How are people with liver mets doing?
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BlueGirl RedState,
I am eligible for keytruda because I have what's known as tumor mutation burden high. The FDA has approved the use of keytruda as a single agent across all solid cancer types for TMB-High and also for something known as micro satellite instability high.
These mutation "markers" (not sure if that's the right word) must be demonstrated via one of the approved genomic tests, based upon a tumor biopsy. Think Foundation One (mentioned here before). I've had two different genomic tests -- Foundation One and Tempus -- as well as a liquid F1 biopsy. I'm seen at a major cancer center. You say that you've had a "genetic" test -- those will only show inherited BC genes, not things that may have developed during your cancer (known as somatic mutations). I've had genetic testing done in the past, too -- and it basically showed nothing. But my cancer has clearly mutated while I've had it, and that's what these genomic tests show.
I would discuss the possibility of a surgical biopsy with your MO to see what else could be used. Also, I've seen that some people move from Ibrance to Verzenio (there are several people on the boards who have done that) and Verzenio, which is taken every day, has help them some.
Also, you may want to consider a second opinion on your whole situation. If you cannot travel to a major cancer center (not sure where you live) you can try to arrange such a consult via Telehealth. It would require gathering all of your scans (when you have your PET, ask for a disk as well as the report -- you will need both for a second opinion) and making contact in advance to try and set this up.
Good luck.
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Nicole, what a terrible situation. I am praying for your recovery.
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Nicole, the fact that you are posting is a positive sign that you are inching your way back from a scary and painful experience. For you to take any pain meds, tells me a lot on how bad you are feeling
It sounds like your MO wants you back to baseline and stable. You are strong, focused and smart. This pain and delay of treatment is a temporary set back. You will get back on your feet..that is who you are.
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Nicole, So sorry you are going through so much from the Y90. My thoughts are with you and I hope your recovery has already started without you knowing it.
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Nicole
I am so sorry your body reacted terribly to the y-90. I pray that each day is better. Just want you to know you are in my thoughts and prayers 🦋🦋🦋🦋
I hope you can find some help managing your issues with palliative care. Their purpose is to make your quality of life better. Can they get you a pain patch? My sister with stage 4 lung canceruses that method and it works well for her. She goes to the pain clinic.
Please give updates when you can. I care.
Dee
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Nicole- So sorry you are going thru all this. I have thought about the possibility of local liver treatments for me, even though I have not discussed it with my MO. But... I would definitely not go into it lightly after hearing your experience with it. Wow. I think I will stick to systemic treatment for now. Take care and post when you feel up to it.
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Nicole, thinking of you. It is so easy to go to a dark place when our bodies betray us and when we feel so ill. Our minds are weird - I know when I'm in pain and feeling ill, I cannot remember how it feels to not be ill and in pain. I have to keep reminding my brain that it's not always been like this and it won't be like this forever. Hour by hour, day by day. Hang in there. You'll get strong again.
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Dear Nicole, I wish with all my heart and soul that we could take away your pain and your fear and your understandable feeling of hopelessness. All I can do offer you my concern my care for you and my prayers.
May the One who was a source of blessing for our ancestors, bring blessings of healing upon those who are suffering, a healing of body and a healing of spirit. May those in whose care they are entrusted, be gifted with wisdom and skill, and those who surround them, be gifted with love and trust, openness and support in their care. And may they be healed and comforted along with all those who are in need. Blessed are You, Source of Compassion. Amen.
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Nicole - You have been on my mind and in my heart. I ache for what you must be going through and I pray for your healing and your release from pain. Seeing that you posted lifted my spirits! I know you are regaining your strength and on the road to recovery. Take time for yourself to heal - body, mind and spirit.
Dear Lord, in whatever way is Your will, please bring comfort and healing to Nicole in her time of need. Let her feel Your presence and know that she is never alone and she can never be separated from You. Watch over her and let her feel Your tenderness and love.
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Hi, I had quarterly scans last week as I have MBC triple posit to my bones de novo. I’ve been bone only for 5 1/2 years. My CT report indicates a hypodense 1.3 cm lesion on my liver. My tumor markers are up 25 points in 3 months. I’m getting an MRI next week. I’m just really nervous and sad. Hoping I can get some responses of hope and what to expect. I’m currently on Kadcyla which has been a rough go for me. I’ve been on it since June. My liver seems not to like it at all as my liver numbers have been high since June but were normal for the past 5 years. Kadcyla is my second line of treatment. I think Falsodex is my next line.If you read this, thanks so much. I look forward to your responses.
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Txmom
I am sorry for what seems to be progression. It is scary and emotional. The people here are great encouragers and have lots of experience.
May I suggest a very important next step is a liver biopsy with NGS from one of the companies offering it.(foundation one, TEMPUS, etc). Once you get that data, you will know if your tumor has mutations and what therapies would be best. Your oncologist can order it and an interventional radiologist will perform it.
If they can't get a liver biopsy, then you could ask for a liquid biopsy, FDA approved Foundation One
Please consider local therapy to the one liver lesion. There is a thread for that here. If the tumor is in a good spot for local treatment then you could qualify for ablation, y-90 etc. esp if your bone mets are stable
I am not Her2 so I can't speak to that, but there are several here who are. They may offer experience in that area. I hope you soon get the answers you need to proceed with as much confidence as possible o this rollercoaster ride
Dee
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Hey everyone,
Just checking in. Feeling decent on my current treatment Abraxane. On a 1,8,15,(then break to 28) dose schedule which is fine. Currently only fatigued the night of treatment and end of days for the next day or two ( so far). Finally got my Liver biopsy done. The first pass was painless, but the second was unpleasant since they had to biopsy the left lobe and apparently they irritated the capsule. Either way they have two great samples they said, so hopefully I'll know my markers soon, though it'll probably be a few weeks. I am trying not to think about the possible results because I really just need some good news in all this mess ( like it's not mutated to triple neg). I can't see it been 100% ER + 50% PR + this whole time and just completely switching, but I Suppose it's possible ( please don't comment that it is possible, I'd rather be ignorant for now).
My current MO has a great interest in mutant drivers and said she'd look into Foundation 1 but not to expect much since I have so many lines of treatment on the table first ( which I guess is comforting but at the same time I know it's dependent on my markers). My curiosity lies in the fact that my Paternal Aunt has the brac2 mutation like myself and is on her fourth PRIMARY cancer( Breast, uterine, lung, and likely colon now with lots of metastatic deposits from each cancer). If that doesn't scream a mutation in her DNA somewhere, I don't know what does. She does not want the genomic testing. I think she's fairly over it all. Anyway, it's all very frustrating . I can't really afford foundation 1 or any of the testing but I do think it's vital to know.
And I'm currently jealous that it seems like most here get their Tumour markers monitored frequently and I can't even get them to test at all. " We go by scans and how you feel" If that's the case and If I was anything but stage 4 to begin with, I'd be far more advanced as I am now. I don't know what it hurts for them to test it , but whatever. I'm over being told no. Here's to positive results .
Hope everyone is doing as well as they can be !
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Hi Dee,
Thanks so much for your response. In Oct my Dr said she would do a biopsy with the next progression. She did say she took a blood test and sent it out to see what treatment would be effective for my next line of treatment. Do you know what test that is? I’m just having a tough day today.
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B-A-P, my Dr initially did not take tumor markers either and went by scans. I think I didn’t have my taken tumor markers taken for years. Now she does both.
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B-A-P
Glad you had a decent liver biopsy. Sorry it was a bit tough. My first one was too.
I am a bit confused, You said they sent off the biopsy to know markers, but youcould not afford NGS like Foundation one. I think TEMPUS has a self pay where you fill out the form and their test is under $200.Your aunt's case is really amazing-4 primaries. I can’t imagine going down her path.
Hoping the best for you and answers to help you move forward
Dee.
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Nicole, it sounds like you're making wise decisions about no chemo and no y90 until you feel much better. I'm so sorry the one % thing happened to you. I feel the same 1% thing happened to me with my MWAs. I think it sort of traumatized me like none of my other TX has.
I did have my second infusion of Eribulin on the 21st. My magnesium got even lower with the first infusion so they had to give me some IV. Not a good combination for both magnesium and potassium to be low. Although it is an SE along with heart rhythm problems, which I also have.
So far, no appetite and fatigue have been my main SE. I have next week off. I'm glad for the break. My next cycle will start on February 3.
I'm hoping all of us can keep doing our best to cope with all the unexpected issues we are having to experience. It's a difficult full-time job we have.
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Hi Dee,
I'm in Canada so doing biopsies for Hormone and Her 2 status does not cost me anything. Testing like foundation 1 is private and from their website it appears to be $6000. Genetic testing for things like BRCA status is also public sector but it was going to take a year for the test and so I did digging and found the Women's College of Toronto was doing a study and that cost me $200 and I had an answer within a month ( Turns out BRCA2 +) My aunts BRCA status was never mentioned to her when she was first dx'd with Breast cancer. I think she was 53 at dx and triple positive which I believe my MO said is not usually associated with the mutation. Her lung cancer is BRCA2 positive ( same exact mutation as mine) and I don't believe lung is even on the radar of that mutation.They only tested it because she mentioned me. My uncle ( her brother) also has pancreatic cancer from the mutation so it's doing a number on us. It's just too bad I was the second one to get sick so I was dx'd late based on my young age (30 at the time) and "weak family history " My dad and all of his siblings are Positive and only two of them at the moment have cancer.
I will look into Tempus and see what that is all about
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Nicole - Thanks for the update! I'm so very sorry that you've experienced so much pain after the y90 procedure. I will be praying that you will be feeling much better soon. I agree with Grannax that you are wise to recover before you undergo a second y90 or restart eribulin. It's very nice that the IR wants to check in on you weekly!
Grannax - I hope that Eribulin is very effective against your cancer and that your oncologist can work out the magnesium and potassium issues. I hope that your week off will allow you to regain your energy and appetite.
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BAP, foundation one in Canada may be willing to work with you and any extended health insurance for coverage of the costs. I saw them responding on Twitter to a Cdn pt to contact them and see what could be worked out.
Mine was paid for by the clinical trial but I still don't have results. Hopefully by the Feb meeting with my MO.
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Dear Nicole, we all pray for you to get better. No words can tell what you go through but this group of people is kind of closest to understand your situation. Hugs, Saulius
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Hi Txmom. Sorry you've had progression and find yourself here, but it's nice to see you. I remember you from the bone mets thread. I was NEAD 4.5 yrs with bone only, then whammo with liver progression 13 mos ago. Still searching for the right treatment, but I'm currently on Verzenio. They tell me I'm now low Her2+, so no longer on H. It was unnerving for me to progress in the liver, but I'm surprised it's already been more than a year. Hoping it all settles for you and Kadcyla works tho it sounds like you've had a rough time of it. I'm also taking Faslodex, and so far, it's treated me well.
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Thanks Moth!
I looked into it and I'm going to give my oncologist the forms so she can check to see if I'd be covered. I feel like it never hurts to check ! Thanks for pointing me in that direction ... I went on the wrong website before hand.
I also looked at Tempus and it's $2500 for "international" patients and they don;'t have assistance for non US patients
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That dna testing is expensive for out of pocket. I remember back around 3 years ago there was an article about a B.C. company, Contextual Genomics, that was offering free testing for Canadians, but I looked into it, and basically your province gets allotted a certain number of tests, and a board of provincial oncologists decides who gets them. Apparently breast cancer patients were bottom of the barrel for getting them because they didn't believe there was much information that would benefit therapy choices.
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I went for my annual physical with my PCP. She has referred me to a cardiologist to manage the heart rhythm problem I already have, SVT, and the ones that could become problematic during my TX of Eribulin. The SE’s are already causing low magnesium which can also cause heart muscle contraction problems. As I continue TX, he can monitor anymore issues that come up.
I think it’s a wise idea to have a cardiologist on my team with this drug and the SEs it’s already caused. Even though I hate to have to go to another doc, I think it’s the right thing to do.
Nicole, try to keep your spirits up. I know that’s easier said than done. Don’t make any important decisions during this time. I urge you to wait until you are out of pain from your y90 complications to decide important issues.
You are still in recovery from the yttrium in your colon. You will get better and, therefore, have a better outlook on your future.
I have so many liver mets that they cannot count them. I’m on Eribulin, like you were. I won’t find out until April if my tumors, in my lung and liver are responding. I’m hoping they will respond like yours did. I’m not having any pain right now so it’s easy for me to say all this.
But, I was in horrible pain a month ago. It’s amazing what a month can do as your body heals.
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grannax- sounds like you are being well cared for. Good to hear from you
May I suggest trying slo-mag supplements? My MO was worried about the multiple infusions per month of IV mag I was getting. He said my body was beginning to depend on the IV and not making/using its own mag. I tried many different mag supplements and got the D issue, I found slo-mag to work the best. I am taking 9 pills a day ugh. I also read that HZTC can have a rare side effect of low mag so I stopped taking that. Last labs my Mag was normal!!
Waiting for scans is hard. I’m with you there.
Dee
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Good information.
I’ve been taking magnesium supplements for four years but not the one you mentioned.
I just changed to a different one. Taking 800 mg daily. NatureMade extra strength. It sure is better at helping with constipation than the other one. I’ll have more labs on February 3. My doc said she could RX one if needed.
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Dee, I am so sorry to hear that you are having to cope with Covid, and I hope it is a mild case.
I got my first Pfizer vaccination and will get the booster on February 6th. My husband will get his first shot on February 2nd, so we will both be fully vaccinated by the end of February. We live in a huge over-populated county and distribution has been very erratic and chaotic so we are very lucky.
Best to everyone here,
Katty
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Got this invite in my email this morning about clinical trials and thought I'd share.
Join us for our free webinar: Clinical Trials 101
Join Ciitizen members Sheila McGlown, Alyson Tischler and Abigail Johnston along with our friends at Survivingbreastcancer.org this Sunday, January 31st at 4 PM ET for a lively and interactive discussion on clinical trials.
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Bliss --
Thanks for posting this information about the webinar on clinical trials. Very useful.
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Thank you Bliss
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