How are people with liver mets doing?
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You are in my thoughts and prayers Nicole.
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Nicole
Thinking about you and sending positive thoughts and prayers for your scans on Monday. Hope they give you results that will allow you to proceed with the TILs.
Hugs
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Dear Nicole, we are with you no matter what.
Dear RK, wow, you are the first I got to know who flipped from HER2- to HER2+…
Hugs to all,
Saulius
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Nicole, I know I’m new here but just wanted to let you know I’m sending as many positive thoughts your way as possible. 15 years is a long time to wait to have your son and husband together and I really hope you’re to be able to experience that. Wishing this new treatment works well, you deserve to have time with them together.
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Nicole, I haven’t been on here in some time but I’ve followed some of you and I will pray and ask God for mercy for you to recover and make this move smoothly and have more family time.
you have been so helpful to many ladies. 🙏🙏. Bev0 -
Thank you all for your comments and messages. they really mean a lot to me.
I think its time for me to say good bye here. I had my MRI monday of liver and got results yesterday. As expected I am about to be another casualty of this disease. My liver is full of tumors now they are everywhere and this is why my upper stomach is hard as a rock and my kidneys and lungs all hurt when I take a deep breath the liver is very very enlarged and just has no where to go. The odd thing was my bilirubin actually went from 1.7 to 1.3 lol but that will most likely start to rise going forward as each day I am getting worse. I am taking the Talzenna but don't think its a match for this overwhelming disease. I am still just praying I make it to SC with my husband its not looking good right now. We move Aug 7th. I believe my liver is too far gone to continue with the NIH and also I believe they are counting my 1 brain met as "progression". Yesterday was very very very emotional for David and I and LOTS of tears not only bc of my liver but bc we had to say goodbye to my MO , who is like part of our family. We BOTH love her.
I did want to say a couple of things before I go.
1st thank you to all the friends that have come into the Stage 4 group to keep up with me and remained quiet since they knew they couldn't post here. It really warms my heart that you have followed me for 4 and half years.
2. Thank you to all my friends here….too many to name I love you all and thank you for always being here for me.
3. For those that flip to TNBC I am NOT going to tell you, that you will be the exception…someone else can…but I wont…this disease shows no partiality and when you flip to this…well I hate to say it but its a beast.
4. Please try to refrain from telling people the "stats" of survival are wrong or outdated..bc in my 4 and half years here they have been ON THE MONEY with EVERYONE I have see go. The EXCEPTION is those that get years on Ibrance and such that is RARE, NOT common. I wont even mention those with HER2+++….. I had ER+ HER2- for 3 years flipped to mTNBC and in under 2 years with it I will be dead….they say if you have mTNBC you get 1-2 years I find that completely accurate for 98% of the people.
Why sugar coat something that is real?? I mean if someone becomes the exception then YAY! AWESOME! but having false expectations…only makes things worse…to me, anyway. I like to keep it real and if I get a lot of years then great.
Well thats all I got. May God bless and keep you all, may He make His face to shine upon you, may He be gracious to you and give you His full SHALOM (peace).
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@nicolerod thanks for updating us. I wish you a peaceful time and hope you can make it to SC. And thanks for the reality check. I’m pretty much at the beginning of this “journey” and it’s easy to get lulled into the belief that I’ll be one of the unicorns. Shalom.
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Nicole, my wife and I will keep you and your family in our prayers.
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@nicolerod - Sending you so much love and prayers. Praying for your move. I hope you get to spend lots of good time with family. Thanks for all the info you have shared here over the years. I've definitely used some of it myself. You certainly have made a mark here. Many hugs.
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@nicolerod — will be praying for you and your family. As others have posted, I have followed your story for years and found lots of great info and hope. Thank you for that.
May you make it to SC in August. And may you have many days to enjoy your family.0 -
Dear Nicole
I wish you peace, love and pain free days.
Vaya con dios.
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Nicole,
I will keep you in my thoughts and hope for your peace and comfort. I want to say that I really admire your take on not sugar coating this disease. I think that in our desire to give hope to members, particularly those new to mbc, we do try to present a picture that is rosier than reality. I have never been the sugar coating type and despite all the positives I get from people (My favorite? “You’re probably cured!” from someone who only knows me via bco), I am under no illusions. I realize their intentions are good but it’s definitely a fine line to walk. I find your honesty refreshing.
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Nicole— My prayers to you and your family. I pray your transition from this life to Heaven is peaceful and easy.
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@nicolerod, we have been lucky to get a chance to know you over the years. You have been a beaming light of support and a wealth of wisdom and knowledge. Like so many others have said, we wish you as peaceful of a transition as possible and we hope you are able to make it to SC. ❤️
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@nicolerod I just stopped in to see how everyone is doing and read your words. I want you to know I pray to our Heavenly Father every day for all here, I talk to God every day and also breathe prayers. Because you have asked for Prayers that you will be able to make your move to SC with David and be with your son and daughter in law and grand baby, I will be sure to pray to God tonight and I will pray breath prayers all day tomorrow and each day that He gives you the power within you to make this move successfully, before you meet him in Heaven. Much Love and God Bless you & David tonight. Love to you both.💙🙏
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Best wishes Nicole, and I hope your last desire is met before you depart this world for the next. May you have pain free days with joy surrounded by your loving family.
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Nicole,
It is painful saying goodbye to you this way and yet I am moved that during the most difficult time in your life, you are giving us closure, which is not always something that we get to have with members. With someone as special as you, it helps. You’ve had such a passionate presence on the forum. There will be a big hole in our lives when you are gone. You will be incredibly missed. I agree with your words about maintaining the reality of the ravages of metastatic breast cancer. I’m not one to offer perky platitudes. I know very little about triple negative mbc, so I always thought it best to stay in my own lane, so to speak. I appreciate that you are leaving us with words of wisdom so we can better support women with stage iv breast cancer.
My eyes have been filled with tears as I write this post. I am not a religious person, but I send heartfelt, caring thoughts your way.
-Camille1 -
Being here only recently on Stage IV forums , Im new at saying goodbye to fellow beloved sisters of this disease. I’m so very saddened to have to do this.😢
@nicolerod you are in my prayers today.❣️💔🙏
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nicole: I am so sad for you and your loving family. I hope that you can feel the love coming from all of us here on BCO. I hate saying goodbye so I will say "Go in peace"
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Nicole, I hope you make it to SC and you are able to spend precious time with your son, grandson and husband. I’m still holding out hope for you with the NIH trial. Praying.
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Nicole, I highly value all you’ve shared and pray that your move to SC will be accomplished (easily!). Cross posting from the clinical trial forum: as an update to the KEYTRUDA/fulvestrant study I joined last month, we learned Friday that my labs are abnormal (enzymes+CA 15-3 up, bilirubin OK). So I started 50mg prednisone daily & need to have a liver MRI.
Then we drove to OH for my mom’s memorial service, arriving at midnight EDT. Having died on July 4, it was a lovely opportunity to remember her and see relatives but I keep thinking that I should be letting her know about my new health issues. With me “energized” on the steroid dose, we return to Madison for another blood draw at UW this afternoon.
My status may actually signify a bit of success with the immunotherapy. As many of you know, tumor flare can occur as mutant cells are attacked and begin to die off. However, inflammation is a big concern right now and needs to be brought under control. Viral infection has been ruled out. We’ll see what the week brings…
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Nicole, I've been checking on you everyday. Your journey has greatly encouraged me. Me too, following your footstep to the NIH trial next week. Thank you so so much for sharing all the tips and lessons you 've learnt along the way. You'll be always in my memories. Peace.
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Hi everyone, this is my first post!
I have bone Mets and liver Mets but I’m curious about your liver experiences. I’ve been on tamoxifen, Adirimax and now fulvestrant (and denosumlab). With verzenio.
Is it common to not feel sick? I have side effects (nausea/ vomiting and sore joints - less since changing medication ) but feel quite healthy. I was told early this year that I have 1-2 years but I expected to feel sick so I think that treatment is working.
I have seen some people are NED after extensive liver tumours- is that common? I’ve just had my first scan since diagnosis in February and I’m getting the results next week.
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margesimpson, sorry you have found yourself here. Everyone has different reactions to medication, just relish the fact you are feeling well. I hope the scan results show the treatment is working for you, long may that continue,
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Margesimpson- I am so glad you feel well- take advantage of these days!- travel, garden- whatever your heart's desire. I would not focus on longevity at this point if you can help it- the psychology of that can be the worst side effect.
good luck with scans!
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Thanks, I’m really curious to get the results. I’ve been off work this year, I was feeling really sick for a while. Now I’m feeling better I’ve been catching up with friends as much as possible and I’ve started walking with my kids after school which is nice.
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margesimpson,
I also have both bone and liver Mets. I'm at four years, heading into five years, and thankfully, I have had minimal symptoms such as pain due to the Mets themselves. I recently had some very low grade pain in upper right quadrant where the liver is located, but it lasted only a few days. All my symptoms so far have been due to side effects of treatments. Also cancer slowly causes muscle loss, so while you're feeling good I recommend you develop an exercise plan to maintain or increase muscle strength and cardio endurance. I've benefited from a referral to PT for this purpose. If you already have a fitness regimen, keep it up. And as others have said do whatever your heart desires. It's my understanding that Verzenio is especially effective for liver mets.
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@margesimpson , my liver is doing great on Verzenio. Shrinking and disappearing tumors. Like you, I mostly feel fine. Just SEs from the meds and sometimes get super tired, like now. I try to exercise regularly. My goal for the summer is to swim a mile
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