How are people with liver mets doing?
Comments
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Diana50,
I hope ixempra even though nasty works for you. I hope they will soon check the dura lesion in the head so you can rest your mind. Good luck on the blood works hoping they come up ok and show your liver working well. Yeah cancer sucks !
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It stopped working for me. Otherwise I was able to handle it - one week on and one week off.0 -
Okay, just started on infusion with Doxil. Xeloda stopped working for me and that was pill form.Have some bloating going on and free floating nausea - Yes I too get scared of the unknown - glad I am still working
Office workers and my bosses are very supportive with me. They are my second family.
We can live only one day at a time. Try not to worry - all your feels are normal. I am at work now and took some time on this site. It helps me to hear others and their fears or good news.
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I was on it and it was not bad. Just made me tired. Now I am on Doxil as Xeloda stopped working for me.0 -
Hey there - I was hoping I could get some advice from some of the other ladies here that have had their liver mets treated locally. I was diagnosed with stage 4 from the get go with one solitary liver met that was 2.5 cm. After chemo it has now shrunk down to less than 1cm but now I am considering local treatment to get rid of it. My dr. Referred me to a dr. Who does Cyberknife and a liver surgeon who is suggesting RFA. I can't really decide which one is the better option. I'm sort of leaning toward the RFA to avoid radiation and the Dr. Will also be able to scan the rest of my liver while he is doing it to make sure there aren't any other problem spots. But the SBRT with Cyberknife seems like a really advanced technology that has great success rates as well. Does anyone have experience with either and do you have any thoughts? It's so nice to be able to converse with people who have past experience with this. I thank you so much for any advice you can provide.
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Hi all,
Today my onc called me and said she wants me to start Xgeva shots today. And she don't want to change anything else. Xgeva should heal bone mets and as the liver mets are under control - we will keep Navelbine. Is it a time for a second opinion ? I like my oncologist and I trust her but not 100%. I hate when I have doubts.
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Kiss, if you have bone mets, you will definitely benefit from Xgeva. I've been taking it for four years, and it has really helped heal my bones. There have been studies that show it makes your bones an inhospitable place for cancer growth, as well has adding bone. Just be sure to take calcium when you start. She will tell you about that, I'm sure. The shots are no big deal. For me, just a shot in the flabby part of my upper arm, very little pain.
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Christina,
If your liver mets are under control then your onc is right to keep nevalbine and add xgeva , i have been taking it since last summer . It really does help control bone mets. But take calcium with as it tends to suck it up. Kisses
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Thank you, Ladies!
sandilee, yes, my onc told me that Xgeva not only keeps bones away form fractures, but heals the cancer. So she thinks Xgeva is enough to keep bones stable.
Woody, you are my sanity :-)
Kisses,
Christina
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Diana, why cheese?
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Hello, everyone,
I haven't posted in a long time although I always read and keep up with the progress of all of you. I am happy to see how many of you are doing well, and I pray daily for those who are struggling.
My question is about Gemzar/gemcitabine. It looks as though I'll be starting it Monday as I've had a little progression in my liver mets while on Navelbine. I'd like to know how long you were on it and what results you had. Also, what were your side effects? I need to decide by Monday whether I want to do the Gemzar or go on a clinical trial that my onc has found.
For an update: I don't think I've posted much since I was on Kadcyla. I went from there to a clinical trial with ONT-380, Xeloda, and Herceptin. I was having good results but developed severe h/f syndrome and had to come off the trial. I then went on Navelbine. When I was going through the preliminary testing for the trial, I found out I had a small brain met. I had TruBeam radiation (similar to Cyberknife) for that. I also had radiation for a small tumor in the paraspinal musculature (muscles that are parallel to spine).
All the best to everyone. Trish
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Trish,
I was on gemzar for about 5 months. Major side effects are blood platelets, weight gain. It was given to me with carboplatin. Gemzar failed me . It was carboplatin which shrank a little the tumors in my liver but it was to harsh on the body. You will get gemzar with herceptin or alone?
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Good morning! Just sending our blessings to all of our "lovely liver ladies"!
Woody - I agree with with Kiss77 - you are our sanity most of the time. Hope you're continuing to do well!
Kiss77 - I agree with the rest of our group who chimed in - sounds like your onc in on the ball with the Xgeva being added to the Navelbine. Navelbine has been kicking my liver mets to the curb no long visible on CT scan.
Countrygirl - Welcome and glad you joined us. I, too, continue to work full time. It really keeps me going and my co-workers and bosses are the best - like you said, a second family. I think of the ladies here on this board the same way.
Freygea - Welcome to our group. You will find lots of helpful advice here and support and compassion to get us through the rougher days and help celebrate the good ones. I would not Google liver mets - gives you statistics that are way out of whack. Doctors have no way of knowing how an individual will react to treatments and there are lots of them out there. Many ladies on here have been posting for years and are still going strong. I was told last September by an "expert" that I had weeks to live...really!!!!!! So much for that second opinion...I went back to my onc that I love and trust and 9 months later they cannot find any mets in my liver. So, keep on striving and listen to your heart and your gut instinct.
Hope everyone has a great weekend!
Debbie
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Debbie, you also are an inspiration. So happy that Navelbine is working for you! A hopeful message for those of us wondering what our next treatment will be. Thanks for posting!
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Freygea...about Googling...I'm a googler. I feel like the more knowledge I have, the better. Yes, many/sometimes most of the time it doesn't pertain to me, my dx or tx, but I can weed that out. Sometimes I think thank you Jesus, sometimes I think oh crap! It's living w/mbc. I think reading what many of our sisters are experiencing is bone chilling...but it's real. And thank God we have each other...a true lifeline! It's so important to trust your care team, and be an advocate! As for the liver...in a 6-month period, I went from a clean scan (too small to detect, of course), to a liver filled with tumors up to 8 cms. In the first 5 mos of Navelbine/her/perj & neulasta, they shrunk 80%...another 3 mos another 30%...4 mos later...stable. Twenty-two months on that & able to drop navel/neu. My onc said remission. Doesn't totally erase the uneasy feelings but...thankful & hopeful. You're dealing w/more than liver...so just saying always hope! I did like you...a clean diet & list 36 lbs (which femara is returning, dang). Low carb, lean protein, loads of cruciferous foods, low sugar, cinnamon, turmeric, pomegranate juice every morn, green tea. Dr Scrivene-SH???? Anti-Cancer book has great recs. I called it my "save my liver" diet. Making it easy to work was my goal. My onc's only order-no alcohol. I know others who still drink...I never did so I didn't care...but I figure if she was that adamant, it would be something to take note of. Rest...and keep stress down...important for us all (I'm not good at either since off chemo...gotta practice).
Trish...I'm sorry for progression & the brain mets. It sounds like you procedure wS successful & I'll pray for the new combo to be totally successful w/no (low!) ses. Sending love.
Jos...I hope the specialists are completely assured there are no critters lurking. You've had such good response. My onc was very suspect about surgery on the liver, but if you've got their assurance...I hope you find answers & healing.
Woody's my go-to girl...always...for my emotional & physical well-being so she needs to be healed, with the rest of my sisters, sweet Jesus.
Chichi...glad you're doing well & Kiss...I'm hearing (not knowing first hand much about bones) that your tx sounds like the right one. Hallelujah for navel working.
I've missed some of you but my DH is helping me clean our country home & he keeps finding me hiding in different spots so I can blog. Busted in the bathroom, a bedroom & now laundry room-dang. XOXO & prayers for healing!
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Aaaww...thanks Sandilee...that really touches my heart. I just keep on keeping on and am finally learning to take each day as it comes....there sure are alot of great ones mixed in with the "crappy" ones!
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Thank you all for the information! Ronnie, I need to find some decent green tea. There is a health food store up the road but it closes early. I am going to see if i can get up there this week and see what tea selections they have.
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I just want to say to all of you kind women on this liver mets topic, thanks for being here to support each other. I don't log on to post very often, but I do appreciate you all and think about you often.
RonnieKay, that is hilarious about your getting busted for blogging instead of cleaning. I found out that my hubby, poor guy, was worried about me and wondered if I was hiding some new symptom because I was closeted with my computer too much.
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I think the name RonnieKay is wanting to give Freygea, is David Servan-Schreiber, author of Anti-Cancer: A New Way of Life. Great book.
My favorite green tea is Triple Leaf decaf green. That brand is decaffeinated naturally with a carbon dioxide process rather than chemicals, which is supposed to maintain the beneficial antioxidants. (I avoid caffeine because of fibrocystic breasts and sleep issues.) Triple Leaf also makes a decaf green jasmine tea that is heavenly when mixed with regular decaf green and honey. I get it mail order.
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I am going to go book and tea Shopping.. love an excuse to go shopping!
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Thoughts on Ablation vs. resection? I was given a chioce to deal with my one met in my liver. The team of specialists said they didn't have a preference as they both have about the same %s.
thanks
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So.... TMs going down. Pain gone. And.....scans show progression. Tumor in liver growing, also progression in bones. On to Doxil.
I don't understand what's happening at all.
Leah
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Leftfoot,
I am sorry you ended having to decide on ablation versus resection. I am not xandidate for either procedures. But from all the data i have read, it states that of the tumor is judged resctable it has abetter out come and longer survival rate than ablation. Ablation is a minmal surgical procedue while the resction is a major operation. I pray God to inspire to choose the right one for you.
http://www.ncbi.nlm.nih.gov/pubmed/23029051
http://www.ncbi.nlm.nih.gov/pubmed/22288086
http://www.nature.com/srep/2014/141128/srep07252/f...
http://www.hindawi.com/journals/hpb/2009/346863/
The above are few articles comparing both procedures, i hope they help. Prayers.
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Leah- so sorry. Hugs to you. May Doxil be your wonder drug.
woodylb- thank you so much. My gut reaction was to do the resection but am not sold. Thanks for the articles. They will help me process everything.
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Leah,
I am so sorry for the progression , i hope and pray Doxil will be the right medication for you. Most of the time most of us do not understand what is going on either. Hugs.
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Leah, so sorry for the progression :-( Hugs to you.0 -
Leah, I am hoping the Doxil will give positive results.
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I purchased some Matcha tea today. I found Milk Thistle. Is it worth it to take Millk Thistle? It is supposed to be good for the liver yet I do not want to overload my liver with mets? Am I thinking of this wrong?
I continue to send you positive energy Leah. I hope you were able to get some rest in the last 24 hours.
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Freygea and everyone,
I don't post much, mostly reading, today did my 6 of 8 Tykerb/Navelbine treatments, almost no SE and worried is it working. Is not it funny? we have SE and complain and when we dont we think oh, maybe its not good... thoughts?
But that is not why I'm writing. I have an oncological herbalist at the Centre for Natural Healing who is just amazing, he works with my oncologist and according to the chemo I am getting, he designs my protocol. I am taking handful of all kind of supplements morning, night and even some in the afternoon. Milk Thistle and Matcha tea is on that list. PM me if you want his contact, he is operating I think from Oregon, but mostly uses Skype and email. I saw him only once on Skype at the "meet and greet" 3 years ago, but we commucate regularly via email. He is a real gem.
I must say I love love love Matcha tea, try Starbucks Green Matcha tea latte, it is not on their wall menu, but they make it if you ask them (I think its on their Secret menu). Hope it helps.
xoxox
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Thank you Ella! I really enjoyed my cup of tea tonight. I will grab the milk thistle this week. No dag Starbucks here in the Lower Keys that is close enough to get to but will definitely try one on my next visit to Key West. I am currently using Turmeric,Matcha Tea and will add the Milk Thistle . I will try those for 4 weeks and see how I do.
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