How are people with liver mets doing?
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SeeQ When you're ready to ask questions about y90 or other local treatments we can help. I've had two successful sets of y90s for liver mets. I'm almost four years out from MBC DX to lung, chest and liver. Lots of ladies here can help educate you on other types of local TX. We'll be here when you're ready.💞
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Moth...ref: Thrivingmama....have you tried private messaging her?
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arolsson , could you elaborate on synthetic estrogen thing please ? Your cancer signature says er-? I am about to start HRT as I do not enjoy symptoms of menopause i had due to chemo one bit a d my cancer is er- as well.
A massive hug to you from England, I can so relate in going to all these things alone - this sh.t I feel would have been such easier with a loving someone. Although many relationships I see around are not that great so I think I would rather be on my own than in a relationship which is not that good.
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Reporting in
well I had a really rough couple of days. I am better today. So sickly from everything going on in my body. I was recently diagnosed with migraines- I thought it was just arthritis headaches that started in my neck on the right side. Of course I got a couple of migraines in the middle of everything.
biopsy was weird because they did not have my scan from the week before. So he had to go on my reports. I told him about the locally treated tumors and that I really didn’t think he should use any of them. There was one at the upper dome, which he said was hard to get to.
I didn’t get a chance to ask which tumor he used. But my puncture wound is up between 2 ribs so maybe he got the one I wanted. I am mostly concerned that he got a good sample for my TEMPUS testYesterday, The first day of the cdk 2/4/6, I was fasting per instructions and getting a migraine and still sick from the pain med that I ended up needing fluids. At least I was in a treatment room with a hospital bed because I stayed in it all day.
Another migraine woke me up last night. The Imitrex Took 3 hours til I finally got relief.
I was starting to wonder if going on this trial would work for me - was it the biopsy pain meds, the fasting dehydration, the new medication, All day nausea?
So today I have a dull headache, feel weak, light headed, hot flashes and a little pins&needles. But I am sooooo much better than yesterday. I think I am over the hump and hoping I can tolerate the CDK 2/4/6.
Thanks for following along.
Dee
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Dee, Hoping your symptoms fade away more each day. It’s so hard to know what really brought them on, as you said. And hoping your liver biopsy yields some helpful info. 🌻
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Dee,
Hope you soon feel back to normal. My doc is going to use Tempus, too, on the liver biopsy that I'm having on Oct. 19th. That must be the new popular one?
Take care of yourself.
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Dee- It's so much for our bodies and our spirits to handle. Sometimes overwhelming. But, we are here for you. I am happy today is a better day. To me, fasting makes EVERYTHING worse! I cannot fast. I am surprised they made your fast for the treatment. Hope maybe just for this first one? Tomorrow will even be a better day!
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Dee, I hope you continue to feel better. this sounds like a rough couple days! Pamper yourself now!
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Your kind words are encouraging everyone.
My med requires a 2 hour fast(no food or drink) prior to taking the pill and 1 hour afterward. I thought that meant no water so I was fasting water too after the before and after the biopsy. 🤢Turns out water is ok on the trial during fasting. So my med schedule is 9 am/pm (eat before 7 am/pm) trial nurse says it is ok to adjust that as needed since clinic days I must take the medicine there and it could be as late as 10:30 am. I can take again at bedtime then. Just try to follow the fasting but drink water only.
Dee
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Hi everyone. I received a private message checking in on me - so thoughtful. I haven't been on these boards in a really long time. I went through a really rough patch earlier this year with multiple hospitalizations and things were not looking so good. I am happy to share that I started an effective treatment (following a few failed) and am feeling so much better. My labs have really improved and my scan last week shows significantly less activity in the liver especially, and also in my bones. It was my second scan after starting Trodelvy (sacituzumab govetecan) in early June.
Anyway, thought I would share a quick update. Thanks for checking in. Haven't had a chance to see the recent posts, but glad to see so many familiar faces active on the threads
Hope everyone is doing as well as possible given everything going on right now. 0 -
Dee so sorry for how you are feeling! Sending you ((((hugs)))). I pray they took sample from tumor you wanted.
Thrivingmama so glad you are doing well!!
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thrivingmoma - glad to hear you are back on the road to recovery.
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Hello. 4 years this week I received the diagnosis of widespread liver mets. Sadly thought I was cured in 2006 and again 2007..DCIS.
But so happy that I still exist even with all the challenges, side effects and my life becoming more precious as time goes on.
Here's to all of us! (Imagine a champagne flute)
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SandiBeach57-
Nice post. Especially helpful and hopeful for those of us who are looking for new treatments or struggling with current one.
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sandibeach, cheers! L'chaim! Na zdrowie! Four years! Yay! Here's to many more!
thrivingmama, thx for checking in! Another trodelvy success! So happy for you!
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Sandibeach. I'm almost four years out, too. Yes, that DX of "liver full of mets "was hard to hear. Never thought I would be here four years later, either.
Thrivingmama So glad you posted here. I don't know anything about that TX, just so glad it's working for you.
Dee, oh no, migraines!! Not good. At least you know you can have water. When is your next TX?
Bevjen my doc at UTSW uses Tempus. So, I have one from F1 and one from Tempus. They both say the same thing, ESR1💞
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Grannax,
Interesting about Tempus. I was surprised when my MO suggested it because for some reason I think that my center has some "ins" with F1. I've now had the F1 tissue test as well as the F1 blood biopsy (not too long ago). Interestingly, the F1 blood biopsy did NOT pick up on some of the prominent mutations that the F! tissue biopsy picked up on. (But, of course, that could have been bc I'm in active treatment --for tissue biopsy in 2019, I had only just started faslodex and I had just gone off of letrozole). So I think that's why my MO wants to use Tempus. From what I've read, Tempus tests for far more mutations than F1.
And by the way -- I had no idea that UTSW was such a powerhouse in the cancer arena. I recently corresponded with a doc from there (who was lovely in responding and also in suggesting a different clinical trial than the one I wrote to him about) and when I was researching, I was very impressed by UTSW. What is it with Texas and all of these world class cancer centers? Wow.
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Hi all. I had abdominal MRI today to look at a possible new 7mm liver met seen on my CT Sept 28. I have never had a liver MRI before. So... has anyone had discomfort in the liver area during the MRI? I have discomfort in that area (under right breast/ ribcage area) periodically that comes and goes. It was there during the MRI today--- maybe 1/2 of the way thru the test. Wondered if the magnet could do that.
Also, I have had MRI's before for orthopedic issues---shoulder and low back-- and had that dye. But this dye is different the tech said. So they can see the liver better. During this type of MRI they have you take a deep breath and hold it several times. After the dye was injected, I could not take a deep breath. Tech said that happens to most people. Kind of freaked me out. MRI took about 45 minutes start to finish.
Just wondered how others that have had liver MRI's feel or how their test compared. We discussed on the Ibrance Thread about the differences in CT's--- some drink dye, some don't, some fast, some don't.
Just wondered. I am kind of nervous about results. If really progression, this will be my first progression.
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Candy, I had some trouble with the breath holds too, but I thought it was just me, didn’t know about the dye injection causing it. The tech suggested shallow breath holds and that was more doable for me. So far, I’ve only had liver MRIs at dx and one a year later. They seem to see more activity than my CTs although overall they showed shrinkage last time so MO was ok with it.
Do you know when you’ll get your results? I’m in your pocket while you wait. The waiting is so hard, and adding your worry about something new is even harder. Sending you a hug and my hopes for a good report.
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Candy,
I have had issues with the breath holds. On my first liver MRI, I really couldn't deal with it and the tech was a VERY fast on the procedure -- I thought I was going to hyperventilate. Dye at my center is administered near the end of the test via IV.
The next time I had a liver MRI, I told the tech what had happened the first time. She was very sweet, and basically overrode the machine commands and instead just talked to me through the mic. She spaced out the breath holds more. And I did fine. I would suggest telling the tech that next time -- liver MRIs are the only MRIs I've had that do those breath holds.
On your next one, you should tell the tech up front, and see if they can slow things down. also, I also subscribe to the shallow breaths theory. When you gulp in a lotta air, it makes the test much worse, plus you feel like you are going to explode.
Perhaps you were not well positioned on the table, and that could have caused your discomfort -- or the belt contraption they put around your abdomen, especially if you were tense. Hope that's what it was.
Hope the results are good.
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candy- sorry the MRI was rough. I haven’t had the breath hold issue but I always come out of MRIs disoriented and fatigued. I get that pain under right rib cage too. Sometimes it lasts for a few weeks and sometimes a few days. My MO thinks it’s gallbladder spasms. Never had gallbladder issues before. But somehow I think mine are also linked to stress. Praying no progression!!!
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Sandi - here’s to 4 years and many many more!!!!
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Grannax, Thank you. It's good to be able to learn from people who have walked the path before me.
Sandibeach - contratulations! It gives me hope after the "pretty much your whole liver" description from my GE (before the biopsy and its bc suprise)
Dee, you've had a hard time of it, and migraines on top of everthing else! I hope you've turned the corner and will continue to feel better...with great results from the trial.
Candy, I'm not sure this will be much help, but I've had 5-6 liver and abdominal MRIs...all good until the last one which was waaay not good (and almost 5 years after the last good one). I have a hepatic hemangioma, so they always pay attention to the liver, regardless of why the MRI was ordered. My MRI's have been 'fasting, with and without contrast'; I've always had a problem with holding my breath through all the evolutions, but had never attributed it to the contrast, so that's an interesting thought. I don't remember them being painful. My liver pain came and went, and I had (or thought I had) residual pain from broken ribs in the area, so if I felt pain at during the last MRI, I didn't attribute it to the scan. I'm just uncomfortable laying on my back that long and holding my breath all those times. At least the PET/CTs I have now are relatively quick - and I don't have to hold my breath!
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Hi everyone
Friday dragged myself to the CT. All went as usual. Yes my bra does not have wires. Yes you can use the port. No I don't have allergies to contrast fluid.
THen it just hit me. Incredible anxiety and panic. Took two anxiety pills and slept most the afternoon. Had dinner with my daughter and a glass of wine which apparantly put me over the edge. No medical emergency put my daughter put me to bed and went to her dad's. I have been lying here absoutely terrified since friday night. Sleeping, waking up, crying. Trying to not the sleeping pills, drinking water, trying to read. Can't face my girls whom I have disappointed yet again. But nobody understands the -what shall we call it--llong white mile? as we force ourselves into that tube. And now wait until november 5 to see if that really was the last they could give me or not.
Feel so sorry and ashamed but alo mad, alone and week . a simple hug would really get me througn. boyfriend pillow?
thanks for listening
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Arolsson, does your oncologist or hospital have affiliation with a Palliative Care team? (This is NOT Hospice.)
If so, please contact them asap. These professionals can help you sort thru all these emotions, provide counseling options, appropriate meds, support groups, therapies.
You are vulnerable right now and maybe should not be alone with your thoughts and anxieties.
I use Palliative Care. It would not hurt to ask if you could have a 1-2 night inpatient stay for respite, maybe you need rest. You need to get away, but be in the loving care of professionals.
You will find your balance and peace again. I am sad that you are suffering. It seems to me it is not who you are.
S
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Arolsson- I am so sorry you are feeling so bad right now. I wish I was there to give you a hug. We so understand where others just do not. "long white mile" That is a good way to put it. Anytime you want to talk, just PM me. I think a therapist would be good for you--- maybe you can find one in your area. Try your cancer center first. Mine does not have Palliative Care, but hopefully yours does. Or a counseling center in your town.
Just to clarify my last post-- I did ok with the deep breathing and holding breath thru the MRI. It was the breath after the contrast was given. The tech said "Now I am giving the contrast". Then the machine said "take a deep breath and hold it". I could not. I could not get a good deep breath. Kind of felt a head rush. Felt panicked for a second. Then it went away and next command to take a deep breath was ok. Tech said patients have told her it affected their breathing too. But she said HUM when I told her of the head rush.
Rosie- My MO said this MRI was kind of a baseline and to get a different look at the possible new met. The plan is to keep on the same treatment and do another MRI in 2-3 months and compare the two. That is the plan so far. I guess if this MRI shows things worse than the CT did, then the plan changes. I do not have another appt until after next MRI. I should hear from the office this next week on the MRI results, or I will call them if I don't hear from them. The result should show up in patient portal after 7 days.
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Bevjen Yes, we are fortunate to have two powerhouses in Texas. I have been a patient in both. I would still pick MDA as a first choice but feel good about UTSW as a closer/doable alternative. Do you remember the doctor's name at UTSW?
Aroisson. Why do you feel you've embarrassed your daughter? What happened can and does happen to anyone. Panic attacks happen to all of us in one form or another. It might be a different stressor for some than others. I know what trying to do "this" alone feels like. It's a whole different ball game than when my husband was alive. It's been ten years since he died. The past four since MBC DX have been an eye opener. It's so different to have to depend on my adult children and friends than it was to depend on my husband. Alone has new meaning.💞
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arolsson- I am so sorry of what you are going through - the fear, anxiety, panic. It’s so hard for others to understand even when they love us and try. If you have access to a palliative care center to help, that would be awesome. I do not. Since I started this “journey” I see a fabulous (do not settle for someone who does not mesh with you) consultant every 2 weeks and more if I need it. I also routinely take an anxiety med am/pm and buspirone As low dose antidepressant am/pm to help. Maintaining blood levels of both keeps me pretty steady but I definitely have good days and bad days. It’s too much to do on our own. We have to allow ourselves help. There is no shame in that. We are here for you but you need more to help you get through this. Please don’t ever think this causes you to disappoint someone. You didn’t ask for this, you don’t have a choice. People must understand that. The LAST thing you need is to feel any guilt at all
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Hi everyone.
Today I turned 59!! 🎂🎉
I am finally feeling better from the biopsy/clinical trial/migraine debacle and looking forward to dinner at home with 2 of my children and granddaughter. It’s good to be alive even when everything around us seems such a whirlwind of chaos. Today is a gift and my hubby and I are just chillin together watching an old movie.
The thing that strikes me hard is that I have now outlived my mother who died of lung cancer just before her 59th birthday. It’s hard to believe that she was my age and was so sick with brain mets and associated mental issues from high doses of pain meds. She was a shadow of herself, didn’t recognize me crossing the room in front of her, but did later. I just don’t want to become like that.
It all made me think that I hope I go quickly and quietly when the time comes. Since my liver is filling up with small multiple mets, the thing the docs are most worried about is liver failure. And it can come on fast.
I am processing the thoughts and turning them over to God. I still have a few treatments in my arsenal as long as my liver is working ok. My hopes are high. The clinical trial is a good next step.
It is a great day. I feel loved and cared for. I know my friends here understand my thoughts like no others
Dee
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Dee, happy birthday, hope you celebrate many more. The clinical trial seems promising.
BevJen, it looks like you and I are scheduled for liver ablation on the same day (19th Oct.). Hope everything goes well for you.
I am a little nervous about the pain after the procedure. My IR told me I’ll have considerable pain. I cannot tolerate opioids and other than Tramadol, cannot take anything else. Does anyone have any advice for me? I’ll be getting one large tumor treated, even though there are multiple smaller ones.
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