How are people with liver mets doing?
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Dee YAY y90 ! Another win.
Bbpie I'm so very sorry to hear your news. We'll all hear those words someday but I'm still sad. I, like others, hope for a second opinion and another TX . I imagine your liver is not functioning well enough for a y90 but only an IR can tell you that
I think you are allowed to be on Hospice and then off of it if another TX comes up. There are probably others that know the answer to that question.💞
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bbpie- I am sad for you that your MO is not giving you more options. I hope your body proves them wrong and you continue to survive and thrive for a long time.
Dee
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Bbpie,
Echoing what others have said -- hope you find a treatment that works. You can probably do a second opinion via video with another doc just to be sure of what your MO is telling you. Re the hospice thing -- you can go in and out of hospice. My mother was on hospice for some amount of time -- I can't remember exactly how long -- but she was on Medicare, so not sure if their rules are different from other insurance (likely not). So it's probably worth it to find out so as not to limit your options to get any additional opinions if you want to do so.
Thinking of you.
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bbpie, I'm sad to read your news. I.think I would get a second opinion. And ultimately it all depends on how you feel inside - emotionally and physically. In canada I've heard of people being in & out of hospice so I think it can be a thing - a place where you stabilize pain etc options and heal up a bit.
Dee - so happy for you!
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BBpie... I am angry at your MO!!! and I am sad for you. I hoping something will come up!!!
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Dear BBpie, I just want to hug you and... if you have enough power and will, or someone to advocate for you, please, change your MO asap. Someone who gives up on you is not worth you, not a tiny bit. With all my heart, Saulius
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Bbpie, it is so hard for us to accept. If you are ready to accept what the oncologist is saying, then we should accept your decision. If you are at all unsure, please do get a second opinion from a totally different place.
Have you had any genomic testing in the last few months? If not, can you get a Guardant 360 liquid biopsy (easiest on you) or a Foundation One tissue biopsy that could suggest a trial? I entered my current successful trial (non-chemo by the way) based on results from those tests after three chemos in a row failed. Maybe there is still a treatment you are able to process?
How do they know your high bilirubin is not from a malfunctioning bile duct stent? Have you consulted a liver/biliary specialist? Who put the stent in? Will they check CA 19.9 (for cancer in GI tract) and CA 125 (for cancer in abdominal area)? I have always thought your cancer behaved like lobular (ILC). Is it possible there is some there in addition to IDC? You may need CT with contrast, abdominal MRI, and/or PET-CT to find it if it is there. Although ILC is sneaky. We never Have found any by scans or biopsies of the bile duct area, but my onc has always maintained it was there constricting the duct, and interestingly the CA 19.9 dropped along with CA 27.29 when I got my NEAD PET scan after starting the trial.
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bbpie, please do keep us posted. Of course you should get a second or even third opinion. I have some suggestions for top oncologists who wll do w remote second opionion that I am keeping in my back pocket.
After all this struggle we all need to think for ourselves what feels right. I am approaching a state where I would rather gently enjoy the time I have left than fight this losing battle and ensuring SEs for expensive and ineffective drugs. But trust your gut.
My current "Positive thinking" investment is to order the Foundation One test in hopes that it will identify genetic mutations that will inspire a bright young MO to sign me onto an international trial targeted to a speciic mutation. Costs a bundle but looksl like those bucket list trips to Italy and India will be on hold!
Happy weekend everyone /AMY
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Thinking of you Bbpie. X
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I think an advantage of liquid biopsy for you, bbpie, would be to catch any typical ILC genes. If the sample shows mutated CDH1, bingo, there is probably ILC somewhere. Hugs to you.
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Bbpie- tough times for all these decisions you have to make........Hugs!!
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Thank you all so very much for your support, encouragement and suggestions for me! I feel like my MO has run out of options for me without giving me miserable side effects. My mom has suggested fen ben many times. BevJen thanks for the reminder that people go in and out of hospice. arolsson, I do need to think about how I’m feeling and gently enjoy my time. I have been discouraged since many treatments did not work. Im thinking of those with a gambling addiction saying one more bet when deep already in debt. Except this is my life. My husband has always said I can’t even pick out a paint color.
The CT scan does not show blockage in the bile duct but the tumor is pushing there. I had the same situation with my stent exchange last month with high bilirubin and liver enzymes. They came down and I was feeling better. I do have the option to have another ERCP to see if there’s an issue, but there is no blockage. The GI doctor placed the stent at the same hospital.
Shetland is the trial called Summit as I see in your signature
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Yes it is SUMMIT. I could enroll because my genomic testing showed that ERBB2 mutation.
It sounds like a tumor may be growing and pressing on the duct, raising your bilirubin. Maybe they could improve that during ERCP to buy you some time, but ultimately the tumor needs to shrink. Maybe you need something very different from another chemo, like Keytruda if MSI unstable or another targeted therapy, but need genomics for direction.
There does come a point when a person says, Enough, it is time to stop chasing treatments and enjoy the time left. I remember ABeautifulSunset telling me her onc loved her and felt she would do better stopping treatment. Do you feel your onc is caring and skilled and experienced enough to guide you well right now? If so can you and DH have a video appointment? If not, can DH help you arrange a really good second opinion appointment?
I am so sorry you are facing such decisions, bbpie. You have a community of people here wishing you well.
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BBPIE - it’s hard to know when to stop and when to try again. If you haven’t read being mortal- ( also on audible ) it helps with that dilemma
genomic testing also could clarify things and a fresh set of eyes (2nd opinion) Might bolster your own instincts.
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BBPIE - I am holding you in my heart and hoping that you can find another option.
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Crazy Creepy Covid is making Mother's Day so weird today.
We're supposed to go over to my son's house to have a picnic in his backyard. It's about an hour drive. I thought I would ride with my daughter and SIL. But, no. Even though my SIL has had it so I can't give it to me, he still says I cannot be in the car with him. My daughter was also sick and she got tested for antibodies. Negative. Her doc says it was probably a false negative So she probably could not give it to me either.
So, why can't I spend one hour in the car with them? Covid is making people Crazy.💞
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bbpie - Holding you close in my heart as you make decisions. These decisions are difficult, personal, and yours to make. At some time, we will all have to make them. But please, make them with your eyes wide open to all the information possible so that YOU will be comfortable with whatever you decide. I am surprised that your MO did not suggest you talk to another MO or refer you to other specialists to help you make the decisions you may need to. There may be procedures not yet discussed and there is definitely genetic testing that may get you onto a trial that may turn things around. Seems that folks on this thread can offer you names. Whatever you decide, your decision will be respected. I will pray for you and ask that God shower you with his Grace to give you strength during this time. You are not alone.
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Well ladies...I tried to ask this in the Doxil thread last week but didn't get any replies..that thread is pretty slow as was Xeloda...I guess I was use to the Ibrance thread with constant feedback.... Anyway Does anyone know how long chemos can take to work?? I already know that so far...the doxil is not working because my sacrum is still hurting and my liver...and this is exactly how I knew when the Ibrance stopped working as well.... I am not trying to be negative so please don't judge me and say that...I am just being realistic. I appreciate any info you guys might have for me.
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That's a tough question. No, in general I don't know how long it takes for chemo. to work. My experience has been that if at the three month scan it shows progression, then they consider it to have failed and switch to another TX. There are so many types of chemotherapy and they all work in different ways. I don't know all the medical terms for how they work.
Trust your instincts about what you're feeling and tell your MO. Let us know what she says.💞
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Nicole. After 3 months on AC in 2016, my liver mets were stable, that is, no progression, but also no regression.
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Gran...thanks... I messaged my MO today and asked if she could scan at June instead of July. Thanks Sandi..I know 3 months is the standard...I guess I should have been more specific to see if anyone knew before that ...that it was or wasn't working..
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NicoleRod, it depends on the chemo but time to response (TTR) medians can be up to 12 weeks depending on the chemo and can take even longer for certain hormone / targeted therapies. That means it takes half of the people more than the stated TTR median and half of the people less. That stat is often provided in trial results. I don't feel comfortable testing before the 3 month point. I did it once and will never do that again. I plan to retry the chemo (Halaven) that supposedly failed when I had a scan after 6 weeks (2 cycles). After that happened, I looked up the median TTR and it was either 9 or 12 weeks or something like that.
Some take time to work and some cause flare (increased uptake and tumor size) before they shrink. One cycle of Doxil probably is not enough, given it is only administered once every 28 days. My liver hurts now when I start every new medication. Didn't do that in the beginning but does that now when the meds are working.
One additional thought to consider from my humble, non-medical perspective - if I recall correctly, you have high grade, high KI score, presumably fast-growing BC. The fact that when your prior medicines didn't work, the level of progression you had was relatively small (again, if I recall correctly; if not, apologies for the mix-up!). It is likely that even the meds that didn't work were slowing things down, holding back the BC from growing on a large scale and having an impact. Otherwise, it is likely that you would have a larger level of progression when the meds didn't work. My point here is that waiting it out a bit longer to give the meds a chance to work may not as scary of a thought if you consider that it is likely that your prior meds were doing something. Your progressions seemed to be a "slow jog" rather than the "sprint" that can happen when high grade, aggressive mets progress, particularly after Ibrance failure which usually involves an explosion of liver mets. However, I also recall you had elevated bilirubin. I don't recall whether you ultimately determined if the elevated bilirubin was due to supplements or the BC. Being nervous about waiting longer due to high bilirubin from liver mets even if the mets themselves are small definitely makes sense.
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JFL...as usual excellent advice...so thank you
you remembered everything correctly. My MO did write back here was her response:Hi Nicole -
It is way to early to determine if this is not working or working. It has only been less than 3 weeks. If we are worried about the symptoms we can definitely scan earlier, but I would be hesitant to do it too early or we may not see the full benefit/result yet.
Good that trial we were looking at for you and may want is back open, we would have to check the specific sites. We can consider enrolling in this in the future, however I will caution you that I have just given it for metastatic triple negative and it is way more toxic than Doxil, so we would need to consider if that is the best option for you for the next step.So I guess I will just "Be Still..."....
and wait. Yesterday I lost a dear BC friend...it was my first lost of someone I actually met in person and talked to each week. I took it hardShe had wide spread bone mets...but it went to liver in November. I was stunned because she went in the hospital 2 weeks ago for off the chart bilirubin turned out there was now 9 tumors in liver. She had just started Ibrance 3 months ago (was on Tamoxifen) before that. We literally just messaged each other while she was in the hospital. She went home 8 days ago and died yesterday... My husband took this very very hard...because just a month ago we went to lunch with her and her husband...and now here he was reading her husband stating she dies in her sleep with him the night before. It got very "real" for him.
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nicolerod- I’m sorry that you lost a BC friend....I too recently lost the only in-person BC support friend I had. So Very hard as we had so many similarities in life. Just take’s the wind out of you....So hugs!!
I think you have had good advice from JFL and grannax2! Praying that the chemo is causing the pain and that as you sit still the cancer is being controlled or eliminated. I Had a scan a bit early and I was told that it’s best to wait the full 3 months, when it didn’t correlate with my other test.
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NicoleRod- I am so very very sorry for the loss of your BC friend. I know you must be heartbroken, and as you say, this becomes very REAL when things like this happen. And it's very hard to lose someone who really understands what we are going through. We all have that fear thinking that we are doing ok and the tides could turn - but how quickly. We can never know and you cannot live with that burden. Surrender that up to God and focus on you, your therapy, being as well as you can be, and your husband. We all may die tomorrow, but we are here and alive today.
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Thank you Anew!!!
Hopeandgrat...... You get me every time.
Happy tears... I love how you say "we cannot live with that burden" Surrender that to God. ... Thank you!!! (((((((hugs)))))
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my clinical trial requires scans every 8 weeks. I just had it yesterday. Only cried once in the waiting room. Crying is a pita when you have a mask on cause it's not supposed to get wet ...
Then it took 2 tries to get an IV and the 2nd one was kind or marginal. Didn't go interstitial but the contrast stung like a devil and I've never had it sting before in the previous scans I've had.
Now I'm worried we are scanning too early.
Last night, i tossed and turned and I convinced myself she would tell me my whole liver is gone and she was writing a referral to you know where.
I can't find any info on time to response on atezo
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Moth I just prayed for you!! ((((hugs))) Please let us know as soon as you get those (GOOD) results
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Rejoicing for those of you who have good news; praying and hoping and I share the pain of those for whom things aren't going so well.
I had my results reviewed. I have 7 new liver lesions that cropped after I stopped the Ibrance/Letorzole; I wasn't even on the Ibrance that long, just a year. But anyway, most of the progression was while I was on 3 months of Tamoxifen. We stopped that, and since March 25 I've been on Faslodex, I just finished the loading phase. God I hope it works. Is there a death and dying thread on here?, I haven't found one.
I spoke with a resident of the radiation oncology team and he offered no local treatment options for me at all. He wasn't specific as to why, just said it wasn't an option. They don't seem very big on local treatments at my hospital, he said they are not usually done for liver lesions stemming from metastatic BC. But it seems like many of you have had some success with local treatments, so I don't understand it.
It's pretty bad when just going into a hospital to get a CT adds an extra layer of risk and fear, as if we need that!
Big Virtual hugs to all of you during these difficult times!
Amica
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Amica, I’m not sure if your onc is thinking of doing anything more for you? I hope not being lazy. Can you get testing to see if the cancer has a PIK3CA mutation and if so add Piqray to the Faslodex? Can you go consult with an interventional radiologist who does treat mbc patients? Please obtain Bestbird’s mbc guide, which has an extensive discussion of treatment options.
Moth, how I hated those IVs placed in radiology. They were the worst. (Then I got a Bard power port.) Next time can you finagle getting it placed by a skilled nurse and then go to the radiology department? If the trial scans at two months, they must think there is a good enough chance that they may see success at two months. If not, I bet they stay the course and check again later. You are not heavily pretreated, so that is in your favor as far as getting a response. And in any case, you are not getting a referral to you-know-where! When and how do you get scan results?
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