How are people with liver mets doing?
Comments
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Oh, nicolerod, we're so sorry to hear that. Sending warm thoughts and best wishes that your next treatment works for you. Please, let us know how it goes next Thursday. We're thinking of you!
The Mods
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Nicolerod - I’m so sorry to hear this seriously disappointing news. It’s a gut punch for sure. Please post an update after Thursday’s appointment. Hugs.
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Dear Nicole. I’m so sorry to hear about the return of the “bites”. I know how frightening it must be for you. However, I would urge you to not jump ship too quickly. I’m not sure of the protocol with Gem/Carbo but if it’s similar to Gem alone (three infusions followed by a break week) then you have not completed a full cycle. It’s my understanding that chemos are tied to the cell cycle and so you would not be able to see a response that quickly. The bites may be appearing as a result of the cancer building up in your system before you began the latest treatment.
Please ask your MO if you can realistically assess the drug combo so early. And also consider that you have nothing to lose by giving it more time unless there is something better to jump to or if you are having negative side effects. (As per my note earlier, Gem can cause lung damage.
My heart and prayers are with you. I really do understand as there are a few of us who are finding chemos are no longer working. Sending a big virtual hug.
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Thanks Ladies...
Sadie...no its 2 weeks on 1 off for GEM/Carbo...so I completed cycle 1 and this is my week off.
Every SINGLE DAY I am seeing Triple Neg women die...its literally like a PLAGUE!!!
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Dear Nicole, I know it is not much but if we could help you in any way, please tell us, write us... big hugs. We have to believe there are solutions. Cyberknife to everything except bones? Another Y90? Hugs...
Saulius
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Nicole, you are always in my thoughts and prayers.
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Nicole
I am relatively new to this stage and don't yet have the knowledge or experience to offer the information and advice that Sadie, Susan and Saulius and many others can provide, but want you to know that you're in my thoughts and prayers, as I'm sure you're in the thoughts and prayers of everyone here.
Rooting for a new effective treatment for you.
Eleanora
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Saulius,
Great results but, if I'm reading it correctly, the trial says you can't have been on ANY treatments for mTNBC. So your first treatment has to be the trial drug? I've never heard of such a strict inclusion rule before.
Are they looking for people who become TNBC after being ER or HER2 positive? I can't imagine there are a lot of first-diagnosis TNBC people who weren't immediately put on some kind of chemo or Trodelvy. Dato-Dxd is very similar to Trodelvy so I can see excluding people who have been on that.
Will definitely put it on the list to watch.
Hugs, Susan
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Hi Nicole,
Thinking about you. Check in when you can to let us know what your MO said. Hugs.
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Alabama Dee asked me to post to you all :
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Good news- I started Trodelvy (line #12) mid Aug, scanned Nov 1 and got some shrinkage!! I am still on it, next scan is late Jan.
Bad news- liver Mets are diffuse and gave me ascites and painful leg& foot edema. I have an aspira abdominal drain recently placed.
I won't go into them, but all the SE have been a big battle for me. The liver is angry and that's what worries me the most. "0 -
Nicole-Thanks for posting news about Alabama Dee- It is so heartening to know that she is getting some effect from Todelvy!! so sorry about the liver- hopefully it will settle down.
Hugs to you as well
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So good to get news from Alabama Dee, thanks dear Nicole! Saulius
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My MO wants to stay the course with GEM Carbo which i figured she would say...but if bilirubin happens to rise and rise we can move up. to Jan for scans from Feb 15. She said she cannot tell if I am chemo resistant yet bc there are more chemos to try. On a very disappoiinting note the NIH Car-T trial told her I am not allowed to use "Right to Try" they don't allow that???!!!
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Prayers for Alabama Dee, that her ascites will reverse itself. It can happen.
Sorry to hear about the ineligibility to receive the NIH Car-T therapy Nicole. I am praying you will find other options.
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Nicole
You are dealing with a very difficult time in your treatment, but you are strong, both in your mind and heart and in your ability to advocate for yourself.
We are all rooting for you!
Eleanora
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Nicole,
Thanks for the update from Alabama Dee. I wish she would rejoin the boards. Maybe she could use a new name or whatever the Moderators say will keep her safe.
Please let her know that we miss her!
On the right to try. Unfortunately hardly any trial sponsors offer that. NIH T-cell people definitely can't offer it since it is a customized treatment that requires a long hospital stay. I have seen a few sponsors offer it and then rescind it. MyShadow was receiving Leronlimab? but I believe the company stopped doing it.
Sorry to hear that you weren't able to get on the NIH trial. I applied to it, then decied to go on ARX-788. Now that I have active brain mets, there's no way they would take me. When I applied, I hadn't had any activity in my brain for 3+ years.
Hugs, Susan
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Well, the news is somehow worse than I expected. Gemzar wasn’t working. I have significant progression in my liver which is now very enlarged. That explains the right flank/rib pain. I also have something funky going on with my kidneys - hydronephrosis due to pressure on the ureters. MO is referring me to a urologist to see if they feel I should have a stent now or wait a bit.
So chemos are no longer on the table. I’ve only responded to Xeloda so there is little chance any others will be successful. It seems my only shot is if an applicable trial presents itself here. The idea of doing nothing and letting the disease run its course is pretty daunting. What a crappy situation to say the least! Damn….
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Sadiesservant- I am so sad to hear this! I hope that there are trials for you- perhaps an ADC- I wonder if you can get an approved drug here in the USA? I remember a west coast Canadian coming to UCSF for a trial. It sounds like not a good time to be on no cancer treatments-
Thinking of you and sending hugs
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Oh, Sadiesservant, that is really crappy news. I hope a trial becomes available soon. Would your MO consider circling back to another CDK 4/6 inhibitor? It seems some here in this thread or the Verzenio thread have had luck with that. Maybe it would buy a little time while you look for trials? Sending gentle hugs.
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Sadie, I’m so sorry to hear your news. Floating with nothing for a treatment is daunting. Then again letting your body heal is also a good option.
I too am nearing the end of what’s available/ what’s working. I had a back to back week of Erubilin that caused my white count to crash. I was hospitalized early November for febrile neutropenia and pneumonia and got the call there from the MO saying the cancer is growing in my lungs, resisting treatment. I’m on Tamoxifen now (I hadn’t had it previously) to see if it will slow the progression. I’m very short of breath these days….I thought the tumours in my liver would be the ones to kill me, nope, it will probably be my lungs. My goal right now is to get as strong as I can so that I can do clinical trials and maybe chemo with Gemzar.
Nkb you are amazing as an inspiration.
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Sadiesservant , I am sorry to hear your news. I hope your MO finds some answers for you. I know how it feels to believe you still have time left only to be told there is nothing left for treatment.
After so many chemos failed me followed by the severe reaction to carboplatin , I am moving on to Immunotherapy, Keytruda. When that fails we will look into clinical trials since I have a large number of mutations some of which could make me eligible. I am not sure I will actually qualify, of course.
Please keep us up-to-date. I don’t post often, but I do try to keep track of your developments. You are alway so thoughtful and caring.
Hugs and prayers from, Lynne0 -
Thanks everyone. I knew from the “pre-talk” in September that it was likely going to go this way but was still unprepared for the reality. I held out hope that perhaps Gemzar was working but more recently the right flank discomfort was telling a different story. It’s the amount of progression in the liver that has me really rattled as I’ve been able to find comfort in the fact that it’s been growing slowly. I think even my MO was a bit taken aback by how much things had changed.
So many of us struggling right now. 🙁 I hope each and every one of us finds something to beat it back again. Lynne, you are my hero. You’ve bounced back so many times and I am sure you will do it again. I recall last year at this time and now, here we are again! Pots, hang in there. I’ll give my MO his Sunday but will reach out tomorrow to suggest we try Aromasin. It’s unlikely to work if I am truly endocrine resistant but also unlikely to do any harm. Worth a try to see if I can slow down the liver!
Wishing you all much joy at this time of the year. Big hugs!
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Dear All, I am so sorry for so much going on here. Nevertheless I am truly blown away by your courage and will to confront and fight this adversity. I am hopeful therefore that 2023 will bring even more great drugs, more great clinical trials, and more people will be saved. Hugs,
Saulius
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Sadiesservant - I am so sorry to read your last update about Gemzar. Hoping for some promising developments for you today when you talk to your oncologist.
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Sadiesservant, you are in my thoughts and prayers. Today we get scan results. Another one of those days of fear and hope. My wife's tumor markers have been slowly rising since August. Hopefully the scan shows no progression, but we need to be prepared for a change in treatment. The abemaciclib has not been easy on my wife. The stomach problems have been endless and really taken away from her quality of life. If we have to switch treatments, I think the Onc is pushing for fulvestrant. Personally, I think she should go back to xeloda. It worked, and had the least side effects. I have a hunch that a break from hormonal based treatments might resensitize the cancer to hormonal treatments, as opposed to going from just one to the other, after seeing failure, which to me suggests a loss of sensitivity to that type of treatment. There was a time when they used to treat women with estrogen, because after estrogen deprivation failed, doing the opposite would work for a while.
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Husband11, thinking of you and your wife as you get the scan results today.
Carol
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husband11,
Have you had a conversation with your wife's MO about Elacestrant, a new oral SERD, that may get FDA approval in Feb 2023?
Several articles and discussions can be found about Elacestrant and the phase 3 Emerald study. Here's a recent one:
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Husband11 I am praying for you and your wife please let us know results.
Sadie..I am right with you!
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NicoleRod, Sadiesservant, Pots, 50sgirl: I’m so sorry to hear your disappointing news. This disease SUCKS. Sending you all a virtual hug and a giant dose of good juju.
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Scan results showed stability, thank God! More ascites, but it isn't really bothering her any more than usual.
Tumor markers continue to rise. We will cling to the good news and rejoice. Thank you all for your thoughts and prayers. Also, thanks for bringing to my attention Elacestrant the new oral SERD. Another arrow in the quiver that can help someone. Lets hope it gets approved quickly.
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