How are people with liver mets doing?
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Ronniekay YOU are sooooo funny!
Welcome Kim61! It'll be interesting to hear what they say at JH.
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Leftfoot..happy dancing for you too...but in my clothes this time
. Jo & I seem to log on in the wee hours..usually the same time, only with a 3 hour time change bestock...I was on cytoxen 1st time around in 09, with taxotere & herceptin. I don't know about the E drug. Sorry about neulasta giving you trouble. I just don't get it...seems like a magic med, what it does w/white cells. Used to make me sore but not any more. My onc said it can do a # on red count when I asked about others having to get blood. My hematocrit was 38...she transfuses at 25. She said transfused red cells last a few weeks-which is great. Feel better fast-ok!
Kym...gotta get back to rock star status! Funny you said Navelbine or gemzar...my onc said Navelbine right off the bat. I asked for gemzar cause I saw another gal alive 10 yrs after liver mets & she did gemzar. My onc said nav is gentler...she loves it & it's worked for me...and her other patients. I'd say I feel more like a back-up singer, but that's ok w/me
. Anyhoo...yahoo shrinking tumors...be gone! Happy Mom's Day to all my Sisters who are Mamas!0 -
Thanks for your response. I'm still waiting to start treatment. It's so hard to wait knowing my liver is currently covered with tumors. I didn't qualify for a hormonal study. My doctor is currently considering FDA approved chemo or clinical trial chemos. I don't know how I feel about either choice. I feel so nervous.0 -
hi everyone. I've saw onc on Friday and after 3 cycles of navelbine markers have have gone up. He is raising dose and after next cycle I get a scan. Has anyone had a good result with the higher dose when lower dose didn't work.? I'm worried now (in fact I'm in panic mode) in case lungs start progressing. Lungs and bones have been stable almost two years..
HELP!!!!
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Does anyone have an opinion about following FDA approved chemo vs participating in a clinical trial?0 -
Muther...I don't remember what my dosage is...even though they say it over & over during each infusion. I know you have pills, where it's only infusion in the US. I hope the higher dose gives stable back to you..watch white count! Neulasta is my friend!
Susan...I don't know anything about trials...I would just want a tried & true...but we all know that is a crap shoot too! If you totally trust your onc...maybe you'll know the answer!
Happy Mom's Day to all Mamas!
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Hi Suzan8874,
For a medication to be FDA approved it has to go through a three phase trial and prove that this medication is beneficial and that these phases where somewhat successful. In trials it is different , they choose eligible people for a specific med with a specific disease and the outcome would be recorded with all its pros and cons. Meaning they do not know the outcome before many people trying. So we owe the people who go to these trials for all FDA approved drugs. I hope this answered your question. I have to add also that even when a drug passes the three phase trial and it is approved for general the general public it will still be called a trial drug since it will be used for a longer period on a patient , and it may show other side effects, this way they can improve it.
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hello there Jo Canuck!
Glad to read a post from you!
How are you doing? Stable liver scans ! Sounds great! But yes living from scan to scan is tough!
I have lost your email address, sorry to say.
Lots of changes in my life...sold our Wakefield cottage to one of our four children.
We will be going there ( Ottawa )on the 21st to help them open up for the season...means I will be in Ottawa for the first time since last September...maybe we could get together...or at least talk on the phone.
I am feeling very well, doing everything I did before the liver mets diagnosis but of course concerned about the plateauing of the Xeloda
My onco doc says not to worry which means keep making travel plans which I am doing.
Happy Mother's Day!
Carol
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dear blondie1
I have liver mets ....diagnosed 14 months ago ....stage 4...was told I had 6 -12 months unless I had treatment ...
Started Xeloda pills last May....my tumor marker was 2900! Very high!
It is now 37 ! That is a 98 % reduction !
I am feeling fine....doing everything I did before diagnosis....gym several times a week, gardening, painting, traveling...my friends all tell me I look great!
For those of you on Xeloda, we had to reduce the dosage due to diarrhea ( severe ) . I still experienced diarrhea but less so my Hospice md ( yes I have a hospice md, a wonderful support) suggested chia seeds which have taken care of the problem totally...I take a tbsp twice a day and I have normal stools.
I have N0 fatigue and minimal hand foot syndrome, I do have dry eyes which affects my contacts so I have to treat that .
I keep reading about all the various tx for liver cancer mets ....so I am sure you will find one for you.
Keep us posted?
Carol
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dear susan8874
Xeloda works directly on the liver....goes there first.
Is that not an option for you?
It has been working for me for 14 months....see previous entries...although it has just begun to level off.
Keep us posted and be encouraged!!!
Carol
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Hi Mutherflush,
My mom has liver mets and multiple lesions on the liver. We started with Eribulin and after 3 dose it did not seem working. We increased the dose and it seemed working for 2 dose but the third dose the markers of CA 15-3 have again gone up. We have a scan on Saturday and hoping that the dose is working. This board is the only sense of hope when i see so many people with liver mets. As a son i feel so handicapped seeing my mother in this stage and not be able to do things and get her fine. Just hope that this nasty beast has a solution for everyone and god upthere gives blessing to all of us .
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Had my 3 month scan today (have had a total of 23 taxol infusions); results were "STABLE." Yes, I'll take that. Very slight reduction in 2 out of 3 liver mets, in mm; bone mets appear stable. After a long stretch of constant progression, this is defin. good news. So far, have had stable scans since beginning taxol at end of Sept. See MO tomorrow; little concerned cause of some neuropathy, not sure if there will be any tx/dose changes or not. Hate to "fix it" when it's working.
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This place definitely makes me feel better. I'm 43 years old and have two beautiful girls, ages 17 and 14. The hardest part is feeling the symptoms and not being on treatment yet. My oncologist told me that we have time, and it was important to choose the right treatment. Thanks ladies for the feedback. Have ya'll heard anything about the Donna Eden Energy Medicine? I don't think it would hurt. We have the ability to control our attitude and belief, and maybe that's what part of it is about.0 -
Susan8874, have not heard of Donna Eden Energy Medicine, what is it?
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Hi all, I thought I'd post to this thread since I finally got some good news re:my liver mets. I was dx with mets to liver, lungs and bones 20 months ago. I've been on several different chemos which addresses the lung and bone mets pretty well. My liver mets had been slowly growing in size and then really jumped up after trying faslodex. I've been on Doxil for 3 months now and I finally saw shrinkage in the liver lesions! Yeah. I also have normal liver function during this entire time and my onc even allows me to have the occasional glass of wine. Anyway, I thought I would post because I knew how worried I was that the liver mets just didn't seem to be responding to treatement and finally after 18 months I found something that works. Hopefully I'll ride the Doxil train a long time.
Annie
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Yay, Annie! Thank You, God!
I, too, have had shrinkage in my liver mets. Unfortunately, I had to discontinue the combo I was on - perjeta/herceptin/navelbine. I think it almost killed me. I ended up hospitalized because my liver function numbers, including bilirubin, all went through the roof. My skin and eyes were yellow, and my urine was bright orange. Now, I'm taking a little break before I start veliparib and temodar (I'm also currently fighting some sort of skin infection, maybe cellulitis). I thought I was a goner, but the Lord heard and answered our prayers.
:-) Penny
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Hi Susan, I live in the SF Bay Area and went to UCSF to talk about a specific clincial trial -- turns out it wasn't for me. But I learned A LOT! There are different stages of trials so some of the ones coming close to FDA Approval are really just confirming dosage etc. In fact, the one I checked out at UCSF allowed you to switch tracks if one didnt work --this is unusual I understand.
I additionally went to MDAnderson, and the dr there told me "if an approprate trial is offered for you, take it. With limitied options it improves your chances:)" So, all in all-- we must each make our decisions, but I came away thinking clinical trials can certainly be appropriate and have the added benefit of helping move science and medicine along.
Here is a web site you may find very useful; -- it covers more than UCSF and gives a good overview. : //cancer.ucsf.edu/clinical-trials
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Penny, I'm glad to hear that a chemo break will allow you try a new treatment. As for the cellulitis, I had an episode with that years ago when I had a re-excision on my lumpectomy. Wow did it hurt. Some good anti-biotics fortunately cleared it up but boy you have my sympathies. Annie
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Annie62 - congratulations on the Doxil working!! I know the feeling of long periods of nothing seeming to work. I will keep Doxil in mind for future. How is it to tolerate? What's the worse s/e you've had?
Penny, sorry to hear you had such a negative reaction - hang in there. Do they know which drug it was that was causing the most problem? I understand navelbine suppose to be fairly effective against the liver mets.
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SyrMom - they really don't know if it was the perjeta or the navelbine, although my instincts tell me it was the navelbine. However, my oncologist said they're now finding that patients who are on perjeta who were on tdm1 in the past are seeing "flare-ups" of enzyme levels in the liver - it's like the perjeta is acting like a catalyst to the tdm1. This is happening even in patients who've been off tdm1 for a year. We knew tdm1 can cause rising liver enzymes, but who knew that it could happen much later, after being off it for a while. It reminds me of people who did acid and have flashbacks lol.
:-) Penny
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Penny, my goodness what a thing to go through. Thanks for the info and glad you are back on track.
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Hello everyone ,
Just wanted to share as i think it could be helpful . My mother has metasis to the lungs and multiple lesions to the liver. We started with Eribulin ( Halaven) in January . In March CT scan there was a progression with the Biggest lesion increasing from 4.1 x 3.1 cms to 4.2 x 3.3 cms . Halaven is normally given 2 amps ( 2 injections) but then the doctor in US who is helping us said as per my moms weight 67kgs and Height 5.3 ft she should be given (3injections) . We now did a CT scan after 3 dose ( 6 cycles) and after the increase in dose the Biggest Lesion has reduced to 3.2 x 2.5 cms. If someone is having a similar issue please check if the dose given is correct as it can make the difference. CA 15-3 markers are going up and down by 10% which I still cannot understand but am happy that the medicine is showing some results.
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JCSindia - glad to hear the good news about your mom's liver lesion. Thanks be to God. Thanks for the dosage advice, also.
:-) Penny
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Great to hear your meds are working syrmom. Hope things stay that way!
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New to this discussion and have a question - I was originally diagnosed with breast cancer in both breasts in September 2008 and have just been diagnosed with metastatic disease in my left chest wall, and possibly my liver. My question for you all is if any of you have any information about not being able to biopsy tumors in the liver because of the location. I am told the nodules in my liver are underneath the diaphram making it next to impossible to biopsy. The location also made it unclear on PET/CT and CT so the radiologists reading my scans just couldn't call it metastatic disease or hemangiomas. I have had one second opinion from another radiologist and am looking at a third opinion. Any information would be a great help!
Wishing you all the best,
Cathy
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Thanks, smiley47. Are you still on taxol? How is it treating you?
cbrogdon, can't really answer your question, however, I had an opinion for cyberknife on the liver mets before chemo. I wasn't a candidate because of the location of mets. Location can be an important factor. When I had a second opinion in Boston and it was during the time of questionable mets to liver, the mo there said, "in time the answer will be revealed." How correct he was. The next scan showed without a doubt, liver mets, the following scan added another liver met.
Thanks to everyone for your ongoing cyber strength/prayers/support.
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Syrmom,
Good news ! Yayyy i am very happy for you and STABLE is great
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Woodylb .... thanks! Yes, I will take "stable boy" any day.
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Well, scan results are in and I am very happy and so thankful for Taxotere treatment even though I have found it tough - four rounds of taxotere have reduced the main liver met by one third, to a cyst-style structure 16mm across that has a liquid centre made up of necrotised cels. The two tiny freckles that were visible at met diagnosis are now so small they cannot be measured and my lovely onc assumes they are toast. Woo hoo! Two more rounds of Taxotere still to go, and with this knowledge I can happily get through the next six weeks, then I will be sent for liver surgery to whip out the two adjacent affected lobes. Yeay for chemo, year for my onc and yeay me!
Boo :-)
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Thanks for asking syrmom about the taxol treatments, I have gone off that treatment for now until I have had my scan; which is next week and then I will have a meeting with my onc about what treatment to do next. I had originally thought I would be going on faslodex but after our last meeting she said that was only available if I had progression of my cancer. I might go back on taxol if it is working and it is deemed the best treatment for now because my side effects were minimal and after the last scan the liver mets had halved and bone mets were healed. Do you take any vitamins or herbal supplements to aid your treatment plan?
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