How are people with liver mets doing?
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Arolsson- sending prayers and hope. Keep pushing for yourself! Y90 could be answer for the liver issues. Don’t give up
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I have been thinking about you , arolsson.
Nice to see an update.
Re just to buy time- In a grand scheme of things anything is just to buy time , even with any other illness let alone with us.
Well done in being proactive - if anything you will not wonder what ifs and brat yourself up for not being so ! Good chances either local treatment option or foundation 1 results will be beneficial.
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aroisson. Self advocating works. I hope your MO will contact the IR soon and you'll get an appointment. Y90 and other IR procedures are the fastest way to address liver tumors.
I think you know that I've had two sets of y90s Both successful. I go for another scan on June 29. This one will be six months out from my y90s in November and December. According to my IR it should show even more conclusively the effects of y90s.
I've had success with Genomic testing results, too. It just takes longer to work. Right now, I'm in a really good place because I'm responding to systemic, TX, faslodex and local TX. It's not the magic bullet but it's given me a lot more time. Since Faslodex is an easy TX with no SE, I'm having good quality of life.
Keep us posted. I'm really interested in what the IR will say. 💞
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yay Kattysmith 👏🏻👏🏻👏🏻
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Anyone hear from Nbnotes?
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No, I have not heard from rbnotes 💞
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Amy, I am sorry to hear about your recent results. Now may be the perfect time to do Y90, when you are having trouble getting chemos to work well. Y90 bought me some time and helped to get a handle on my liver mets. I may have another one in the future. I hope the IR you found is helpful and glad your MO is opening up to the idea. Do you have any symptoms from the hypercalcemia? Is your MO treating the hypercalcemia in any way and is it causing any noticeable symptoms? Great news your bones look good on the scan.
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Hi, I'm new to Liver Mets. Diagnosed May 1, 2020. On Fasledex and Ibrance. Just had a genome test June 1, 2020. Looks like I've got a Mutation PIK3CA so might change to Piquay. Had 1 round of Ibrance (low WBC). 1 week ago I started having liver pain. My tumors were only less than 1 cm on the MRI. Surprised to have pain so quick! Scan on July 8th to see if they've grown. Depressing for sure to find out your life is cut short. Any ideas on the pain?
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Welcome to the liver mets thread, Trivia. (Sorry you need to be here.) Regarding liver pain — it could be a good sign. I have had liver pain when a new treatment was working. It felt like a big ache. I imagine there was a big change in my liver and lots of cleanup happening rather suddenly.
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Welcome, Trivia!
Since you're new to this game, you might also take a look at this thread:
https://community.breastcancer.org/forum/8/topics/...
It's a thread about various interventional radiology treatments that some of us have had with respect to liver tumors. It's pretty dense, so make sure you have the energy to read through. It's probably not something that your medical oncologist will bring up -- you will have to research it yourself and raise it. A lot of MOs know nothing about it, and push only systemic therapy.
I, too, have the PIK3CA mutation. However, we started on Ibrance/faslodex, and almost a year later, I'm still there. You don't necessarily have to jump right on Piqray just because you have that mutation. For many, the SEs of Piqray are more intense than those of Ibrance, which is a fairly tolerable treatment for most. You should also look at the Ibrance thread and the Piqray thread for further info.
Breathe -- sorry, I am an info junkie so I read a ton. Not everyone wants to do that.
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Hi Trivia. When I was first diagnosed with MBC, I also went on ibrance but with letrozole. Within a couple cycles, there was definitely a positive effect on my liver tumors (8 of them across both lobes). First stable and then decreases in size. However, my ANC plummeted every time and it seemed I was off Ibrance more than I was on it. I switched to verzenio and no longer had problems with the ANC, however, I had the GI effects. Bad in the beginning and seemed to calm down, but then got bad again, However, dose reductions are permitted and should be used when needed. The anti-diarrheal meds were not helping me, and then things got bad, so I switched to the 100 mg 2x/day. What a difference!!! I am now doing fine and pretty darn good QoL. And best of all, I have had a "complete metabolic response" of my liver tumors with verzenio!! I have been on this MOA (ibrance or verzenio) therapy for 14 months. I am praying for many more!!!! So, if the ibrance is working or if you need to switch to verzenio, give them a try first since you started. Don't be too quick to jump therapies. There are some folks on the verzenio thread that are even at lower doses and still stable. Pikray has it's own side effects and not necessarily easy for everyone. If you are on something that works and you can tolerate it with decent QoL, stick with it!!! You could get a few years from ibrance or verzenio. Every bit of time we can get is a gift for us. Best of luck and let us know how you are doing.
Keep in mind there are also possible local therapies for liver tumors, so there is a possibility to combine systemic treatments with local treatments. Takes some finessing and you have to meet some criteria, but it's possible if and when needed.
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Trivia,
i have a recent DX of liver mets and was recently put on Piqray after progression on Verzenio (a cdk4/6 iinhibitor). I was not a candidate for radiology because of the amount of liver mets and where they are and my progressive disease not being under control at this time. So said my RO. But piqray has chopped my tumor markers in half and I am feeling so much better. Had significant fatigue a month ago now I am back to walking 1 to 2 miles 4 to 5 times a week and maintaining my 7 raised bed garden. So I hope you find the treatment that works for you. Good luck.
I had not seen hope and gratitude's post before I wrote mine. I did want to say I got a good 18 months from Verzenio, and after the first month the SEs were manageable. 18 months is a long time for me to last on a med so I was quite happy with it.
Mary
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3-16-2011. So glad you're responding to your TX .But, if you ever find yourself needing to address your liver mets, go to an Interventional Radiologist not an RO or MO, for a consultation. My liver mets were in both lobes and I had a Lot of them in each lobe. Plus active disease in lung and chest.
Actually, I'm six months out from my second set of y90s, My scan showed resolution of the tumors, large and small. My first y90s were in May of 2017. It was effective for 18 months then new ones started growing. Therefore, I had the second set. .
I am 3 1/2 years out from my DX of MBC. I'm on Faslodex and it is working on my lung mets.💞
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Good to know thanks Grannax
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Hi all. I'm so very sad to report that I found Nbnotes passed away May 23:
https://www.dignitymemorial.com/obituaries/tampa-fl/nancy-barlar-9196983
I thought it was very odd she'd been away from the boards for so long. She was always an active, but calm and resolute presence. She gave me great support and encouragement since I joined BCO, and I will greatly miss her here. May she rest in peace, freed from this damned disease.
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Thank you Bliss58..my mind can rest from wondering how she was doing. Needed resolution.
I don't know how you figured it out, but sometimes I wonder if I should have one or two BCO online friends with whom I can share my name and city, state of residence. I would want my BCO friends to find resolution, too, when I pass. I will ponder on that. Maybe my DH will do that.
Nbnotes was impressively gifted in music. I knew she played an instrument and taught music..but boy, she so under valued herself on these boards.
Peace to her soul.
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Hello liver met friends.
My June MRI showed that Xeloda (capecitabine) is working to shrink the liver mets. No new mets were seen.
I feel pretty good. It does mess with your mind..the progression, the new tx, the wait for scans..
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Oh, Bliss, this is not how I wanted to start my day. Nancy was such an uplifting presence here, and was also so helpful with many, including myself, in private messages. This one hits hard -- again.
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Sandi I am so happy for you! Wish i could have had the same turnout when I did Xeloda.
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bliss. Thank you for updating us about rbnotes. She was very active and will be missed.
That's what I did with gumdoctor but she's gone now. I
too need resolution when one of us goes missing. I've asked my daughter and my BFF to update here when my time comes. But it would be nicer if it's someone there who already knows all my friends.💞
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Bliss, I came over to this thread after seeing Sandi post in the memoriam thread about nbnotes passing. I’m heartbroken over her loss! I didn't have any idea she'd turned a corner, so the news hits me hard. She was absolutely such a beautiful and gentle soul and is someone whose posts I always sincerely loved reading. She added so much to our boards. Thank you for posting the link to her obituary. It was beautifully written. I simply had no idea she was so accomplished as a teacher and professor and musician. Her passing is such sad news. My thoughts and sympathies go out to her family, friends and loved ones. Nbnotes, I will miss you. May you rest in peace.
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Bliss58 posted this link in the Bone Mets thread to the lbbc.org online conference.
You need to registry, then select auditorium. I just listened to the session on "Coping with Collective Grief". The counselor, Kelly Grosklags, was very helpful in identifying our accumulative grief with MBC, for example, diagnosis, scans, tumor markers, treatment changes, clinical trial failure, multiple progression. Layer upon layer.
She provided coping techniques, like writing out what you have lost since diagnosis. How to get thru isolation from COVID19. And my favorite, light a candle and say the name of the loved one lost to MBC. We average 116 MBC deaths per day.
I am lighting a candle today and saying the names of BCO members we have lost this year. Then I will go outside, take a walk and surround myself with my good memories, what my family means to me and any joy that I can celebrate in this new MBC life.
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Nicolerod..maybe you can retry Xeloda later when your mets are stable?
I think about you and your struggles all the time. But you don't give up..reaching out for advice, reading. researching. You have many, many BCO friends who are supporting you. You will find that treatment to get you to stability of your mets. Others have..you will, too.
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So sorry to read this morning about losing Nbnotes. Another one of us gone. I have posted on here for going on 3 years. We have lost so many. This is so tough.
Sandi- Thank God for your good scan. Hugs
I too wonder about who will notify you guys when I am gone. I need to figure out a way to get BCO notified. We need closure.
Anyone know about Frisky?? I fear we have lost her too.
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Bliss58. Thank you for following up and sharing the obituary in nbNotes. Makes my heart so heavy. Somehow I want to hear that we are all living 15-20 years with good QOL with this damned disease. She put up the good fight and now she is with the Lord and is in his tender care. I am not on here all the time so haven’t made such personal connections, but it’s a blessing to know there are people in the blog who care enough to follow up on “friends” here. Thank you again. It was a beautiful obituary- her story, her life beyond And in spite ofthis disease.
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Nbnotes was such an accomplished woman and impressive traveler. I don't know how she managed to visit all 50 states and 48 countries. I knew she loved to travel, but wow. I'm so glad she had those opportunities to enjoy. It's very unsettling how quickly this damned disease can turn.
Sandi, thank you for posting her passing in the memoriam thread. On a happier note, I'm so glad for your wonderful scan news.
Hugs to all.
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We're so sad to hear about nbNotes passing. Our sincerest condolences to her family and friends.
The Mods
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sandi- congratulations on the great news from your scans. One day at a time, so celebrate!!!!
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I hesitate to post here because this thread is restricted to Stage IV only - and I hope you will forgive the intrusion, but I wanted to acknowledge the passing of nbnotes with those on this thread who cared for her, and let you know that everything she seemed to be here on this site, she also was in person. Nancy was a member of our Tampa BCO ladies group, and we shared many lunches, and she attended several holiday gatherings in my home. My last meet up with her was to attend her faculty concert late last year, where I was able to witness her superb musical talent, meet her sweet and proud parents - they were her travel companions. I came away with an enhanced appreciation for the energy with which she lived her life. Her faith and her family support provided her with the grace required to sustain her, and I am comforted by the enjoyment travel gave her in the years since her diagnosis. I share your sadness at the news of her passing, she was a bright light in the world, and she won't be forgotten.
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I am saddened to hear of nbnotes passing. May her memory be a comfort to all who loved her
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