How are people with liver mets doing?
Comments
-
Theresa I second what BeautifulSunset has so brilliantly stated...
I faced the same dilemma when they recently uncovered a single lesion in my liver...because of its size— 2 cm—it lead me to believe that future scans would reveal more lesions that would need to be dealt with systematically.
I chose to undergo the clinical trial because I wasn’t ready for chemotherapy
If you have other treatment options, reserve yourself for the right clinical trial, one that will make a substantial difference in outcome
0 -
just to add, I failed on Xeloda a few years ago... yet Rational Therapeutics has my best chance as a combo of Navelbine and Xeloda, which I have just started after a y90 treatment for multiple diffused liver Mets. I will keep you posted as to how that goes for me. 🙂
Sunset
0 -
Thanks for your thoughts, Frisky! You're very kind to take the time to share your opinion with all that you've been going through lately...
Sunset, I hope Xeloda/Navelbine works great for you!! It's reassuring that Rational Therapeutics has analyzed your tumor to select a chemo combo that will work!! Good for you for making that happen! Did your cancer respond to Xeloda monotherapy the first time? Where and who performed your Y90?
Big thanks and very best wishes to you both!
Theresa
0 -
Theresa, I was on Xeloda for about a year as a mono therapy. It worked on my liver met at the time, but my bone Mets progressed. Rational's assay showed X as a single therapy would not work again for me, but only in combination. also showed me highly resistant to almost everything, at this point. So, fingers crossed.
Y90 was done at City Of Hope by Dr. John Park, Chief of IR. Have yet to have first scan since.
Sunset
0 -
Sunset - Praying and crossing everything that Xeloda/Navelbine will work for you!! II'm glad that Xeloda worked for one year and that it was still working in your liver. I've heard recommendations for Dr John Park at City of Hope. I hope that your Y90 will wipe out your liver mets. I've had durable responses to proton radiation therapy to lymph nodes and Cyberknife to a spine met, so local radiation treatments have helped me. Many women on the Y90 thread have had good control in their livers with Y90. I hope that you will be the next to have great results.
Thanks again and very best wishes! Theresa
0 -
I would like to understand how to better understand my foundation one results...I have them, and when I first got them my MO did say that it showed sensitivity to Ibrance which I know is good...but I want to know about the rest of it..anyone know certain things I should look for or that you all might be able to help me with?
Thanks,
Nicole
0 -
Theresa, I am going to provide a slightly different perspective on all of this. I have been NED since 2006. About a year ago, my tumor markers started rising. In May, I was scanned out the wazoo, and liver mets were discovered. The dominant liver met is about 2 cm. The others are smaller than a centimeter (there are about 5 others). I have talked with two different interventional radiologists. One of them, Dr. Lewandowski at Northwestern in Chicago, who has seriously studied and written about use of interventional radiology in breast cancer, suggested ablating the largest tumor, with the hope that systemic treatment takes out the others (I am about to embark on Ibrance/Fulvestrant after being on letrozole since 2006). The other, from Hopkins, suggested chemoembolization. His plan was to go in and use direct chemo on the largest one first, and also some of the others that he could get and then go back in in about a month and do some more work. He is willing to do this multiple times, but at a slow pace. Both doctors tell me that the key here is systemic treatment, that either of these would only be a partial treatment. So these are also other things to consider. I'm not sure if one of these treatments would be acceptable to your trial people, if you want to move forward with the trial, but you could check.
0 -
Bev, Thanks for sharing what you've learned about local liver treatments. I responded to your PM too. Theresa
0 -
I don’t want to confuse you but I have the opposite story. I had one line liver tumor grow while on Xeloda. After investigating my options, I chose a liver resection mostly because it allowed for me to get a biopsy of the new tumor to see if the type had changed. After much talk with my oncologist, I was able to convince her to leave me on Xeloda. After the resection, I was 2 years I’d NED while on Xeloda. The biopsy showed they type of tumor had not changed but it obviously had mutated in s way that wasn’t detectable at the time.
I guess my point is that even though Xeloda looked like it had failed me, it hadn’t. And I did great fir over 2 years after a liver resection. I don’t feel like my recovery was much harder than some who have undergone Y90 for example.
I know you asked for advise. My advise to you would be listen to your gut. There is never a perfect or right answer. Go with the one that makes the most sense to you now. Everyone is different. The what if’s will drive you crazy. Chose whatever feels best to you.
I eidh you all the best.
0 -
Theresa I've never been on a clinical trial but I do have ESR1 on my genomic testing. It's very interesting to me the trial you are on is supposed to be good for tumors resistant to hormone therapy. What is a SERD? I know it's phase one but does it have a name? Does SERD stand for the type of therapy it is?
I go to my MO on Wednesday, she will order a PET. Question is how soon will it happen and when will I get the results? That's all I'm interested in, results. I hope she does not want me to wait another month till I see her. I'm doing well on X. But, we all know that the scan is the only way to know if three cycles are working on my liver mets. For me, my liver mets are the most stubborn. My lung mets seem more receptive to TX.
Since this is my new MO, I don't know how she feels about giving results on the phone vs in person. I'll let you know what happens. I'm going to push for sooner rather than later.💞
0 -
How do I know if I have ESR1??
0 -
leftofootforward, Thanks so much for sharing your experience! It's amazing that you were able to stay on Xeloda for 2 years after your liver resection. Last night, I decided to go ahead with the liver resection today. Reading your story this morning was nice. There are no guarantees, but I went with my gut. Was your liver resection a laparoscopic procedure? How long did it take you to recover?
NicoleRod, An ESR1 (Estrogen Receptor 1) mutation develops when your cancer mutates in response to being on AIs (aromatase inhibitors). It can be detected in Foundation1 tumor analysis or Guardant360 blood tests.
Grannax - Faslodex, an injection, is a SERD (selective estrogen degrader). Oral SERDs are pills that hopefully will work better than Faslodex because they are more bioavailable. I believe there are 3 oral SERDs in clinical trials. I was on the phase1 trial of the G1 Therapeutics oral SERD called G1T48. It is not clear yet whether or not I will be excluded from the trial due to the liver resection, but it seems likely.
Best wishes to everyone and thanks for the input!
Theresa
0 -
Theresa- I will be thinking of you. May everything go as expected. I believe I was in the hospital for two nights and home 3 days after surgery. I got up and around as soon as it was tolerable and that helped a lot. It was a laparoscopic procedure. They resected about 20% of my left lobe. I was sore but it was manageable . Ice was my friend. I don’t regret my decision at all.
Best wishes
0 -
Lee & Hartrish
My wife was able to start the Gemzar Carboplatin combo yesterday. How quickly did you see your liver enzymes come down after beginning treatment? May I ask what your numbers started at? Hers are very high, enough so they said if she wasn't on treatment she'd be in the hospital.
Thank
0 -
leftfootforward - I'm so glad that your liver resection allowed you to remain on Xeloda for 2 more years! Did you develop new liver mets during that time? I stayed in the hospital on Monday night and barely qualified to leave on Tuesday afternoon. Thanks for the tips! They gave me hot packs at the hospital. I will try ice today and try to walk around more.
0 -
dwdearing: right before my first treatment my numbers were - t.bil: 0.6, alk phos:134, alt: 180, AST: 141. BUN and albumin levels have always been Normal. After my 8th cycle all labs normal. Although my alkaline phos is a little elevated every other time (varies between 148 to105). Thinking more from the chemo damaging the good cells.
My CA27.29 was 3580 at beginning of treatment, now varies between 55-73.
Tricia
0 -
leftfootforward:my next drug will be xeloda. How did you handle the hand foot syndrome?
0 -
Theresa- I did not develop any new liver Mets. I did eventually develop brain Mets which necessitated a change in treatment. So I was good forc2 years in my liver after the resection.
Hartrish- I was lucky with HF disease. I did have to go did. In fuse (3000 from 3500) and that seemed to help. I avoided the sun, hot water, and purchased good shoes. I got off my feet whenever possible. And I finally saw a podiatrist about my big toes and what was essentially ingrown toenails. The simple procedure to cut away my toenail was the best thing I did. I also had a foot file to get rid of the dead skin.
0 -
Hartrish, you will find lots of discussion of hfs on the thread All About Xeloda. Don't start from the beginning; some of those women were on crazy-high doses. I'd suggest starting with the last few pages. I also have ILC liver mets. I've been on Xeloda for two years with good results and good quality of life.
0 -
I have skin sensitivity mostly on my arms that feels like a sunburn from Gem/Carbo
Any help or advice?
Thanks! Lee
0 -
Theresa Wow you're already home? That's amazing. Where, how long is your incision? 💞
0 -
So let me see if I am understanding this correctly.... a Foundation One report can state that you are sensitive to Ibrance and you can do well on that but then after only a few months it can stop working and the cancer can/has mutated? So what I am asking is even though it may show that your cancer will respond well to Ibrance on the FO test it can stop responding well to the Ibrance after only a few months?
0 -
unfortunately, and it has been my experience, that anything that works only works for a while. If we are lucky, and early in our treatments, hopefully that while can be a fairly long one (many years). But the bitch about cancer is that it seems to eventually always find a way around the treatment.
Sorry for not better news.
Sunset
0 -
thanks for the reply... so basically I am correct in thinking that regardless of the FO test results showing positive response with IBrANCE it may only work for a couple of months?
0 -
Leftfootforward – I'm so glad that you did not develop new liver mets! I'm sorry about the brain mets. Did you have Cyberknife for your brain mets? When I did Cyberknife on my spine, the radiologist told me that they have made huge progress in treating brain mets with radiation. Is trastuzumab deruxtecan (DS-8201) an option for you? I know women who have done well on it, but I believe it's still only available through trials.
Nicolerod - Foundation1 can identify mutations in your cancer that should make it more susceptible to certain treatments. They don't predict how long the response will last. However, if you look at the Ibrance studies Ibrance is one of the drugs that often works for a long time, like years. Recent date from ASCO 2019 demonstrated an overall survival benefit for a similar drug to Ibrance, called ribociclib. Here's the article:
Grannax – I only stayed for one night in the hospital. It was great to be able to come home. I had a laparoscopic surgery. I have 3 little incisions and one larger one (4 inches) to pull out the liver slice. He said he took about half of an orange in size.
0 -
Nicole, ibrance by itself is useless. It only extends the effectiveness of the anti estrogen that you've taking. I was on half a dose of anti estrogen for two years—without ibrance—and the tumor in my breast disappeared after three months on letrozole and hasn't come back.
That's the reason why Pfizer is now developing a new ibrance capable of working by itself.
That's the clinical trial I'm currently on is trying to prove. Needless to say, the side effects I'm experiencing are too many to count and it's effectiveness doubtful to date.
So don't worry about how long ibrance will work for you...pray that the Letrozole doesn't let you down for the next five years,
0 -
Nicole and Frisky, I also had a great 18 month run on letrozole alone as a first line treatment. Many of lymph nodes resolved.
0 -
Theresa...your quick release from the hospital and successful outcome is very encouraging to me...
I will need to undergo a similar operation if this trial drug turns out to be ineffective....
May you continue to experience well being.
0 -
Frisky, To qualifying for a liver resection, the met has to be in an easily resectable location and theoretically you are not supposed to have mets outside your liver. I did not meet the second qualification, so fI eel very lucky to have found a surgeon who would do it. Of course, they always warn you that you might have a number of other small lesions in your liver that could explode and then the surgery would not have helped. I'm a strong believer in local treatments though. I won't regrest trying the liver resection even if it doesn't help me.
Theresa
0 -
Nicole, I got almost two years on Ibrance and Letrozole. Was a pretty good run.
Before that, my first line treatment (second if you count original TAC) was exemestame and faslodex and I got almost FOUR years on it! So ya never know.
Gotta thinkpositive and have hope.
Sunset
Btw, Nicole, LOVE LOVE LOVE your beautiful little town (although I'm partial to Haleiwa).
0
