How are people with liver mets doing?
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About the feelings in your livers. I had an infected liver in 1961 along with mono and was in the hospital for a month. What I felt, was a lot of pressure high under the ribs and sometimes my back. That was with a VERY sick liver, but also when they did my liver biopsy last week, I had a similar feeling under the ribs... not so terrible really. I wouldn't be surprised if you feel something... bet your docs never had liver cancer or treatment... LOL... So I think it is possible to feel something, but just a thought. I would think it would be good not bad., just means something is working on it. I know also when my husband had a brain tumor... he sometimes had swelling around the area where the cells were having neprosy... which gave him symptoms even though the cancer cells were dying. Hope it is all a positive thing for you both.
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kcoralee, Good luck tomorrow with chemo, I will be thinking of you as I am starting my dex tomorrow aslo. Tx on Thursday for me. Very anxious Hope to get some sleep tonight as light night was minimal. I will sleep better after this first dose is over.
Good luck again tomorrow, Let the taxatere kill those buggers!
Redroan
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Thanks Redroan, my dex is making me fly today... talking all the time, hyping really. I entertained Chris, the technician with crazy stories (all the stories of my past are fairly crazy, but interesting), then went to IHOP alone and shared my treatments with all there (fortunately at 3pm very quiet) and everyone loved me wildly, I think... LOL... So be prepared. At least I went from crying a little yesterday and fairly sad to super duper upbeat... I love these roller coaster rides. Suppose there will be a lot more here on. I don't mind the upbeat ones, but they must drive everyone else crazy. Get a GOOD sleep tonight... And do what i did today... all kinds of rewards, some shopping at thrift shop, a massage, a walk in the water (couldn't swim cause of healing surgery), a meal out, all good, all fun. And I feel great. Think now and enjoy whatever moment is good. Yes, I do have a husband, but he has asperger syndrome and right now is working REALLY hard on trying to be empathetic... really he is trying, but you can't imagine how hard that is for him... so I try to have my fun time ... usually alone, any way I can. He's nice, don't get me wrong and we do do things together, but he's usually not easy. Right now, though, he's being super nice. He doesn't want me to suffer and wants me to get well...
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Kcoralee, I loved reading your post. I am glad you made lemonade out of your chemo-lemon day! That must be tough with your husband and the empathy. Sounds like a good strategy to do some of those fun things on your own!
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To those of you about to start chemo, I wish you all the very best and hope that your treatment is effective in dealing with you mets.
KCoralee, I am a bit surprised that your onc has included carboplatin as a first line treatment for your liver mets. You are triple positive according to your bio and I would have thought he would have gone for a hormone therapy and targeted treatments for your HER2 + disease.
Carboplatin is a harsh chemo especially on the bone marrow. My Hb levels have been very low on this chemo. Much lower than when I was on taxol. Someone above mentioned that about restricting carboplatin to 8 cycles. I am about to start my 9th cycle tomorrow and will carry on with it as long as it is effective. There is a lady who occasionally posts who did carboplatin for over a year but did have to reduce the dose over time.
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Spring,
It was me who posted about max of 8 cycles of carbo. My onc said ot is not advisable. In all cases for me on the 4th one i wad completely anemic and my platelets level were at 10,000 which dangerously low, so they had to refuce and space the last two. The total was 6 cycles. It really depends on the individual 's body and how it reacts to the med. i hated this protocol it was the worst, plus after it i got an extensive progression.
I am glad you are doing well on it and i hope it continues to be beneficial to you.
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Kcoralee,
I loved your post ! Way to go and the best way to deal with the situation, keep it up and you will beat the beast lollll
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I made 8 cycles of carbo. My onc didn't want me to do more - she said it is too toxic. And now I'm only on Navelbin. I'm not BRCA 1& 2 positive and thought carbo will be very effective - wasn't meant to be - it just stopped the progression for a while.
Kcoralee, wish you luck with the new combo.
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Just spoke with my oncologist- MRI results are inconclusive. Now I have to try and get insurance approval for PET scan, which is what I told them to do in the first place. Now my insurance company is giong to have to pay for 3 procedures (CT, MRI and PET scan ) all to look at this one spot. Crazy. Am holding on to a thread that this is not my cancer again. It is highly vascular and doesn't follow normal met findings. Of course the same can be said for the non cancerous options. Unfortunately, it is not in a good spot to biosy as it is surrounded by blood vessels according to my oncologist. so now I wait for approval and then the scan. it continues.
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leftfootforward, I know it is hard to wait for the scans and the results.....We are here for you. Good luck!
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kcoralee,
I am anxiously awaiting to see how it went for you today. My turn tomorrow, Leaving home at 10 will have lunch and pick up a few things. You sound like so much fun .!
My 83 yr old mother is going so always enjoy being with her. I want to get my toes manicured but don't know if I will get that done.
Hope you are doing well.
Redroan
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Leftfoot,
I am sorry yu are going through this , it is nerve wrecking , i know i went through the same thing too. My cancer is vascualr as well mostly. Waiting is the worse specially when you are dealing woth insurances. Evne though most doctors know that MRIs and even bone scans cannot confirm bone mets, it confirm abnormalities but not the cancer itself. Even bone biopsies are very hard and paiful and most of the time they do not hit the exact spot.
I hope you get the answer soon from your insurance and get it over with. Then we will wait woth you for the results
. Lots of prayers keep us posted.0 -
I feel very sad today. In the infusion room there was a very sick man. His mother was with him and she looked desperate and sad. I don't want to describe more but I can't stop crying since then.
I hate this stupid disease!
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I really get it, Kiss. The infusion room can be a very sad place sometimes. [[[hugs]]]
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Christina,
I am so sorry you had to see this. It is very hard to look at a person and realise there is nothing you can do for them except be there. I pray the man gets better and for the mother to be able to endure this journey with him. Your scan is soon right ? The 8th? ((HUGS))
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sandilee, Woody, thank you. I don't know why this hit me so hard.
Woody - on 15th.Maybe this is the reason I'm so vulnerable now. If there is a progression I'll be on Xeloda and continue on Navelbin. I started to read Xeloda thread - just to be prepared for the worst. I hope for the best though. Hugs for you wonderful Ladies.Thank you!
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Kiss, we can hold hands while we wait - my scan is on the 15th also.
Leah
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Leah, good to hear from you. I wish you and Kiss good luck for you scans i hope Nevalbine did a good job on regressing . Prayers to the both of you .
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Kiss- I have been on Xeloda for almost 3 years. I am currently praying that I can stay on Xeloda and not have to move on to another drug. It has had its share of SE but they are managable. I often think of it as taking a vitamin rather than cancer meds. So if you have to move on to Xeloda, I hope it treats you as well as it has me.
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Leah, I'll pray for both of us for good results. Hang in there, sister!
Leftfood, thanks for the wishes.0 -
long overdue update... been on break from the boards since mid-November (wasn't intentional, just kinda happened)....
after a clear PET in October 2014, I went forward with bi-mx, alnd, expanders, and radiation (finished mid-Feb) all went smoothly. I remain on maintenance herceptin & perjeta.
had PET April 2015 that came out indeterminate. they'd expected surgical & radiation sites to show up "wonky," but a part of liver very unexpectedly lit-up, too. report said it could be interference from intestine activity or possibly suspicious for metastasis. basically 50/50 odds. due to expanders I couldn't get MRI to rule out progression as would usually be the case - tried US w/o success & tumor markers aren't disease indicators for me.
so, they moved up implant/expander swap date and I'll get the abdomen MRI a couple of days later - should be around the third week of June. really would have preferred it happen earlier but scheduling didn't work out. it's not been the most fun waiting period but decided I was on-board with this plan and have been trying to have fun and stay healthy. been doing pretty well at it, too.
irritating point future folks may benefit from: before surgery I asked plastics about MRI-compatible expanders (they do exist) - I didn't get them (although fwiw, they had planned to go direct to implant, so perhaps not as prepared as they should have been). I realize a tiny tiny population gets these kinds of procedures at stage IV, but am disappointed it was not fully considered. liver surgeon had advised liver MRIs every 3 months to keep a close watch on liver (so much for collaboration). can't bitch too much though - all procedures did go smoothly and things may yet prove to be fine. note to others: try to insist on MRI-compatible expanders - you know, just-in-case.
I caught-up on 25+ pages of posts in this thread (and promptly forgot most of it - chemobrain -sorry) and while I realize there was mixed news, I am so happy to read so many positive posts and so so many with such inspiring good reports! it's truly incredible how much support can be found here - congrats to you all for creating such a warm, positive environment. I consider myself still new to this and am grateful to you for sharing your experiences. I'm sorry if it had to be so, but it helps to know that many who are now doing well have had some ups and downs along the way.
hoping to report back in a couple of weeks with all good news.
tgif and best wishes for a lovely weekend!
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hi people
Been out of the loop for awhile;traveled to Minnespolis for nephews HS graduation. Haven't had chemo for 4 and half weeks. Gained 8 pounds. Lol. I was thinking I feel so much better then I have for 11 months. Briefly I thought about stopping chemo. Then changed my mind. Last year I was too sick to travel with kidney failure but chemo saved my kidneys. My sister said "please don't stop chemo" and I told her I would not. I want to live. Praying Lxempra will knock out liver mets. (2)
My next Lxempra is Monday. Had blood work yesterday and kidneys are still good and liver function normal. I see oncologist chemo day on Monday. Apparently I also have a lesion on dura in my head. Will be interesting to see what she says. I feel pretty good right now. They weren't sure if dura lesion was beign or cAncer. Last scsn supposed to help define it. I will get the scoop from onc Monday
Hoping those with scans coming up get good news. Glad penny is responding and bilirubin is coming down. Pretty power tx out there. Have a good weekend.
DianA
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Hi Diana,
So good to hear that your liver and kidney function test are still good despite the 4.5 weeks off chemo. I will keep my fingers crossed that your dural lesion isn't sinister.
It sounds like you had a good time at your nephew's graduation,too. Especially if you put on 8 lbs!
I know what you mean about not returning to the chemo. I felt the same after I had my 5 week break for my operation. I was in pain from the surgery but I felt nearly normal in other respects.
Waves to everyone else.
Spring
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spicypetunia- did you have a liver procedure that you have a liver surgeon for? I am sorry, as I can't keep up with everyone's individual treatment. I am just curious as I may have a single liver met and was looking for options other than changing my overall medicine.
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Well Hello Ladies..been a while...I read daily but my willing to type is useless...I have been on Halaven now for 5 to 6 treatments..each and every one of them have been hard...with fevers up to 103.2 and nausea and vomiting for 3 to 5 days after treatment...this last one on Tuesday OC dropped the dose down to 20...and it stilled ran me a muck...fever/sweats where I woke up soaked to the bones..at 3am shower and stripping the bed...I have out of town guest for the last 2 weeks and I have only been able to enjoy a day with them...other wise I was in bed...UGH...I have lost more weight 15 lbs...I just can't seem to eat ....I literaly force myself to eat but later just "up" it comes for at least the 4-5 days after treatment and I keep up on my Zofran/Lorazapam too...Since April 2014 till now I have lost 85 lbs...I am so tired...fighting to gain weight...
I need to get stronger going on a trip to Oregon end of this mth...a gift from the Adult Wish Foundation here in Idaho. My OC and others from my clinic, nominated me for this and I got my wish granted..I really want to go to the ocean and my son is coming with me...I just feel like this might be my last time to travel like this for a while...I really need to regain my strength back and about 20 lbs back...Other wise I have been OK...just fighting this Halvalen SE is taking it's toll..
Again..I know I don't keep up with you all individually ...but listen I read everyday...and today...I got these figures typing cuz I need encouragement or some wisdom and ideas to help me with this journey...I look like a scare crow...just saying...
I love and miss you all...I am just trying to keep my faith and hope up at this time...Keep writing your experiences with this treatment...I hope I will gain more hope from it all
Peace and Love Carla
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Oh Carla I'm so sorry you're having such a hard time.
I don't have any suggestions for you but want to send love.
Leah
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Carla- Hugs to you. You will love the Oregon Coast. I know you have tried the big guns when it comes to anti nausea meds but have you tried the scolpalamine patch? I foudn that having this behind my ear the day before my treatment and then for the next 3 days really helped me with my nausea while on A/C. I put it on the day before treatment or the night before so that I had some in my system before the chemo was given.
hope you start feeling better and gain some strength for your trip
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Hello, Freebird. Wow, it sounds so hard for you right now. I hope you can get some new ideas on eating and keeping nausea away. I hope the ocean will send cool and powerful healing to you.
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leftfoot - no apologies - I can't keep everyone's particulars straight, either.
Requested a liver consult around time of dx - onc wouldn't refer me until I'd achieved complete response. Ended up at a different facility for surgery & new onc referred me - no problem. Liver surgeon coordinated with interventional radiology & mo & recommended a fiducial be placed to mark the last remaining liver met & 3-month MRIs to monitor -Mayo Clinic. Heard good things about liver docs at UCSF & other facilities, too. It wasn't as difficult as I thought it'd be & felt good to get a liver specialist's perspective.
Freebird - sounds like you are really having a rough time. Last thing I usually want is another doc appointment, but have you tried a palliative care/symptom management doc? They can have some creative, cool tricks up their sleeves and are great resources, especially when the other docs are outta ideas.....
Your trip to the ocean sounds incredible - I love how it came about & who you're going with. Thanks for sharing - it's wonderful to hear about. You sound like a pretty tough cookie - I'm betting you'll get things in better shape & be back to looking forward to that trip with nothing but joy & excitement. Fingers crossed for an easy fix & that you start feeling better & recoveringimmediately!
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Carla, I'm sorry you are having a hard time. But remember - Halaven kicks cancer's ass. You can do it. Why don't you try a protein drink - the one used by athletes. Maybe it will be easier to digest. Hope you start feeling better. Keep us posted.
Christina
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