How are people with liver mets doing?
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Syrmom - Thank you for your response. It sounds like you had treatment options even though cyberknife was not an option, and you are stable at the moment? I am glad to read that for you and all the others out there. My medical oncologist told me yesterday that the third radiologist to look at my scans are stating the tumors are cancerous so we are treating it as such until proven otherwise. The plan is to shrink them with femara or possibly chemotherapy, then look at targeted chemo in the liver, or targeted radiation therapy to the liver... I guess I am struggling with the news of being told I am now stage IV, and the fact that I have to wait for the next CT scan to know for sure if the femara is even working (very scary to me)... thank you all for this threaded discussion as it may be my new bestie....
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Hi ladies - I don't even remember if I've posted on this particular thread before, but I just wanted to briefly share my story. I was diagnosed with two liver mets back in April, which were found incidentally while I was being worked up for possible kidney stone. I had PET/CT and bone scan and there nothing else in my body (at this time) except for these two mets....size 2 cm and 1.5 cm. Because I am considered young (45) and healthy and these two lesions are small, and the fact that I have no other cancer in my body, I was given the option of resection and/or stereotactic body radiosurgery. Long story short, I ended up having one of the lesions resected, because it sat too close to the stomach and SBRT was not an option. This was done via a laparoscopic wedge resection on May 2nd. I recovered very quickly without any complication. The other lesion will be treated with SBRT in two weeks. I am apparently what they are referring to as "oligmetastatic" meaning, I have limited disease in one part of my body (the liver). Let me add that this is not considered standard of care by any means. In the end, they really don't know if there is an overall survival benefit to treating liver mets in breast cancer patients this way, but I am grateful that these were found early, and that I am being treated at a top academic center in my city willing to do this type of treatment.......All the best to all of you!
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for those in the US - I'm getting ready to look into resection/ablation
options and have a few questions:- did you experience any difficulty in finding a surgeon willing to do a resection?
- how about the rad oncs - any resistance to treating stage IV?
- did you consult with both rad onc & surgeon?
- has anyone had a MX at the same time as a targeted liver treatment? one MO suggested I pursue this route (ie find a center/docs capable/willing to do both at the same time).
I'm fortunate that my insurance allows me flexibility in selecting treatment centers/practitioners and that I have access to a few excellent facilities - so, I'm wondering what may be the best route to opinions from surgeons/rad-oncs who are open to treating stage IV patients. I checked yelp but couldn't find any reviews.
thank you for any suggestions, tips or thoughts.
I have learned so much from this thread and others like it - thank you
so much to all who contribute - it truly is an invaluable resource.0 -
spicypetunia,
I don't know about the US but i do know if the cancer is in the liver and even if it is not somewhere else, it means that the cancer cells are able to travel through the blood and colonize anywhere in the body. Therefore of the blood is not treated it would be of no use to treat it locally. Most of the time metastatic breast cancer patient are not candidate for a resection. However, i've seen few who went through ablation and other stuff but very soon after they got new tumors. I know it sounds very tempting when you hear that you can just cut it or burn it, but i would advise to get more than one opinion mainly from an oncologist because he is the best in predicting how the cancer would or may spread. My MO was against it from the beginning and preferred to do a systematic treatment to treat the whole body. Since the blood is cleansed through the liver the odds is that it could be traveling already somewhere else. I personally do not listen only to surgeons or rad doctor because each one will advise you in his own specialty. I hope this did not deter you and at the end i am sure you will do what you feel right. I wish you well.
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My mo shared the same opinion as Woody's...that once you have metastatic disease in one area, there's no assurance it's not in another area that just hasn't shown up yet...which is why she does systemic treatment...attacking cells that may be lurking throughout the body. However...we all know each case is different & maybe if in wild's case, knowing it may not be standard, you're prepared for whatever the outcome...meaning if it didn't prove successful, chemo is an option. In my experience, they would not even do nipple tattooing on me after my diep flap, since I'm on chemo.
Cathy...are you sure you're getting femara to shrink tumors? I'm sorry you're having to wait for results...it's one of the hardest parts of this journey. We're all here for you!
Did I miss SyrMom is hanging out w/my stable boy? I will gladly share!!!
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thank you so much for your responses.
to clarify, I am getting systemic treatment with chemo and targeted Her2 therapies (taxotere, herceptin, perjeta). surgery/targeted liver treatment would be considered after I can achieve stable off of chemo (ie able to maintain with just the Her2 therapies).
I was recently diagnosed stage IV out-of-the-gate and am post round 6 of taxotere, getting restaged again next week (past restagings have shown shrinkage). I have my fingers, toes, hair (wig,of course) and eyes crossed that the tumors have continued to shrink. the current plan is that I'm staying on chemo as long as it is achieving results and toxicity can be managed. I'm hoping I'll continue to be lucky and that I'll get to a great response soon so I can ditch the chemo (not that I'm not grateful to it for kicking ass!).
I know pursuing aggressive treatment is unorthodox, but after much research and discussion with two MOs, it's the goal I'm aiming for (after getting to stable, of course!!). I know things can change at any time, but for now, I'd like to try to learn from any out there how they went about pursuing local treatment in the stage IV setting.
thank you for your responses, input, thoughts, opinions, tips, suggestions and words of advice - I am very grateful for all of it! I'm usually more of a lurker and have benefited so much from reading others' questions and posts, so hope this may help others as well.
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Hi Spicy Petunia -
I have a lot of information regarding liver resection and radiotherapy. I've already had a liver resection and will be having SBRT very soon of my other liver lesion. If you are interested in my story, please PM me and I will share! No, it is not standard of care, but there are selective patient's on whom this is an option....I was one of them, according to two oncologists and two liver specialists. Again, shoot me a PM and hopefully I can answer your specific questions, and/or share my story with you. Take care!
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I haven't posted in a while...probably 3 months...but just wanted to share ct results continue to be stable!! No evidence of active disease
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Well done, kjones. Here's to being NEAD for a long time.
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Yay, Kjones13! Thank You, Lord!
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spicypetunia - we have had a similar conversation with our MO at the beginning of treatment. He hasn't brought it back yet, and when asked, has deflected questions. Perhaps because still in the middle of treatment with no new scans yet, and also I suppose because talking about it too much might create confusion that he is talking about a "cure" of some sorts and he'd rather avoid that.
That said, in our earliest conversations (my wife moved from her first onc precisely because we really felt uneasy about the whole "it's all systemic, no need to bother" talk from our initial onc) he did explain that in the right conditions, and with the right patient (i.e. mostly first-line, good initial response), he thought reducing the tumor burden whether on primary or with localised mets was beneficial (for the liver, either resection, but more likely, radiofrequency ablation).
He acknowledged this was controversial given that there is little clinical trial data to back any survival benefit (and the data is messed up since by definition you have healthier, better-respondents patients in the operable arm so results cannot be conclusive), but as my wife is relatively young and mets are not too massive, this was probably something he'd consider in due course. Again, we'll see where he stands after restaging, but we thought that was encouraging.
Hope this makes sense. Looks like you are a couple of months "ahead" of us, so let us know how it ends up for you, we'd be very interested to hear other people's experience with this.
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Awesome, KJones, very happy for you!!!
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Wonderful news Kjones , i hope it stays NED for a long long time
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Hi everyone. I have just been told that Vinorelbine has not been working and my Tumor markers have jumped dramatically. I had ct scan on Monday and will get results on 27th June along with details of next chemo. I think next treatment will be Erilubin. Has anyone any info they can share regarding SEs. I am scared and waiting 6weeks for new treatment is freaking me out.
Thanks. Helen
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RonnieKay - My MO states the femara is to hopefully shrink the tumors enough away from the diaphram so a liver surgeon can try to resect them. If not, I know he has mentioned chemo embolization, or some type of radio frequency ablation. He does tell me there are many treatment options, however, I just need to wait patiently for 8 weeks., which we all know is very hard.
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Thankful for so many options in fighting this beast! I would consider trying to cleanse my liver w/resection, etc. it were a possibility....but I'm happy that my treatment has been working!
Muther....is there a reason you have to wait so long for ct results? My onc gets them the same day. Are they taking this time for you to recover from low counts? My markers are really good but my enzymes jumped 15 points last week...the first time they've left the teens...ugh.
Wishing everyone a good week!
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It is fantastic and uplifting and hopeful to read about those of you with NEAD and NED. Keep those stories coming! So encouraging. Yea!!! for all of you!
My sister came for my last chemo and stayed another week--that was heavenly since I usually take care of house, horses, and dogs no matter what's going on. But, hmmm, it was hard to let her do things--I kept having to tell myself--it's ok, you have liver mets and just did your 6th treatment of Taxotere, you can take it easy this one week. We did manage to get to Acadia National Park's carriage trails with 2 horses for a nice hack the day before she left--it was beautiful in the park and, even though I could hardly get out of a walk, a fabulous day to spend with my sister.
I was slated to do 6 rounds of Taxotere but now, if my scans this coming Monday show continued shrinking, I'll do #7 on Tuesday. That is hard to contemplate and has sent me into a spin. I was so looking forward to being done with the big T. My onc told me I was her healthiest patient and while she recommends 6 rounds she's ok with continuing based on tumor response and my response to chemo. I asked for it after reading this discussion. I've had mostly a fairly easy time. Some weakness and cramping in my muscles; mostly mild, sometimes worse, gastro distress; cracking skin; and many very tired days. Now tired and bad tasting food and a little neuropathy and muscle cramping seems to be the new norm. Oh, plus my mind has turned to mush. I think I've just settled in to feeling like crap but not terrible... so I asked for more.
SpiceyPetunia, how long will your MO continue with Taxotere? My MO wasn't reluctant but wasn't totally for it either. She's going along. Looks like we're looking at doing 8--so 2 more rounds. What's your MO's thoughts about more?
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glad to report that restaging showed continued response to treatment so I'm continuing for 2 more rounds and will restage again after round 8 (Taxotere, Herceptin, Perjeta). liver mets have essentially resolved(!!) and the remaining breast tumor has continued to shrink - so, really phenomenal news. like Miche, my SEs are getting more pronounced but are still manageable, so both MOs that I see are on-board with continuing for 2 more rounds.
one MO has given me referrals for surgery consults as he thinks it's time to explore options and doesn't think going further than 8 rounds will provide enough benefit to balance the "costs" SE-wise. he also conjectures that at this point it could just be the Herceptin & Perjeta responsible for the shrinkage and therefore would like to omit Taxotere sooner than later and get to surgery.
the other MO is holding out on the surgical referrals until I get to stable and she continues to be in favor of getting as much mileage out of this treatment as possible. I understand both viewpoints, and am keeping an open mind, but am thrilled to get the surgery consults to get a better idea of what's possible and what timelines could look like. I'll get those surgical consults around the second week of July with next restaging the third week of July.
one concern both MOs have shared regards going to surgery too quickly after stopping Taxotere. both have stressed the importance of allowing enough time to confirm the herceptin and perjeta are holding things steady before moving forward. should there be progression, they caution they would not be able to start systemic treatment with chemo until I'd sufficiently recovered from surgery. so, of course, every hope that stable is around the corner and can be maintained without Tax, but I'm happy to have the good council to not be too hasty with surgery. I am so eager to keep moving forward, it's a fair warning.
thanks to all for sharing - I'm so grateful for all I've been able to learn here. hoping for more good news to share and lots more to hear about from others - it is so encouraging and fortifying.
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Spicy, that's fantastic that your liver mets have resolved!! Hooray!!! Here's to the other tumors getting knocked to smithereens in the next two rounds!
I assume it's because of chemo lowering immune response that they don't want to do surgery and then right away start a new chemo drug? I wonder what sufficiently recovered means.
I'm scheduled for round 7 on Tuesday (it sounds like boxing--in the ring for round 7 is Miche..v. ....) provided the scans show continued response in tumor size and all else looks good. This is something I never would have asked for without reading these threads--thank you all.
Keeping fingers crossed for myself and all of the rest of you...and hoping the magic bullet of treatment arrives soon.
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Incredibly wonderful news, Spicy!!! Liver mets resolved....the best news. Expecting the same thing for other tumors! I'm also pleased your mo wants to see stable (or NED!) before any surgery. I'm a bit of an "example" when it comes to this. Long story-sorry. First dx 6/2009, lump, clear nodes & margins, brachytherapy (internal rads), taxotere, cytoxen, herceptin. Mo called me chemo poster child-did well w/ses...babysat 1 yr old grandson through it. (Txt on Fri, back to sitting Mon). Two yrs later, 6/11, 4mm tumor in same area-mast & clean nodes & margins w/prophy mx & diep planned for 12/11. Expander moved-surgery 10/11 to replace it. 11/11, fell & broke elbow & ankle. Swelling in that arm caused carpal tunnel that had to be fixed for diep flap surgery, rescheduled for June. Healed great. Had clean scans and diep 6/12. Six months later, 12/21..liver full of tumors
. Shocked everyone. Mo feels that cells may have been present (always clear nodes but cells travel in capillaries too) and I had an incredibly strong immune system that kept me clear. Add surgeries...bump to the system, and cells grew. Hindsight 20/20...but who really knows. I just say...take your time, make sure it's the right time. On top of stage 4 diagnosis, my strong body didn't heal well after diep...thanks to invading C cells & chemo halting the healing process. I now have to be careful lifting & be cautious about any exercise using my stomach....which was always super strong. It's a harder issue to deal with than chemo, for me. I'll hope & pray for the best outcome for you...and all of us!!!!0 -
Well done spicypetunia, so good to hear positive results.
I had a 12 week CT scan last Friday and results showed some more shrinkage to main liver met and no progression which was good news. Tumour markers still trending down and Liver enzymes still good, as are all other blood numbers. Have had 22 weekly (3 weeks on/1 off) 170ml of Abraxane, no difficult side effects but starting to get some mild neuropathy now so will probably change to Xeloda or Aromasin/Afinitor. Also possibility of a clinical trial - BKM120 With Fulvestrant (Faslodex). Any opinions on choices?
Stay well and hopeful everyone.
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hello ladies,
Was any of you on aromasin alone after femara and did it work?
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Fitzy...If current treatment is working & tumors shrinking with blood & liver enzymes good, is mild neuropathy a reason to change? Wouldn't there be a possibility of neuropathy from other meds? I have mild neuropathy in my feet & r hand & my onc doesn't seem too concerned. Just wondering...it sounds like you're doing so well
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Thanks, Ronnie, I was also thinking that too. Perhaps she is being overly cautious re: neuropathy. She did say that this 8 month mark is when it can worsen.
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Fitzy...I'm hoping & praying that you'll be the one that defies neuropathy & keep giving those nasty cells the boot
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My MO stopped the Taxotere after #6 because of neuropathy. She gave me a little talk on quality of life and how I don't want to have to live with neuropathy. I'm now on Herceptin and Perjeta "indefinitely" and waiting for the SEs of Taxotere to be over. Mostly it's lower leg and feet cramps which I suspect is related to neuropathy. It doesn't hurt so much as theirs a weird feeling when I exert my legs and when foot or calf seizes up it's hard to do anything. Well, I take care of 3 horses so it's not that I do nothing, just not the more fun stuff so much. Now I'm wondering how long it will take for it to go away so I can get back to exercise. Today it happened while I was riding my dressage horse and I've been pissed off all spring for the delay this FC has done on my horse training so that really made me mad--plus I wasn't sure how I was going to get off! Luckily it went away before I needed to dismount. Now I'm wondering how long it takes to come down from Taxotere and about SEs from Herceptin/Perjeta and exercise.
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Miche....those are the same cramps many of us on the fitness thread experience. I find mine are almost none existent on my off week of chemo. The neuropathy in my feet is also better then. For the cramps, make sure you're super hydrated-I think we Think we're hydrated, but these drugs make our systems very thirsty. Maybe try an electrolyte drink...like the nunn tablets or even Gatorade. When my taxotere time ended, it didn't take long before I felt good again...it's a bugger! I was still on herceptin for a year & had no ses. I don't think perjeta is as user friendly, although I like the part of "prolonging life!" riding horses is pretty demanding....good for you staying active!!!
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Started my 2nd cycle of Temodar and Veliparib today. Appointment went great, thanks be to God!
:-) Penny
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Penny good luck to you on Temodar and Veliparib God be with you. Hugs
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Penny...hope treatment is bring kind to you.
I don't know if you've read that Capriness (Teri) passed away on June 18. Caryn posted her brother's words on another blog. May she be at peace with JillThut.
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