How are people with liver mets doing?
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I have never done doxorubicin (Adriamycin) but did do adjuvant epirubicin which is a similar drug. I had trouble with mouth sores. One suggestion - use a soft toothbrush or take care if you brush your teeth aggressively so you don't cause abrasions which can lead to some very painful sores around the gums while having this medication. Also, I used a mouthwash that you can buy over the counter which contains chlorhexidine. It helped my mouth sores but it did sting sometimes.
SyrMom, I think raised liver function tests are not uncommon with doxorubicin. Ask your chemo nurse or oncologost who will be able to put your mind at rest.
I am joining next week's scanner party. Booked in for scans on Wednesday. Results Thurs. Fingers crossed. Liver pain significantly diminished and feeling better than I did while on Xeloda - hated that stuff.
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Thanks Springwatch.
I hated Xeloda, too. Did NOTHING for me except cause hand/foot syndrome and ruin a summer!! However, I've heard it can & does do wonders for other pts.
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Woody...I don't have scans Wed, just see onc & will talk to him about when to expect them next. I hit 3 months off chemo yesterday & since he doesn't do liver enzymes every month when off chemo, it'll be time for those Wed. TM's are still good & they are a pretty good indicator for me. I only have cea & ca27/29. I've seen others mention another...which is it? I'll ask my onc about it.
Hopeful for everyone scanning next week!
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Ronnie, well it is even better , frankly you could do wothout the stress of waiting for results. Since yur TMS are a good indicator than yayyyyy and i hope they stay good and low. The other marker is CA-15-3 it is specifically for breast cancer. This is the TM i do and the last time there a drop in number. So let's hope it is a good sign that the combo is working. Still , istarted to get nervous because the results will be decisive of whether i continue with it which would be great or ... Well really not too many options if it is not the case. I am back home now in Lebanon , my son start uni on monday and my scan will be wednesday. Ususally, they make me wait to talk to the doctor afteri am finished with the scan and he can give some pointers. But will talk to my onc she can get a verbal results by wednesday night. Friday i have an appointment with her and saturday i will head back to my DH. So still , i hope we both get something to smile about. Xoxoxo
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Well, I am in the month of rechecks. so far my echo is the best is has ever been since they began monitoring. That was amazing. My oncologist was giong to let me skip this cycle of body CT scans as it has been 2 years since mets diagnosis and I have been very stable with nothing to remark on. Unfortunately for me my brain MRI wasn't so routine. I have growth in my old tumor bed but no new tumors. So I am now scheduling all sorts of tests to get ready for my brain surgery to take the turmor out, followed by radiation. I also now have to have a CT of my body to make sure my liver is doing well. That trumps everything. So I am in a bit of a tizzy but trying to reframe things. I actually have a good feeling that my liver is behaving and that i will only have to deal with the tumor in my brain. But it is scary. I am happy to hear that people like you ronnie are doing great without medicine because I will have to go off my Xeloda and Tykerb in order to have my brain surgery. So I am praying that my liver stays good while off the medicine so I can deal with my head. I realize this is for lvier people but it all goes together for me. People like Ronnie give me hope that I am not starting a downward spirlal. Here is too goo
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Leftfoot,
Sorry for the brain MRI results, and i hope all stays in check with you so you can have your opration. My prayers are with you and please keep us posted. God bless you and yours.
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Oh Leftfoot...you've had such a good run on xeloda/tykerb..I'm hoping the body scan is totally clean & you will be able to zap the brain tumor quickly! Wouldn't the brain take precedence, even if the liver has concern, or is it considered slow growing? Were you feeling dizzy or having any familiar ses of brain mets? I have a good feeling that you're strong & ready to take on this next challenge...I'm just sad you have it. Keep us posted...prayers for you.
Woody...A big week for you & DS...and I'm pleased they will let you know about scans quickly...2 days seems like an eternity. Then...back to your loving DH & warm weather! Prayers always!!!
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Hello everybody.
I've been on this side for more then 2 years, mostly reading. Last Thursday I had PET scan and it came back positive with hepatic metastasis.
I am scared
Please help
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Sorry Ella, that you've entered the mets world. I got the liver mets news & was told to spend the time I had left with family...I had no clue I'd start chemo, it'd do the job of blasting tumors, and I'd be celebrating life 2 years later, and there are many of us! There is much hope. I'm glad you came to this site...we're here for you, whatever you need. Hugs to you
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Hello Ella,
I am so sorry you joined our club of liver mets. Nevertheless, do not be be frightenned, it is serious of course but for most of us till now manageable. I was diagnosed last year and this is my second year, i am on a new combo and it looks promissing , this week i will know more since i will have a scan. I am glad you came to this thread, as you will see it is full of wonderful ladies and everyone is extremely caring and supportive. Drop in any time you feel the need or have any question. We are here for you . I second RonnieKay whatever you need. God bless you
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Hello Ella, Welcome. I understand the fear. I, too, have liver mets - started out with bone & in 2012 found the liver mets in a routine CT. I don't post a lot, but come to the boards and read every day. There's a lot of hope here & it helps to keep me going. The truth is we are all different & you never know what chemo may be the very one to rid the buggers. So know there's hope. We will do our best to help you get through whatever regime you are on with tips for managing, etc.
I also get scanned next week, but already know by my labs not to expect good news. I understand it's because I was off tx for over a month due to a toxic reaction, just hope the beast hasn't set up house somewhere else as well.
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Hi Ella - I also don't post often but read here everyday for inspiration and support. I was diagnosed with bone mets in 2009 and liver mets in 2012 and am hanging in there. I always feel bad for the 'newbies' who have just heard the dreaded 'you're stage 4' words...nothing is worse than that shock as I remember it like yesterday and I was told in 2009. But things will come into place and you'll settle into a new norm, you'll see. Come back and talk to us as many times as you need to, best wishes.
Good Luck to those scanning this week; I'm really praying for good news from all of you.
Laura
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Hi, Ella. I understand your fears. We probably all still get scared from time to time. You'll find the fear subsiding as the years go by. There are so many women out there who have been living with liver mets for years and years, probably because there are so many treatment options. Besides chemo and hormonal therapy, there's Radiofrequency Ablation (RFA), Sir-spheres, Stereotactic Body Radiation Therapy (SBRT), Chemoembolization, and surgery. Some of these procedures can be done more than once. Just make sure you have an oncologist who is willing to consider those options. You'd have to consult with an Interventional Radiologist for all of them except the SBRT and surgery. SBRT is done by Radiation Oncologists and surgery is, of course, done by a surgeon who specializes in the liver. A great website to check out is: http://www.beatlivertumors.org
Prayers,
Penny
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Laura,
Thank you so much for your wishes about scans , ihope your wishes and prayers are answered to all of us, and be returned to you thousand folds. Hugs.
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Ella--I don't post much in this forum. Your world has just been turned upside down. Things will be crazy for a while. Kind of a whirlwind. You will settle in and get busy with treatment and continue on. Finding your new normal is a process. I am 2 1/2 yrs out from liver and bone mets dx. I am still trying to find my way. That's why we are all here. Blessings to you.
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Ella, Sorry you find yourself here but as you can see there are number of people here who have been dealing with liver mets for years and I think you have every reason to be optimistic that your treatment plan will deal successfully with your liver mets, too.
SyrMom, Xeloda did absolutely nothing for me, too. I won't be going anywhere near it again. I felt terrible on it. No HFS but plenty of stomach pain and GI side effects. The few tiny liver mets I had at the end of Sept grew like mushrooms and spread. Good luck with your scans this week. When will you get your results?
Woody, Good luck with your scans, too. I hope you see some good results. I have an MRI on Wed. I will be praying for all of us.
Penny, Thanks for the link. I am going to check it out now.
Laura, Just wanted to say that I hope you are doing OK on the adriamycin. How many cycles are you going to have? My onc mentioned it in passing but because I had Ellence (epirubicin) as part of my adjuvant therapy I am near my life time dose of anthracyclines. I could probably have another two cycles but that would be it.
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Ella, I'm joining everyone in welcoming you and commiserating with you. I hope you find some equilibrium soon.
I'm having a PET/CT on Wed. It was going to be a CT but PCP raised a question about my kidney function - creatinine had been off for a while (probably from Afinitor) though it's been normal for over a year. She thought I'd need to be hospitalized the night before and given *drug with name I don't remember* plus IV fluids in order to have it. Onc said he thought I would be OK but said if she was worried he'd switch to PET/CT. For a few reasns (mostly not medical) I'm glad. 1. PET/CT gives better results (probably). 2. It's easier to drink the contrast for PET/CT than for CT. 3. I get a lovely lounge chair to sit in while waiting for PET/CT, as opposed to a hard waiting room chair (and the wait is the same length!). 4. I can get an appt sooner. 5. The results are back sooner. The last 2 are because the PET/CT dept is run more efficiently than the CT dept.
Both have the same amount of scanxiety, though this time I'm sort of resigned to things in a way since my markers have been climbing - I don't expect good news.
Leah
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Springwatch ... how is the Carbo/Gemzar combo treating you? How are the side effects compared to the other chemos?
My CT & results are on Wed., get results of MRI of thoracic/lumbar spine on Tues.
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Leah, Good luck with your scans on Wednesday. There seems to be quite a few of us booked in for that day.
SyrMom, I have had some rough moments on gem/carbo. A few days when I have had no energy and find if I stand too long I can feel a faint. My blood work has been all over the place and I had to see a hematologist who just thinks my bone marrow is over-reacting to the chemo. My HB and neutrophils have been low but so far not outside the normal range. My platelets have been the problem. Low one week and then more than twice normal the next. As long as the chemo is working, I should start my 4th cycle on Thurs. I have managed to get a lot done these last few days as I had no treatment last week. I am finding it tougher than taxol which has been my favourite chemo, so far. I hated and I do mean hated, Xeloda. I felt terrible the whole time I took it and it was almost a relief when I found out it wasn't working for me and I switched to gem/carbo.
I have never had a PET CT. My onc uses MRI and a standard CT with contrast to measure my lung mets, although he hasn't booked me in for the latter this time. I think he is more concerned with my liver. My lung mets have been stable after initial regression. I would be interested to know how long a PET CT takes. The MRI lasts almost an hour. They have installed a new MRI machine and upgraded the two others they have at my centre. I have been told that it will only take about 40 mins this time around. I don't know why but I have started to feel more and more claustrophobic in those things. I think I will have to ask for an eye mask on Wed. and see if that helps.
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Thank you very much everyone for such a warm welcome, I feel better already!!
I had an appointment today with liver oncologist, he wants me to take an MRI this week and reassured me that I should be cautiously optimistic, most likely I will need a surgery, but there is a chance... oh my, lets pray for that chance..
A bit about me
Four years ago I lost my husband to Lung cancer and when I was beginning to see an exit from Cancer la-la land, BC hit me in 2012 on the right side, I had double mastectomy and chemo, then last year totally by accident pet scan lit up on my chest wall, my doctor even refused to upgrade me to stage 4, well again chemo and radiation, finished in November and now this, just had my first hair cut...oh well, it is what it is, we should keep swimming.
One of you posted the quote by Arthur Ashe that really resonates with me: "Start where you are. Use what you have. Do what you can."
Cheers
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Had 2nd Treatment of A (Red Demon) My tumor markers have gone up from 3wks to 187 from 100 still on Faslodex which I get next mth...I was asking my NP who works aside my OC a lot of questions about other meds for se and about this treatment...felt good to do so...she gave me reassurance...
I can't believe April 1st it will be 1 yr since this dx...so much to be thankful for...just being here...
Had some scary news regarding my 10mth old grandson...he has signs of Bells Palsy....Daughter noticed it when he would cry...his left side of face would droop...so took him to be seen and the doc's said early signs...but treatable with steroids...low doses...about 9 sessions..but will have MRI to rule out any brain trauma...tumor etc...but he is still his adorable self...playing...laughing and smart as a whip...I just can't see something like this heaving my daughter right now...
Have a great evening...the couch is calling me to rest...L&R Carla
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I'm sending my strongest prayers...that all will have good scans...so many of you scheduled this week. Each time I've had a recurrence, it's hit me like a freight train, but scans w/liver mets have been good...thanks to Navelbine. Now, being off, it's hard not to feel a bit like you, SyrMom & Leah...wondering what my next scan will show...even though TM's and blood are good. I'll find out tomorrow, when I'll be scanned next. In the meantime...I am being hopeful & optimistic for all, my sisters!
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Radioactive spheres will be put into the other lobe of my liver on Feb 9th. In the meantime, I'm still receiving biological treatments (Herceptin and Perjeta). Don't know when my next scan is. Thanks for continued prayers. 😊
Penny
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As I expected, the "Red Devil" Adriamycin, has failed me. Had the worse scan results I've ever had. Progression in spinal mets and liver mets; old liver mets bigger & mult new ones have moved in. I'm grateful that so far no other major organ is showing new mets. However, the onc basically said in so many words, he didn't know how I was functional based on the "wow" of my scan results!!
So, suppose to move on to Halaven, once approved. It better be approved!! Was shot down b4, but that was b4 Doxil & Adria. So, welcoming all tips on dealing with Halaven. I understand the neuropathy can get really bad enough to have to discontinue it. I already have neuropathy from taxol. What about nails? Hair? Big C or Big D? Nausea?
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Syrmom, i am so sorry for the progression, i hope you get very soon the approval for Halaven and will pray it will be the one which will kill your cancer. Hugs .
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Spe
Springwatch,
I had the combo carbo/gemzar , it went fairly well the first three cycles but fourth and forward it worked a number on my blood, i had one transfusion, and very low blood platelets. I have had a small response and it was not the right combination for me. I was tired the whole time. This combo does not seem to work well for ILC breast cancer i hope it works well for you with the minimum side effects.
The PET scan will take about two or two and a half hours .
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Penny, good luck on your spheres the 9th more and more prayers heading your way . God bless you. Hugs.
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Hello ladies,
I wanted to answer each and everyone of you before i give you my news.
I had my PET scan today and got the verbal results from both the radiologist and my MO.
Complete response , nothing showed on the scan no liver tumors, no spinal and hip mets nothing.
No SUV t trace . HALLELUJAH ! Praise the Lord , A BIG thank to each and every one of your prayers , i am overwhelmed, i could not beleive it i had to make the radiologist repeat over and over thsn called my MO to confirm . I am blessed to have all your support, blessed by my family and friends and most importantly God's mercy is unlimited . Wowwwwww
To all of you wh had scans today and those who will have them later, i wish you good luck on your results and my ever fervent prayers will be with you every single day . Love and hogs to all.
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RonnieKay, my dear friend wowww for your wishes they were answered and thank you for your prayers , i hope you reade my post , for the first time since my dx i get zero nothing in my results . Your support was tremendous and your friendship precious. I will not worry about you not having Nevalbine, you will be fine without it and i hope and pray for a long long long time. Kisses
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Penny, our spiritual guide i want to thank you from my heart for your endless prayers and extreme faith and belief . God bless you and yours.
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