How are people with liver mets doing?
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The pain isn't severe, just nagging--like a nasty reminder that hey, you may be NED but I'm still here...
You bastard!
I live with a surgeon and when I suggest to him it's from scar tissue he says, puhh, I've never heard of pain from scar tissue from tumors, and your's weren't that big, I've removed much bigger.
My liver however was absolutely riddled with tiny spots of cancer and then there were several 2-3" diameter tumors and several 1" diameter. The oncologist did say my liver tissue was in great shape (despite my BFC daily wine consumption) outside of the tumors. Now with zilch on the PET scan and ultrasound the Doctors all just shrug their shoulders as in: what's to worry?
Yeah, easy for them to say.
Which is why I'm here. Sometimes the info is better and the support, oh, misery does love company.
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I'm so bad at keeping in touch with you all...have been trying to keep myself as busy as possible. I'm still managing to work full time...it's a desk job, so I can just sit at my computer most of the time. It really helps me keep going! Also I'm enjoying having my chemo schedule changed to 2 weeks on and 2 weeks off. After my bout with pneumonia I had three weeks with no chemo and it was wonderful being able to taste food again and actually feel almost normal! With this schedule I find that I am still able to taste food most of the time...what a blessing!
Woody - Can't wait to hear the results of your PET scan...I just know there is going to be improvement!! Glad to hear that you are getting to spend some time with your son and are enjoying the warm weather. Think of you often-just too tired at the end of the day to log on and post.
Syrmom - I am so with you on feeling like I'm not who I was. I have lost friends and some I have walked away from. Like you, I just don't have time for the trivial things and the drama over nothing. So many people are whining because they want to make more money or have a new car or new clothes, blah...blah...blah. We would all just like to live a lot longer and not feel like crap most of the time. C has changed us all. BUT, I refuse to let it take over my life. It may have changed me in some ways, but I'm still me inside...I just can't always do the things I used to; can't keep the schedule I used, etc. Stay strong, girl!
Leah - Sorry to hear your TM's are up...I agree with others, though, that may very well be becuase the tumors are dying! Thinking of you and sending prayers.
Penny - Love reading your posts - you are a true messenger of God's word and a blessing to us all!!! Hope you are feeling better.
Kjone13 - Rant away! This is one of the few places where we can do that. Most people just don't get it. We have all felt the way you do and still do at times. Bottom line is...Cancer Sucks!!!
Ok...I'll quit for now and promise to keep up on posting more often. I can at least manage the weekends...get to sleep in...WooHoo!
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Chichi, welcome back ! It has been a while true, but i ak happy you are well and up beat. Sorry for the pnuemonia and i am glad you got out of it and even happier that your chemo schedule has been changed and that it is giving you a break to be yourself a little bit.i agree with you keeping yourself busy is a good thing and it keeps you alive. So hurrayyyyyy for you. You were missed. Thank you for your wishes on my scans i pray to God you are right, i will post thre resultsat the end of the month. Meanwhile, i wil keep my fingers crossed for all of us and my prayers to all . When are you due for a scan? Keep us posted from time to time and i do hope you keep this spirit. Xoxoxoxoxoxo
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Hello people,
The xray came with decrease in pleural effusion and stable on liver. However since last satuuurday mom has been getting fever. It comes once a day and at times alternate days. Have taken antibiotics but still persists. In last 10 days she is getting increasingly tired even if she walks little and is the biggest worry so admitting in the hospital. Doctor wants to do ECG / 2d echo and Pulmonary angiogram to see if there is any clot in lungs since Mom is on the affinitor and Aromasin combo.
Hope she is out soon and can move normally
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Woody,
I should have a scan at the end of the month to see if the new schedule is still effective. With the 3 weeks on and 1 off, the tumors had shrunk significantly, so onc thinks it will stil be effective with the 2on and 2 off. I sure hope so as it has made life a bit easier for now.
Blessings to all!
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JCSindia - sorry your mom has to be hospitalized but at least they'll get to the bottom of it. And thanks be to God for the decrease in pleural effusion & the stable liver! Keep us posted.
Chichi & Woody - looking forward to hearing good news from both of you at the end of the month :-) Penny
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Jay,
I am so happy your mom's liver is stable and her lung's pleural effusion is dicreasing, but i am sorry she had to be hospitalized but like Penny said at least they will get to the bottom of it and give her the right treatment so she is back to normal again . Keep us posted and my orayers are with her and yours.
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Chichi this is wonderful ! I hope the shronkage continues , i feel the same as your onc the change in the protocol will still be effective and i feel we will hear good news at the end of the month. Hehehe we have both scans almost at the same time.
Penny , thank you so much for your wishes and prayers i hope we hear the same good news about you too very soon after your see your onc. Thanks be to God for the treatments we are getting which are keeping us in this world. Thank thank you Lord.
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Hello All - Quick question for you all: I started Adriamyacin last Friday. It did kick my butt Sunday and half of yesterday (still feeling a little woozy today) but my concern is that I feel nothing in my liver, nothing at all. Every treatment I ever started I could feel pain, which in my mind, meant that it's working. And as the pain decreased, the tumors went down. Nothing at all this week, has this ever happened to any of you? TIA and wishing you all a good day!
Laura
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Laura, what's your schedule on Adria? I'm 3 on/1off. Only had 2 in Dec. due to holidays (my choice) and just finished #3 for Jan. yesterday - I'm on what's considered a low dose. I don't get liver pain, but have found increased general abdominal discomfort - lots of gas, worse when it feels like trapped gas. I live on Mylanta. Makes me feel generally shitty most of the time. I enjoy eating & this kills it. Going to try & be more aggressive with the anti nausea's this week.
I really would not judge 1 tx on whether its working, Each chemo is so different & our reaction to it. It's all cumulative, so hang in there.
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Hi Syr - I'm 3 on/1 off also, considered lower dose. And you're right, it's only the 1st one. I did take a Zofran Sunday about noon and woke up about 5 pm. I think it takes the nausea away by making me sleep all day! I'm still feeling kind of out of it today though but no gas pains yet. That will probably start next week, lol. Thanks for responding!
Laura
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Laura, keep in touch, we can compare notes!
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I got my test results today...from my PET scan...My cancer is very progressive at this point...what I thought last Tuesday with a CAT scan in the ER of a couple of sm lesions on my liver have turned out to be 20 lesions now...after the PET scan...OC told me that my bone mets some of the tumors are glowing RED...that means to what I understood from him is that the Cancer is on High alert...so I am starting Adriamycin tomorrow morning...I am so so scared...it is happening so fast....Carla
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Carla,
So sorry to hear of your progression. I hope your new treatment will take care of all of those lesions.
Terri
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Carla,
I am so sorry to hear abput your progression, i hope Adria will help restrain them and shrink them. Prayers are heading your way. I hope your mind is soon put at ease.
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Carla....thoughts & prayers for new txt to take the lesions away...completely!!! Also hoping you feel strong!
Praying for all to have good scans coming up! I'll find out when mine are on the 27th...trying not to be too anxious after 3 months w/out chemo. Been consumed by family after returning from CA. Now getting ready for company coming to stay for Super Bowl weekend. So excited!!
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Carla, no...I'm sorry for you because you are so upset (as I would be too) but you have so many other options so please try not to worry. You are probably getting the lovely Adria right now. Just relax and let it do it's thing. I started Adria last Friday, today is my first normal day athough yesterday I was able to get through OK. Crazy joint pain though, especially in the knees - try to get any steps trips done today or tomorrow (like laundry in the basement for me) in case you get the same symptoms. Keep in touch.
Laura.
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Carla, PM me anytime ... I understand how scary it is, been there, done that, still doing that. I'm on Adria too (as I explained b4). Keep us posted & we can help you deal with any potential s/e. Sucking on ice does help to prevent mouth sores, for instance. To me that's a small price to pay. We are here for you. Hang in there.
Anyone experience their liver enzymes rising while on Adria? My AST & Alk Phos keeps going up!
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Carla - Just as fast as cancer can progress, adriamycin can kill it even faster. It's pretty powerful. Sorry to hear your bad news but I look forward to the day when you tell us this treatment is working!
Prayers for all,
Penny
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Carla, a hint - popsicles are more fun than ice to chew on during treatments.
Leah
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RonnieKay , welcome back, hope you enjoyed your trip, meanwhile i missed your posts.your scan is on the 27th and mine onthe 28th after 4 cycles herceptin , perjeta and three taxol. So let 's compare notes hehehe . I hope we both have great results.xoxoxoxo
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Havent been on here for a few days...but thinking of you all. Carla, I am also sorry to hear about the progression.....adding more thoughts and prayers for you that the new treatment will zap those tumors. When I found out last spring that the cancer had returned I remember how my onc looked so sadly at me and said that it 'didn't look good'.......and now after treatments every 3 weeks, she is happy with the progress we are making. We can never say never and especially never give up! I do understand being scared though...I know we all do. Hugs to you.
judy
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Thanks to all for the support... Can you ladies help me with your experiences on Adriamycin...and the side effects you had and how you dealt with them...just want to know if any of them come up for me...
Have a great Day!!
Carla
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Carla....I had adriamyacin/cytoxin as part of my first round of chemo when I was initially diagnosed with bc back in 2010. Had 4 rounds, over 2 months time. My hair fell out...food tasted awful....had a lot of fatigue. I needed to have neulasta shots after each treatment, which has side effects of its own, but it helped build my white and red blood counts back up. I had quite a bit of nausea....not so much on the actual treatment day because they gave me emend before the infusion, but in the days following. I learned that I needed to keep ahead of it by taking compazine or some other anti-nausea product on a regular schedule for several days after the treatment. I remember counting down those treatments.....and before I knew it they were done. Do you know how many treatments you are going to have? It was funny that after I finished the a/c...if I drove past the oncs office....Just seeing it would give me a brief feeling of nausea! That old mind/body connection thing, I guess.
I did not get mouth sores, but I remember being worried about that side effect. The ice chips/popsicles are a good idea.
Did your onc have you get an echocardiogram or a muga scan before starting your treatment? It doesn't affect everyone's heart, but I was in the small group that it does....they will probably monitor you for that. I don't remember how high a dose I got at that time. Don't know if they are using a smaller dose these days. I hope it all goes well for you.......most of all that the treatment will do a number on those liver tumors! Lots of love and prayers!
judy
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I am getting the treatment weekly at low doses I believe the nurse said 25 mills....up to 6 or 8 we will be scanning after 6th round...Yes I did get a ECHO scan done...I like you also at A when I was first dx in 2010 with my original bc dx along with 2 other chemo treatments...I don't remember getting sick at all..even my daughter said that I rode the train pretty well...just remember getting tired...but this is a whole different ball game...now...bone mets/liver mets....and I have gone through a bowel perforation from Xeloda... and alot of weight loss due to that.. Today I feel ok...I am taking my Zofran every 6 hrs...so yea I'm keeping up on the nausea...
Thanks Carla
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Carla...you just answered my questions! Wondered if you'd had A w/first dx, w/lymphs involved. Glad your heart is healthy enough to do it again & hope it does the job! I'm sorry xeloda was so harsh...did you go off & then have progression? Hopeful your body will tolerate A as well as last time & 6 week scans will be good news!!!!
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RonnieKay yes lymphs were involved...the first time...No It happen while I was on Xeloda...I am hoping also...just want to live...Carla
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Carla, I asked the same question & there's some information on the following discussion board that might be helpful -
"Adriamycin (Red Devil) for Stage IV."It's great you were able to tolerate it so well the first time around.
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Carla - Skin problems on hand/feet are often a problem on Adriamycin. I would recommend getting some Udderly Smooth brand lotion as it was the only thing that worked for me.
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Carla - I was told that I'd probably get mouth sores when on Adriamycin but that a daily rinse of water and baking soda could keep them away. I did the daily rinses and never got the mouth sores but I'm not sure if it did the trick because some people don't get the mouth sores anyway. Just an FYI.
Jaytee - I like your statement about the mind/body connection. Currently, whenever my husband and I pull into the parking garage for my treatment center, the smell in the garage sometimes makes me a little nauseous.
Prayers for all,
Penny
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