How are people with liver mets doing?
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Leah,
Welcome back it's been a while! I am sorry for the failur of nevalbine. I hope on doxil, you will get stable,. It's a harsh chemo.you would be tired. Praying and hoping it will bring you good result. When will they scan? keep us posted.
Prayers!
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Leah...like Woody, I've wondered how you were doing, but I take breaks from typing & understand it completely, especially if you're exhausted...this cancer-busting is hard work. It's interesting to hear that Navelbine had been working...so why in the world did it stop???? Million dollar question, I know. I'm praying too, that doxil will work wonders.
Ella...my onc said immune therapy is in his pocket for me...so please keep us informed. I pray something that sounds so hopeful, and isn't so damaging in the process, is soon to be the good news we've needed for way too long!!!
I'm sorry to not see others' news...sending healing thoughts & prayers to all.
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Hi Everyone,
I've been on a downward spiral of not having any luck with chemos since I was on a trial of Taxol, and Reolysin last year. Both Halaven, and Xeloda failed for me. I just stopped Halaven, because the tumours in my liver have grown again. This is the first time my liver function is not in the normal range. I may not be my former pre-mets self, but I still feel I have fight in me.
My onc now seems to be trying to push, "the talk" on me, and when I pushed back (gently, yet forcefully) she threw around maybe Navelbine, it would be "the only chemo left", or maybe a few trials, but my now slightly struggling liver, might count me out for those. I was a little shocked. It used to be a "bag of tricks", and she has never suggested another biopsy so see if my status has flipped either. I read on these threads of many, many chemos that our mets sisters go through, and often they will find a new one that works for them. I certainly haven't tried ALL of them.
I feel kind of defeated, and silly for still wanting to have hope, and wanting to fight. Looking for any advice if anyone of you who have experienced this as well. I see such inspiration, and hope in these threads, that I feel I have a right to keep fighting as well. Just frustrated with the system.
Thank you!
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Hi Woody, was thinking of you I remember you said your next scan was in August, have you had it yet? Hope everything continues to be good.
Janey, I'm a new metster myself so don't have any experiences to describe. But you're right, the ladies on here are so knowledgeable, someone will be along to reassure you, that there are plenty more treatments to try but from what I've read here navelbine has been good for a lot of people.
I'm doing fine EXCEPT peripheral neuropathy is getting quite bad and not improving between treatments. Onc seems more worried about that than my liver at the moment! So he reduced my last dose by 25%, he had put me on a large dose, and see if it improves. Am also going to try some B6 and B12 supplements which are supposed to help.
All the best to everyone from Oz (spring finally on its way)
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Janey,
I am sorry you are dealing with failure of treatment. But you are right it does not hurt to want to hope , stay and fight.
Instead of your onc trying to push for " the talk" tell her you want a new biopsy stat. I got the talk personally by my wonderful onc but i had already send the specimen for testing and it came back changed and frankly i believe it was a miracle and God sent. Since last november i have no evidence od disease. I thank God everyday for his inspration.
If i were you i would push in this direction, it may be the same but it also may have changed. If you are not comfortable with your present onc decision the seek another opinion.
Keep us informed.
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Isy,
Longtime, but i am glad you are well with abraxane, sorry about the neuropathy lolll we are now neuropathy sisters. I am using cymbalta since two months , my neuropathy is better thank God. I tried taking neurobion it is a B complex supplement but it didn't work.
My PET was schedulled for monday , but now it is put on hold till either tuesday or wednesday for lack of nuclear injection loll. So i will wait few more days and of course i will post as soon as i get the results.
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thanks woody I'll ask about cymbalta also. To be honest don't have much faith in vitamin supplements, they usually take a long time to make any difference. Does the cymbalta just mask the symptoms or does it actually repair nerve damage?
Good luck next week I'll be thinking of you,
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Isy, cymbalta is an anti depressant but which lessens the effect of neuropathy. There are no known treatments for neuropathy. But do not be afraid because with all the treatments i had which caused neuropathy i had an EMG done to see if there was any nerve damage , there isn't but i do have a mild neuropathy. Cymbalta relaxes the nerve so does Lyrica but i prefer cymbalta. I started on 30mg then on to 60mg. I am doing well so far.
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Janey, this is your life and no one else can decide when you are ready to stop fighting. I agree to push for the biopsy. Also, there are many other chemos to try, regardless of whether your tumor profile has changed. You never know which one will be the magic potion. If need be, get a second opinion or new doctor. Make sure to communicate that you fall in the "keep plugging and chugging along with treatments" category of the spectrum. Maybe some people don't have the fight in them but you do and your treatment should be guided accordingly.
Isy, I started Cymbalta for joint pain from treatment but I have noticed that it helped my neuropathy as well. 6 of my fingers went numb in the tips after I started cancer treatment. After I started Cymbalta, that has disappeared, along my the worst of my joint pain. I understand it's mechanism for helping with pain - increases serotonin and norepinephrine levels in the cells. However, I don't know how it helps with the non-pain related symptoms of neuropathy.
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Hi, I'm back! New problem! I have a question. I started Carboplatin/Abraxane 4 weeks ago. 3 weeks on and 1 off. On my week off, I began to lose my hair, thinning out, not in patches. This past Monday my husband took barber clippers and clipped it to bristles.He shaved my hair that night because the bristles drove me crazy. I shaved on Tuesday and Wednesday too. Then Wednesday night my head was COVERED in a red rash and itchy, burning red bumps. I saw my onc's PA on Thursday who wasn't concerned, gave me a RX for Keflex for 7 days, and told me to put hydrocortisone cream and Benadryl on my head. It's now Saturday night and no change. I was told not to wear anything on my head. I look like Frankenstein. My onc is very busy according to his staff, I feel that they think I'm whining. I go this Monday for my 2nd cycle of chemo, 3 weeks on, 1 off.
What should I do? My head is painful, itchy and embarassing. I look and feel terrible. Maybe I should see my primary doctor because my onc is really, really busy and it's expensive to see him. My specialist copay is $70 per visit, and I already see him about once a month. I have insurance but it's not good. We are going broke paying the out of pocket expenses and dr. visits don't even count towards the out of pocket. Plus the meds, prescribed and OTC. I just don't know what to do. I can't sleep, I don't want to go out, I am so depressed and it's Saturday night. I can't go to the ER,my copay is $233 plus 20% of the bill!
Has anyone had this problem with their scalp? When I had cancer years ago I lost my hair in clumps on A/C and shaved my head once and no problems at ALL.
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Wandering,
I am sorry about the whole thing. But maybe it was there before shaving your jead and you did not see it. It could be an allergy to the meds and when you shaved itgot irritated. Usually cortisone should take care of it. Are they giving you decadron when you get your treatment?
If your MO cannot see you, then seek the help either ofa dermatologist or a pharmacist. There is a thread for affinitor on this site. The ladies had a lot of problems with the scalp maybe you can get some advise there. They site many meds.
Cortisone is effective in such situation but maybe you should get a shot and nota topical treatment.
Sorry i cannot help you much as it never happenned to me. I hope you soon get some relief.
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Thank you Woody. The bumps and spots were never there. In fact, my head was first shaved on Monday and Monday and Tuesday I looked great, very smooth. Wednesday night is when they first appeared. I may go see my primary care doctor this week.
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Hi JaneyDear - almost everything has failed me - the hormone inhibitors, all of them, dense dose chemo at the start, affinitor/faslodex, xeloda, etc. I haven't gotten the talk yet but got the feeling it was on the tip of my oncs tongue. After 31/2 years of unrelenting tx I was beginning to lose hope - started on Navelbine 10 weeks ago - 2 weeks on and one week off - so at 9 weeks completed one "round" and had a CT scan - I had multiple bone mets, spine, pelvis, skull, sacrum - they are all gone - the three tumors in my liver were beginning to grow together and form one big tumor - they have separated again and are less than 1/2 the size they were before Navelbine. My tumor markers and liver enzymes have gone down, then up a little, then down a little so not sure they are always a good indication of how well something is working. My onc did say that if Navelbine did not help she was reluctant to try another chemo as all chemo had failed me so far. But she did talk about immunology studies that are being done at UCSF - so it would seem to me that there are still options out there for you.
Also, as chemotherapy goes, at least for me, Navelbine is a relatively easy one.
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Thank you for your kind, and thoughtful responses. There is so much strength to be found on the Stage IV discussion board.
Isy, JFL, and Woodylb, thank you for your advice - I will request a new biopsy. I would rather know, than wonder. Thank you for the encouragement. Woodylb - oh, that is wonderful to hear. A miracle indeed! I am so happy for you.
apackoftwo - I am so happy that Navelbine is working so well for you! My liver tumors have done the same thing, and to have such results would be just amazing. Your success with this drug gives me fuel for my fight. I am happy to hear it is a tolerable chemo - my onc seems to think it isn't - but heck, the SE list doesn't seem half as scary as some of the others I've experienced! I wish you continued success on this drug. And I will ask about immunology studies.
Thank you ladies, and blessings to all. You've renewed my strength, and I am determined to make use of all the treatments options available!
I will keep you informed.
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Hi there,
So I did this immune therapy, my MO monitoring me every week (blood test etc), the results will be in the middle of November,the wait is just killing me. But I have new problem (does it ever ends?) - swollen lymph nodes under my skin on my chest, right above my right breast, or what's left of it (ha-ha). My MO biopsied it today and I am beside myself with worry. Did anyone had this experience? please?
I am very much up to date with all your posting and EVERYONE is in my prayers, I just have a problem typing, my right hand is almost out
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here is to hoping it just means your body is killing the cancer and you are having a great immune resoonse
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Ella, you are in my prayers also, hoping the results will be b9 . God bless you.
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Good luck Ella! Let us know how it works out.
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Dear pack...Navelbine saved my life...my liver was full of tumors & at my first scan at 5 mos on nav/her/perj, they'd reduced 80%. Three mos later, 30% more & 1 year into tx...stable. My liver enzymes were in the normal range w/in a month & TMs dropped so drastically, they tested twice. My onc uses Navelbine as first tx w/mets as she says it doesn't make you look or feel like a cancer patient (usually don't lose hair, just thins) and I did unbelievably well on it. I did weekly for 5 months and started dragging but when I went to 2 weeks on/1 off, it helped counts & energy. At 30 months, my new onc took it off & I went to just her/perj. I pray it works just as well for you!
Ella...praying this is the answer to sending bc packing for a one way ticket off the planet!!!! You are our trailblazer!!!
In CA, visiting son's family (basically here for GD time!), so heading off for fun time. I've missed so much, thinking & praying for wellness of body & mind for all. XOXO
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Well done RonnieKay. Are you feeling more energetic and less nauseous now? It sounds like you do. Woot! Woot!
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It's great to hear that Navelbine worked so well for you, pack and RonnieKay. Ellamilana, hoping for benign on the biopsy, and great results in November from your immune therapy. Is that a clinical trial?
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I had my Halavan on Tuesday...I believe this would be about my 6th or more which I have every 8 days..and once a month I have halavan...Falasdez...and bone booster (Xevada) ? I have been doing really well for about 3 mths..when I got that late 6pm call from OC say that my tm sky rocketed from 300 to 800 ..Question to you ladies..how low has any of you gone with tm and were doing well ...So CAT scan scheduled for next Friday...just made my OC a little curious..due to the fact I have been feeling and doing so well gaining weight ect.
So of course I go through a Emotional/Mental breakdown for 24 hrs...say gee louise what the Freak now...Been able to go to functions/camping/enjoying life the last 3 mths...and then BANG!!!!! It gets all shot down...DAMN IT!!
So I'm going on this weekend worry
Question for you ladies...How are you all with drinking Alcohol...such as wine...My OC told be to enjoy a few glasses on weekends..I have not indulged...but some nights it would be nice to just enjoy some Pinot Grigio...glass or two...to just relax ..I been around others that have indulged with wine...who their OC has told them it would ok on a Occasional basis only...OPINIONS please.
Just thought that Cancer Cells feed on sugar and that is any sugars am i right...
Sitting here with my thoughts while i'm trying to figure out what I did or didn't due to have the tm go up..i'm just so sad
It's like a roller coaster 3 mths well ...now probably 3 mths down..up down up down..enough all ready please...
Love and Respect and prayers to all you beautiful ladies...Carla
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Well...I'm a bad one to ask if you like your wine, Carla. When onc said liver mets, she said NO alcohol. For me it was no biggie cause I don't really care for it. I've taken communion wine 3 times & worried each time so I think Jesus understands :-). I'm extreme, I know. My guess is if it's just the sugar content, a mocha may be worse & I love them....so, I think if your onc says ok...moderation is the key.
I feel good, Dune, you're so sweet. Never had nausea, even w/taxoterrible first go around...prompted my onc to call me a poster child for chemo. I thought it was so funny THEN....when ever having bc again was never a thought.
Thinking of you all. More later...phone outta juice & off to bed. XOXO
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Janey,
From looking at your tx, it sure doesn't seem like you have tried everything there is!! And I would highly recommend Navelbine...I have been ned for four months because of Navelbine. And the se's are minimal compared to many chemo's out there. You keep on fighting, girl! And seek a new onc if this one seems to have given up. There are new treatments and new drugs, etc. nearly every day. I haven't been posting much for a while, but I do read posts and I'm in your corner cheering for you and sending prayers as well!
Debbie
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Carla,
So glad you've been feeling well...don't let this call stop you! Have your worry weekend and then get back to living and feeling good. This freaking disease certainly does take us all on a roller coaster ride and the key is to just hold on!!!!! I'll be sending prayers your way...sometimes the tm's go way up because cancer cells are dying, so that's what we should choose to believe for now. And, by the way, it's not anything you did or didn't do...don't blame yourself for this. Hang in there, girl!!! Debbie
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Dear all,
I write here to have some infos for my mum.
She has discovered one liver met about a year and a couple of months ago, after her first dx in 2009. She has had 6 months of Herc/Perj/Tax, which made her stable, than she had a liver resection, but during the surgery 6 more mets were found, very small mets, but still... Four mets were taken away and she was left with three small mets. Then she has started Kadcyla and after four infusion we have just found out that it made the liver mets stable, but now some lymph on the breast/sternum area are inflammed, which means, according to them, that ther should be some activity somewhere else.
In 2009 she was ER + PR - HER2 + and her liver biopsy had the same result, while the biopsy of the mets resected was ER + PR - HER -.
Now the onc told her that she has to do chemo again, but they don't know which kind of... I still wonder why they decided to give her only Kadcyla, since she has become HER2-. I'm so worried and scared.
Is there any of you who could share their own experiece, if similar? I really need some encouragement. I always try to stay positive for mum, dad and my little sisters, but there are some days in which it's really hard. I really hoped and prayed for some good news this time
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WorriedDaughter, I have had some experience with inflamed lymph nodes. One became so huge, hot, and red that I thought it would pop. Apparently they can do that. It was the lymph nodes that told me I was Stage IV. From there, we learned it was in my bones. So, yes, it can mean there is progression somewhere else. When will your mom be scanned for other mets? Love and light go out to you and your mom.
I have a question. The chemo I am on now did a whammy on those lymph nodes, and we hope it did the same internally. However, the past week or so, I have noticed pain below my right ribs. It hurt when the doctor pushed on it (surprised me!) and just a little while ago when I was bent down throwing my laundry down the chute. So I think there might be larger mets there now or something made it swell. Has anyone here felt like that? I understand the pain can get quite bad, but I'm more worried about throwing up which I have heard is a part of having liver mets. I do get a scan on Thursday and meet with my onc on Friday, so I will find out soon what is going on in there. It definitely scares me.
Also what are foods to avoid with liver mets? I know I have asked the question before. I don't know where I put the note about that.
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Hello everybody,
My biopsy results are back. I have carcinoma cutis, Dr. Google have very little info on this and whatever I could find is very confusing.
My MO is saying that its a part of the process, that my immune system attacking cancer cells and they are acting up and he is not worried. I really like and respect him, but this time its kind of hard to swallow...
thoughts?
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Dear dunesleeper,
As far as I've understood those lymph are slightly inflammed and she had her last scan about three months ago, so this inflammation should be something really recent (or at least I hope so). I don't know exactly when she's going to have a scan but the docs want to start chemo in ten days without waiting for a scan in order to stop whatever is going on as soon as possible and in the meanwhile they are going to plan a scan.
I really do hope that this new chemo will help in getting rid of her three small liver mets and stop whatever is going on anywhere else.
As far as it concerns my mum's liver mets, the docs haven't told her to stop eating anything in particular. Just not to eat a lot of fried food or too many sweets. Mum's mets have always been asymptomatic (and I hope they're going to stay asymptomatic in they have to stay there) and her blood test never showed anything at all, so I can't help you about that.
I hope that scan and meet with the onc will bring you some good news.
Prayers for you and all your family.
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Thank you WorriedDaughter. Many prayers for you and your moml
Ella, I just don't know. However, when I felt a loss of trust with my onc (and the treatment wasn't working) I scheduled a 2nd Opinion consult
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