How are people with liver mets doing?
Comments
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Leftfoot,
Always happy to hear from you, and happier you are feeling better. Resentfulness and anger may consume a person though it is a normal reaction to disease and fear. Congrats on your 5 years anniversary and i wish loads of them . I am grateful we are all still around to enjoy the simple things in life. May you be merry and happy this holiday and always.
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Leftfoot, I totally get your feelings and sometimes wonder if i have lost most of my true joy over things such as Christmas. However I do agree with Woody that these feeling can consume us and I am working hard to try and find some joy again while I am here. We have no idea how many years we may go on so we might as well live as well as we can.
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Mamaplus2twims,
Comgrats on your good results ! Wishing you a clear second scan in the coming months.
)Kaayborg and Artists,
My initial reaction on my second dx with liver mets was horrible because it came around Xmas. My husband and I had a tearful one thinking this would be my last. But as i started my tx and even though they were not famous the little voice in my head stopped all my energy was focused on the now and the thought that i may actually survive this , ( well at least for a while) . I thought for now i am alive and i do not want to think about later because it will hinder the one i have now. It is not easy to shut that little voice but once it is done , you feel the difference and it pushes you further. I hope you both get to this place and enjoy your lives for a long time.
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Thanks Woody, I am definitely getting better at telling that little voice to shut the hell up! LOL! Because I have come to realize i can make myself crazy over the worry and fear and that just ruins the now. Easier said than done but it makes such a difference. My new liver doctor has helped in this regard quite a lot as he is very 'no nonsense' but at the same time very upbeat and encouraging. I love him.
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This is all so true. I know it! And I love when you can pinpoint something so absolutely certainly. I, however, am still stuck in the glum for reasons unknown. The literal sunshine is supposed to come out today and tomorrow and we've got fun family weekend plans so things should be looking up. Maybe I'll get great scan results, too. I expect so as there's no indication of any issues but as we know, one never knows.
I do wish everyone a wonderful Friday and on to a great weekend, too!
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Artist
I am so happy you like your liver doc , it really helps to actually liking the one who would be treating you.
) have a nice weekend.0 -
Kaayborg,
I hope you get great scan results so that little voice shuts up for a little while my prayers are with you.
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I recently joined the Ibrance discussion group but want to report to the liver group that I had a 14 year run on just femara. I went NED after 6 months. It was only one met but it has now resurfaced near the same spot in my liver. When I was first diagnosed I found it hopeful to hear stories from people around for a long time with mets to the liver, so I share my story. I now am on faslosex and Ibrance, doing well so far. Nina 🎶
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Wow NinaCA, 14 years on Femara / Tetrazole! How fantastic! I want that! I hope that your single met can be zapped with treatment and that you get another long run on Femara. Boo.
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Sandilee and Mama2twins! Hi thank you for your encouraging words! 2 more days and it will be the monthsary of my diagnosis. I can totally feel that my spirits are getting better---BUT then again it may just be because I am on a 1 week chemo holiday! hahaha I know I was just in a slump a few days back. I am in such good spirits, I feel like a completely different person. I attended a Christian praise group and that really really lifted my spirits up. I am not one of those very religious person. I don't go to church, I don't read the bible. Yesterday, I went just because I don't want to be alone at home while my husband goes to the gym. That may just be one of the best decisions I've made. The power of praise, and knowing that I have nothing to lose if I put my faith in Him. I am not here to preach, so I am not going to start spouting bible verses or lyrics to a Christian song. It worked for me. Yesterday, my husband shaved my head. My hair started looking like Gollums', so we took immediate action and shaved it. I felt so loved. It is not always that you have a husband who is willing to shave your head 2x or willing to fight a cancer battle with you 2x. I am just absolutely thankful for whatever blessings I have right now--even with this horrible terrible disease. Being happy, having a warrior's heart is an ACT of WILL. You have to will it. Lift your spirits, make it whole, and the body will follow suit. I am already making plans of using mind over matter/mind control, when I go through chemo again Tuesday next week. Here is LOVE and POSITIVITY to all my Warrior Buddies.
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NinaCA,
you are so lucky! I will find my wonder drug---someday and I will live 14 years and more from it too! Femara did not do me that good. 2 years and then I developed mets to liver.
But still positive that there is something out there for me. congrats again and I hope you continue to fight this disease and be on the winning side. xoxo0 -
Woodylb, thank you. I am happy to report that the glum ended yesterday. Can't really pinpoint why but it may be because I had opportunity to help one of my students in a heartbreaking situation. I should really keep record of these things I determine that help my spirits (to reread in times of need) because I had reached a point earlier when I realized I was miserable because I had spent far too long thinking of only my own sad story. Even though the care I receive is so comforting and has been so instructive for me on how to care for others, I think it's most healing to continue giving care to others through this illness. The world is full of opportunity.
Second, to liveformybabies, I am just so thrilled that you are feeling so well emotionally!!!! And you have reminded me of more I should add to a journal of helpful reminders. It is a willful choice that your mind will eventually catch up to in genuine. I had once determined to just lie to myself. Let's just pretend this situation is a gift (not actually true b/c if it were I would surely return it), but just pretend that it is and concentrate on all the good that has come from receiving it because that latter part is real and not actually a lie at all.
I am sure the glum will return but we can fight it off like we fight everything else.
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kaayborg,
This is wonderful , i new it won't be long before you realize it. Being able to give and help others in our situation and very rewarding. It is a road which could lead you to tranquility and acceptance of who you are leading to stronger immune system and healthy place. I applaud you and think you are wonderful.
I am sure like all of us there will be time for another glum, for one reason or another but it won't like before and you will be able to shake it off quickly. So bravo !
Ilovemy2babies,
It is great that you feel the support and love of your husband at such time , it is a life saver. It is also very empowering over the disease. I did the same on my first dx and it included my son plus my hubby and all my friends. It felt so good and it really gave the strength i needed to keep going. I am so happy you are in this place.
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Will be lurking in this corner for awhile. My oncologist changed me to IV Kadcycla and it was a disaster. I got news on Friday, that 90 days on it and the mets exploded in the liver. I have been referred to MD Anderson if there is a clinical trial I can join. I had two wonderful years after diagnosis with Armidex, then Ibrance and the mistake of putting me on Kadcycla. I have great hope but am very realistic. In addition, I do have a strong support group. Still as you all know these progressions just knock the wind of you. Carolyn from Music City
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Carolyn
Praying for you!
Babs
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Carolyn,
I will be praying for you , i hope you are able to join a trial and get better.
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Carolyn, I'm so sorry for the terrible news. I'm sending you a giant cyberhug. Are there other Tx you haven't tried yet besides going straight to a trial? Try not to despair yet. It looks like you are early in the game here and they will figure something out. Thinking of you...
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Carolyn
Thinking of you and sending some hope and comfort. I believe there will be options for you which will work. I progressed horribly on Lxempra and now gemzar appears to be working.
The news is horrible and shocking. But always remember new treatment ....new hope
Keep us posted only best wishes
Diana
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Carolyn - Praying for your next great, long lasting treatment. It seems that the liver likes to explode with mets. Such was the case for me, too, anyway. Nevertheless, the explosion can be controlled.
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funny that - mine exploded too - on Abraxane. Onc likened it to someone throwing a pile of gravel in there and it just splattered everywhere. Seems like current treatment is clearing up the rubble. Yours will too
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Hello, Everyone. I've just been catching up with reading this thread after taking a computer break. I was working on some projects that turned out great, so I'm happy. In the way several posters have mentioned, I have been able to enjoy today and not dwell on fears about the future. Learning to be busy enough to ignore bc, but not so busy I get exhausted. I don't think I can catch up with replying, but I am thinking of you all.
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A computer break is a very good thing. I am glad you took it. It would be nice if we could all sit in the same room for a couple of hours every now and then. Still, very grateful for these boards. Imagine how much more disconnected and alone patients must have felt even just a decade ago.
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Kaayborg,
You are right , we are so blessed to have these boards, to be able to share all the ups and downs and connect with people we never met but to be able to share all the emotions , is wonderful.
It is a lifesavor.
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Thanks Ladies,
I so appreciate the response. I so appreciate knowing that there are others whose liver "exploded" with mets. It makes me think there is still some hope out there for me to have extended time with this nasty disease. Prayers for all of us. We deserve some good breaks now!
Carolyn from Nashville
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car2tenn- I am also one that had liver explosion. Within 6 mo of having normal liver enzymes, my numbers went to 1600, 300.300's. Down some now, but holding high. I'm not throwing in the towel yet! Wishing you the best. Moni
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I'd like to share good news. This week's PET-CT scan shows that I continue with no FDG uptake in my liver or elsewhere. That means my scans have shown NEAD for a little over a year now. I didn't think I was having scanxiety, but I felt so light and happy after I heard the results. Wishing more good news coming up for everyone here.
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wonderful news Shetland ! Specially right befor the holidays. Happy dance for you and may you continue to show NEAD for a very long time .
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Shetland that's wonderful news!!!!! So happy for you!!!!! I hope you remain NEAD for a VERY LONG time!!!Babs0 -
Shetland, I am so very happy for you!
Curious question: what is FDG? And, I'm guessing NEAD is no evid. of advanced?? disease. These are new to me but obviously good ones! Yea!!!!!!
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Happy Dance for Shetland!
So... I'm another one whose liver exploded with tumors this fall. What was it, the Season of Exploding Livers? Doxil did NOTHING for me. Onc started me on something called metronomic therapy - a low-dose chemo cocktail given once a week. According to my symptoms it seemed to work for all of 2 weeks (I keep telling myself "better than nothing"). Then bad news turned out to be helpful - I woke up one morning in excruciating pain - I couldn't even straighten up. Onc said straight to ER. CT showed slight progression so I've been switched to Gemzar. The helpful part of that was that I probably wouldn't have had scans for at least another 4-6 weeks so the switch was earller that it would have been. The other helpful thing is that as part of the ER workup a urine culture was done which discovered a UTI BEFORE I had symptoms. As for the cause of the pain - we still don't really know, though onc thinks I might have had a small bleed from one of the liver tumors. I know I'm not still bleeding if that was it (hemoglobin is going up, not down) and I'm on Targin for the pain. <Sigh> so I earned myself a one-week vacation in the hospital.
..... and you know you're in an Israeli hospital when all meals are served with metal forks and spoons but plastic knives.
Leah
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