How are people with liver mets doing?
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Hi, Candy,
Just some thoughts from my own experience, so no research to back me up on any of this. First, they can't zap what they can't see clearly. So the sub centimeter ones (of which I still have between 3-5) probably wouldn't be treated via cryoablation or microwave ablation. But you can only know for sure if you talk with an interventional radiologist. When I initially discussed my situation with my IR, we were talking about chemoembolizaiton, and he had said that he would only do a few lesions at a time and then go back in in a couple of months. When I asked him how long this would go on, he said -- as long as you and I agree, and you can deal with it. Some people can't deal with continuing these kinds of treatments, and some people can. Also, he has told me that even though microwave ablation was my first treatment, all of the other local liver treatments would still be open to me in the future. So there's two bits of anecdotal evidence that I think address some of your concerns.
Re cost: I don't know the answer to that. I have had no out of pocket costs, but I'm on original Medicare with a supplemental Medicare plan. But I don't know what the situation is with other insurances, and sure, that's something that you would have to investigate.
As for progression free survival or overall survival, I don't know that I've seen these stats. I forged ahead with my first treatment bc I was scared to death about liver mets. My feeling is that my bone mets probably wouldn't kill me, but frankly, my liver mets might. And so my thinking was that I was lowering the overall tumor burden in my body as well as making any other liver mets "quiet." It's not something precise, and this hasn't been done for that long with bc mets. But that was my reasoning. Everyone has to make their own decision in that regard. And yes, you can have issues with these treatments for sure. And each treatment, at least in my experience, can be different in that regard. My first, in July 2019, was pretty smooth but I still had about a 2 week kick in the butt. My second, in October, really did a number on me. The one I use had last Friday seems to be different from both -- I feel pretty good and do not have the overwhelming tiredness of the other two times. So again, just anecdotal info.
Hope this helps. Please feel free to PM me if you have other questions.
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so my "bites" - skin condition is definitely back. I spent the morning crying as it's definitely a sign the treatment is not working. I haven't been under any stress lately as everything with. my mom has been really good. anyway ...I go for the Y090 mapping tommorow and see my MO on Tuesday.
I am. running out of options ladies...and I am upset.
PS: my liver has been hurting in the spot where that biggest tumor was the way it hurt before I started this chemo ......so that is another sign it is no longer working.
HopeandGrad.....need your prayers right now.
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hugs, Nicole
Let us know what oncologist says ..
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Nicolerod - you have been through so much. I’m sorry for the bites. Honestly you have sounded a bit nervous about the y-90. Maybe that’s where the bites are coming from.
Suggestion- when they y-90 map they will use a ct scan. They can tell if your tumors are growing if they take a minute to look. It is not a diagnosis scan, but if there is a big difference from your last scan the IR will know. Try to ask him tomorrow if he will check for noticeable growth and report to your MO.
I tell you this because that is what happened to me. My tumors grew and my IR actually told me at y-90.(with the disclaimer that it wasn’t an official scan but it was noticeable growth. ) that was when I was on Doxil. I stopped doxil after only 2 treatments because the growth was fast- good thing I had y-90 to whack-a-mole those bigger ones down.
I hope all goes well tomorrow. 🙏🏻Try to keep your hopes up!
Dee
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Thank you Dee.
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Bev, you really do have a proper handle on your treatments, please keep sharing as your experience helps us all!
Nicole, hope you can get to the bottom of these ‘bites’... having a bit of an issue with lung stuff and breathlessness myself I’ve also been tying up symptoms with the cancer.... although I don’t think I’m actually right some of the time.0 -
Dear Nicole, what a good advice from Dee. Wish you well at the mapping. I just cannot believe how resilient these diseases are but I still hope your "bites" is something else this time:/ Saulius
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Hi all I just got home...very long day. Not so good news..but not horrible
So the IR cannot get all 3 tumors because they are not all connected by joining arteries. She will get the 2 oldest and biggest. BUT, she did map out the 3rd already and it turns out she sees an area of the cryoblation that looks to be alive (my word not her's) its on the edge. She is EXTREMELY thorough she was a radiologist and is expert in reading the scans and reviewing etc.....we discussed about the uptake on that being non-existent she explained that its not that there is none (on my prior PET) but it's what Radiologist when reading, deem as low to none. When its under a certain about they don't really consider that growing or active (can't remember her wording) So I will go back next week (don't know the day yet) and she will get the 2 biggest oldest tumors. They have not changed in size since my Oct scan yet...so even if my chemo isn't working (since my skin condition is back and that is usually the sure sign for me) they havent grown in the past 5 weeks. So she then I come back in 6 to 8 weeks and she will get the 1 tumor and the cryoblated area. She will do Y90 again, but I will not need the mapping bc she already did it...so thats good. I asked her if the 1 tumor does grow in that time (the next 6 -to 8 weeks) can she get a biopsy ...she said yes. So I have a lot to talk about with MO tomorrow.
The "not so good news" is that the cryoblated area seems to be active again.
I am very tired bad headache but otherwise just grateful to God for covering me.
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Nicole- Sounds like good news that she can get the 2 oldest and biggest ones. Zap them to oblivion. But with no change in size from Oct scans and uptake non-existent, then sounds like you are stable. And you said your chemo is not working due to your skin issue. Forgive me, I do not understand. Yes, get them zapped and get rid of them, but sounds like you are stable for now. Forgive me if I am not understanding right.
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Nicole,
I think it's good news. See my PM message to you about the cryoablated area. But the fact that she doesn't see growth may mean that your "bites" are indeed very sensitive to stress? As Husband (I think) said, maybe you were more stressed out about this than you thought? On balance, very good news.
Bev
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Nicole, glad your IR has a plan. Hope your headache goes away soon
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Thanks Ladies...
Candy if you look back a a few pages on here...I mention about this skin condition that I have for the past 2 and half years...I had it a year before my Stage 4 diagnosis...after 6 dermatologist one finally said its just a hypersensitivity, my bodies way of reacting to not "liking" the cancer. The ONLY time they have gone away in 2 and half years is when a treatment works on my cancer...and I have only had 2 work...Ibrance/let/Faslodex worked for 3 months they went COMPLETELY away...then month 4 they came back..and I swore the Ibrance/Let. stopped working...so we scanned and sure enough everything grew back. Now on Eribulin the same thing..they went away completely away since Sept...and now..this past week they are returning...slowly...so I "BELIEVE* the Eribulin may not be working anymore...
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Nicolerod
Glad you are home. Hopefully your MO can give you some insight tomorrow. Sounds like you have a careful and thorough IR. Rest well.
DEE
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Thank you Dee... Yes...about the IR...I have to say...I actually am liking her better than my IR at Hopkins and that guy was the Chief of IR...
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Hello!
Has anyone progressed on Xeloda?
If so, what was your next treatment?X
Lee
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Dear Nicole, I think these are good news, as you will get a very effective treatment soon, and everything will be under even more control. Please rest and keep us posted, Saulius
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- Hi Leee, I have been metastatic for 5 years and have had liver involvement for the past two and a half. I was on Xeloda from October of last year until August when I discovered that I had progressed. As ypu The next line of treatment is very individual. I am now on Taxol because I had never had it before which really surprised my current oncologist as it is one of the front line metastatic chemos. Hopefully it is working for me as I'm finding it to be very tolerable except for the neuropathy. I have scans in January and I'm hoping to have good news to post!
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I don't mean this post to be in any way shape or form confrontational or judgemental, but every time I see someone post- with the best and kindest intentions because we all love Nicole and want to cheer her on -that NicoleRod's skin issues are psychosomatic or something other than what her educated observations of her own body and disease symptoms over 2+ years indicates, it really bothers me and brings out the protective Mama Bear in me.
As women, most of us have experienced multiple occasions in which our concerns and educated observations about OUR bodies were dismissed by family, friends, and medical providers.
I have seen so many posts by Nicole where she had to defend and explain again and again why she is concerned when she gets this rash. It clearly upsets her and I don't think she should feel like she has to defend herself constantly.
We need to listen to her and respect her observations. Commenting that it may be something other obviously does not comfort her, even though that's the intention.
And Nicole if this post in any way stresses or offends you please let me know and I will delete it. I adore you as does everyone else on this forum.
Katty
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Leee, I did progress while on Xeloda. My next line of treatment was Taxol. Although I was reluctant to start IV chemo at that time, I found Taxol to be an easily tolerated, effective treatment. I don’t know what treatments you have been on, and your next treatment could be very different. Is Xeloda failing you?
Hugs and prayers from, Lynne
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Katty... I feel like your "little cub" right now
. Thank you for that. It definitely didn't offend me. I totally understand your point. I also understand everyones as they try to be encouraging and I guess their version of "positive" to try and have me consider that it might be from something other than progression....though I know in my heart ...it is not. I am at a point now where the proof is SO EVIDENT... like you and I said...2 and Half years of this I pretty much KNOW what it means. I almost hate to even post about it...because I feel like I am just complaining...rather than venting to the only people in my life (all of you) that can TRULY understand what it means to not only live with this disease but the horrible feeling of knowing you are progressing and yet another treatment is not working. At this point I can not even feel happy when something does work...because that has only happened 2 times for me and both times it stopped right after the 3 month scan.
Right now my "bites" or skin condition is not really bad (like the pic I posted a week back to Saulius) its just starting...so its mild I have a bout 5 of them...the more the cancer grows..the worse it will get.
. I see my oncologist today I am sure she is going to have me stay on the Eribulin till at least January until we can scan again...right now there are no NEW tumors in my liver I know this because the IR didn't see any yesterday...I NEED a new biopsy and cannot get one unless we have a live new tumor...so I will have to wait for that. Katty thank you for your support...it does help when people see what I am seeing and see it for what I KNOW it really is. Thank you.
LEEE...after progressing on Xeloda I went to Doxil...then Eribulin...
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Dear Kattysmith, you are right, thanks for your thoughts. For sure Nicole should not be in this "defending position" and her experience with her body is more than convincing. I am really sorry I was one of those "doubters" but actually I never really doubted her, I just wanted to be comforting. I am happy these forums have people like you who bring us back on track. Thanks again, Saulius
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Saulius...we all love you!!! You are a blessing to our community! (((hugs))))
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Nicole - you are in my prayers. He hears us. It’s hard for us to understand His plans and we are not intended to as they lie beyond our earthly comprehension. Bu we keep faith in Him.
For we walk by faith and not by sight.0 -
I too was not trying to be a "doubter", but trying to point out that the skin condition may be something other than progression. Especially with the stable scans (the way I read the post).
I posted on another Thread about my recent unexpected weight loss and fear it could be cancer related. Some posted that maybe it is my nerves/ anxiety of upcoming scans. I know they were just trying to point out that the weight loss could be something benign. I wonder if that is the case... But I was not upset with their hopes for a reasonable cause.
I am sorry. I didn't intend to be a "doubter".
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Candy...I don't think anyone thinks you are a doubter. You pointed out your recent weight loss and concern it could be from cancer progression...but...Is this something that happens EVERY SINGLE TIME you have progressed?? Is it also something that was happening before being diagnosed Stage 4?
For me...as you can see This skin condition was not only finally diagnosed by a dermatologist after 6 of them couldn't figure out what it was from...but its was there for the whole year and half before my diagnosis was official but I did have Stage 4 because I had all the pain in my sacrum all that time. The skin condition started at the same time as that. Then to futher that fact it has only gone away 2 times in over 2 and a half years...that was when Ibrance worked for the 3 months and now with Eribulin working...when it came back month 4 we scanned exactly 4 weeks after scan that showed Ibrance was working, we scanned bc my MO at the time took my concern about the skin condition serious and sure enough everything grew back.
So I would say its a little different than if you or someone or even me has a one time symptom and thinks its progression.
I hope I explained that well and you understand. Also I don't think Katty was being offensive to anyone or mean..she was just wanting everyone to understand my concerns for what they really are...not something they might be like a 1-off situation...
We all need and want to feel validated...and more often than not, none of us can get that in our life/friends apart from here. So ...when we come here we need/want that. I think Katty just felt bad bc it may have seemed that some were not taking my concern for what it really is/was...but instead just trying to make me feel better in thinking it was stress...I think she especially felt this since my original post was quite long and explained in depth why I was at this conclusion. I get that we all want to make each other not worry , not panic and not feel bad...so we try to suggest other things so they don't worry but thats not always the best thing bc it leaves the person who posted concerns feeling like everyone is brushing off their legit concern...ya know?
Anyway...no one is mean or being mean or mad at any one here we all love and care for one another...It saddens me that anyone would think Katty was being anything less than really genuine and concerned for a friend here...she was just trying to make us all aware that maybe we need to just take peoples concerns for what they really might be and validate that person...instead of trying to insist it could be something else.
I too am totally guilty of doing this I am sure.0 -
Nicole--- I pray the best for you. That is all I am going to say. I do not want to upset you further.
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Candy...I edited my last post I hope you will re-read it. and I am not upset with or at anyone...I am really not..and I don't think I sounded like I am so I am a little confused why you think that. I am upset at my darn BITES!!! and the fact that I may again have only gotten 3 months out of a treatment...but such is life...or MY life anyway...lol .
You and everyone here are dear friends to me and I would be lost with out you all!
xxx ooo
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All, I didn't mean to open a can of worms and I certainly want comments and suggestions about any issue I'm having. That's one of the reasons we are all here whether we are mostly lurkers like me or those who spend so much time helping others on these boards.
I just felt that this was a unique situation because Nicole had explained it in depth so many times and was sounding increasingly frustrated. I know that everyone who has commented has done so out of love and concern and the total aim was comfort. I sincerely apologize if I made anybody feel like I was finger pointing because it honestly wasn't my intent . I don't know what I would do without all of you.
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Nicole - please always feel free to post what you are experiencing in hopes that someone else might know something about it or what might help. I also have a very bothersome skin condition, not cancer related as far as I know, episodic where sometimes I don't notice it much, other times scratch myself to bleeding. Know enought that there is not much I can do about it except apply lotions/creams. I do get frustrated when DRs seem to "poopoo" concerns. Fortunately the ones I usually see do not do that, but I have experienced it in the past. Sometimes they have said they do not have an answer, which is discouraging, but at least they are acknowledging me. I sometimes think there is a lot more information/knowledge on cancer, cancer treatments, SEs than we really know because it is too hard to synthesize. If all the "data" from patients, treatments, success/failure, SEs, what helps with SEs, could be be analyzed, maybe we would start seeing more answers.
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Grannax, I am just popping in to let you know that I am thinking of you. I hope that you are beginning to feelbetter and that you bounce back quickly. I enjoyed seeing the picture of you with your granddaughter and grandson. They have both grown since the last time I saw their photos.
Hugs and prayers from, Lynne
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