How are people with liver mets doing?
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@candy-678 just wondering on the scale of 0-8 how strongly were you Pr+? My mum is in a similar situation and still on ibrance/letrozole. Awaiting her first mri results since starting treatment.
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DaughterOf- My recent liver biopsy (April 2021) showed ER Allred Score 0/5, Intensity 0/3, and Total Score 0/8. My PR Allred Score 2/5, Intensity 2/3, and Total Score 4/8. That is how it was worded on the report.
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Dee, happy to hear you had a great time with your family. Treasured memories. I had discomfort in liver since Christmas and had ultrasound in Feb when I got the shocking news about MBC. I’ve had some chemo, and other treatments and still have the discomfort tho ct says they gotten a little smaller. Now having pain on left under ribs that onc says is probably from a hernia he saw on ct so sending me to surgeon next week.
I’ve never had a PET and wondering if I should ask/insist??it’s only shown in liver so far. But I’m almost 76 so my heart aches for all young women
I rejoice with the good news and cry when it’s not good with all of you. Bev
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Thanks Candy, I appreciate your fast reply. My mom is allred 0 for Er and 6 for PgR. The scanxiety is real.. I just want to remember what normal life is like. She didn't deserve this. None of you did.
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So mri results are in. Before we can speak to my mum's doctor, can anyone help me understand if this is good, bad or horrible. After 3 months of letrazole and ibrance her 2 big lesions are a few millimetres bigger but her smaller lesions (10+) remain the same size. Her vertebrae lesion also remained the same size.
Conclusion on the MRI report is minimal enlargement of lesions with no changes in size of smaller lesions and vertebrae lesion.
Good to add my mum has been on 75mg of ibrance the entire time.
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Daughterof
In clinical trial terms that would be called stable disease and you would stay on course with treatment.
My last scan sounds very similar to your moms-very slight growth in one tumor, slight shrinkage in another, no new lesions so overall stable. If she is tolerating it well then I doubt they will change treatment
Stable is good, shrinkage is better, no evidence of disease (NED)is best.
Celebrate the good!
Dee
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daughterof,
Just to reinterate what Dee says, three months isn't very long, tho I have heard of MO's switching treatment within that time frame but my MO would have considered that stable enough to continue for another 3 months. Tumour markers can also rise during this period as cancer cells are sloughed off.
cheers, dee
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Dear DaughterOf, what about increasing the palbociclib dose for the next cycle, let's say up to 100 mg? Saulius
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Thanks all for calming me before we could speak to my mum's oncologist. The one who treated her before wanted to change to Xeloda but her new one that I have way more faith in wants her to stay on 75mg for another month and then try cyber knife for her two largest lesions since the rest are stable.
He assured us this is a good finding and we should be celebrating!
Regarding her tumor markers.. Her tumor mutated and no longer produces the markers so no way of tracking it that way. Her original oncologist relied on the markers way too much and missed her metastatic disease for over 6months or more.
Hope you're all well.
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Ok guys I think I may be at the beginning of the end...
I am down on the oxycotin detoxing I am at 40mg a day from 60...and working down
The halavan chemo is not treating me well even the reduced dose is causing fevers for 3 days....
I am now having undigested food or more prescisly spinach in my stool ...I cant even say "in my stool" there was no stool....I had just spinach come out of me.....I believe that is indicitive of BAD liver problems...
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Dearest Nicole, I'm holding you close to my heart as you contend with these awful realities. It's so exhausting and frightening, no matter the outcome. I hope and pray that your doctor and Care team can give you some good guidance and comfort. ❤
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Hi Nicole,
I’m sorry you’re still not doing well on the Halavan. Does Tylenol bring the fever down? (I can definitely sympathize as the first infusion of Vinorelbine has not gone smoothly. I’m have a LOT of abdominal discomfort which has been getting worse instead of better. The only thing that seems to help is pain meds. I’m a bit beside myself as it’s hard to function and I worry a bit that I’m masking something more serious.)
As to the spinach, it’s not unusual for spinach to pass without being digested as it’s very fibrous, particularly if you ate it raw. While I’m sure it’s disconcerting, I don’t think it’s something you need to be overly concerned about but I would mention it to your MO.
Hugs.
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Thanks Katty and Sadie...
Sadie I didn't have it raw....its was cooked chopped spinach...
I will definitely mention it to my MO on Thursday. As far as tylenol...its not good for the liver so I try not to take it more than twice a day...or once a day...it did help break the fever but I have fevers all day and night I cannot take the tylenol a lot....even with that though..I feel awful..then I am getting cold sweats that is from the detoxing of the OXY...right now I would rather have my pain in the spine than the oxy I want OFF this CRAP!!!!
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Nicole,
So sorry that you are having fevers. You still have FDA-approved treatments you can try. Here's what I keep for my list (took off Doxil and Halaven since you have been on them):
Epirubicin - like Adriamycin lite
Navelbine(Vinorelbine) + Tamoxifen - Only 16% response rate.
Enzalutamide w/ or w/o Bicaludamide
Enhertu
AR agonist when disease is under control
Cyclophosphamide - the "C" in AC.
Ixempra + XelodaMaybe you can discuss these with your MO. Hope you can transition off of Halaven since you are having such horrible SEs.
Hugs, Susan
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Lord…. 16% response rate Susan? I hate to think I’m going through all this gut pain for only a 16% chance Vinorelbine will do anything! 😳
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Nicole & Sadiesservant- I am lifting you up and asking our God for symptom relief, medical wisdom and healing.Hang in there.
Cancer is so awful. My sweet stepmom passed yesterday from pancreatic cancer. I'm so sad, for my dad and step brother. She was in hospice house for 80 days.
FYI-my mom died 20 years ago from lung cancer. My sister has metastatic lung cancer but is 5 years stable disease on opdivo. My dads mom died of metastatic breast cancer. My 83 year old dad has cancer all around him but has so far escaped himself
Dee
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Nicole , sorry you’re having such bad SEs. All this crap is hard enough without having to deal with all that.
If it’s of any consolation at all, my BMs have undigested spinach cooked or not , in it all the time. And has been like that since before I got cancer.
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NicoleRod: So very sorry to hear about how you're feeling. My onc. has said Enhertu is a possibility for me. It sounds very promising. Hope that's something that could be an option for you as well. Will be thinking of you.
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Dee, you have my deepest sympathy on the loss of your stepmom. May warm memories of happier times comfort you and your dad. I'm so sorry.
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I need to change my profile...
Susan..I have already done Xeloda... I am not hormone positive anymore..I am TNBC..... ENHERTU will NOT BE an option I have 0% HER2 this was even the case when I was ER+....
I am also AR-
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Dee,
Thinking of you at the loss of your stepmom. And all of the cancer that has surrounded you. It is a testament to your own strength that you are able to forge through this journey we are on and still remain hopeful and helpful to others.
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I got to have a fun trip with a few of my Say Yes to Hope friends. YES had a dinner in Houston. Dr Cen, MO and Dr Kamel, IR spoke about working together as a team to help patients with systematic TX and local TX. Suzanne also spoke about her foundation. I asked the IR what the lifetime maximum of yittrium to the liver during y90. He said 40 grades. I may have misunderstood about the “grades” He May have said something else. I knew there was a lifetime maximum that can be used. If you use more than that you go into liver failure. This is the reason my IR says I cannot have anymore y90s The IR is the only one who knows your number/ amount of yittrium he used for you liver mets.
On Friday I got a voicemail from Mary Crowley Research Department in Dallas. So, tomorrow I will call her to find out if they have a trial I qualify for. Or they may just need more records or something. Who knows. I’ll let you know
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Grannax, I hope that you do receive positive news tomorrow. It must be a stressful time for you. I am glad you had a good trip with your yes to hope group.
Has anyone heard from Leftfootforward? She hasn’t checked in lately, and that is not like her.
Lynn
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Dee,
My sincere condolences on the loss of your stepmother. It's so difficult to lose so many to this dreadful disease. I have had cancer on my father's side. Dad passed in his 60s from lung cancer and his mother died from colon cancer.
I also want to say how much I appreciate your thoughts and prayers for symptom relief. I must admit, I getting a bit beside myself as now even the pain meds have stopped working. I'm not in agony by any stretch but the constant abdominal/stomach pain is wearing for sure.
I'll likely have to call the Cancer Agency tomorrow… again. However, I am a bit nervous about starting something snowballing as I’m scheduled for my port placement on Tuesday. Things are so nuts in the hospitals due to Covid (our case counts are not enormous but they are flying patients in from other health authorities with overwhelmed ICUs) that it’s difficult to get anything scheduled. I figure that even if I can’t stay on Vinorelbine I will still need the port going forward now that my options are pretty much limited to chemotherapies. Fun times!
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A new approach, ErSO, has cured ER+ breast cancer in mice. Obviously very early research stage but sounds incredibly promising. Elena posted about it on the Trials thread. Here's an article about it: https://news.illinois.edu/view/6367/339688859.
It will probably take years to develop something we can take so we have to stay alive for it.
Hugs, Susan
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Dear Dee, our deepest sympathies to you and your family. Uhh, life...
Dear Nicole, I am so sorry you suffer again. This is crazy. Do you think you should wait to get Trodelvy, what does your MO say? Please hold on, many drugs and combinations are in the pipeline. Please, do not forget Leronlimab too (Canada), I think it is nearing approval. Do you know something about your TROP2? If it is positive, I think Trodelvy could be a game-changer. I know how hard it is to believe things might turn around but they really can!
Dear Susan, thanks for again reminding us of ErSO. It is already known for ~half a year and I think they must be moving forward fast?
Saulius
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condolences to you and your family Dee.
Regarding Erso, I agree that it sounds promising. Susan, you said it will probably take years to get to us. You would think it could get developed faster in this day and age. They already see it as a potential cure for mbc and Bayer invested millions in it. Let women that have no other option and that could be cured take a chance on it right away. It should be fast tracked as quickly as possible. There needs to be better media coverage of this . Remember how hiv patients demanded that drugs be gotten to them faster? And that helped. Let's not be satisfies with drugs that extend PFS by a few months, when they're sitting on a cure. If they've tested it on primates successfully, get it out there.
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Thanks for posting Susan. I wonder if being heavily pretreated has any impact. It wouldn't appear so since it is targeting a different receptor but...
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Elena,
I agree and hope that multiple countries can fast-track this research and bring it to patients sooner. I would want the NIH (US National Institute of Health) involved because pharma companies don't really want us to be cured. They make so much more money treating chronic illnesses. Bayer AG is a German company but the original researchers are in Illinois and they are working with a company called Systems Oncology that is in Arizona.
Hugs, Susan
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Dammit, I just went for my second infusion of Halaven/Eribulin, but my neutrophils were too low to have it (2.1).
So now I have to wait until November 1st to have my next one.
Bummer.
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