How are people with liver mets doing?
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bad- that's good news. Hope you can breath now
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bad - good news of relief for you. Breathe easy and enjoy every moment.
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bad at user names ... awesome scan.
>Z<
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Just coming back, i am quite embarrassed to say that i believe i had some emotional exhaustion. I had an ulcer, and my mind is mush. But going forward.
It has been a bit of a trying time, Dani had ocular issues, more Rads.
Her 15.3 and CEA have been coming down. AST/ALT have been coming down. BUT today's Pet/CT shows no change in the tumor burden of the liver, on both sides!! Extensive multifocal osseous metabolic disease.
Dealing with this now, yes we should be happy, does it mean it's stable? Waiting for doc to call back. It's just that with the numbers coming down I thought for sure we would get a better looking picture. How is it possible, can someone explain. Alkaline phosphate everything, is lower so why not less lesions in the liver. Quite disappointed, I must say.
I will have to go back pages now to be updated. Miss you guys so much. My concentration levels are nonexistant.
Hope you guys are coming along.
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Met with my wife's MO at Stanford today. She is not going for IV chemo right now, but will be prescribing Xeloda instead. I asked her how come the bone mets are stable while we see tumors in liver and she really did not have any answer. Neither does she think that the tumor type has changed (apparently based on her experience). So we were not totally convinced by those answers.
We ordered her liver biopsy anyways and also going for Foundation 1 and functional testing with Rational T.
Going to meet Dr Munster from UCSF next Thursday and see what she says.
Momallthetime - in my opinion as long as things are not worse than before, it's all good. Unfortulnaty that's how "good" is defined with this awful disease. My prayers are with you
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mom, have you looked into the avera institute for precision medicine
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I have a different kind of request to the ladies on this forum. If anyone lives in SF Bay Area, can you please recommend an oncologist you trust, caring and thinks out of the box ? I would like to consult with him / her.
Not looking for someone in Stanford (I am losing confidence with the onc there and not sure if I can ask for a different onc at the same place) or UCSF (we already go there for second opinion).
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Momallthetime- the numbers coming down is a good sign. I am hopeful it means the tumor activity is decreasing. Letmywifelive is correct nothing new is a good thing. Maybe Danibis at the beginning of a turning point and you have to wait just a bit longer to see that. That is my hope for you. I also hope that you find a little time to rest for yourself. Y
Letmywifelive- xeloda has been a wonderful drug for me. I've been on it for over 4 years now. It does have its SE. And those Se are sometimes more intense in the beginning. There is a wonderful thread all about xeloda with lots of information on it. If you have any questions you can ask me any time. I will admit I have learned to live with some SE that some might not but that's because xeloda is still working, is in pill form and convenient to take, and keeps me out of the hospital. There are many people on these boards that are on one med to treat their bone mets and xeloda for other mets. For some reason this works. Bone mets are a different beast and can respond differently than other mets. I hope that xeloda helps with the tumor load
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Left - Thanks for the advice. In our case, the onc is telling to stop Letrozole and start Xeloda. She says there is no data to support that those two can work together and I an not convinced by that answer. I can not wrap my head around the fact that Letrozole has actually kept my wife stable with her bone mets. So why give it up unless there are severe toxicity implications (which is also something she could not say for sure) ?
I am definitely looking for a 3rd opinion now and would welcome a referral for a local oncologist (SF Bay Area).
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LMWL - It seems odd that Faslodex/fulvestrant is not on the table if your MO is confident that the new cancer is ERPR+. That said, I don't why she is positive that the liver tumors are ERPR+ with zero data. Glad you going forward with the biopsy. Glad you are getting more opinions.
In addition to doing functional testing, Dr. Nagourney of Rational Therapeutics treats cancer patients. He is in Long Beach, CA but he appears to do remote consults. He has his own way of doing things, which may possibly suite you better than the Standard of Care at this point. If only to give you a different perspective His TedX talk gives you a sense of his approach and personality.
That said, if UCSF were next door I would be one happy camper. Very interested in hearing about how that goes.
>Z<
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Letmywife, I wonder if you started a new topic in the stage 4 forums, if you might not encounter more of us who might have an onc rec in your area.
Mom, I agree with others you've found great news. Celebrate! The next scan may show the shrinkage. Mine have done this...stable, a few mm smaller, stable, etc.
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Letmywifelive that's exactly my question. While it's supposedly stable, ok we could hold on, but these things have a tendency to just go the wrong way. It is a miracle that finally at least we were able to get a brake, I think Xeloda really was the kicker. She started it in November. It has been about 6 wks only. True, true. But doc was anxious bcs she had no good responses b4 and she did not want to be surprised so she ordered the Pet/Ct. Stable I have learned from here, is a great magical word. But, we are Humans, and with the large load of tumors she has in the whole liver, somehow what can I tell you, it's not so comforting.
Some bone lesions did get smaller.Numerous fractured ribs?? Doc sent me a one sentence response, and nothing about the fractured ribs. Argh.. I was quite discouraged with the report. I would call it sloppy. It was done in the major Cancer Center, so one would think that they get into at least a few details just here and there, to show that they actually did some work. But all they did is pretty much say, less avid or use words as smaller and grossly unchanged! Would I accomplish something if I were to complain? Not so sure.
She is on Xeloda 2wks on one wk off. Ixempra 3 wks. Herceptin 1 week on, 1 wk off, then on again. And Xgeva every 4 wks. Interestingly, her doc also took her off Letrozole, she said obviously she is not responding to Hormonal tx because she was progressing.
Last week they skipped the infusions because her platelets were very low, and the Hemo. I think it's because of Xeloda.
I would like to ask the doc If giving Herceptin more often would make a difference. Like 3 wks on. They seem to think she won't tolerate it well. She is extremely petite. So I think they are careful. Her Xeloda dosage is 1,000mg twice a day. That's it.
I think it's wonderful that you are seeking more opinions. I believe also that you can't get good advice from the same place. Also, even in the same town, these docs stick like glue and they will want to defer to the other doc. Yes, it happened to us, a few times. Cowards, in my humble opinion. Instead of a blue wall, it's white.
Also, could you explain how you will go about the Rational T? Where, what, when, how much...thanks a lot.
Thank you leftfootforward, yes, the numbers, but somehow it does not paralel with the pictures. I still don't get the AST/ALT ALKPH getting better, and not having a/t change in the liver.
Z i also would love to do a biopsy particularly on the liver, but doc is very against it. From my convo with her in the past, she prefers not to do procedures on D if she does not have to. I hope she is right.
Bad at user I did look into this, so far I am not so convinced. Do you know of ppl that actually went. I was looking at a video but it seems you have to totally give up the treatment one is on, and other things, not so ready for it.
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Letmywifelive, I was in the same position as your wife 10 months ago. Stable bone mets on hormone therapy (a combo of Faslodex, Aromasin and Ibrance) with no progression or metabolic activity, but with severe liver progression. I was moved to Xeloda and was nervous it would not work on my bone mets and was afraid to leave the hormone therapy. However, it has worked very well shrinking my liver mets and keeping my bone mets perfectly stable/inactive and slightly improved. I actually found that Xeloda reduced some residual bone pain my inactive bone mets were still causing that hormone therapy could not do. Xeloda is a common, often recommended next step, particularly with liver progression. It is known to particularly be effective on liver mets. (In my humble opinion, I wouldn't view this as something to leave your doctor over unless you have other issues with the doctor.)
I also asked for a liver biopsy but my oncologist (and husband who is a surgeon and has performed many liver biopsies) told me that given the risks of liver biopsies (internal bleeding) and difficulty getting a good sample, he would recommend only proceeding with a biopsy if the Xeloda didn't work. It is possible for mets to all be ER+, with some resistant to hormone therapy and some not. Think of it as having several routes to work. One may usually take the preferred route (ER receptors) but if that is shut down, one will take an alternative route. When the preferred route reopens, one moves back to the preferred route. Each cancer cell is its own beast. They find work-arounds. For some reason, liver mets tend to warp and change more often than bone mets. People will often alternate various cycles or years of hormone therapy with chemo and find themselves re-sensitized to hormone therapy after spending some time on chemo.
Without proven data, doctors are hesitant to combine certain drugs because there is a lingering risk they may counteract each other and render both ineffective. There is one person on this board I know of taking Xeloda with hormone therapy but she is in Turkey. There was a small study I read that showed improved outcomes with both meds. However, it was a single study and was VERY small. I always keep it in the back of my mind that if my bones progress on Xeloda but my liver doesn't, I will request to try to add hormone therapy before moving on to the next treatment. Not sure if my doctor will go for it but he is pretty open minded and an expert in breast cancer - I find BC experts are more willing to try outside the box treatments because they are more comfortable than general oncologists with where they can test the limits and where they can't. My prior oncologist was not a breast specialist although he did a lot of breast cancer cases and he would never veer from "standard of care". My current oncologist is always doing things outside the box and I have been on the same page with his strategy.
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I vaguely remember my oncologist saying something about chemotgerapy agents and hormonal agents not playing nicely together. Again it's a vague memory. It was during a discussion about how my solitary liver tumor was PR+ on biopsy. That was new for me as I had never been hormone positive before and I was still ER -. My onc indicated she wasn't sure about grecchsnge in tumor status and that we would continue to treat me as if I was only Her2 +.
Based on this I think that oncologists don't like to mix hormonal and chrmothrapy. But I'm not an expert or experienced in any hormones treatments.
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JFL,
Thanks for the very detailed and logical response. The reason I wasn't comfortable with the oncologist today is because she could not explain what you just did so nicely. I am just looking for logic behind action.
We are still going ahead with the biopsy since we also wanted to get the Foundation 1 and functional testing done. My wife's oncologist said it is nothing major - so she was comfortable with keeping our request.
Lets hope that Xeloda gives her a good number of pain free, stable years.
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Left - Yeah I am getting a sense that mixing two things that were never tested to work together before can be risky. Based on JFL's experience lets hope that Xeloda keeps all her mets at least stable.
Lets see what the liver biopsy reveals.
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regarding stability and NED:
My favorite phrase, after a year of chemo and rads for the initial bone mets, was "stable abnormal". Since the initial chemo, the bone mets never progressed and I was stable abnormal for almost 3 years. The liver mets showed their face in July 2015, and in the lungs in July 2016.
Also, I would like to gently caution against thinking any doc has all the answers, as others have mentioned. They are humans, they make mistakes, and so much new is happening with cancer that it shouldn't be a surprise when your doc says, 'I don't know why'. This is not an easy disease for anyone involved. No 2 of us show up exactly the same and the cancer can change.
Yes, advocate for yourself/loved one. I recommend doing it in partnership with your med team. Read, read, read. I know I'm preaching to the choir and we get scared, and when we get scared, that little monkey brain thinks unhelpful thoughts.
With love,
Patt
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Z - Just listened to Dr. Nagourney's speech and found very inspiring. I would definitely arrange a consultation with him at some point and starting with the functional testing now. Lets see how closely the results match with standard of care.
UCSF is close to us (about 1.5 hrs of weekday commute) so thats where we are going next. Also waiting for the liver biopsy to happen.
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hey guys! It's been a heck of a week!
1. I'm scheduled to see my oncologist on 1/19 to talk about choices. My research nurse called yesterday with a clinical trial. But it's a stage 1, first in humans thing and I'm not ready to go there right now.
2. I'm having a liver biopsy on 1/30. So glad to read the answers upthread about what that is like!
3. My 13 year old daughter was diagnosed with mono & strep this week!
. We are really vigilant about hand washing, so all is well. But she turned to me on Sunday and said "Mom, I'm so tired and feel so weak. How do you do it?" 4. Has anyone ever invested in a massage chair? Tax refund time is coming up and I'm feeling reckless
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Rational Therapeutics, as I understood it and also as my wife's MO explained, takes a different approach for finding personalized cancer treatment. Instead of going for genetic profiling, they treat tissue sample with different kinds of drugs and then prescribe the one that worked the best. As a result they may end up prescribing something commonplace with BC like Xeloda, but they can also prescribe something thats used for (example) brain tumor and not BC at all.
Their website is here : https://www.rational-t.com
You can find more info about the cost here along with CPT code: https://cdn2.hubspot.net/hubfs/571280/CPT_Code.pdf.... MY wife's MO told me that insurance typically covers it, but thats something you may want to find out from your insurance provider.
If Dani is remaining stable, I would say that you stick on to the current treatment plan, for now. You can also send tissue samples to Rational, but then you will have to decide whether you want come out of the current plan thats keeping the disease stable and go for something different at this stage.
I plan to call them to have at least an initial consultation but may not take any treatment decision right away.
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letmywifelive Thank you for explaining. I did read his book Outliving Cancer it's very interesting. I must say just because one does not hear about it so much, or Oncos do not push for it, i am a little skeptical. But it's certainly something good to have in the pocket. I read the list of drugs they try for, and Dani has been on too many already.
They never figured out, how with no family history,she got this monster in mid 20's,and it's aggressive, that she can only stay in the same treatment i'd say at a max 3 mos.
I wish you best of luck on your second opinion in SF. Thanks for sharing.
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My wife never smoked, never drank, was never obese, never had any chronic disease and no family history of breast cancer. She has always been 10x more active than me. She was diagnosed at the age of 38. No one could explain that either. Thats the nature of the beast and people really do not know any answer to the why question.
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Mattie and Letmywifelive, I hope you get some answers with you liver biopsies! Keep us posted.
Letmywifelive, I must admit, I really wanted a liver biopsy, despite my MO and husband recommending against it. Like you, I want to understand everything - have all the data as well as the rationale behind it!!! I hope your wife has excellent results with Xeloda
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I'm new to this forum and also new to living with metastatic breast cancer. Although I have been a survivor for 24 years, I am still in shock after learning in November that I have mets in my lung, chest and liver.
My tumors are ER+HER- so I am taking Femara and Ibrance. It's convenient but a little odd to be taking "chemo" at home. I've only been taking Ibrance for 10 days. I'm curious and a little apprehensive about what the side effects for me will be.
I used to think if I was ever diagnosed multiple mets throughout my lung and liver, I would not have long to live. But, it seems like there are a lot of women who have a similar diagnosis. I'm also curious to understand how there can be so little pain with so much cancer in my body.
I am hopeful that the tumors will shrink by the time I have my next scan in April. Although it does seem like a long time to wait. But, I know how to do this cancer thing because this is my fourth diagnosis.
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Grannax, so glad you've found us but sorry to hear you qualify for the club. You are right about correcting thoughts about not having long to live. I thought the same but these boards prove otherwise. Also, I'm with you on the so much cancer but so little pain. And feeling so healthy but actually having such a terrible disease. All I can be is grateful. Best wishes to you with your new tx. May your side effects be few. Come whenever you need and for whatever you need. We rant and celebrate together. 24 years and 4 dx! Now on to living well with cancer.
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Thanks for the encouragement. It does help to know that others are living well with metastatic disease.
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I just wanted to check in with everyone after my multiple appointments last week. I saw my regular oncologist to see what she thought about this upcoming trial. I specifically asked if they were hopeful this cousin of Ibrance would work after my 16 month run on Ibrance ended. She said that is why they are doing the trial. They are not sure. But the 2 drugs they are pairing it with would have been on the list somewhere for me to take, so we are just moving them up in order, at least this is how it was explained to me. They really don't know. I think they have hope. I had a CT saturday and will have a bone scan tomorrow while they comb through my medical records. My babies are IVF babies and I think some of the meds I took are causing them to dig a little deeper. I should get some results today, I hope!
Mom-I am glad to hear Dani seems stable, you are such a great support to her!!
LMWL- glad to hear you are getting a new liver biopsy, I just did and that's when I found out I was also AR positive., There is a trial out, but it is too early phase, but coming! Xeloda was also on my onc's list to try with me. It seems like it has great effects on liver.
To everyone else I have missed, I hope everyone is doing well and feeling good!
Alissa
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has anyone ever developed jaundice
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has anyone ever developed jaundice
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Hi there i hope that you are doing good my mom was diagnosed with ILC 3 month ago with multiple liver metastases only ,the oncologist prescribed two drugs only for hormone therapy (femara +zoladex injections because premenopause) she's er/pr+ & her2- the dr. Avoided chemotherapy saying that it would adversely affect the liver
3 weeks ago she started developing jaundice that is persisting with the bilirubin levels getting high each test latest was (408) ...have you ever developed jaundice that has gone away ,thank you
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