How are people with liver mets doing?
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Max Otto, Kathy, I wish I had some good words to share. I'm struck by your kindness to let us know about you going into hospice care. I'll be praying for comfort and peace for you and your husband.
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MaxOtto, Kathy and Juergen, Wishing you peace as you are in hospice. I have great admiration for the gift hospice workers give to the dying and also to the family.
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Max otto. Sad words to hear but so thankful you let us know. Keep us updated if you can.
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Kathy and Jurgen - I am very new to this thread but my heart goes out to you and your family. I pray for your comfort and dignity. In hospice, I hope you are able to reflect on the beauty of your life and remember..... and I thank you for reminding me....to FIGHT! No matter how ugly it gets.
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Lynne, thank you for your kind words. I hope it is soon, too, since I have been snapping at my kids. I don’t feel stressed, but I obviously am. And teenagers don’t make it easier!
Kathy & Jurgen, I pray this is a peaceful time in hospice, even though I wish you didn’t have to go. I hope good memories and laughter fill your days and that you have restful nights.
-Erica
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Hi JFL, I am so glad to hear that Xeloda lasted you a year and put all the mets to sleep ... I failed Xeloda pretty quick... Right after that they put me back on the AC/T treatment I did 2 rounds of AC (then I'm maxed for life on that, since I had it before) then I did Taxol for 4 months. Just failed that as well... my liver had the 2 main lesions and then looks like leopard skin with many more there... so there was an explosion with me as well.
QUESTION for you.. I start Doxil tomorrow.. looks like you've had some success with that... then halieven is next... How did the Doxil work for you? What were the side effects.
Gook luck to you.. hope you are doing well. I'm very scared that I'm running out of options... and my time won't be long.. but all you girls are cranking it and pushing forward. Thank you all for your positive attitude on this board!!
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Dear Kathy and Jurgen, words are inadequate to express how sorry I am. May you and yours both be surrounded by loving arms.
In peace, Katty
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Max_Otto (Kathy), thank you for updating us. It means so much to receive your updates as we are here supporting you from afar. I am so sad to hear you are in hospice but so happy to hear you are there with your loved ones. I was hoping chemoembolization or another Hail Mary treatment would turn things around. My thoughts are with you and your family. I have enjoyed our PM exchanges. I also remember from many years ago you noting in a post that your screen name came from the names of your cats! I thought others may be interested to hear that.
Take care,
JFL
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I'm so very sorry Kathy. I don't post much but do follow. I wish you peace and like others am struck by the kindness is letting us know. I loved your posts. This is a terrible, ugly disease and is completely no fair. Peace to you in this time.
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I'm stuck in a holding pattern waiting on Xeloda to get approved by my insurance. There's some kind of inexplicable reason they are denying this time but approved back in February. Grrr How can I start fighting if I don't have the pill?????
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Grannax2, I’m so sorry you have to wait, waiting is so hard, whether it is waiting on scan results, or like you, waiting for your treatment. I hope your insurance approves quickly and you start Xerox’s and it does miracles for you!
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I just had a follow up PET to see how active the new and previous lesions are that progressed Taxol.
They went from SUV 4.4 to 7.3.
I'm really struggling to have hope and really scared of the resistance and progression on Taxol.
Hugs all
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Leee - I wish I had words of encouragement. I'm trying to think back when Ibrance did nothing for me, what someone could have said to make it better, I don't think there are words. But sometimes hope comes from outside of ourselves, Leee I have hope for you...
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Leee, I’m so sorry to hear of your progression. I too, have hope for you. That your doctors will find something that works. I pray they find something soon so you have a new plan. When do you see your MO to discuss options
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My liver mets returned after 6 years NED...I am bummed!!! Liver biopsy showed same cancer HER2+ same spot...one cell must have been asleep for 6 years and decided to wake up. Started on TDM1 and am ready for third dose this Friday, Finished 5 radiation sessions last Friday. Feeling absolutely crappy!!! Tired and short of breath...treated differently 6 years ago with Gemzar and Perjetta. Was on Herceptin and Perjetta for 6 years!!! and regular PET scan picked up new lesion. Feeling vulnerable right now....any advice?
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TerrySB what is TDM1? I recently had progression in liver and lung. I will start X tomorrow. Six years is a very long time to lay dormant. Sorry
Leee Will this be your second line or third. That a big jump in uptake. When IL failed I took AA, I would not recommend it. I star Xeloda tomorrow. I'm hopeful it will work on my liver and lung progression.
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TDM1 is a drug also called Kadcyla given IV. It is Herceptin plus another drug that acts similar to Chemo and has a lot of side effects (that I am feeling now!)
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Leee, Of course you are scared! We all feel that way when we face progression. This horrible disease is hard to control, and sometimes it feels like a crap shoot as our medical teams try to determine what is next for us. There have been many people before you who have seen Taxol fail them but go onto another treatment that worked. Every one of us is different, and so are our diseases. I have been lucky enough to have had two treatments work before progression set in with each one, but my last two treatments failed by allowing progression without giving me any benefit. I know how discouraged you feel. I have not yet had my first scan since starting Taxol, and I am crossing my fingers that it is working. If it is not, I will be on to the next offering. In my opinion, right now you are in the worst time of the process - waiting for a new treatment plan. I am sure you are feeling powerless, sad, nervous, and impatient. When will you learn what the next steps will be? Please keep us informed about what is going on. In the meantime, I am sending you a virtual (((hug))). Remember that you are not alone. We are always here to listen to you and support you. I hope your next course of treatment knocks out those nasty cancer cells and keeps them under control for a long, long time.
TerrySB, I am sorry that your six years of NED came to an end. I wish I had some good advice for you. Hopefully, TDM1 will bring you back to NED quickly. I have seen that happen to others. I think that the combination of radiation and chemo would be a big assault on the body, so it might explain why you feel so bad. Has your MO recommended anything to help you feel better? How soon will you have another scan? Just remember this - treatment brought you to NED once, and it can do it again. I will keep you in my thoughts.
Grannax, Have you swallowed your first handful of Xeloda pills? I hope theytreat you gently while they beat up those cancer cells. May you have a long successful experience with Xeloda.
I hope that every one of my fellow liver-metsers is finding some joy in this day. To those who are in pain or emotional turmoil, I hope you find relief soon.
Hugs and prayers from, Lynne
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Happy X-DAY Grannax!
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My port is out!!! Something I can celebrate! It has caused me excruciating pain for six months! Now to see the onc. On Friday and hopefully go on Xeloda!
Hi Lynne! Side is much better now I just have to wait for the port area to heal! Oh to be able to sleep on one of my sides!!!
Grannax, hope you got your Xeloda and have started on it!
Thinking of all of you
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Gracie, WOOHOO for getting rid of that port. I can’t believe that it took so long for them to remove it. I remember when you first told us how painful it was. There was obviously a problem there. Well, st least it’s out now. I hope you continue to heal and feel better soon. Let us know how things go during your appointment with your onc.
Hugs and prayers from, Lynne
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Kathy and Jurgen - I am thinking of you both. My heart goes out to your family and to you. May you be surrounded with love.
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Gracie I took my first pills last night, this morning diarrhea, I was not able to control it at first. Not a good way to start my day. Yuck. 💞
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Grannax, the best recipe for Xeloda diarrhea issues is daily yogurt or kefir and a supplemental high potency probiotic. The few of us who took those religiously didn't have major problems with that. If I skipped yogurt for more than 3 days, I would start to have problems.
Tina Marie, Doxil worked well for 9 months. I liked that drug. Month 2-3 can be challenging with rashes and hand/feet issues but once that clears, it is a very doable treatment. Good luck!
I am off the FGFR trial. Super disappointed and concerned. I had a PET that showed liver progression and 1 bone met. My bones have been NEAD for over 4 years after a very traumatic diagnosis of very late stage, grave bone mets in nearly every bone in my body
My bones were so bad at diagnosis, I didn't even focus on my liver full of mets until 1.5 years into my diagnosis. Based on that, any mention of bone mets scares me. I was a few weeks away from dying of bone mets at diagnosis which I didn't even know was possible - heading toward hypercalcemia coma, which required me to have my baby 7 weeks early. I met with my MO today and he put me on tamoxifen. I may start navelbine next week (added to tamoxifen). I am required to get a port for that first. My MO also said that Y90 may be an option and to consult with my IR. If I do not add navelbine, another additional drug he is considering is testosterone. I have never heard of that as a treatment but it was one of the first treatments and people just forgot about it over time. I have heard of androgen receptor treatments but this is the opposite - just straight testosterone. My cancer center has two women on tamoxifen and testosterone and one is doing well on it. Anyway, not sure what is ahead for me. Feeing really sickened and sober. All I think about is my now 4 year old.0 -
Julie, I am hoping and praying that will do it for you!! Sometime the simplest solution is the right one.
This study might interest you
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Thanks, Daniel. That is indeed interesting.
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Grannax, my hubby (who used to have a lot of bowel issues) and I both swear by unsweetened ground coconut for diarrhea; you can mix a tablespoon into some yogurt once or twice a day as needed. We first heard about this as a remedy for a dog's diarrhea - it worked for him, too! Be sure to stay hydrated and replenish your electrolytes. Hope it clears up quickly!
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Grannax, hope that gets better for you.
That’s what I’m most worried about, because I already have colitis. Will just have to see how I react to it!
Start Xeloda in the morning, 4000 mg daily, 7 on, 7 off. Hope it kicks butt for the spots in my liver
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I started a y90 thread. If anyone can help me, please go there.
Thanks.
AB Sunset
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I've had 2 opinions for progression on the liver on Taxol.
#2 MO says another single agent Halaven (less aggressive) #1 says Gem/Carbo.
Any thoughts appreciated
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