How are people with liver mets doing?
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Mom, Thank you for posting the sad news about Babs. She will be missed. It is difficult to find the words to express my feelings. I know that there have been many times in the past when I used the word amazing to describe Babs, so I will start there. She truly was an amazing women for many reasons- her ability to continue to live her life on her terms, determined to experience every joyful moment and event while ignoring or adapting to the setbacks or limitations of mbc, her love for her family: her husband, her daughter, her son, and her grandson and granddaughters, her continued caring and supportive posts to others here, celebrating our good news and helping us through bad news. Over the past several years Babs has shared her adventures and life stories with us. We experienced her daughter’s wedding and pregnancy as well as the birth of Bab’s first grandson. We heard about her travels and holiday celebrations. She became an important part of our mbc family and eagerly awaited her next adventure. Through it all, the strongest message I heard throughout her posts was the unconditional love and concern for her precious family. I was happy to read that she was able to spend more time with her beautiful granddaughters recently. I know all her grandchildren were precious to her. I am lifting her family up in prayer and wishing them comfort and peace during this difficult time. Babs was a special person and will be missed.
Hugs and prayers from, Lynne
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hi all,
I've been away from BCO for a long time but came back because I've progressed with a small liver lesion so I thought I should come to this thread for guidance.
I just read about Babs, OMG... I am just gutted. (This was partly the reason for me leaving in the first place, because I couldn't handle the losses)
such a devastating loss, hugs to all who loved her.
dee
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Well, I posted a message and it disappeared. If it shows up later (which has happened before on these boards), then this is duplicative.
Mom, thanks for letting us know about Babs. My whole body sunk hearing the news. Babs was on various treatments at the same time as me and always just ahead of me. I learned a lot from her experiences and would tell my doctor that I heard about this or that from a woman I know who is treated at MSCKK. He used to work there so it did hold some weight. We were on Xeloda together and she always had an outside of the box solution for HFS. We had Y90 around the same time, while we were each on Doxil and didn't take any time off from chemo for the Y90 (which is not common). I remember she snuck food to eat after her Y90 or Y90 mapping procedure when one is not supposed to eat for many hours after. I did as well. In each case, if Babs was able to do that, I figured I could do it too. Her experience with Y90 while not taking a break from Doxil helped me sell the idea to my MO. Babs was so elegant, beautiful, tough and real. Just a good person at her core. She had a way of drawing in everyone - we all love her - although she seemed to make us all love her effortlessly, and perhaps unknowingly. She inspired me because she kept working full time and took very little time off due to treatments. I did the same and she made me feel like I wasn't off the deep end for wanting to do that.
Sklitz, I think your instincts are right that it is time to be a bit pushy. No one on your medical team will be as interested in your well being and survival as you. This is true even with good doctors who go above and beyond for us, like my doctor. I still push him and have been very involved in the last year about my treatment decisions. He thought I was crazy when I first started asking about Y90 but came around over time and now realizes what a good decision it was for me. Be weary about ever going off a treatment before you have a scan. My AST, ALT, alkaline phosphatase (ALK) jumped the first 4 months of Xeloda. At that time my liver took the biggest turnaround for the better to date. I started at 70% mets and all was inactive and shrinking by my first 3-month PET scan. Had he taken me off prior to the PET for fear of not working, I would not likely be alive today.
Raven, my liver has been doing well now. I have been on Doxil for 6 months and had Y90 to liver during that time as well. My liver enzymes and alkaline phosphatase have been slightly elevated since Doxil and Y90 but both treatments can cause that. Other than when I start new treatments or have the occasional flu, my liver enzymes haven't historically stayed above normal range. My two tumor marker tests are low and the one that is more indicative of my status - CA 27-29 is the lowest it has ever been. I should be getting a PET soon and pray these treatments have been working and that the elevated levels are due to the meds and not cancer.
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Hard to hear of another one of us that has passed from this life.
Babs- Thank you for your life and the blessings you gave to your loved ones. You will be missed on this board, but thank God no more pain or suffering.
We soldier on....
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I was never much of a poster till lately. I did read and read though. I am deeply saddened about babs. I was amazed how she could keep going and going. She will be missed and we have all learned a lot from her battle. A true gift.
Sarah
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Fly, Babs, fly. Our sweet, fierce, resourceful, astute, funny, adventuresome, loyal, gorgeous friend.
I wouldn't wish you back into your life of pain and disappointments, but I will miss you.
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Love your post lulubee. Yes, fly, Babs.
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Farewell Friend,
Kindness to all and love for your family came through in every post. We will miss your humor and your encouragement. Rest In Peace.
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I’m heartbroken and shocked by the news of Babs's passing. I don’t understand how she could have died so quickly right after stopping treatment. I was hoping she would experience many peaceful and painless months, free from doctors's appointments, procedures, and scans in company of loved ones.
She was an elegant and remarkable woman that first welcomed me with a private message when I started posting because we were both being treated at MSKCC, although not by the same MO.
May her family be comforted among the mourners of Zion and Jerusalem.
Mom thank you for sharing the news. I wrote to Zarovka but I have not heard back yet....I hope she’s okay, but I’m worried....
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I don't post much on BCO anymore, but I do read, and the news about Babs is devastating. I'm just so sad she didn't get more time with her cherished family. Thanks, momATT. The fact that you spent time with her and could share this with us, somehow makes it more real and poignant than hearing about it from a family member who doesn't know us, or a BCO contact who wasn't as close to Babs as you were. My deepest heartfelt condolences to her family and close friends. She was a very special lady, and I will miss her. Deanna
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I'm so sorry to hear the news of Babs passing. I'm especially thinking of her family's loss. She answered several private messages about the Y-90 that were very helpful to me. Thank you momallthetime for letting us know.
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tennille76: I am on carbo and Gemzar. You might try adding Prilosec or something like that. I have found it helps with my nausea. I take one tablet a day.
Tricia
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dear friends, thank you for all the good memories, Babs had the spunk and the vivacity to live life to the fullest.
Deanna it's so nice to hear from you, miss you tonz. Lulubee, Kaption Grannax, 50s girl, micmei,miaomix,lwrite,dee you've been so loyal, i'll print it out and pass it over to the family.
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When I read the news about Babs last night, I was devastated. I had hoped that she would have more time off treatments, and enjoying her children and grandchildren.
She was so full of life and love for her family! I would eagerly wait for her posts to see what she was up too next! She was always so kind, compassionate and caring for each of us on these boards. I used to wish that somehow I had had a mother like her when I was growing up. But in the end , I decided that what I could do was mirror how wonderful of a mother she was to her children and her grandchildren. Every time I would feel seriously down and out, I would read one of her post and and tell myself to pull up my big girl pants and get my butt in gear and live my life like she did!
I am so sad for her family, but I know that they were well and truly loved by her and I hope that at the end of the day, that will bring them great comfort.
Babs, I will hold you in my heart forever, but as others have said, fly beautiful lady, fly!
Claudia
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Bigbhome. I like Fly Beautiful Lady, Fly. Something I've thought about for when my time comes, Fly Away Home. It's been sung by many artists but my favorite is theme song in the movie by the same name. Have you seen it? It's based on a true story about a girl whose mother died in a car accident, she has to go live with her father in Canada. She finds some baby geese and raises them. When it's time to migrate she teaches them how to fly and leads them to their winter home by flying this homemade contraption her father made for her.
I guess that's a random thought, sort of. But when we grieve for others, sometimes important feelings come up. I did share this with my BFF. I hope it will be used a very long time from now.
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I have been off the boards for a while. Grannax-your pictures are amazing. It looks like you had a great time and you are beautiful!
I am so sorry to hear about Babs. It is so heart breaking to lose our friends over and over again. Prayers for her sweet family.
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Thanks, Baby Ruth. I was wondering about how you are doing. You're on Xeloda now? I must have missed that. Did you have progression?
Thanks I did have a good time. I especially loved how happy and proud my family was for me. I didn't expect that. I'm always applauding them, I guess they seized the moment to applaud me. 💓 I'm just so glad to be a part of an organization putting y90 out there so that anyone with liver mets can know of this option.
Any of you who had y90 can be "on stage" or be a part of "Say Yes to Hope" Google it and there's a tolll free number to call. I'm on their private FB page. They post lots of good info about research, etc. I don't know if they are looking for " models" but they love to hear from those of us who have had success with y90. They have members all over the U.S.
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Hello, I don't post much but thought I would check in. I have had mixed response on carbo/gemzar. Liver and adrenal met have disappeared as well as a soft tissue met in right thigh. Have had some improvement to bone mets as well but new uptake in an area on the left femur. Currently I'm having a weakness/tightness with the muscles around my right femur though. MRI shows swelling and onc thinks it might be due to radiation in this area....had radiation recall when I started gemzar after rads to femur. Anyone experience anything similar?
Thinking of you all. (())
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2nd dose of taxol today. Readjusting to the infusion chair.
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I'm so sad to hear about Babs. Always upbeat even in the most challenging circumstances, she was quick to offer encouragement to anyone here that she could help. Her family obviously meant the world to her and I send them my sympathies. She was one of a kind.
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Has anyone heard from NouzayO? I am worried about her and am hoping she is just busy and not checking the site.
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a fascinating NYT article about the liver numerous functions and capacity for quick regeneration! Who knew....
https://www.nytimes.com/2017/06/12/health/liver-bodily-function.html
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Wow, Meowmix!!! No wonder I'm such a fan of chopped liver!
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My friends, i spent some time with Barbara's family and I showed them your beautiful thoughts and feelings regarding Barbara. Her husband Alan asked i forward this response to you.
"Barbara was truly amazing and inspirational!!! Never realized how many lives she touched in the BCO community. I would like to say to all the the women she touched, be as strong as you possible can, keep fighting and never give up. That is what she would have wanted.
Love to all from her husband Alan, son Josh, his wife Alana, their daughters Molly and Emily, daughter Lauren, her husband Yaniv , and their son Anton"
I thought you all would appreciate this.
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Thank you, mom. That is a precious note to us, and so thoughtful of him to extend this kindness to all of us at such a painful time.
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Hi, where are you now with treatment?
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Thanks, Mom, for that kind note from Babs’ family. Glad you have been able to support them personally. Babswill be missed by all of us.
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Walked for all of us this Saturday. Love you all.
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I always appreciated Babs' insight and intelligence on this board. She will be missed indeed.
Thank you for all your kind, wise words of welcome. My sister's scan is tomorrow. Her trial includes chemo, targeted radiation, and immunology. It's been exhausting, but hope is what we will go with.
I tried to update my signature with her history - it mostly worked. If not, I'll put it here in her words.
Diagnosed July 2015, 31 weeks pregnant, felt lump
- Stage 2 B Luminal, ER + / PR +, HER equivocal, FISH equivocal, Mammoprint negative
- 1 round AC/CT
- 2 rounds TC / CT (2nd opinion)
Baby (healthy thank god)
- 3 rounds TC / CT
- Surgery early 12 / 2015
- ER + / PR +, HER 3+, FISH negative, should have been given HER at this point
- Radiation -- February until May 2016 -- had a few breaks
Remission, or so we think
July 2017, felt thickening in neck
- Surprise! ER + / PR + / HER +, liver (I think only one spot < 2 cm) / bone mets, small spots in lungs (Stage IV)
- Herceptin / Perjeta every three weeks
- Jan 2018 - Scan negative, bone stable, no sign of mets
Remission, or so we think
July 2018, routine scan, progression - tumor 1.4 X 1.5 cm (??) in liver (different spot), spots on lungs, bone seems stable, plot twist -- triple negative
Start immunotherapy Tx (QUILT Trial) 9 / 2018 - tumor grew 1.9 x 1.5 cm between July - Sept
3 week cycles, Scan 10/23 (after 3rd cycle)
Feel like shit
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Dear Members,
We are so sorry to hear about the loss of Babs. We are sending warm and healing wishes to her family and to all of you who have come to know and care about her. The Mods
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