How are people with liver mets doing?
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Hey ladies, just wanted to check in, its been awhile. I had my PET scan monday, it showed my primary tumor and lymph nodes as stable, but what is weird is the spots in my liver. I have 3 and 2 of the spots got smaller and one got larger?? I see the onco today, so I should get some answers. I just completed one full year on Ibrance and letrazole. I am hoping my results will allow me to stay with this plan. I am going to go back through and catch up, just wanted to say hi first!!!
alissa
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mamatwins I know, I see this all the time in Dani's reports. But let's see what Onco says.
I am preparing myself to Onco's visit tomorrow. I am sorry, but I gotta put it out there. She was giving me such grim prognosis. Why? I know that Dani is very young, and her monster was very aggressive. But I saw in Onco's eyes she really did not see a very good way out. They are doing what they know, i know that. Also, I wanted her to be more aggressive. I am reading about embolization, I am gonna try to push tomorrow. But they seem so resigned to it not being a good prognosis. And I am trying to find more ladies that are on Navelbine/Herceptin. Should I start a new thread?
I think she does not want her to be on a heavy chemo, neither does Dani, BUT she wants to live and have good results! This is a major Hospital Center, I know Onco has hard experience, that's what scares me more. Not happy.
I see so many here doing well after 2 yrs so what gives? Till tomorrow, I could tell myself she will sing a different song tomorrow.
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Mom. I am not sure where you are but it does not sound like you are having a very positive experience with the center you go to. I wonder if you could talk with their administrative team to let them know how it going for you. The last thing you need is more stress trying to navigate everything without people who want to help you and make it as stress free as possible. When I first started out I had a few issues with my Onc and very reluctantly had a conversation with her over her contradicting some information I had researched. She was receptive and it helped our relationship immensely. I say reluctantly as I have had trouble in the past confronting people of perceived authority. Not so much any more since my life depends on it!
Shelby, So glad you got through the biopsy OK. Hope that gem/carb combo works wonders for you. Have a blast with the girls! I plan to start researching SSDA and all that soon, just to be armed when ready.
My insurance denied a PET this time so I had a CT scan for the first time. So results are hard to compare but all in all she said it looks pretty stable. Now I am waiting on blood results for TM's and enzymes. I am praying hard for no changes in Tx. I need to let go and relax and little for a month....
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Mama, that is interesting. I'm hoping you here that mixed bag is as good as stable and your treatment stays the same for a good long while.
Artist, pretty stable, well let's just celebrate that too! Best wishes for the TMs to confirm it.
Momallthetime, keep advocating. I wonder if you might see another doctor in the same center. Sometimes it can just be a personality thing. Some doctors manage to keep more of a positive slant. After all, no one, despite how knowledgeable can predict exactly how this thing is going to land. Why not keep it as full of hope for as long as possible? My onc is great at this, though I also appreciate that she will be honest about the not so lovely end of the spectrum if I dare ask.
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momatt, I have 3 specific lesions 9mm, 11mm and 14 mm. They are close to my gall bladder. But also have diffuse mets. MO explained that it's like a when a paint brush full of paint has had its bristles pulled and paint splatters the wall....
No, we did not discuss XRT as the gem/carb is working. Actually had liver mets in April but radiologist missed it. July scan showed a decreased in size which prompted me and my MO be like " liver what?" He then got a big investigation, pulled all of my scans past 2 years, had them all re-read at another facility. I'm very happy with the outcome now. Have to wait n see what happens with October scan.
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Artist I know, but unfortunately just happens I am helping out someone very close to me, just diagnosed, he is in a different Major Center, and you cannot even imagine what he has to go through. Let's just say that since diagnosed 2 wks ago he has not been able to speak to Onco directly. First thanks for your support. It's so not my personality, I do tend to deal with people very direct, but these ppl hold so much power, that at this time I think the best I could do is really try in a very nice way to work with her. The problem is, that I really feel these docs try to distance themselves from difficult situations.
What was the reason they denied your PET? Too soon? You know, sometimes doctors could and should fight that this is not a cosmetic issue! Aghh so sorry you have to deal with that on top of other things.
Kaayborg in a perfect world, yes. This is a BIG Center, BUT as I have learned, it feels like one is falling the rabbit hole. This Onco was recommended by the MAMA Onco there, but this one specializes in Mets. And just today, I called Mama Onco and asked if we could also have a visit with her, I told the secr I don't wanna step on anyones' toes, but..., and she is like, oh no, now you are a patient of the other doctor, but I should not worry bcs they convene all the time and discuss everyone. Yes, but MAMA ONCO, was old school, and she cared!! Yep, and so it goes. Maybe, maybe this one will warm up. Although I mentioned it to my GYNO, (who happens to be from the same hosp) and I asked, is there anything I could do or say to get them to really care, and him also being older than Dani's onco, said no! Either it's there right off or ….
Before I got to this Onco, I was looking into another onco in the Center, and that secr told me she will see if the doc will accept Dani, because it would be called "transfer of care" and she does not do this. Yep in big old New York. Politics, politics all the way. We are just an afterthought.
Shelby how lucky for you that your Onco went through all this trouble. Freaking Unbeliavable!! My daughter had been 2 yrs ago on carbo/gemzar, it was tough on her. They took her off it. And btw she had progression even on it. I truly think she sets the record for the weirdest wildest C monster. So far, no doctor could make head and tails from it. Thank you for giving me the info on the lesions. She started with 2 lesions. Then in 4 wks, went to numerous. I don't have sizes, the first two, were about 1.5cm each.Let's see what the enzymes and TM will show this time around.
BTW which TM do your doctors take for liver? The TM that she had was CEA, but they stopped, and then only Ca15.3
Anyone did the embolization?? TIA everyone,
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I get CEA, CA27.29 & CA15.3 done monthly now. Ironically it wasn't until March when my TM's actually represented. For the past 2 yrs ( done every 3 months with scans) including my stage IV dx where my TM's were 12 and lower. Completely worthless. That's why my MO says "you're a scanner..." In MArch they jumped to low to mid 40's. I understande those are little numbers in the big picture,but for me it was huge jump. It's also when Ibrance failed quite spectacularly. I had major bone progression and unknown liver mets. MO says more cancer to cause markers to register.
MO is also now doing some kind of blood tumor DNA something to see what may work. I've had the Foundation 1 tumor DNA sequencing done on my rib. 27 mutations but only 1 that had a recommendation for chemo- Ibrance. Ha!
I am very lucky to have this blood guy. I just love him and he listens and gets upset when I'm upset with radiology and when i want to do something we don't argue. One time I had to seriously move some chemo days around not following the day 1,day 8, day 15 treatment plan. I ws going on vaca, which he knew about but the pharmacist at my treatment center didn't. She called my MO to almost tattle and also complained it made things harder on them messing up the notes and cycle #'s blah, blah, blah. My MO very firmly said "Shelby's treatment is for her quality of life, not cure, and if dressing up like Harry Potter in Florida extends her life even 1 day then our job is to help her do that! Get over it! "
So Thank you I am very proud I picked a good one be on my team. That's what I said when I went to my first appt. I told him I was designing Shelby's Team and explained how I communicate, the type of patient/dr relationship that I felt I responded best too and hoped they could work with a patient who believes she is the boss of her healthcare and decisions made . I said 50% of my fight is having this kind of relationship with my doctor. I told this to all of my doctors.... rad onc, cardio-thoracic surgeon, plastics and general surgeon, primary care, my dentist and ophthalmologist, gyno and, physical therapist. Lucky for me they all agree. Our 5 yr cancer dx date is coming up and all of my doctors are still the same. I've only had a second opinion once at MO's urging and the office even set it up. 😊
Good luck with the new MO!
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Shelby yeah on our fist visit I told Onco how i had to be the driver with ex Onco and how taxing that was, and she said no, here you are gonna be a passenger with me. I will GENTLY remind her of it today. Waiting 4/5 days for Portal info, it's not normal for people that like to be in touch of what's going on.
CEA was in "normal" margin and meanwhile she has extensive mets in the bones, liver and skull. So how is that even possible? I think that may be the reason they did not repeat it the last time. Her numbers were always low also, on all tm's, and even when all the time is showed progression on scans, it wasn't crazy on Tm's. So That's one thing I am not get very upset about.
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Shelby, your onc rocks! What a great response to the pharmacist. Like Shelby and Momall, I told my onc how I preferred us to work together early on. I didn't really think about having that conversation (smart of you to start off that way), but it did happen. Of course she saw right away that I was very educated and involved, so at one point she said, "You're in charge" or something like that. I told her, "No, I don't want to be in charge, I don't want to be responsible for the decision-making. You are the one with the education and experience. I do need to understand everything, and why you recommend what you do." Also, she told me she respects my intuition because it has been right in the past, and she often asks what I think when she is considering things. So I am happy with the way we work together, and impressed with how well she tuned in to what I need from her. She is not at all bothered by my in-depth questions, and she answers them with confidence. Momall, I hope Dani's current onc will very quickly learn how to best help you and Dani.
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Shelby, I live close to Reno and was wondering what place you go to for treatment and if you could recommend a few of your Doc's in case we move there soon? I still like my Onc but you never know. Wow, Kind of scary to think that a certain facility would screw up such critical tests so badly!
Mom, I think you are right that most Onc's would rather not deal with the difficult situation. They would rather work with something they can fix. Also, I have hesitated in the past to confront people exactly for that reason. When they hold the power you don't want to piss them off! My insurance denied the PET because my Onc had never ordered a CT scan that apparently needs to show inconclusive, so deemed the more expensive option "medically unnecessary". What a joke. Um I'm sorry but the first 3 already showed active liver mets and therefore Tx failure. What else do they want? It's all about the money of course.
So kaayborg, of course the other shoe dropped today. My TM's and enzymes improved a little but now my neutrophils are too low! Which never happened on the higher dose. She was going to say "drop the Ibrance" but I suggested we try the two weeks on, two off regiman. And she said yes, we can try that for another little while. Wish I could just coast on something for awhile to give my nerves a rest. Hope you first days back are fun ad you get a good class!
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Artist, I get treatment at Renown. The first time I was sick I got trx at Saint Mary's. My onc is with Cancer Care Specialists- Dr Reddy. Everyone in the office is great. Like Shetland's onc, Dr Reddy doesn't mind questions or as I call it 'negotiating'. For example, after Xeloda failed he mentioned Taxotere but it was summer and I didn't want to lose my toenails when its flip flop season. So I suggested Abraxane. He laughed and said that was a great compromise! Abraxane lasted almost a year and so easy so I'm glad we could agree!
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Urghh, Artist. I want you to have some peace for your nerves too! I commend you for your 2 weeks on/off suggestion and glad it's a go for you. That schedule has certainly gotten me a lot more out of this treatment. Can't remember exactly how long I've done it this way but I'd guess 5 or 6 months. FYI in case it comes to it, my next step is the same drug but 1 week on, 1 week off (4 week cycle). At least for carbo this should be even easier for counts and hopefully still effective. So far still doing okay with 2 on, 2 off but I am just sliding by with those platelets.
Shelby, your team is awesome. They've got it right for sure. Everyone deserves this! As always, these boards empower us all to find the best possible care.
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Is there anything unique about liver metastasis that might lower platelet counts?
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Hi ladies, just stopped by to say hi and wish all of us good response on either treatment we are going through. I will have scans in two weeks.
I pray for all of us and all the people that have to battle this C monster.
Momallthetime I think and pray a lot for you and Dani and all your family. Try to stay positive that the right treatment for Dani is coming and we will all be celebrating.
Ziz
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Thanks for the recommendation Shelby! I never know when I might need it. I like my Onc pretty OK but sometimes I think she gets a bit impatient when I don't easily grasp what she is trying to explain to me.
kaayborg, I am glad I have another avenue to try also.
Timothy, I am perplexed as to why I am getting lower numbers when I feel way better and am on a lower dose of the ibrance? It's weird. She says it may just be an accumulation over time. I've also been stellar with my diet, although I did imbibe with 2 glasses of wine two days before my test. So wondering if that influenced that at all. Hope my two weeks off does the trick and the TM and enzyme numbers go down and the WBC goes up!
I have so much trouble working full time and trying to keep up on all of this. Feel like you have to be a rocket scientist....
Thanks Ziz and back at ya!
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artist - i am just tuning in and very glad to hear about the stable scans. i will spare everyone my rant about scan variability and error, but that one anomaly with the liver met could be explained any number of ways. i am glad your oncologist agrees. i don't think the lower dose means less treatment, you may not be metabolizing the drug very fast. the "normal" variability between individuals in blood plasma levels is high. at least as much as the difference between a 75mg dose and a 125mg dose and the changed schedule. you can google palbociclib pharmokinetics, or you can take my word for it. i can certainly see changing how you metabolize ibrance over time.
there are several major cancer centers that just don't do pet/ct scans. they are sensitive but error prone. my insurance will only pay for two pet scans per year. my plan is to alternate pet/ct with ct/bone until i feel i have a preference. so far it does seem like the pet scan found a really small bone met before the ct scan did. the last ct scan picked it up, but only after it was healing. that seems common. still, after all my reading and study, i won't be super upset if my insurance starts denying pet scans. ct/bone seems pretty solid and reliable over time.
momallthetime - you are always in my thoughts. so much is out of our control but everything that can be managed you are on top of. i wouldn't look for empathy from the oncologist, just good decisions. we have you covered on the empathy front.
>Z<
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Z, I will definitely take your word for it! You are a wealth of information and understand some very complex concepts. Thanks for that explanation, it makes total sense to me. Also, thanks for the reassurance on CT's. I was OK with changing for now just because I want to become familiar with both mechanisms too, not to mention the difference in cost! yipes...Excuse my French but this is all such a mental mind F*&^#!
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Shelby good for you that you are so on top of things. I am always trying also to know the answers. But I can't.
Shetland I agree with you. If they see that you could understand things they do speak to you a little different.
Artist no one could really understand how anxiety ridden is every day with this monster. I am sorry that you have to change your tx plan, but maybe this way you could stay longer on this tx.You seem to be doing all the right things.
Zar WOW -love your response to me. You make a lot of sense, and get that. I believe I am dealing with a sophisticated bunch at this Center, she specializes in mets. BUT I must tell you they don't really really understand what is like to every day having to deal with the nitty gritty of this monster. I am always trying to make them FEEL life from Dani's point of view. They are respectful, as when I tell them that all her scheduling has to be around the fact that she wants to be home when the kids are back from camp, school etc… But I keep bringing her back to life, that this is a thinking person, with the same desires, hopes as someone that does not have this thing!!
When I met NP I told her how I am the front for Dani and her hubby and it's too much to wait many days to know what's going on with the enzymes…and then I spoke to her about her family a bit, to Humanize her, and then I gave her a big hug (well she was nice at the visit), we have to bring these ppl down to earth, that they are not just dealing with numbers and patient number, but there is a real Human Being behind all that. NP did email me the next day Friday with the BT results, no so good, TM's going up and they decided that they will do scanning at the end of the 2nd cycle and not wait. And best of all Dani did tell me that Onco mellowed out a bit.
Zar I haven't gone to the bone mets thread yet, what's going on with you? What happened to the scans in the other place? Any treatment plan different than what you are on now?
Oh ZIZ really appreciate it. Keeping good vibes for your scans.
I asked them about radioembolization, someone mentioned to me as an idea to lower the tumor burden, but they told me that if it's really all over the liver, and not contained it would not work. If this tx does not work now, I really feel we have to do something. I am not ready to throw in the towel. Every doc I spk to, sooke to my private doctor, spoke to NP from prior Onco, and these new docs, all seem so pessimistic and then I read this thread, and people are doing well, so I don't really understand.
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Mom - Thanks for asking about me. I am doing well. The scan at the end of July showed that all mets in my liver (there had been 5-7) were gone. The CT did show a bone lesion in my sternum for the first time, but it is sclerotic. Scleroic means that it is as likely as not a healing lesion. Bone mets sometimes don't show up on scans until after the cancer is gone and bone is healing. The primary tumor in my breast is 2.5cm x .6cm, but it started out 6 months ago at 4.5 cm by 3cm. The largest tumor in the lymph nodes of my armpit started out at 1.8cm, it's now .6cm.
The upshot is that I no longer have metastatic tumors that you can pick up with a scan. The tumors in the original organ (breast and armpit) are still shrinking/responding to treatment. I am feeling cautiously hopeful that I will stabilize on ibrance/letrozol for a while. Each good scan opens up the possibility better options going forward. I am not having a really easy time on Ibrance/letrozol, but otherwise I am in a good place.
One thing to keep in mind is that 90% of women diagnosed de novo with stage IV cancer respond to their first line treatment. Cancer becomes increasingly difficult to treat as it mutates to evade one line of treatment then another. Those of us just starting out are more likely to see good responses. At this point, Dani seems to be fighting multiple types of cancer. It's a different position to be in.
Are the doctors considering clinical trials for Dani? I keep wondering when immunotherapy is going to be considered as a treatment option for Dani.
Numerous people on this forum have you and Dani in their prayers all the time. Dealing with the doctors and hospitals and treatments and decisions daily/weekly is unbelievable stress. You have given Dani and her family precious space and time that cancer would otherwise consume. It is an incredible gift.
Artist - Yes it is all such a mental mind f@#k. I hope the good scan outcome, your family, your job and the kids you server help you get far far from Cancerland this fall. It is so brave and healthy of you to keep working.
>Z<
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Zar you make a lot of sense, as usual. To be honest, it's still freaking unbeliavable. She did more Genetic testing, all negative. She is so busy preparing e/t for the kids for the school year. There is no way I could broach a more serious dialogue. I really can't.
It's just terrific that you finally holding in a place that you might see a big difference. Patience patience. How are the kids coming along? Also getting ready for the new school year. And what did you take from the visit in Seattle? Did they say anything about different therapy?
Rad Onco spoke to me on Friday, and said that they would only radiate the large skull lesion if it really becomes an issue, becs she said she has too many, and she told me that these lesions don't have an effect if she gets IT in the brain or not, this is not what bursts into the brain, I hope I understand it correctly.
But for the liver, I am still looking for some kind of radiation,if there will still be many lesions at the next scan. The nixed radioembolization, I wonder it there is a/t else. And/or I will push for yucky chemos?
I do know how lucky we are for having all these wonderful people here, with their own problems cheering for us, sometimes I just feel real bad posting, I just really wanna stop this wreck at least for awhile, so she could just have some down time. Tonz and tonz of kisses! You are so special
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It is terrific to see a response to the treatment, but not uncommon at this stage for my type of cancer. I have a long road ahead.
I went to Seattle to SCCA because I want to find a major research center to go to for the hard questions if things go well (surgery? Can I stop taking ibrance?) or I progress (second line treatment?, clinical trials?). Most importantly, I wanted to find a center I am comfortable with before I am in crisis.
I met with one of the major researchers in the field. I wrote up the answers she gave earlier on this thread. Obviously competent, but as a clinician I felt she was uninspired. I will be looking elsewhere. The most forward thinking ideas for BC seem to come out of MSKCC, Dana Farber and California. San Francisco looks like my next stop.
I know I encouraged you to work with your nearby cancer center on a day to day basis, and I still do. But I think that Dani will need to get to Dana Farber for a second opinion at some point when it works for you guys. I think Dani needs to be in a trial and figuring out which one is best will very tricky. Down time away from cancer and the family time is very important, as you instinctively know, so you have to balance that with the demands of a trip to Boston. Lean on the folks on this thread who offered help hook you up with the right people so you make the most of the trip.
Regarding radiation, like all of us, Dani has a systemic disease that needs to be treated systemically. Most likely with some kind of drug. The radiation is a bandaid to solve this pain or that stress on an organ. If there is no pain or immediate stress, it seems to me that staying out of hospital and fussing over the kids is much more therapeutic.
I know this is hard on you and sometimes I worry more about you than Dani, but I do think that little bit of denial that you let her have is helping her fight this. A lot. By that same logic, I would avoid any treatments that you can.
You are in my thoughts.
>Z<
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I have been reading these boards for months, trying to keep the hope up, desperate to help my sister who had become so pessimistic about her prognosis that she just seemed defeated. I felt like she didn't want to fight, and so I have been reading everything I can on Stage 4 breast cancer. Momallthetime, I feel for you, and would like to give you some hope for your daughter, Dani. My sister Deedee was diagnosed with invasive BC-ILC--about 18 mos ago. She had been getting regular mammograms so we were shocked when she was told how large the tumor was. She went in before her next mammo was due when one nipple became inverted. Weeks later, the surgeon said when doing the masectomy, that he had never removed such a large tumor--he said there were too many parts to count. Eight out of 15 lymph nodes were cancerous. She went through courses of chemo and radiation but didn't do the last 2 chemo treatments as she was so sick, the one where you have to wear gloves because of neuropathy. We tried to talk her into keeping going but she said she couldn't. Her onc put her on hormonal treatment as she was hormone receptive, and we hoped for the best. Five months later she was nauseous again and very tired--she returned to the onc-- she was diagnosed with liver mets--they were diffused through her liver--and she only had 10 percent liver function, just enough to stay alive. Her liver was oversized, and pressing on her stomach so she could just eat tiny amounts and then felt full. The cancer was very aggressive, she was told. Her onc gave her three months to live without treatment, 12 -15 months with treatment. Of course we were shattered. She was put on chemo again, the kind that is best for liver mets, (taxo?) but again it made her very sick, and so she was on 50 percent dosage, and her onc hoped to increase it--after several weeks, her liver enzymes had improved, but a CT scan revealed that the nodes had progressed, marginally, but the cancer hadn't shrunk. They don't do PET scans up here in Canada. The chemo wasn't working, the onc said, or she was too sick to handle it. My sister has been very sad--she started planning her funeral and didn't have enough energy to do anything except sit in a chair. My GP told me, "Tell her not to give up, keep fighting," but it seemed useless. I live thousands of miles away from her. My other family members seemed to accept Deedee's fate and I was told in a recent visit to not be so optimistic in trying to keep her upbeat. Her husband has been making her high protein meals and detoxing smoothies but it became obvious that she was weakening. Hospice was called in. One sister told me she would be bedridden soon--a photo revealed to me how much she was deteriorating. A new onc decided to put Deedee on Xoleda, a very low dose as she wasn't handling chemo well at all. She was told not to expect much as she didn't have much of the needed enzyme in her body. Well, she has been on it about 2 months, and surprisingly, few side effects yet. No hand and foot. Deedee lives in a small town in Ontario, and they bring in oncs from the city, so it is frustrating that she gets a new onc every six months. Well, long story short. The Xoleda is working--the onc said her liver is now functioning between 60 and 70 percent, and she has been now given between three and four years to live. We are over the moon. Of course we know that X will stop working at some time, but I just heard that my sister who wasn't getting out of a chair, went swimming four times last week. She said that she no longer needs hospice help--she calls her life The New Normal. Her new onc has taken her on as a patient and Deedee won't have to to travel far to see her, so she can stick with this one. She seems much more optimistic than the previous onc whom I have nicknamed Doctor Doom. I hope this gives you hope for Dani.
ElleJ
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Elle, That is such a wonderful story that we all need. Has she read any books on the subject yet, such as Radical Remission? I know that many of the stories in these books are a small percentage of success compared to how many people are lost each ear. But it does help to hear that all things are possible. it is very hard to keep going when you feel so very sick, things aren't working and you get a Dr. Doom on top of it! But this just goes to show that things can turn around and unexpected meds can help improve situations.
Z, that is fantastic to hear that all of the liver mets are gone! Wow, a real dream. I hope you can stay on this first line for a very long time. I too have a lot of trouble with Ibrance. If it's not elevated enzymes, now my WBC was too low so had to change the schedule on the lowest dose. It's interesting to me to hear the statistic that 90% will respond to first line treatment. I seem to fall into all of the 10% categories that are negative. De Novo out of the box, ILC, and have already been on 3 different treatments in one year. Lady luck here! Actually the Letrozole/ibrance worked well except for the elevated liver enzymes so she took me off of both. Faslodex failed. Now Arimidex and Ibrance are so so....I asked if I could return to the Femara and she said no, since it works the same as Faslodex so it would fail. Not sure if I agree and plan to research.
Mom and Z, I also am trying out major centers for down the road and think UCSF may be my cloice. I already have been to UCD. It was OK but still got the feeling of a cattle being run through. I just want to feel like an Onc makes a personal connection somehow. I know it's hard when they treat hundreds of people. But it would go such a long way in gaining my confidence. I am with you Mom that they need to look at patients and their families as human being with lives and loves and dreams. I also agree with Z that you want to avoid the harder Tx as long as you can. Also as Z says, take some time to care for yourself. you don't want to be the next patient....
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hey ladies! I was Ned in June but my liver is starting to smart again. Bloodwork is all good except for slightly low platlets. Liver pain is nothing like it was when I was diagnosed. Onc said the tumors wouldn't come back that fast. Anyone else experience this
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JillianClaire - I had all kinds of weird pains in my abdomen/liver area going into my last ct scan and the CT showed that all the liver mets were gone. I have so many things to worry about but my abdomen doesn't seem to think I have enough. The expression I like is "Don't borrow worry". The pain could be tumors but it really could be anything.
Artist - It is so interesting to me that your oncologist said you cant go back to letrozol be cause it is the same mode of action as faslodex. All oncs are telling me that faslodex would be my next line of treatment. I am scratching my head because it seems very similar to letrozol. They assure me that "faslodex works by a totally different mechanism." It is possible that the order matters but your oncs response doesn't make obvious sense. You might get a second opinion from someone who can at least explain it better. You deserve to understand the decision. This would be a good test for UCSF. I would love to see you go there. They seem to be one of a handful of places not dishing out the standard slop to everyone.
DeeDee - some people respond only when their cancer has evolved into something highly differentiated from normal cells and very aggressive. Cancer can be come more responsive to chemo and some new therapies coming on line as it mutates. It is terribly hard to fight when you feel awful. In a very limited way, I have been there. I hope the folks around her are researching clinical trials and alternative treatments. The pipeline is full of drugs that could potentially knock the wind out of her cancer. If you post the details of her cancer on a new thread, you will get a flood of responses and ideas from the wonky and compassionate crowd here. You will probably need to ask her or her husband as I am sure you haven't immersed yourself in the terms and classifications. I am glad she is swimming. Exercise is well documented to improve your odds. Swimming is among the best things you can do.
>Z<
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thank you zarovka
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Hi Artist, Z. and friends,
My understanding is Femara/Letrazole and Arimidex/Anastrozole are very similar in being non-steroidal aromatase inhibitors (AI).
Aromasin/Exemestane is a steroidal AI.
And that Faslodex/Fulvestrant has a completely different mechanism of action.
I'm no medical professional or scientist, but know that the first two are prescribed for those with earlier stage breast cancers, while the second two are used in mets (mets only, I think, though indications do change!).
Good information here http://www.breastcancer.org/treatment/hormonal
I am on my third go-round with Letrazole and it helps with my lung and pleural mets, liver not so much. I've no unwanted effects this time and the cost is right ($10 monthly), so I'm sticking with it for now.
Healing light and love for all my liver mets sisters, Stephanie
PS#1 My liver is swollen to my pelvis now & that and the ascites have changed the shape of my belly, but I've no signs or symptoms of jaundice. Haven't had blood labs since last October (on hospice), so no idea if my liver function is off.
PS#2 I've always read and heard that liver mets aren't treated topically (radiation, surgery, etc.) for a cure unless they are very few (oligometastatic). They're sometimes topically treated for symptom relief, but that seems pretty rare. Check out http://www.beatlivertumors.org/Liver_Directed_Ther... and http://www.beatlivertumors.org/Surgery.html
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Stephanie - Healing light and love to you. Thank you for your posts. It often takes me so long to read and think through them that I forget to respond with a thank you. Glad and amazed there is no apparent jaundice.
>Z<
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Thank you artistatheart and Z for your reponses. I will recommend that book, Radical Remission, to her for sure or buy it for her. I don't think she has read it--she has read many of the diet books and a few dealing with cancer books when she was in Stage 3B. Deedee just wrote and said she is going on a girls' day out with her daughter and granddaughter (5 yr old) which may or may not involve cupcakes! I am so pleased, as she could only sit in a chair the last time I saw her. She is now enjoying food again as her taste has been so off on chemo but it doesn't seem too bad on X -she still can't eat garlic, has an enhanced sense of hearing and smell. She also says she has trouble concentrating but that too is improving too on X. Her hair is growing in, all curly--not that that matters much but it takes the pity off for a bit. She had to quit her job--as well as her volunteering job at the food bank, so hopefully she can do that again and get some qol. At my dad's funeral, none of the cousins talked to her as they knew she had Stage 4 cancer. She said she felt like a ghost--everyone avoiding her. I have always seen her as Deedee, never as a cancer patient. So I am just my silly self with her. I am her eyes on the Internet as her first onc told her to stay off the Internet as it would only terrify her. So she stays away and lets me tell her stuff. I know pretty much all the terms now as I read all 196 pages of the Xeloda thread. Now I am starting this thread from the beginning. I get the treatment names mixed up--they are so hard to spell--but I now know what Dancing with the Stable Boy means, Dancing with Ned and Madame X. One last thing--her onc says she is still too sick for trials. I can't wait for the immunology treatments to become available for everybody, and blow c away! Every day I google: new treatments, mets breast cancer. So everyone has to hang in there. It's coming down the pike.
ElleJ
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About the personal connection: When I was first diagnosed with mets, I gave my onc a family photo and asked her to share it with the tumor board. Once a year I give a thank you note and some photos to people on my care team to show them how the work they do enabled me to have that year with the people and experiences that are important to me. I think if I were an oncologist, that sort of thing would help keep me going.
Elle, thank you for sharing that story! You are such a great sister.
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