How are people with liver mets doing?
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Dear Nicole, we are with you no matter what. Good chemotherapy, if it works (should work!), might do wonders. I know all of us are not fans of chemo but every drug is a chemo (let's take antibiotics, etc.), so by embracing and using them wisely we can benefit. BTW, Abraxane+Tecentriq... I know one young woman with two small children, a mtnbc (with high PD-L1 mutational burden), who had constant progression, and had over 40 harsh chemotherapies in 3 years, and now that she got the A+T combo, she responded for the first time, and her tumors continue to shrink for past 4 months now... a very encouraging story.
Dear BvJen, wow, your family history... As you say they will find something one day. As much as I dig, I do not believe environment is causing C apart from obvious local pathogens (smoking, living near asbestos, etc.). You are right, there is no data that C cases are surging because of environmental issues. Almost every serious article points out that BC cases surge because of earlier detection. So in the end... it all is probably mostly genetic, i.e. evolutionary:/ Thanks for the video too, I'll definitely watch it. As our immunologist says, tests these days find alterations but they cannot define which genes are "driving" and which are "passengers" - this is why so many people who have certain mutations do not respond to aligned therapies. Simply these therapies do not target "driving" mutations and pathways...
Saulius
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My MRI report finally came up on my Portal yesterday. My MOs nurse told me it looks like most of my mets got smaller except for one that got bigger.
I read it and it's complicated, a hard read for me. As we all know it's hard to compare PET to MRI. It looks like they used a PET from before I had the y90s to compare. That doesn't make much sense to me.
My IR has the CD and the report but he hasn't reviewed the CD yet.
So, I'm frustrated with both my docs right now.
I think it's good news basically but I have so many questions. I don't think my TX will have to change but I don't know what my MO will say. Will my IR explain if most of what showed up on MRI is dead or dying lesions? What about the one that grew?
So, I'm in limbo. I'll make some more calls today to try to get definitive answers. 💞
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Moth - So very happy to see things moving in a positive direction. Prayers that it continues to go that way. Keep being kind to your liver
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Nicole - I can almost feel your heart pounding with all of this. It seems you have a fantastic MO who is very willing to walk slowly with you through all of this and is trying to do her very best for the best for you. That is truly a gift. Thank God you have someone who cares so much for you on this really tough journey. And she is working through all of this based on your experiences with meds, the science, and what she believes will have the greatest chance to work for you. Nothing is promised, but we keep hope, we keep faith. Remember Ps 18:6. "But in my distress, I cried out to the Lord; yes, I prayed to my God for help. He heard me from his sanctuary; my cry to Him reached His ears." God will hear you and He will answer.
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Hi Grannax. Sorry to hear the mixed message you received. I will be thinking of you as you search for answers.
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grannex- as hard as it is I would wait to jump to conclusions especially if they are using different sources to compare tumor size/status. I know my docs won’t put results up in my chart until we have personally gone over them so I don’t jump to any conclusions. As much as I know and understand, there are still things I don’t understand and would be misinterpreted by me.
I think your report sounds like great news and that is what I will hold onto for you and put our into the world. Hopefully there is a plan or explanation for the one that “grew”. If it was prior to your Y90 then I pray that the report has outdated info and the IR and MO will be able to put you at ease.
I am sorry you have to go through such mixed emotions and hope you get the answers you need soon. Waiting is the worst.Thinking of you
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Grannax- Thinking of you as you are in limbo right now. Hug from here.
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Grannax,
I agree with LFF. As you know, it's difficult to read scan reports when you've had a local treatment like Y90. My IR told me that I should mention it on subsequent scans not done for him bc otherwise it could be misinterpreted by the reading radiologist. And also, as you said, they are comparing apples and oranges when they are looking at two different scan types. My IR has me get an MRI of the abdomen/liver every three months and he only really looks at that bc he says it gives him the clearest picture of what's going on there.
I hope for you that there is an explanation for all of this including the met that looks a bit larger. Fingers crossed that you will get some answers soon. Hang in there.
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Grannax2, hope you get answers and explanations quickly!
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Thanks girls. No news yet. Maybe tomorrow.
I'm coping by working in my garden. But I have been growling a lot, too. Lol 💞
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Hope and Graditude... AMEN!!!! Thank you for that.I read it to my husband and you up lifted us so much!!
Chemo went well, I declined the Zofran for nausea due to my on going issue with constipation. I did well. I only got the Steroid and reduced dose of 8mg. I felt fine until about an hour and 1/2 after I started feeling slightly nausea and very very exhausted. but came home and just relaxing...now just a headache. We will see how it goes.
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Grannax, Adding my best wishes that the results are explained to you ASAP and that your doc (IR?) can give you reassurance that things are ok. More fingers crossed for you! 🌺
Nicole, Glad your first treatment is behind you and you’re doing ok (except for the headache). 🌻
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Nicole, I wish you all the best for this fresh start. Let it be easy and kill all of these suckers. Grannax, I am so sorry you have to live in this uncertainty. I'll pray this is sorted out asap.
Uh, our MO prescribed and half year full body routine CT scan yesterday and unexpectedly there was a vacant place, so Sandra got it for today. We see no signs (blood, ultrasounds two months ago) something could be happening but as always... who knows. Scanxiety suddenly kickin' in. Let's pray all is good... Hugs to everyone, Saulius
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Saulius..Just prayed for you both!!
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Saulius,
Thinking good thoughts for you and your wife.
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Sandra- praying for best possible news on your scan
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Saulias
Scanxiety is real. Prayers for a good report
Dee
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thinking of you and your wife Saulius.
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Saulius- thinking of you and your wife as you wait for results.
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Sandra & Saulius, hoping you can distract yourselves while waiting for results
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Grannex- how are you today?
NicoleB?
thinking of everyone
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I'm okay, still frustrated. I'm calling IR office today. My MO message is still unanswered. I have lots of gardening to do. Hopefully it will be good therapy for me. My plants don't seem to mind if I growl at them. 💞
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Leftfoot...I am good. The steroid they gave me as a premed (the only Pre Med I got) made me have insomnia so I was up but exhausted at 2:30am. I had 1 or 2 small bouts of nausea but toughed it out. Then I thought I was good so I cleaned and did laundry and then felt crappy...so I need to just relax. I have an appetite though that's for sure!
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Nicole- after a few treatmee Er mrs I hit my MO to stop the steroid premeds. I was much happier s
I feel you. I am stil weaning off of the high dose steroids they gave me while I was in the hospital. I actually take a sleep aid or else I don’t sleep At all. May housd is much more organized as dishes and laundry are done and put away every evening, my pantry is organized, my cy closet has been tidied and the at room is seeing progress. The plus BBC side of being up all night.Hang in there.
Oh- I found lemonade helped with naseau.
grannex- hang in there. Gardening sounds lovely. I want to build my own planters to start a garden in all of this chaos.0 -
Hi Sandibeach! Thanks for checking on me. I am doing fine, have just had a busy week with work and haven’t had a chance to keep up with posts. My liver markers and alkaline phosphatase were a bit more elevated than usual at my infusion yesterday. Hoping the Gemzar has not stopped working. My previous IV chemos have worked 7-9 months and I am at the 8 month point. However, sometimes my liver markers and ALK flare up for other reasons.
Nicole, I continue to be amazed by your MO’s dedication to your case. She makes a really good point about the fact that you progressed while on two simultaneous hormone therapies. I took two hormone therapies with Ibrance also. Once that stopper working, I felt pretty comfortable I had built up a resistance to hormone therapy. However, you have options in the future to try them again with other targeted therapies. Glad your infusion went ok. Great news about Tencentriq.
Grannax, I agree with some of the other posts about making sure the radiologist 1) knows and is taking into account that you had Y90 and 2) knows how to read a report of someone who had Y90. Just because the Y90 history is in your patient notes, doesn’t mean the radiologist took that into account. I had a scan after Y90 that indicated I progressed. My MO called the radiologist and the scan was re-examined. My report was then changed to state it appeared the Y90 is working. Tumors can swell in size due to surrounding edema after Y90, which means it is working. Also, tumors can develop a ring around the outside that lights up on the PET due to the radioactivity.
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JFL..that is good info re Y90 and scans.
Also, so glad to hear from you and that you have a somewhat normal life. Will you be able to work from home if your school is distance learning?
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Uh,I just came in to read this thread and am so humbled by so many best wishes. I am speachless. Thank you so much to everyone, you all are amazing. CT went well, now... waiting for results... Saulius
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I finally got to talk to both docs. IR was most informative. He's not concerned about any of the lesions that were mentioned on this report. All of those were targeted by y90. He is concerned about two areas in my left lobe that were not targeted by y90. He does want MRIs done on my liver every three months so they can be easily compared. My MO agrees with that.
The big question for me right now is are the areas of concern in left lobe new? I think not targeted means they were not able to visualize them last December during the y90.So, it sounds like they are new. Question Two. Why weren't they mentioned on MRI?
My MO wanted IR phone numbers. I think they are going to finally talk. I hope so.
Good news is that it doesn't seem like I will have to change TX right now. I think we're just going to wait until the next MRI.
Another mixed bag of emotions.💞
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Grannax,
Welcome to the every three month MRI of the liver club! From what my IR says, it's the best way to check on what's going on.
Perhaps if there is a change in the left lobe stuff over the next three months, you can utilize another procedure to zap them, such as TACE or cryoablation or microwave ablation. It's good that they are watching them so closely.
I get it with the mixed bag of emotions, but you are strong and you will get through this. Glad that you finally got to talk to your two docs, and glad that they are talking to each other now.
Thinking good thoughts for you.
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Hi Sandi, I am not a teacher but have been working from home for the last 4.5 months. My son starts kindergarten in a few weeks and his school announced they will start out remote. I live in South FL, a hot spot for COVID right now. Remote learning is the safest at this pointbut it definitely has a toll on both kids and parents. My days are nonstop.
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