How are people with liver mets doing?
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Steph, if you could only feel the the love and inspiration that we have for you. I hope that you really can- My vision of you is that you are one of God's chosen angels here on earth that fulfill this light of inspiration to others that need it so badly. Cancer is not a gift given to us- That is not the way we are suppose to see or feel it, but what you bring to me and to so many others that follow you is that you help with our sad hearts and confused minds. I am smart enough to recognize this gift that you share so kindly to us . Thank you for sharing your gift-
Blessings and Hugs,
Lovingly,
Carol
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Thanks for that reminder Stephanie. I think it is so easy to live on the cusp of anticipating what is coming down the pike. But really it does no good. So much better to try and live in the today. Easier said than done Carol. I too let myself slip into some pretty bad funks and yet after 14 months I have no specific "symptoms" to speak of. In that way I should be reveling in my good fortune yet I can't help dwelling on the "waiting for things to get worse". I have been trying to do many things to prepare for that time yet feel guilty for not just LIVING for today. Most days are pretty OK until I have another scan coming up or not so great news comes around. It is sooooooo stressful.......That is why we call it a roller coaster. Carol, I'm very sorry for the funk you are in as I know so well how difficult it is. Just try to remember that you still have lots of options and many women here have been living with LOTS of liver mets for years. It helps to look some up. Stephanie always has very wise and solid advice. Hugs to you!
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Hi Carol and Artist,
Thank you for receiving my hard-earned heart offering.
"Don't know mind" is so counter-intuitive!
It's not where we go when we seek the safest place to be - we want answers, solutions, resolutions, experts and plans.
Barring our own personal crystal ball, we fall back on statistics to guide us to "success".
The longer I live with advanced breast cancer and now on hospice, the more I trust in "don't know mind" coupled not with panic, but wonder and awe.
There is safety in not knowing and being "open in the present moment to the mystery of the divine" as the Threshold Choir song goes.
Thank you for allowing me to be present with you and your process!
warmest of healing regards for all, Stephanie
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Stephanie, I feel exactly as Carol has beautifully expressed - you have a gift, and you continue to inspire us and educate us through all your own difficult physical challenges. Thank you so much!
Artist, you feel and care deeply for all of us and you give tremendous support. I have experienced "things getting worse" as you worry about and I just want to try to ease your anxiety - even with some really bad weeks, we can still rebound and resume enjoying life! Yes - that roller coaster, but it goes around! Always wishing you and everyone all the best!!
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Carol - I had a handful of small liver mets and absolutely no symptoms. Faslodex can make short work of small tumors like the ones you have, but even if faslodex just keeps you stable i doubt you will have any symptoms.
Each setbacks brings back the shock, panic and trauma of the original diagnosis. Nothing to do but go through it. We do need to live in the moment and certain moments can be really rough. Stay present now matter how hard it is. You are in my thoughts.
>Z<
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Hummingbird, You are a sweetheart.....
Sending love to all you ladies tonight!0 -
hi all,
I may have met some of you in other rooms. Today I met with my MO and I am stopping chemo. Was on Gemzar Carbo for 8 weeks and it was grueling. The profound fatigue, and intense nausea was just too much. 10 days after my last dose and I finally feel normal.
I will start Faslodex shortly, in addition to Xgeva. My bone, lung and lymph node mets are stable. I have multiple new (additional) albeit small (1cm) poorly defined hypodense lesions in my liver which occurred while on the Gemzar Carbo cocktail.
I appreciate that you're all here.
Patti
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Satti, I hope you continue to feel better off chemo and that Faslodex does its job!0
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Maltese! I'm so sorry if my asking whether you had liver pain made you think it was to be expected. I was actually thinking, well if the lesions are small, she probably doesn't have pain, so that is something good. I'm glad others chimed in there.
Welcome, Sattipearl.
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Shet- Please no apologies!! I am glad you asked because I learned something from it. Thanks for posting and caring about me !
Hugs Carol
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Welcome Satti! So sorry the gem/carbo was hell on you.....I hope the Faslodex is much kinder to you.
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Artist what you feel is real. The question is HOW strong can a person be? This is the only place that I let my guard down sometimes, gotta be strong for SIL, for the siblings even my hubby. I feel that if I crumble they all will. In my case, of course being hopeful and optimistic is the only way. I do pray every day that something else will be in the Horizon. But the fear is real.
Carol, dear, thanks so much for reaching out. How are you doing? Yep the disappointment is tremendous. As Zar said, it's so true about bringing back the memories, everytime, and funny as it may sound, every year it's been difficult but the worst always happened about the same time of the year, very odd. Carol, you are not alone. And they do have many different treatments, when is your next set of scans?
Patti are they doing a/t for the small lesions? I just feel that maybe they could have done some ablation as soon as they found out about Dani's lesions, they were only two at first, but they didn't wanna do it.
Longterm I know how you always have us in mind. Thank you. I actually think back to you, when they wanna go on that trip that it's really serious, I say, no, I know people that are doing well. You give us so much inspiration and support, thank you.
I will try to make a long story short, the last PET/CT showed MORE lesions, bones, liver AND brain!! So Onco immediately made a change for Ixempra weekly. Herceptin every 3wks. Dani was still having rads to the spine, and now she's having for the Brain. And there was a visit to Neurosurgeon, if some big lesions are not gonna shape up at the end of another 6 wks, then it's surgery.
First Ixempra seems to be quite hard on her, the whole 9yards of symptoms of chemo, nausea, loss of appetite, abdominal pain,and extreme fatigue. I tried the Ixempra thread, believe it or not, there are only very few responses on it. Does anyone here know anything about it. If Dani could take that another few wks, they would add Xeloda to the mixture. But so far she needed IV fluids, so let's just really hope she is able to stand it for awhile. These nasty liver mets really gotta get down, and some bone mets too.
The whole time we were under the impression that we were able to do Rads for those large lesions on the skull, and Surgeon tells us now, NO. And even that area is considered Brain mets. We had no idea. Now this Surgeon is in his late 30's, yes wonderful background, but Brain surgery for someone like maybe 39? I am told by numerous persons from the group that he is fantastic. Yes….
To all wonderful ladies, feel well.
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(((momallthetime))
No words, just a warm hug for you, Stephanie
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((momallthetime))
I am praying for Dani. I am praying for you. The treatments sound really hard.
>Z<
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Hi Mom, I find it astounding some of the things a human body can endure. Dani has been through the wringer that's for sure. I pray for and think of her and you and her kids and am truly sorry for everything you are all forced to endure. I hope they get her on a steady regimen and things calm down for all of you.
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Hi MomAllTheTime,
I thought about what you wrote and want you to know that my situation is totally different than Dani's!
They really can't be compared and while I can serve as an inspiration, I am not a guide to her longevity or personal experiences.
Unlike Dani's aggressive and widespread disease, my cancer is very slow growing and responsive to a couple of therapies - notably Femara, Iscador & anthroposophic medicine and a spell of estrogen.
It gradually crept from my chest wall to internal lymph nodes to lung to pleura to liver to abdomen and is now in multiple places.
Now I am on hospice, but I waited 3 1/2 years from when I was first eligible to enroll.
I did seek out a palliative care specialist in early 2011 and he and his team helped me through many tough jams. And that specialist is now my hospice doctor! That's why I chose him!
Mom, it's never too early to seek palliative and hospice care, especially if there is more than one hospice option in your area.
Although Dani's disease and mine share the same name, the nature of our beasts are completely different.
Dani's is so aggressive and widespread, while mine is slow and slowed down by anthroposophic medicine.
While she can't think of her decline and death, you can consider that as one possible, albeit unwanted, outcome.
The shock of recognizing mortality and need for hospice care too late often causes much more suffering than necessary. That's why Dani's doctors are trying to have "the conversation", not to give up on her, but because they care for Dani and want her to have the best possible care, which isn't always the most aggressive treatment.
I've recently posted resources about choosing hospices and what it's like to die in the ICU at bco's D&D conversation.
You needn't be caught in an emergency, if you are willing to be even more brave and consider the possibility that hope might be for a good death, rather than suffering everlasting and extreme treatments.
While I'm sad to be another voice for facing difficulties, I believe that knowledge is power and that wisdom requires tapping into previously unrecognized depths.
I know you have the strength to do this, mom!
And the sense to separate my breast cancer experience from Dani's.
Listen to your heart and gut, but also consider all your options, while you still have them.
Great love & tenderness for you and all who suffer, Stephanie
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MomAllTheTime - Thinking of you. Thinking of Dani.
>Z<
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Many healing thoughts and prayers for Dani and Mom from here, too!
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Momall, adding my wishes for strength and wisdom, and that you and Dani will feel less doubt and more calm with whatever you and the doctors need to figure out.
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I love you longtermsurvivor! You are right, the future is unknown and today, right now is beautiful. Wishing continued strength and joy!
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Had my scans yesterday. My NED of 3 months is already over. Progression to my liver and axilla. My MO is away but I'm scheduled to meet her on Thursday. Xeloda was my longest run- 9+ months wish it would have been longer!!!
Can't wait to hear what my MO has next in her bag of tricks!!! So bummed!!!
Babs
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Babs- So sorry to hear about the progression. Let us know how this plays out. In New York you should have lots of options as far as clinical trials.
>Z<
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Longterm/Stephanie, your words are always so wise and comforting. Because I have mets in so many of my organs and bones (and it's only been 5 mos. since official Dx), I have sought out and gone to palliative/hospice/handling death seminars. Because of attending these, I feel no matter where one is at in their St IV battle, one must address "The Conversation" sooner rather than later. (Yeah, Lita...listen to your own advice...I haven't yet filed my POLST or my other end of life paperwork with my drs., but as soon as I get the results from my next CT, which will be the end of Oct, I'll get on the ball with it.)
I've learned so much from these threads. Most disconcertingly, that our cancers can mutate as they spread. They become resistant to Tx after Tx. Yes, there are lots of chemos and hormone regimens out there, but HOW LONG are we supposed to keep fighting and dealing with the pain, suffering, nausea, fatigue, etc? My MO was very frank w/me from the get go. She said I will be the one who has to decide how long to keep going w/multiple Tx and when to finally throw in the towel.
Submitting to the final embrace of death's bony arms is NOT to be taken as defeat, it's a natural part of our existence. The leaves on the trees are starting to change color. Falling from their branches, they will shrivel and die. My Bulldogs have died at ages 8 and almost 12. I've lost three of my two dozen rose bushes over the years. My parents and grandparents have already gone before me. (Sorry, maybe I should have posted all this on the D & D thread, but I feel it's appropriate here since some of us are REALLY going thru hell and may have to make some tough decisions very soon.) We have to try and see our eventual demise in a positive light, transitioning into another form of spiritual existence (sorry if you're an atheist or believe that when we die, that's it, nothing more). We can take comfort in knowing that at last we won't be suffering. Yes, our families, friends and colleagues will grieve and miss us, but they will survive and also be grateful that we aren't in pain anymore.
I was talking to my oldest brother, who has been battling congestive heart failure for almost 10 years (now he also has a pulmonary embolism). He's had a very tough battle, too, and is basically a shut in because of his breathing problems, etc. He is still very positive and keeps reminding me that we are very lucky. Fifty years ago, the both of us would already be dead because they didn't have the meds that they do now. Every day must be seen as a VICTORY over impending death, but he too realizes that he will eventually have to make a decision as his QOL continues to decline. For now, we bolster each other with long phone chats and skypes.
My prayers and heartfelt support go out to MomAllTheTime and Dani as well as all of you who are battling this wretched disease. Thank you all for being there to encourage and support each other.
Love and hugs, Lita
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Lita - I am so glad you have your brother... and a realistic perspective. That said, I wish a long and successful fight. Do you know why your doctor went straight to xeloda for ERPR+ cancer? It's not the standard of care for hormone positive cancer ...
>Z<
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Z, she wanted to shrink the larger tumors in the liver and other organs.
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Yes, according to NCCN guidelines, if the mets are in organ(s) and symptomatic, chemotherapy is standard of care, even with ER/PR+ Her2-. So like Lita, I had chemo first, then went to anti-estrogen therapy.
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Babs, ugh, that stinks. Do you think a newer biopsy to check Her2 might be recommended?
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Babs , i am so sorry for your progression , it stinks. Wait and see what your MO has to offer and like Shetlend said maybe another biopsy to check the HER2 status , it will do no harm . Keep us posted .
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Babs, I too am sorry to hear your news. May what's next be something kind to you and long, long lasting.
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My liver mets have progressed from a dozen lesions in January 2014 to ascites in January 2015 to an indwelling drain for ascites implanted in August 2015 to hospice in November 2015...and now, my liver extends to my iliac crest (bottom of my belly).
It's been a long slow decline for me. My cancer grows slowly and is further slowed by the mistletoe medicine I've engaged since stopping chemotherapy in mid-1996.
By most people's standards, I've been incredibly lucky, good luck and bad luck!
I've never fought this for even a day, though sometimes I feel like I'm wrestling in the match of my life. Sometimes the cancer is on top, twisting me into odd shapes. Other times, I just keep breathing and persevere.
My point is...knowing when to cede the match isn't losing or being a quitter. It's moving with grace while dancing/wrestling with awesome and awful life events.
Interestingly, I don't have any jaundice (yellowing of skin) or way out-of-whack liver functions.
Life and death are of great and warm interest to me.
I am grateful to be at peace and pray for the ability to be with all that is, whether I like it or not, whether it's peaceful or not.
Words of encouragement, I hope, for those at different stages in the liver mets mis-adventure.
warm loving kindness for all, Stephanie
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