How are people with liver mets doing?
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Jahaage - Welcome, actually from Ontario Canada here. And woot woot for the regression. I'm doing Taxol now #8 of who knows how many coming Friday. Noted improvement on my lungs and some bone too (less meds to hold) and praying it will continue on to liver mets. For us ALL!
Cathy
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Jahaage,
I am sorry you have joined us here, but you are welcome as a member of the kindest community. Yes some ladies here did the same treatment as yours including me. We got very good results on this regimen. Six months is the usual treatment and it depends on the kind of results you get. Stopping completely the whole treatment is not an option in stage IV . They may stop your chemo for a while but not Herecptin/perjeta. You have to stay on a maintenance course. Hoping you get the best results on this combo and stay well. If you want more information about this , there is a thread here entitled taxol/herceptin/perjeta. All the best.
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Hi All. Well chemo could not be delayed so I had my first chemo of Carbo/Abraxane this morning. I remember I DID see my dr. in June, I forgot about that. And the Pet Scan was in April and fine for the liver. Dr. wanted to give Faslodex a chance to work in May,June and July and I had a long vacation planned from June 28 to July 6. So I told him to wait on the PET scan till I got back. My mistake. He did the TM test the week I came back in July and the markers were so high he called me himself and told me he ordered the PET for that same week. So he got right on it. Then he called me himself about the PET scan. He was very honest and I asked if he could operate on the liver and he said it wouldn't do any good because I have multiple lesions, one being pretty big and very active. Well today the chemo nurse got the PET results and I read them. So now I know. It was very scary. I have a 1.1 x 1.1 lesion that is "intense" and "avid" high on the dome of the liver (this is all from the Radiologist). I have another 1 cm lesion on another section of my liver. And on the back side I also have a 8 mm lesion. Those 2 are not "FGD" which I was told tonight means not active- yet. And apparently I have more than that, that are too small yet. My oncologist said this was not "sudden" like I thought. Because my bone mets kept lighting up and my TMs kept rising despite all the hormonal treatments, which he wanted to try first to not "burn out" all my chemos too soon. I had the onc. call me tonight. He explained that the lesions were probably there and not visible last PET scan in April and this was not as rapid as I believed. And that only 1, the big one was "active" which was called "avid". The other too, FGD, he says means not lighting up. He said he had to start the most aggressive chemo he could right away because not only was my liver lighting up, the report that I read also said I had more bone lesions that HAD been calmed down, lighting up again, some pretty bad. The bad ones were neck, upper left arm, upper left thigh, and Sacrum. I also have had some that aren't lighting up again in my spine, ribs, skull, pelvis, and I forget where else. In other words, my bone lesions are extensive. He answered all my questions and I know he's doing the best he can. I called when first DX'd to a "hot shot" dr. in Charlotte that is in the same big group but in another hospital. That one reviewed all my charts and told me that my dr. was following the protocol he would. So Duke would be the only other option. However, I have now had one chemo done.
I forgot all about asking him about if my cancer has changed. I will call back tomorrow and tell them to check however they can. Maybe one of the posters is right (I'm sorry I got lost in your names, I'm fuzzy now) and they can't biopsy?
Crap. I forgot. My pleural effusion on my right lung that I had at the beginning and they drew off (almost a full liter with cancer cells in June 2013) now shows a slight increase too. And I have a slight increase in my pericardial effusion. The onc. had a cardiologist look at my heart early this year and he said he didn't think the peridcardial effusion looked cancerous on the tests. The onc. tonight explained about my pleural effusion,he said yes, I do have the cancer cells in the lining, but NOT in the lungs.
So I guess, I'm a mess. And it's my fault for ignoring all those aches and pains in 2012 when it probably came back as stage IV. I wasn't honest with my onc on my visits. I kept thinking it was from "old age" or arthritis. Stupid me.0 -
Wandering/ hang in there. And please don't blame yourself. Cancer is sneaky and hides so well. That's why it's called no evidence of disease. Just because you can't see it doesn't mean it's not there. So please don't blame yourself. You are in the thick of it now but you have a plan. Sounds like your team has thought everything through. Andre like to think that some of those small rumors that didn't light up might be dead thanks to your previous treatments. Ice been working on reframing things. I was told the first time I had liver mets they couldn't help me. Medd worked and the second time around they cold.so I have hope for you. One step at a time.
Hugs
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WanderingSpirit, please try to let go of blaming yourself. You did the best you could. Move forward from today. You are doing what you need to do by getting this chemo. It's ok to relax and let your doctors take the reins and manage things. It sounds like they are on it. Maybe you can pick out some music you like to listen to during your infusion, collect some makeup or scarves if you enjoy those things, plan a visit to a botanic garden, or whatever will mean treating yourself kindly right now. Think of us bco friends when you are in the chair. We are sending you loving thoughts.
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Hey all,
I'm newly diagnosed with a single liver met--been Stage 4 and NED since 2011 when I had a single sternum met removed and did six rounds of Xeloda. I have a PET scan Thursday and I see my onc on Friday. The biopsy says it's no longer estrogen-positive, and I've been HER- since the beginning although i know that can change too. This waiting stage and figuring out the treatment is so hard! Today is the day I get to talk about this all day on the phone--oh, joy! Normally I have an excellent attitude but this morning I am PISSED. At the same time I believe that God is still God. Just feeling massive fear and sadness. I know our thoughts and mindset are so important but HOW do you turn off the dark thoughts and move forward?
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Super13...oh boy...I think we can all relate. This disease is so nasty. You're right...the waiting is the hardest part (isn't that Tom Petty...for the younguns, he's a singer..lol). My guess is you'll have vital info today...then you can move on & start blasting tumors. To know you're doing what you need to do to live helps occupy the space where sadness hides. There is hope...we'll want to hear your tx plan.
Wandering...wow..thanks for all the info. Definitely sounds like you're being well taken care of & I'm sorry that I was worried about your dr being an absent team player. Ditto to what sisters say about the guilt thing...just isn't valid! This is the most sneaky, crummy thing known to mankind! You've got lots to focus on now...and we're all here to watch you send tumors packing. My onc told me my liver mets were slow growing...which seemed odd because in 6 months time, my tumors went from not visible to 1-8 cm. Who knows what's cookin in there. I'm hoping your ses will be mild to all parts of your body except mets!!! Stay strong & we're with you all the way :-)
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Thank you all so much. I called my onc back today and talked to the nurse. She spoke to him (he's on call today and super busy) but answered all my questions about "status change" and the nurse wrote it down this time,lol. He said when I was first Dx'd with mets in 2013, they drew fluid from the lining of my right lung, almost a liter. The cells tested were exactly the same as they were when I had breast cancer and a breast tumor in 2002. ER+, PR-, Her2-. And I had lesions all through my bones at the same time. So I really had 2 mets back in 2013! He said when mets first appear that's when status usually changes and that's why he hasn't tested the liver, which is brand new. He said it's unlikely my status would now change after having pleural effusion and bone mets. And that he didn't want to put my liver and body through a biopsy that wouldn't do any good and instead could harm me. I'm 56 and the mets are now in my pleura, bones and liver.
But he is glad I research and question and will always answer any question I have and discuss treatments and options with me. I feel much better now. He's on a well deserved vacation next week, and I see him on August 17th so I can wait. He said if I have any concerns while he's gone, to tell his nurse and the on call dr. can help unless it can wait till he returns. He's in his 40's and a former Army doctor. His specialty is hematology oncology but he's a whiz at breast cancer as well. He gave me many years when I was stage IIIA back in 2002 that no one expected me to have, by the way he treated me.
I'm also on edge because most don't know me, so you don't know this. I have 3 wonderful children: a daughter who's 30, married with 3 children (my grands) ages 1, 3 and 5. A son who would have been 23 in May and a daughter who turned 21 in May. I love them all dearly as they are the best children you could ever ask for and the nicest, kindest people you'd ever want to meet. They were with me during my first cancer, I was a single mom for 9 1/2 years before I remarried in 2011. Last year, my son and youngest daughter who were both in college moved out together into a house their father, my ex, rented to them. Well when my son was 22 years, 2 months, 3 weeks and 6 days old, on August 1st, 2014, he had a terrible accident when he was home alone and passed away. This Saturday marks one year since he went to Heaven. He is my heart. He is a great son, never gave me a minute's trouble, and was graduating college in December with a degree in Anthropology. He was going on to get his master's as well as work for the FBI. He had 2 classes to take in the fall, just 4 credit hours, and they were electives. Instead he never made it. The university awarded his degree posthumously last December under the provision they have for this. If a student has good grades (he was 3.6), and is so close to graduating (he had completed 116 of the 120 hours required) and was in good standing (his professors praised him), they award the degree. His father and I accepted on his behalf. He earned every bit of that degree. That's not the reason I miss him, not for his intelligence which he had in abundance. I miss him for HIM. He is the kindest, sweetest, most loving, most compassionate, funniest, wittiest, finest man I have EVER known. I will miss him every second until the day I die, when I know I will see his handsome, smiling face again.
So excuse my nervousness over this stupid liver mets thing. I have already endured the worst thing anyone ever could. I am not saying this to get sympathy, but to explain my jumpiness, and to honor the best man I will ever meet, my son Josh. So this cancer is really "no big thing" in the scheme of my entire life now.
Thank you all for your kindness.
Wanda0 -
Wanda... Your story brought tears to my eyes! I will definetly be thinking about you especially on Saturday! I admire your strength and can't begin to imagine what you have endured. Prayers for you and your family!! I am sure Josh is resting peacefully with God and looking after you!! Hugs!!!
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Mdillard04 thank you so much for your kind response. I really appreciate your prayers for us all as well. One year is seen as a "marker" so often, but when you lose a child, one year isn't the end of a mourning period and grief. The mourning and deep grief never stops. I read that as much as you love someone, that's how much you will grieve their death. So this means my grief is as endless and as deep as the love I will always have for Joshua. I bet Josh is pretty busy in Heaven and I bet he's checking in on me too like you said. Thank you again for thinking of me and your prayers.
Love and hugs,
Wanda (N.C.)0 -
Wanda ... so very sorry for your loss.
I'm beginning Taxotere next week after Gemzar failure ... major progression in my liver. I was on Taxol for 11 mo back in 2013-14; but, understand this is a tougher one. So I welcome any experiences & tips you can share. I'm getting weekly doses along with neupogen, which I've never had. I have the claritan ready.
Thank you.
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Syrmom
I had taxotere back in 2002. It kicked cancers ass. Similar to taxol. very powerful drug. Here's to killing the cAncer in your liver. 👍. I believe SE similar to taxol. Prayers this one will work for you. Taxol stopped working for me after 10 months and started Lxempra. Which is used when taxol fails
Only best wishes
Diana
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Gives me hope Diana! I just completed round three with taxotere. I can feel it working. My right breast is much softer and the limp in my axillary is gone. One more round to go.
Liver enzymes look good and no pain. Would not know I had liver mets if were not told.
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Great news freyga. I too can tell when a chemo is working past the SEs. My body feels better and blood work good. When chemo is working the tumor load in your body decreases. Even though the SEs are difficult the body doesn't feel as sick with cAncer. 👍
My liver mets 2.5cm and .6 mm were found on CT. Liver enzymes had always been in normal next scan after 2 more Lxempra 👍👍
Best to all.
Diana
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Syrmom,
Happy to hear from you, i am sorry Gemzar didn't work for you , it failed me also. I had taxotere in 2011 it is a tough chemo , very much like Taxol . But i was on every 21 days so i guess it will be tough on weekly. I gained a lot of weight, neyropathy , water retention, and low white blood cells . Keep your feet well hydrated after treatment , use petrolium jelly (vaseline) it relieves the tightening you will feel in the feet. Warm bath helped me. There is also some bones pain. Of course each one has different side effects. It is a good chemo for cancer , so i hope it will stop the progression and and stabilize you. My prayers are with you. Hugs.
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Oh Wanda...my heart aches over your losing your precious Josh...a very fine, young man, who surely would have continued to make you proud. We lost my brother in an accident when he was 26...the same amazingly bright, fun, kind, thoughtful young man. Not a moment goes by that I don't wonder what his life would've been, who he'd have married, the kids he would've raised...he was my baby brother. But being the parent...having given birth to this child...I'm so sorry...and yes, this adds a whole different perspective to your fighting for your own life. You are loved...and as we care for each and every sister here, I'm glad you are here so that we can listen and help, and listen some more.
SyrMom...you're going to do this, girl!!! Freygea...woohoo...so glad you feel your body responding!!!
Woody & Diana...so thankful for your wise words...we're do blessed to be cared for & nurtured by each other. XOXO
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syrmom - I know you're not looking for the p/h part, but I gleaned lots of great ideas for managing taxotere SEs from this thread: perjeta/herceptin/taxotere
we all react so differently, so I wouldn't expect you to have these problems, but here are some ideas just in case: -- tons of water. I used a 1.5 liter bottle & made myself refill it a minimum of 2x/day. could really tell the difference between the days I was well hydrated and the days I slacked. especially helpful w/ gastro issues/edema. -- kept my nails dry & short (latex gloves whenever I was in the kitchen/cleaning; thoroughly dried my fingers/toes after washing). -- super-mild soap and lotion for absurdly sensitive skin. -- neosporin and/or aquafor for inner nose sores. a humidifier helped more than I thought it would. -- 'magic mouthwash' for mouth sores (mine was a mylanta/benadryl/lidocaine rinse. this site has a bunch of recipes for rx's ) been told if the rx is just for the liquid lidocaine part & you mix the rest at home insurance will cover it. -- heard this helps w/ metallic/icky taste: mberry tablets (my onc was fine with them) temporarily make savory/sour/spicy things taste sweet. helpful for obscuring the nasty/metallic taste. the 'kids' call it flavor-tripping.
-- neuropathy: I managed it well with quite a large dose of gabapentin, supplements, acupuncture, gel inserts in super cushy sneakers. infusion center had frozen mittens & slipper-type things. dunno how much good they did, but I used them when they were available. others brought their own frozen gel packs from home. that's all I can think of for now. I know there are many more suggestions in the thread linked above. some folks say it's super harsh, others didn't have such a hard time with it. I hope tax is mind-blowingly effective for you & your liver and surprisingly easy-to-handle!
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Ronnie, miss you too
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Thanks to all of you for your support & suggestions, I truly appreciate it.
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Wanda - My heart goes out to you. No words can ease the pain and loss you feel. Just know we care and your right, in a mothers eye's ... her life, in comparison to losing a child. No comparison. They say time eases the pain but it's been almost 8 years since I lost my sweet, loving husband. Our wedding son came on the radio the other day on the way to see my MO and man I just started to cry. So don't worry about healing now, you must grieve, no matter how long it takes. It may take Forever but I pray for you it's not as often and gets a little easier.
Cathy
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Woody - I just talked to the drug store who is working on getting an emergency supply from the manufacturer of this injection we spoke of. It is called Relistor. Now just hope they get it for me without waiting till Aug. 10.
Cathy
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Cathy, i hope they get you the meds soon , so you can get relief . Prayers this treatment will kick your cancer to nerverland.
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hi lovely ladies, just checking in on the day of my second chemo session. Thought I'd been doing OK until a couple of days ago started having sharp, stabbing pains under my ribs front and back. Onc told me this can mean one of two things - either that tumours are growing or that their blood supply is being cut off and they are dying. Given that my TMs are down, bloods are all good and kidney function "better than a lot of people's" she believes it is the latter case and suggests cautious optimism at this early stage. The pains are still there but I'm visualising a Kalashnikov in my liver shooting them to smithereens and I feel better!
Can't tell you how this forum has helped me over these first few weeks. I was in a really dark place just a month ago but your information, support and optimism has really helped me to put things in perspective and feel I'm not alone in all this. Love to all and have a good weekend.
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Oh Isy that would be great news. Let's smash those mets to smitherines!
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Isy,
I hope it is the latter cautious yayyyyy! I hope they ate soon blasted to no man's land.
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Hi, Ladies!
I've been trying to read and keep caught up with how everyone is doing. At one of my last posts, I reported that the 4 tumors in my liver could no longer be seen on scans! That was in May. My onc told me I could go off chemo (Navelbine) and we will scan every three months or so. I went to see him last week (two months) and from the blood work and exam, he wants to see me again in 6 weeks and then see about a scan. Of course, I'm thrilled not to be taking chemo, but a bit nervous that doing nothing will allow the tumors to grow back. I've been feeling better and most of the se's are going away...I can actually taste food again! Woohoo!!
My more pressing problem at present is my emphysema. They say there is no cancer in my lungs, but the emphysema has progressed significantly during my chemo treatments. I am on oxygen 14 hours a day (I still work full time and just take a small portable bottle for "if needed" times). Once I come home I am on oxygen until heading for work the next day. My latest bad news is that they don't want me to fly...this means no trip to see my kids and grandkids. I'm tring to work on my husband to do a road trip, but he's a stubborn man. Wish me luck and send prayers that he will change his mind.
I have no one to blame but myself for this disease...I was a smoker for 40 years even when told I was developing emphysema. What is it Forrest Gump said? "Stupid is as stupid does!" lol Anyway, I'm trying to do all the pulmonary doc says and also what the onc says and we will see how long God continues to bless me and let me hang around with all of you!
A big welcome to all the new posters. You've certainly come to the right place...as many of you have already found, there are wonderful ladies who share their wealth of knowledge as well as their kindness, love and encouragement. I promise to do better and will get caught up with everyone in the next day or so. Hugs to all!
Debbie
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hi Debbie, great to see your post and to meet you. Our dx seem quite similar. My liver mets are more or less being classed as triple neg as ER status is less than 5% though different people seem to have different views on this. Hope I'll be doing as well as you a year from now
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hi Debbie and all,
I saw my onco yesterday. The PET showed only one met in the liver but two lymph nodes up behind my collarbone also lit up. I have a port installed on Tuesday and start Gemara and carboplatin on Wednesday. Can anyone tell me what to expect? Thanks
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Isy - I sure hope so, too! Navelbine worked really well for me. They tried Xeloda, but I had one of the rare side effects, so we went right to Navelbine and it kicked those liver mets to the curb! lol
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Hi Sueper. I'm on my second cycle of GC. The first treatment left me feeling very nauseous. They prescribed lots of stuff for nausea, and I gave myself a couple of good pep talks; and week 2 was much better. Week 3 was my week off and I felt great and food tasted normal. I started cycle 2 Monday. The week has been ok, but I've just spent 2 entire days in bed. I don't know if it is the treatment or if I am depressed. I've enjoyed the rest and I think the treatment is quite tolerable, especially considering I can see it working.
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