.
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Dear all, thanks, I already asked to arrange an appointment for cyber-knife to these lymph nodes... We don't want to give any chances for these suckers. I just wonder... why don't they light up on CT? Are they too small (5 mm max), hmm...
Dear BAP, please rest and let these therapies do the job. Fingers crossed for I&F to become your wonder combination!
Saulius
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Salius , I would say too small but that’s been my experience with CTs. Any lesion in my liver that has been around that size never showed up . At first diagnosis, my met was 5 mm and never showed up on CT but did on mri and even then it was hard to assess.
CT is not a good modality for me. When all my issues started this time around, my ct suggested I had even further regression of my tumours , yet one month later, my pet scan (cause mri failed me as well saying I had hepatotoxicity rather than cancer) showed many light up in my liver. So if I had to guess , perhaps that’s why ct is not showing Sandra’s.I’m feeling a bit better today. It might have just been a bad day. I try to remember some of my weakness is due to the five weeks of laying down and losing muscle.
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BAP,
You are probably correct about the weakness being at least partially due to being in bed in the hospital. When I spent 24 days in the hospital for my hip replacement/rod placement on other side, I couldn't do anything. I had to go to the rehab hospital to get some of my strength back. The therapists told me some rule (which I can't remember) about how quickly you lose your muscle memory and reaction when you are hospitalized without getting out of bed.
Will your healthcare policy allow physical therapists to come into your home to work with you? Many will do so. This might help you build up your muscles more quickly, thus helping with your recovery. I know you have a lot going on, but this is definitely worth checking on.
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BevJen
I don’t doubt that it’s contributing. I did feel like I was dragging myself around and was all over weak. But my supper time I was feeling a lot better. Not 100% but less draggy. But I know my leg weakness isn’t helping things. I’m an exercise therapist by trade and work in a wellnesss clinic (though off now) I’m sure I can get one of the therapists come by to help me build my muscle back up. It’s awfully hard mentally some days going from independent to dependent at almost 34 years old. I was exercising though all of my other treatments and tolerated it so well, and now I can’t and get winded easily. It’s a strange feeling but I’m trying to be patient with myself and hope it’s a blip in time. My main focus is willing these new drugs to work lol I’m hoping to have some more improvement by Christmas. I’d like to enjoy my Christmas season and be involved in activities.
One day at a time .
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BAP,
Oh, wow, I didn't realize what your profession is. So you know a heckuva lot more than I do about all of this. I spent a total of 44 days between the "regular" and the rehab hospital, and when dismissed, that didn't really even touch the problems. (Of course, I'm a lot older than you are -- I'm 69.) I've been in outpatient therapy now since the end of June, and just now am beginning to feel like I will be able to get back to normal.
And yes -- always -- one day at a time.
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oh my ! I find therapists and treatment styles vary for each person which is why I tailor everyone’s program based on goals, age, previous activity level/exercise experience ect. Some therapists are just crappy and lazy as bad as it sounds. I’ve worked with many and have had patients tell me “oh so and so barely helped me , but this new one has been amazing “ So it’s easy to tell who really is working for the patient. I can easily make my own program up but I think I need the support person so I think that’s what I’ll end up doing.
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I’m on day 4 of a Disney vacation with family and finally giving in and renting a scooter to get around the park. My joints are killing me from the letrozole and my feet have plantar fasciitis. I hate feeling disabled
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my medical oncologist thought the spot in my liver from SBRT was cancer growth 7ntil the radiation onc who did it said no. it’s just what SBRT treatment does, Good luck!
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awesome zipmonk
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Hi everyone!
I’ve been out on vacation in the Smoky mountains celebrating my 60th birthday-🥳 All 5 kids, spouses and grandkids came to the rental cabin and it was Fabulous!
I scanned the posts and love seeing the good reports from many. I care about those who are in a rough spot. Grannax- you have a great MO. Hoping that your next treatment is the perfect one to kill the cancer.
I hurt all over from the treatment SE (Arthragia, myalgia, arthritis) and the extra activity, but I am happy as can be. I don’t know when we will all be together for such an extended time so it was worth it.
I did have quite a bit of liver discomfort on the drives. Hoping it was nothing. Last bloodwork was good.My next scan is Nov 1.
Dee
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Hi Dee.
I'm so pleased to hear you had a good birthday and am hopeful that I will be reporting back on great fun for my 60th in April. (Thinking about a trip to New York but it will depend on where things go with this pandemic!)
Sorry to hear about the pain though. You're the first person I recall on BCO that mentioned liver discomfort. It's the first sign, in my case, that things are going awry. My MO was surprised that I have pain given that I have a relatively small burden in my liver but it's the one close to the capsule that keeps me on edge. It's being quite vocal at the moment and while I know that, with only one infusion of Vinorelbine under my belt, it's too early to see any results, it's hard to not be a bit concerned with increased pain. All to say... I get it. Take good care of yourself.
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Dee,
I'm so happy for you that you were able to spend a good amount of time in a beautiful setting with your whole family. Family is why we go through all of these difficult treatments and surgeries. You must have started early! I'm just three years younger but my kids are 23 and 27 and not interested in having kids. You are a lucky girl!
Hugs, Susan
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Dee, that sounds like an unforgettable birthday celebration and the Smoky Mountains are so beautiful! Happy Belated!
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