How are people with liver mets doing?
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Thank you Dee for caring and sharing! I see my MO on Wed so will talk with her then. I am all for getting an MRI to know whether all clear or not (even though I hate MRIs). Always some fear, but putting it off or denying it won't help. Thanks for sharing your information and I pray you will get the all clearAGAIN! I am sure having had COVID complicates things a lot!!! Please let us know when you are scheduled for your MRI.
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Hi everyone I got the call today my MRI with sedation will be on April 7th. I don't have to be admitted but it will be done at the hospital. Hopefully I will have the results following day. Ill remind you all as it closer bc I NEED all of you with me and your prayers.
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we will be there Nicole. You might need big pockets that day!!!
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Grannax2 you look great
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Update on my treatment plan - my MO wants me to be off chemo for some time and ensure that the blood counts are all near the normal range.
I am on steroids till March 31st. After that she wants me to start on anti-androgen tabs (Xtandi : Enzalutamide) since I have 80% androgen receptor positivity.
In the meanwhile, my MO has set up a consult with the IR for Y-90 procedure, which would probably help in getting the liver mets under control. The CT scan done from last weekend shows that some of the liver mets have grown to >3 and 3.5 cms, even though the report says they are 'stable' since Feb2021. I guess the Adriamycin was working!
I am happy to get off the chemo and its side effects but at the same time wondering if Enzalutamide would keep my bone and liver mets stable. I am trying to find out more about this new drug's efficacy for M-TNBC.
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AlabamaDee, how's the skin near your port? Hope it has cleared up.
leftfootforward , sorry to hear about the progression. Radiation to the thoracic area has some side effects but hopefully it will be milder since this is considered 'palliative' treatment. Please keep us posted.
theresa45 , regarding your IR's statement that, " my institution does not do it until at least 25% of the liver is involved since healthy liver tissue is also affected with Y90" , I am wondering if that was just the institution's policy? May I ask where do you get your treatments? I will be consulting with the IR on 1st April for Y-90 and I'll ask her about this. I have multiple liver mets so she had mentioned some time ago that I am a good candidate for Y-90.
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S3K5,
Best of luck to you on this new drug -- I haven't heard of that one. Also, enjoy your chemo break. Hope you figure it all out.
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Nicole, you have your MRI on the same day that I will be getting the results of my PET and MRI. We can be in each other’s pockets.
RE Questions about y90. Ive had two y90 procedures, one set in 2017 and another in 2019. They both were successful and gave me much needed time. The first one eighteen months, the second one year. I found the recovery to be very doable. ( I did not have the complications that Nicole had. PTL) I had lots of lesions each time I never was told anything about there needing to be 25% I don’t know what % I had
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Grannax indeed you will have good results I know it Eribulin is great on liver mets.
S3K5.... what is Androgen??? I never heard of that how do I know if I have that??
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Nicole- prayers for an easy MRI and good results
S3K3 my skin over the port is unchanged but is not infected. I hope you can get a local therapy like Y-90. It slowed my progression and reduced tumor burden
I have heard about androgen therapy for breast cancer. I was tested and do not express androgen. Here is an interesting article. https://www.nature.com/articles/s41523-020-00190-9
My brain mri is Monday March 29.
Dee
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Hi Grannex - I’m just starting Eribulin. How are the side effects?
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Leee I’ve tolerated it fairly well. The worst SE for me has been low magnesium which can cause, or make worse, heart arrhythmia. I already have one, SVT, and even with magnesium IV it still stays low. Hair loss but I’ve only lost about half of mine. I’m usually especially tired the first few days after infusion.
The best thing about Eribulin is that it only takes ten minutes to go in! Also, no pre meds needed. Hope you do well.
Dee, Brain MRIs are not my favorite thing at all. I’ll be praying on the 29th.
Nicole, I hope your right. I want something to work on my liver mets.
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S3K5, I'm surprised your MO is recommending enzalutamide? A Nature Comm paper last year had very convincing data that androgen receptors act as tumor suppressors for breast cancer, functioning to shut down estrogen signaling, and therefore for treatment we would want to increase their activity with drugs like enobosarm, rather than inhibit them with drugs like enzalutamide (which is used in prostate cancers to inhibit androgen receptor signaling). Below are the links to the paper and the Veru announcement of a pending phase 3 trial for Enobosarm. I remember Hope (who started the Ibrance thread) chose enzalutamide as her last-chance clinical trial, which sadly did nothing for her- those trials must still be ongoing and would have reported out with some data by now? I think there were some reports of enzalutamide possibly helping AR-positive TNBCs but the new paper argues not only should enzalutamide not work for MBC, it could even make things worse. So I would ask the MO for more info about that choice.(Enobosarm was also tested is combination with immunotherapy for AR-positive TNBC, but adding the keytruda did not help very much- more is needed to make immunotherapy work in general.)
https://www.globenewswire.com/news-release/2020/12...
https://www.nature.com/articles/s41591-020-01168-7
https://www.globenewswire.com/news-release/2021/01...
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Oh boy... ultrasound specialist wrote "hypo-echogenic lymphnode in post mastectomy breast axilla level II is measuring up to 4.5x6.5 mm and is suspicious for malignancy". Nothing else is seen anywhere, last (2 months ago) liver/organ MRI was clear, so all NED, except for this lymph node that was noticed 3 months ago (28/12/2020), was 3.8x6.5 mm, so almost no change as of today (just 0.7 mm change in three months), was difficult to spot (is above the lung, deep behind muscles). Sandra got her 2nd Covid shot a week ago, the area was also radiated after mastectomy. My wife did not have lymph nodes removed during mastectomy, as surgeon said lymph nodes can be removed later but are important to "catch" cancer cells if any were left.
Biopsy for that lymph node is scheduled for tomorrow morning... does anyone have experience with lymph nodes that seemed suspicious but biopsy was negative? Also, if biopsy would be positive, in our situation, as far as my knowledge goes, we should push for some local treatment (SBRT, surgery, etc.) and stay on HP which keeps her NED already for 3 years?
Saulius
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Saulius,
Don't panic yet. I don't have links to many articles, but just looked up this one from the Cleveland Clinic, a very reputable medical source in the US:
https://newsroom.clevelandclinic.org/2021/03/03/wh...
There has been some press in the US that Covid vaccines can cause changes in lymph nodes, and that can last for up to 4 weeks. I'm sure someone else can provide you with other articles if you want. You may still want to biopsy -- I'd call the doctor and discuss the Covid vaccine shot a week ago.
I'm hoping that that is what explains this. Good luck.
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Saulius,
Here's another article for you to look at --
https://pubs.rsna.org/doi/full/10.1148/radiol.2021...
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Thank you Bev. I knew Covid-19 shot can cause lymph nodes to swell but this one they found 3 months ago. They saw 4 other very small lymph nodes (3-4) that were <2 mm, and now these are gone (it is said in the report that in level III nothing is seen) but the "biggest" is a bit bigger (0.7 mm difference - which can be a measuring error, as different doctors did these ultrasounds), so they decided to biopsy it. Maybe it is for the better... to finally know what that is, and then decide what to do next? Saulius
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Saulius,
Okay. I just wanted to make sure you knew that about Covid vaccine, but as usual, you are up to date!
Good luck on the biopsy tomorrow, and yes, I'm sure it will be good to figure out what's going on, if anything, so you can move ahead and attack it. Good thoughts coming your way for tomorrow's biopsy.
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Dear Bev, all your advises are very practical and valuable, I learn a lot of from you. Let's hope biopsy results are non-malignant, and if... we will attack it with all aggression. Thank you sincerely, Saulius
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Saulius - praying for good results on biopsy
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saulis
I’m sorry for the lymph node issue. tiny changes can still cause concern.
If I were you I would ask “If they can biopsy the node, can they remove it.?” Hoping it is not positive but if so I would consider surgery. I have had 2 friends that had positive lymph nodes later and both were removed with success and NED.
Hoping the biopsy can provide some peace but,If positive, maybe you can get next gen sequencing for the future.
Dee
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JFL..just thinking of you. Hope Enhertu is doing its job.
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Saulius, Sorry to hear about the lymph node. Hoping it's the vaccine and nothing more.
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Cure-ious, thanks for the links to the articles. They are very informative. When diagnosed in 2008 and later in 2013, the pathology report for the biopsy samples said ER/PR +ve but the liver biopsy report in Oct 2020 showed it was TNBC.
For AR positive mTNBC, Xtandi (enzalutamide) shows good clinical efficacy. Blocking androgen receptors in ER +ve MBC can have negative effects but I am 80% androgen receptor positive (ER/PR -ve). With this change in pathology, I guess my MO decided it may be beneficial for me to start on Enzalutamide.
Dr.Tirana who lead the clinical trial for Enzalutamide is from MSKCC research group and my MO has access to all her data. Since I have a keen interest in research, My MO spent a lot time going over the data.I appreciate your knowledge in oncology research and always look forward to reading your advice.
Nicole, Androgen is a hormone. Many triple negative breast cancers are androgen receptor positive. (My liver biopsy report said this). Now there are target therapies available to block these androgen receptors in an attempt to block the proliferation of tumor cells in TNBC.There isn’t a whole lot of data on this yet. As Cure-ious pointed out, these androgen receptors should not be blocked in ER+ve tumors.
Since mTNBC has mixed clones of tumor cells, either way I am screwed! LoL!
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S3K5- I forgot this bit about your converter status, moving to TNBC. Have you tried immunotherapy, given it tends to work best on converters? I was just reading a year-old report on a trial, small, but about half of the converter phenotypes responded at least six months compared to only 15% of the ER-negative... And I did guess you were in the orbit of Traina!!, she had a post enzalutamide awhile back on onclive for TNBC population
https://www.healio.com/news/hematology-oncology/20...
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saulius- I hope the lymph node is nothing. I will be thinking of you.
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S3K5- You got it, here's a paper talking about the mechanism by which TNBC and basal-like MBC subtypes require AR signaling and so respond to enzalutamide.
https://pubmed.ncbi.nlm.nih.gov/33294922/
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Dee, others, thank you so much for your support. Fine needle aspiration biopsy went well, results possibly on Monday. Firstly, we hope it is nothing but if it is something, you are absolutely right, we should go for surgery. Next Friday (2/April, so when biopsy results are already in), we have already arranged appointment with our surgeon. These success stories of your friends, they comfort us a lot. I also remember when talking to surgeon before mastectomy, he mentioned that lymph nodes can be removed later. We'll see but we still hope it is nothing. Saulius
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Saulius,
Thinking of you, your wife, and your son. Hoping that this turns out to be nothing, but that's great that you already have an appointment with your surgeon.
Bev
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Saulius wish I had more to offer than saying I am sorry to hear about this lymph node thing. Thinking of you and your wife!
So I just wanted to let you all know that my husband and I got a new Jack Russell puppy. (we used to have one and went to the same breeder)...I was leary of taking this on right now...but I have been very depressed and even feeling despair at times. My family, and husband thought it would be very good to have something to not only take my mind off my cancer, and thoughts of dying etc...to keep me busy but also for the love and companionship. My husband also wanted this and has come home during the day to help out and stay with her if I need to go to the store and such. For those that are wondering, yes, I still have my liver pain and bone met spine pain...but its manageable. I talked to a therapist from my cancer center last week and she also thought it would be good and positive for me. (I do really like her ( my therapist), although I sat there sobbing through the whole 1st appt) lol.
I forgot to mention. My husband and I had been praying for months that if the Father thought we should have a dog to place the right one in our path. We had a deposit in and were number 8 on the list. The dog had 4 in this liter so we werent even suppose to be in this one...but something happened and the person that picked her couldn't take her...and the breeder called us. So we felt it was meant for us to have her.
Anyway her name is Ayla...in Hebrew it means Halo or Light..she has a halo of white around her nose... here is a pic of her she is teeny tiny.
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