How are people with liver mets doing?
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Faripari - I am sorry for the loss of your mom. You two obviously had a very close relationship. Thank you for sharing it with us. It is clear how much you loved each other. Praying for you and your family
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Nicole- I know you are growing more and more concerned, but don't look too far ahead. Stay with today. 🙏🙏🙏. Did they consider or discuss Y90 Treatments for liver? Aside from bone, do you have progression now in any other organs
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Faripari, I am sorry for the loss of your sweet mom. You are a wonderful daughter. May God grant you peace and comfort until you see her again in heaven.
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Nicole- I am so sorry to hear your news. As Hope said, don't look too far into the future. One step at a time. What is your MO saying? You are in my prayers. Only God knows how much time you have left. The next chemo may be the one that halts the cancer in its tracks and things can turn around.
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Hope...the progression is that the 2 existing tumors in liver grew..one to 4.0cm now and they other around 1.0 or 2.0 cm..and now 1 new tiny one near those..and then 1 new bone bet in C7.
I just had the strangest thing happen...I just called my IR to see about setting up the biopsy and asking WHY he cannot do the TACE...the girl said "oh he left a message here for you ..he said for me to schedule you for a COVID test so we can set up your biopsy and TACE PROCEDURE"?!?!?!?! I said "wait WHAT??!?!?! My MO said that he said there is only a 30% chance it will work????".....Yet at the MO appointment I said to my MO "are you SURE he said 30% chance it will work...and not WONT work"???? she said "no he said that 30% it will work"...I thought that was odd bc when I spoke to him 2-3 weeks ago he told me (before the new MRI) that there was a 70% of success..... Anyway now the girl said..."Ok wait..then let me have him call you directly"...... I said yes...please do. so who the heck knows about that crap now.
I really don't want to sound negative here that is not my goal...I just feel like NOTHING has worked yet. I even asked her "Do you have any patients that are like me...that haven't had one thing work and now have this as their option"..... she said..."well I have some similar except other things have worked for a bit like endocrine therapy they got more time out of".....
We all know Taxane chemo is the end...I am sure Erilurubin >spelling, is probably gonna be like Doxil...and Xeloda... 0 effectiveness for me...and Taxane...well that is the end of the line...so what do I have left here 6 months...at best. I am just trying to be realistic.....I don't want to be...but its just the truth.
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Nicole - have they discussed Y90, which might have a better chance than TACE. And less side effects? Are they familiar with it for use in liver nets for breast cancer at your institution? I understand they are considering TACE...well maybe..... I just want to be sure they covered all options. You should message grannax2 on Y90. As for me, if I had no other progressions in other organs but my liver lit up again, I would go directly to Y90 (if I was candidate)
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Nicole-Google Judy Perkins. She failed multiple treatments and was considered to be 2-3 months from death when she got into a trial using immunotherapy. She's now considered to be cancer free. She's an outlier but maybe you can start exploring this if this next chemo fails.
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We discussed 6 Immunotherapy trials...the ones I wanted were all Phase I and she said "right now...she wants to get control of this"....that it could take at least 4 week or 6 to even get accepted into a trial and its not even guaranteed it would work..and that for ER+ breast cancer all the research she has done (and I am paraphrasing here) there is little very little (and unfortunately I know this true, simply bc its only been done on ER+ recently it was always TNBC that got immunotherapy) cases that actually are successful... MY bigger concern was that if I get a third line on chemo I will be in-eligible for most immunotherapy trials..
Not to mention almost all the ones I wanted I there was exclusions...
I thought JFL was on Erubilin? Im am so numb right now... I literally feel like I don't have more than 6 months... My son is getting married Nov 1st..and my mom said the other day that she prays every day for me to be there for that..and I said to her...WHAT...of course im gonna be here for that its only in November..now im like WTH??????? that could be a stretch...
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Just so you know, Judy was ER+ so keep advocating for yourself! You could start the chemo and in the meantime apply for trials. Fingers crossed that somethings works and knows that cancer out.
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Nicole- I did weekly taxol for over a year. It actually was not that bad in terms of SE and it gave me time. I know you are in the thick if it but we are here to give you hope if you can’t find it yourself.
I am taking 1 day at a time BBC as I had to trade life saving blood treatments for my cancer treatments. I don’t like taking a break from the cancer treatments but it’s where I am at. One day at a time.
Holding you in my prayers.
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faripari- you and your family are in my thoughts. You were a wonderful support for her.
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Nicole;
Will there be a new biopsy to be sure the cancer remains ER-positive?
Tho it can take time to get into a trial, it dos not take time to get another opinion lined up, picking somebody at a major place who can tell you what they are seeing in the latest trials
Halaven/eribulen is even in clinical trials with CCR4 inhibitor, that one has been getting good buzz
Radiation to liver maybe buys you some more time to get some good options lined up?
Godspeed & Good luck!!!
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Nicole, I did weekly Taxol for two years a good while back (around 2017-2018), and have gone through two other lines of treatment since then. It's not the end of the line! Take courage.
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Cure will a CCR4 work with my mutations? Yes we are scheduling a biopsy i decided I don't want F1 again we are going with Tempus?apparently they not only do a few more gene checks then F1 but they she said they match you with the most trials (paraphrasing) we also discussed Gaurdant she said what ever I want she will do...but i like what I heard about tempus.
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Oh sweet ladies- so much is happening here.
My heart is bursting for you faripari. I hope in your mourning you know you did everything possible. we are with you.
Nicolerod- you have a crappy report and deserve some good results. I hope the chemo works without much side effects. Prayers for wisdom in which way to go including radiation.
Grannax- I had a single 1cm Lung lesion that lit up on the PET scan. RO considered it Oligometastatic because the liver tumors did not light up- they were considered treated metastatic disease. Other tiny lung lesions did not light up, So I qualified for SBRT knowing at the time there is no study for OSR. The idea was to stop it from growing since the liver tumors shrank with current combined therapies. I said let’s whack-a-mole this bugger. Maybe I can get some abscopal effect, maybe I can stay on this line longer since it my first shrinkage. Both MOs said the treatment may not make a difference overall, but the RO has a different outlook andsaid just the fact that I am treating that lesion gives me the mental benefit!
This article says SBRT is showing some data for OSR.
https://www.morningstar.com/news/pr-newswire/20200...
Blessings to all. Stay safe. My son was unknowingly exposed to covid on Tuesday and then came to my house on Wednesday (we wore masks and social distanced) now we wait. 😷
Dee
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Faripari - I am so sorry to hear about your mother. You truly are a wonderful daughter and did everything you could for her, please remember that. I hope, knowing that she is no longer in discomfort & that she is in paradise, gives you some comfort to deal with your sadness and loss.
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Faripari, I’m so sorry for your loss of your dear mom. You did everything you could, and doctors did everything they could, and she tried as hard as she could to endure all that her body was dealing with. I hope you look back to your time with her and cherish the happy and sweet moments you had together. Memory eternal. 💕💕
Nicole, I’m glad you have the various docs advising you, along with the knowledge and support here. It’s got to be hard to decide which path to take. I wish you courage and peace as you move ahead to what’s next. Keep looking ahead to your son’s wedding!
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Nicole - I am saddened to hear about your progression, but I agree with the other ladies, one day at a time. You do have more options of treatment, and I am sure that one of them will work for you.
I will be doing Tempus testing also...... I just spoke with my MO, and didn’t get the best report. I had five scans done and all showed no cancer anywhere in my body. Wouldn’t you know it, the sixth scan ( PET scan) showed cancer in the lymph node underneath my left arm & lymph nodes along the breastbone, and cancer on the sternum. And here, all along, I thought it was just my liver that was affected. My liver biopsy showed that my cancer didn’t change when it metastasized, it is still ER+ HER2 -. So, now I will be starting Ibrance/Faslodex/Zometa, don’t know if that will change once Tempus testing is done......
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lafsunshine - I am so sorry that you received disappointing news with that final darn scan! I wish you all the best as you move on to your next treatment and will be praying the therapy works well for you and gets this under control. 🙏🙏🙏
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HopeandGratitude - Thanks so much for the prayers, they are so appreciated! Right now I feel like I have been suckered punched.....how stupid of me to think that this nasty beast was just in the liver. All I can do now is place myself in the Good Lords hands and pray that He guides my MO to the right course of treatment for me.
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Ok ladies...my MO just called we were on the phone for a 1/2 hour. So she said that she spoke to my IR at John Hopkins...he may be able to get me in for a biopsy (liver) Monday or one day next week. He said that he can do the TACE (not necessarily that day) but that he is not confident that it will completely get rid of the tumors...that its more likely to just shrink them some. He did say I can have TACE done while on Eribulen. Heres the thing... I feel like the bigger the tumors the more TACE more chance of side effects (he personally told me that 3 weeks ago when we spoke) right now my biggest is at 4cm. I am kind of afraid to wait and if the Eribulen doesn't work it will be really big then will need more TACE..etc... Any thoughts??
Also...she told me that she could tell that I sounded very discouraged..and she wanted me to know that she doesn't in any way feel that I am out of options..and that there are at least 3 to 4 more options...also that if we ever get near that point she will tell me and be up front about it. That she would never want any of her patients to spend the short time they have left coming in and out of a cancer center..she wants them to have quality time with their family. She also said I want you to know I am very much on board with looking at and getting you into a trial I just don't feel that right now that is the right fit because of where we are with your disease...she said I think you liver is very good right now and can totally handle the treatments we are looking at and she said my cancer Grade 3 "TENDS" to respond well to Erubilen and Texanes ( which I have heard that from other MO's as well). She was really nice and also said that we will scan after 2 months instead of 3...and also if the Tempus comes back saying another treatment we always have that also to fall back on next.
CURE-IOUS..that trial you mentioned above with the Eriublin and the CCR4 she never heard of but she said she will look it up tonight when she gets home.. (she called me from her car).lol
On a 2nd note and I will cross post so everyone can see...but I just want to say thank you so much to you all for loving and caring about me....seriously...and *great, now im crying again* I literally feel so loved here...
I will take any and all thoughts you all might have for me
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lafsunshine, I am sorry to hear of your progression. I have just completed four good years on Ibrance / Femara/ Zometa because of mets to liver, in lymph nodes under arm and in additional other areas before moving on to Xeloda. Using Faslodex instead of Femara is probably recommended for your type. Please do not panic and give the new meds a chance. I am pulling for you!
Nicole, it sounds like you have received good advice. I am not knowledgeable enough to know the TACE stuff, but others here are. Take a breath and know you are covered in prayer.
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IntoLight - Thank you for you’re words of encouragement. You’re experience does give me hope.
Nicole - You have options, take it one step at a time. Sounds like your MO is compassionate and will go that extra mile for you.
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Nicole- Breathe. MO said more options are available. I do not know about TACE. I need to read up on it. So I cannot give advise about that. Just breathe. You are not out of options. Prayers.
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Nicole, I am so sorry that your scan shows progression. I am really shaken up to read that. Its a good thing you had the opportunity to talk to your MO. She sounds like a wonderful Doctor with your best interests in mind, and that she has confidence that you have options, options that have a good chance of working, and that a clinical trial may not be the highest priority at the moment, because she believes other chemo based options can work, and prevent further progression. I'm encouraged that she tells you that your liver is still functioning well despite the tumors, and I'm sure she wants to keep it that way by going with something that is a more certain bet, and will work faster, like chemo. Is your sacrum causing you pain? Radiation tends to work quite rapidly against cancer. Can you ask the Doctor about the benefits and side effects? Will the side effects be localized to the bone area being irradiated? Will there be systemic side effects? How bad would they be, and how long would they last? If it brings you relief and healing, maybe 5-10 days would be worth it.
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Nicole,
Here is a link discussing some recent findings from the Halaven+CXCR4 inhibitor trial. The tumor has to show CXCR4 expression, which many aggressive cancers do. The CXCR4 drug also inhibits CXCR4 on the immune cells that are protecting the tumor, so it is both an anti-tumor and an immunotherapy. The data so far indicate that the combination is better than Halaven alone, and most importantly that it increases overall survival
https://www.prnewswire.com/news-releases/eisai-ann...
The protocol your MO proposes includes Abraxane, where it is assumed that your cancer is now taxane-resistant, so Halaven is added to try to reverse that and make it sensitive to Abraxane. No idea what the PFS for this kind of combo is, or whether it can improve overall survival
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Other clinical trials you could consider are Erdafitinib (anti-FGFR)
https://clinicaltrials.gov/ct2/show/NCT03238196
or Sacitizumab Govitecan
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Faripari - I'm so sorry for your loss. What a difficult time this is for all of you. Be gentle with yourself.
Nicole - you sound down but hang in there. Your MO sounds like they have a plan and they're nowhere near giving up so that's great. I don't know if it was this thread or another one but I read something (written maybe by one of the husbands?) questioning the keeping of 'heavy duty' chemos for the end & suggesting this might not make sense. Why not hit hard and fast early, when the pt can handle the SE's and hasn't been worn down yet by other treatments. This struck me as an interesting way of looking at it; do you start less harsh and hope and when things progress move to harsher/stronger tx or do you go out of the gate with the hard stuff? I wonder if there's evidence either way or if it turns out to be a matter of an MO's training, philosophy and clinical experience. It's all moot for tnbc as they hit us with the hard stuff right away; it's taxanes or platins or both etc for us. And you've heard from several people who did taxol early or in the middle and it was in no way a 'last ditch' effort .. so even if that turns out what you need to do, it doesn't need to be bad news.
lafsunshine - sorry to hear your news but otoh, good thing something caught it, kwim, cause now you know and can treat. It's hard though, isn't it? I hope the treatment works & SEs of the treatment aren't too bad for you
It was treatment day for me, 11th taxol of the 2020 series (I already had 12 in 2018). First IV start was a miss & hurt like it might have grazed a nerve and it almost made me faint; all of my veins were hiding. And in the end, I'm not so sure that the vein wasn't leaking a teeny bit - not a full extravasation but just a teensy slow leak. I *think* I have a very small bit of swelling & it is a bit sore. But maybe the pain is the nerve from the 1st miss.
I need to ask my MO if we can start to use my left arm. Haven't had any probs with lymphedema and I just can't see doing this again and again. Phlebotomists can't draw blood from that right arm either anymore as even in the cubital there's too much scarring so I've been doing them on the left already. I've thought about a port but I don't even know how long I'll be on iv chemo; what if I go through all the headache of having it done (would have to go to a different hospital than I usually go) & then I don't end up really using it? Phlebotomists can't take blood from them, only RNs can & apparently it's really rare to get that arranged here. For CT I was also told that it limits your appointment times because you have to book at a time when an RN is on site because again the techs can't access the ports and can only start iv's... Anyway, we'll have to sort it out.0 -
Cure-ious...I didn't understand your last paragraph : "The protocol your MO proposes includes Abraxane, where it is assumed that your cancer is now taxane-resistant, so Halaven is added to try to reverse that and make it sensitive to Abraxane. No idea what the PFS for this kind of combo is, or whether it can improve overall survival"
My MO suggested either Havalen or Abraxane. She said the side effects tend to be easier on Havalen but she would let me choose. I don't understand (forgive me if I sound stupid lol) how " it is assumed my cancer is taxane resistant" when Abraxane is a taxane and she offered that as a choice? I know I probably sound dumb but I don't get it? lol Can you maybe explain it so I can understand?
I had already gave her the trial with the Kidney cancer drug to look at. Apparently that kidney cancer drug has really bad side effects. (JFL took it too) I have to be honest that trial has Ibrance and besides failing on Ibrance/Faslodex/Letrozole (as I know you already know, we have talked about it)..I had to drop down to the 75mg due to low neutrophils and In addition to that I had really really really bad mouth sores on Ibrance so bad I couldn't eat and they wouldn't heal until I stopped treatment for over a month.
So I personally don't want to go to Ibrance yet but I am definitely open to other endocrine therapy drugs and I believe she is too..just not right now..because now my cancer is spreading and she wants to get a hold of it. I did bring up about how a lot of Immunotherapy trials will not take you if you have had more than 2 lines of chemo but she pointed out some trials that do not care how much chemo you have had and that unfortunately those immunotherapy trials that are just now taking HER2- ER+ they are only in Phase 1...to take 4 to 6 weeks to even get accepted then to try something that has none evidence yet of even working for anyone I could be losing months. I get it though...believe me...I get that even Abraxane and Havalen are risks too but I think we need to try something right now that we have never tried that can be started NOW not in 3 months from now. She also said she is going to scan at 8-9 weeks not 3 months so that if its not working we can try Abraxane.Husband thank you for your kind words. Yes I spoke yesterday morning before I saw the MO to a Radiation Oncologist about the sacrum. The side effects could involve the colon and even the bladder...but less likely the bladder. Fatigue..possible bowel movement problems ie: diarrhea etc. I may do it. He asked what my pain level is from 1-5 (5 being the worst) I said a 2-3 but its not a constant all day pain. When I have the pain (sitting or standing to long etc) its usually a 2-3 sometimes its a 4...but nothing not tolerable. He said the choice is really up to me. I don't want to do anything with that yet...until I figure out if I want to do the TACE on the liver.
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Nicole. I think you have a very wise and kind MO. She's taking good care of you. I really don't know much about the details of trials, etc. But, there are several giving you expert advice here. I did take Abraxane ten years ago. It wasn't too bad except for hair loss.
I'm sure your IR must have considered y90 as one option. There must be a reason why he chose TACE instead. Did he discuss it with you?
I think my MO was ready to have the talk with me last October when everything looked really bad. Fortunately, I was ready with option of proceeding with my second set of y90s.
I believe what your MO said. You halve several options left. Y90 s and TACE are not a one shot deal. Sometimes they can be done more than once and be effective, again. 💞
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