How are people with liver mets doing?
Comments
-
Holeinone, it is definitely a hit or miss situation. if your current treatment kicked those buggers to the curb maybe time to switch to some dandelion killer? Maybe something without the SE's that will allow you to perk up and feel better? I had a second opinion yesterday, have to drive only 90 minutes which is not bad. I also have no idea if insurance is going to cover and hope I don't get a shocking bill. But I just want to get familiar with another doctor in a major center for the down the road. She has a very clear and patient way of explaining things which makes me feel calmer so well worth it to me.
0 -
Artist, very impressive that your 2nd MO was so prepared. The plan for me is to start Flasodex in mid July. My DD asked me if I had considered skipping Taxotere #6. Oy, I thought about it......tough decisions, no clear answer. I feel like damn if do, damn if you don't. Also see a spinal surgeon to have kryroplasty ( sp ) done on T 10. Watching summer go by, holding down my recliner. I usually play in 2 golf leagues & numerous tournaments. Also lots of tennis. I realize those days are behind me, and that's ok. Whenever I get "down", I remind myself how many much younger women are going through this. Breaks my heart to see how many are raising kiddos. I turned 61 last month. I always felt younger than my age, now, not so much
0 -
Artist, so glad to hear about your fabulous 2nd onc. The way you describe her reminds me very much of my own. Lovely! I seriously hope you don't get a bill. I am definitely keeping the carbo so long as it lets me. A little worried that lengthening infusion time and adding Benedryl may not work (or not for long) but mostly feeling good about it. No nurse or pharmacist seemed at all concerned about it. Just worked like a finely oiled machine to get the reaction under control and said next time we'll do it this way and it won't be a problem. I'm trusting them. Would love to hear from someone allergic who's been on this path but it doesn't seem many do carbo for long. I guess I should just count myself lucky. It's been almost a year.
0 -
Hi, Well I finally decided on ablating my one liver tumor 8 days ago without following up on cyberknife, or the proton beam, because this is what my medical center recommended and had available. I woke up from surgery to find the surgeon, who was there to help the IR doc with his camera so he could hold back the gall bladder, telling me he decided to do a laparoscopic resection to make sure he got everything instead of just an ablation. My recovery is doing very well I'm told, only 5 small holes with some abdominal pain still, no pain meds anymore though. I did go to the ER last night because I had a fever for a second night in row so they wanted to check for infection. Everything is just fine, no need to worry.
I plan on continuing on Faslodex and the scans and markers will let me know if and when I have to start Ibrance which was quite effective. I"m very curious as to what happens to the tumor markers if there is no tumor left. Nina
0 -
I have liver mets and the chemo; now Faslodex seem to keep the buggers stabilized. Since shrinkage after initial chemo, no growth or changes to the now reduced tumors. I have hope.
0 -
Bev got her drain installed on Thursday. I did the first home drainage today. We drained less than 500ml. I used a less than exact means of determining this, I weighed the bag when we were finished and it weighed 500 grams. So its probably closer to 400 ml drained. That's fairly low for two days (approx 0.2L/day). I will keep track of the volume to see if it rises again as she gets into another xeloda cycle.
She is starting xeloda again today. Doc says she can do two weeks on and then two weeks off. That's rather unorthodox, but as long as it works thats all that matters.
Unfortunately at the Oncology rounds on Thursday where he brought up Bev's case, the ascites that came on only after starting chemo, no one had any new suggestions. We were rather disappointed. Seeking a second opinion seems to be rather challenging.
0 -
Oh that is disappointing Timothy. We all always hope to walk away from that appt. feeling lighter, more optimistic and sounds like you didn't. It just keeps the stress building until the next time.
Fantastic activern! We all need reasons for hope! I would like to get a good year out of a med but really we all hope to keep going on "the one" indefinitely. kaayorg, I am glad you can keep going and hope you don't have anymore bad reaction. May carbo last and last for you!
Yes Holeinone, Like you I always felt younger than my years and was very active. One of the hardest parts is the limitations we suddenly start facing. Like aging in warp speed. Was not even close to ready for that.
Nina, that's pretty amazing science I must say. I hope I have an opportunity like that someday.
0 -
Hey guys, wanted to check in and let you know how the clinical trial is doing. After I completed two cycles of chemo/study drug or placebo we did a CT scan and tried to biopsy for tissue to send to the drug company. Things are going great! The cancer that was in the lymph nodes in the shoulder resolved! The largest used to be 1.4 and it went down to 7 mm! The lymph nodes with cancer near the tip of the pancreas also reduced in size and mass! And best of all, the cancer in the liver was halved! From about 6 cm to a little over 3 cm!
Needless to say, both my doc and I are very excited. We don't know for sure if I'm getting the study drug or placebo, but with those results, we think it is the study drug.
The trial is for triple negative stage IV and is taking place at Vanderbilt in Nashville. I think they stil have some open slots.
Since there aren't to many things out there for triple negative, I'm hopeful this immunotherapy will be successful and be available on the open market soon
0 -
Mattie fang- so happy for you-those are great results!!!!! Happy Dance Time!!!!!
Babs
0 -
mattie - contratulations on the spectacular response to whatever you are doing. what is the immunotherapy drug that you are (possibly) on. do you have a link to the trial?
>Z<
0 -
Waiting for PET scan. Ugh!
Babs
0 -
hi all. Been on vacation with my horses. Just got latest markers, down 75% to 49.5!!! I'm thrilled!! Had to share.
0 -
LvnAZ, what wonderful news!
So happy for you!
Glad you could celebrate with horse time.
warmly, Stephanie
0 -
mattief so happy for your wonderful news. i know someone at the bones thread that has now triple - could i post ur post there, for her to follow up?
0 -
So Dani's Pet/CT showed these 2 liver spots, should I insist to Onco it should be biopsied or wait for tx to take effect? We are really anxious about it.TiA
0 -
Lvnaz. Great news. Celebrate🎉🎉
Bab
0 -
Lvn, great news! Your horse is gorgeous! Momallthetime, I wonder if they use size to determine if the tumors should be biopsied yet? Babs, I hope you got through the scan OK and treated yourself to a "perk me up". Let us know how it goes. We'll be thinking of you while you do the torture wait.
0 -
Artistathea-went right to Barney's for lunch and a shopping spree!!!!! Now I need to return some of it since I HATE trying on in stores. Going to Fla tomorrow to visit my folks. Should be nice and hot and, my Dad hates AC!!!! At almost 95 years old, he gets cold all the time! Waiting there will be a challenge since they don't know that I "graduated" to stage 4 and that I have mets. Will have to whisper on the phone-which is ok since they're both hard of hearing at this point!
Babs
0 -
Oh hahaha Babs, you are just like me. I hate trying on clothes in the store. I used to return so much stuff I thought they were going to think I was a chronic shoplifter! Sweltering and yelling everything all week huh? Sounds like a challenging time but what a blessing to still have your folks around! I took the ddep plunge and bought a new car yesterday! Then got home and felt some buyers remorse but just a little....
I needed something more reliable and updated. My old car was 14. Can't believe all the cool features the new ones have. I just want to drive so I can listen to the new sound system! Hope it not too humid for you down there!0 -
Artistathea. Happy for your getting a new car! We deserve to treat ourselves (which I have a hard time doing now). This summer is our 45 th anniversary and my DH asked me what I wanted. Silly me said nothing. With all we go thru material things just don't mean the same. He was so disappointed. My friend told me that I need to let him buy me a gift so off to the jeweler when I get back.
So enjoy your new car and all if it's wonderful new features!!!!!!!
Babs
0 -
Scans are in and I'm NED. Sooooo happy. Had to share with you all.
Bab
0 -
Congrats Babs, so happy to hear that!!!
Alissa
0 -
Babs, That is fantastic! Super happy Dance for you! Also, married for 45 years!!!!! Super congrats to that as well! Now you MUST let DH buy you a gift. Just think really hard about something you have always wanted but never splurged on. Think outside of the box. What is something that could add some real pleasure to your life? I am the same way. Used to love buying clothes and shoes, and books. Now I could care less. I have just lost my enthusiasm for spending money on "frivolous" things. Plus we have never been "well to do" to begin with. We work really hard for our money and this diagnosis of course has drained us even more. I've been cleaning out a lot of stuff I've accumulated over the years, downsizing. But the car? I decided since I have no idea how long I will be here, and it COULD be years, why drive around in an old car that I worry about potential mechanical problems? Now when I take even a short road trip I have all the safety and creature comforts that make it 10 times more pleasurable!
0 -
excellent news Babs! I would sooooo love to hear those magic three letters it must feel wonderful. I'm also doing well on Xeloda. Last scans showed shrinkage in liver and bone spots now gone or barely seen! I feel good on it too, just sore feet but hey, years of wearing silly shoes I'm used to that. Hope you celebrate well
0 -
Alissa-thank you
Artist. My happiest times are being with those I love-that's all I really want!!! The other things are fun but after all we've been through it just doesn't matter any more.
Isy my first scans at 2 months showed 40% decrease and now at almost 7 months NED. Never expected such great news but loving those 3 letters
Hoping everyone here gets to hear those 3 letters too
Babs
0 -
Babs, I think the gift thing is more about making the DH feel good. My husband gets very anxious when I say "nothing". He just wants to show me his love so much and to him just the devotion and affection does not seem like enough to him. Not sure why as I have never been that materialistic. I would rather buy a tool than jewelry. When I got that car the other day, he could not stop smiling and kept calling to see if I was "taking a drive?" Of course I was pretty excited too which made him feel VERY happy!
0 -
Babs, big big congrats and a very perky happy dance ! Celebrate it with joy 🍾🍾💃🏻💃🏻
0 -
Livinz , you look great ! And wonderful news keep going. Your horse is gorgeous and i believe he is your best therapy 🌸🌸👍🏼
0 -
Artiist. You're so right about that. When my TMs hit normal DH bought me a small piece of Lalique. He was so excited about it. I did love it but the last thing I needed in a small NYC apt was another decorative thing to put out!!!! But it gave him so much joy to give it to me!!!!!
Babs
0 -
Hi all,
Looks like I'm joining liver mets thread now. I had one small spot on my last cat scan two months ago. I recently had another cat scan (few days ago) due to cancer antigen numbers elevating each month for the past three months, the last month showed really high. Anyways, my liver is normal in size and the blood work info on my liver looks good, but, I have multiple lesions that have increased in size and number and smaller nodules that have developed from prior cat scan. My oncol put me on Megace two weeks ago but had 'the talk' with me Friday about chemo down the line but he didn't know when. He did say there were many options, that some chemos are by pill, others IV, and with some, one wouldn't loose their hair.
0
