Scared and confused.

[Staceyness]

I just got back from my first scan results. Good news: the tumor in breast and lobes have shrunk to almost nothing. Bad news: there are three new spots on my liver that they are going to biopsy and see if my ER +\HR- status has changed. Why do this? If it has changed, what are my options? Are there treatments available for all status of metastatic breast cancer in the liver? I’m so scared.

[alicehblack]

Hi Stacy. I am no expert but I think there are many treatments available and this biopsy will just help them to pick the one that has the very best possibility to work. I am going to ask to have a biopsy of my liver mets on Wed when I meet with my doctor because I feel like we have been "flying blind" without the information. I look at it as one more piece in the puzzle which hopefully will lead to the right medicine and give me the best chance. Best of luck.

[PJBinMI]

Scared and confused is probably true for most of us for the first year of this crazy living with mbc journey! So much to take in and so much to learn...... Where our mets happen to be certainly has an impact on how our bodies function but generally treatment is tailored more to the nature of the cancer cells much less than where they have migrated to. One really good thing about the liver is that it is the only organ in the body that can totally repair and replace itself! As long as you aren't in liver failure, it's not generally an emergency to have liver mets. Not what any of us want, just as we don't want mets any where, but how your liver is working is more important in the big picture than the specific size or number of liver mets. So you can relax and breathe and wait for test results. Usually all our mets are similar but occasionally not. I've had mets since 2004 and a few years ago they switched from P + to P - though they stayed E+ and treatment hasn't changed because of that. It's also possible that the liver mets have been there longer than you or the onc realized as they have to reach a certain size to show up on scans. That's just the nature of this crazy cancer and we all take it one step at time. The other shrinkage is great news and suggests that treatment is working!

[Mcap]

Stacy, I am going thought the same thing. I'm very worried. My first 3 month scan came back with mix results. Breast tumor stable and lymph nodes shrunk. New nodes and enlarged lymph nodes in my lungs. I'm having a lung resection of a few nodes in my left lung on the 27th. This is to determine the type of cancer and if breast cancer the hormone status. With my first lung biopsy the Drs were unable to get a large enough sample to determine hormone status. They figured it was the same as my breast. ER/PR+HER2-. Now they're not so sure. I may have to stop taking ibrance and I'm so disappointed and scared. I'm also going to have to take 6 weeks off from work because of this procedure. Work and ibrance were making my life seem so normal. Depending on the hormone status i will either stay on the ibrance with an added drug or end up on chemo. I know the waiting is hard, keep us posted and good luck.

[Staceyness in reply to Mcap]

I have to stop taking ibrance too until they figure out what's best for me. Hopefully the letrozole will hold the breast stuff steady.

[Clair19 in reply to Mcap]

Hey I’m praying that things will go good with the biopsy. Hopefully it’s the same and you stay on Ibrance. Even if it’s changed Chemo is not like it was. I had 6 months of Doxil which is strong. I lost just a few pounds kept my hair and very little nausea. As I went along my body adjusted and I felt better than on this Faslodex. I lost more hair on Ibrance. So try not to worry easier said I know.Please keep us posted on outcome. I leave that day for vacation but still try and post. I have been praying for you that it is the same in your lungs. Clair

[Mcap in reply to Clair19]

Thanks Clair, when do you start Verzenio?

[Clair19 in reply to Mcap]

Hey sorry I didn’t write back been in a bad place. I’m going to start on July 8th. I’m going on vacation and flying and staying at my in laws and diarrhea is really bad even with medication. I’m hoping the Faslodex will hold me for 10 days while gone, thanks for asking. I have it. I’m praying for you with your biopsy on the 27th.

[Mcap in reply to Clair19]

Clair, I had a blood draw today. Neutrophils are at .475. They don't want me to go to work. Cannot start my 5 cycle of ibrance, 100mg. My numbers need to come up to normal levels by the 27th or they will reschedule the biopsy.

[Clair19 in reply to Mcap]

You might do better on the Verzenio because not so hard on Neutrophils. Mine where .5 on Ibrance. You have 2 weeks it should be up than. Get as much protein as you can and I hate to tell you I ate vanilla ice cream. For some reason it brought it up to 3.4 and wbc over 5.3. Hey it took them 5 months to figure out what I was. Because my breast came back scar and took forever to get lung biopsy. It’s always something with this disease. Try not to worry I have faith you will be fine. They say I have that sixth sense.

[Mcap in reply to Clair19]

Clair, I hope your sixth sense is right. I'm sure my wbc will be up to normal levels by the 27th. Did your Dr. give you 75mg ibrance before he decided to move you to Verzenio? Sorry to hear your been experiencing a dark period. Hope things are better now.

[Clair19 in reply to Mcap]

Hey I’m sorry I just saw this. No he did not because my Neutrophils dropped so fast. I just got my Faslodex injections today. I’m gaining weight so I guess that’s good. You get your biopsy the day we leave for vacation. I will pray for you and will talk when I get back.

[Mcap in reply to Clair19]

Thanks for your prayers. Have a good trip.

[Snowcone16]

Hey,

I have seen so many threads where people had spots in their liver go away. I also read a thread of a woman on her 14th year of MBC. At 9 years, she said the BC had turned from hormone positive to triple negative. I guess that’s possible...although my uneducated medical opinion was maybe it was a new primary. Either way, 14 years and still doing good. She indicated that she had went to hospice at some point years ago too. Lots of new meds and treatments. This can be managed.

[Clair19 in reply to Snowcone16]

I’m knocking on wood as I write this. My liver had a 2mm plus a large area of soft tissue that lit up on Pet scan as cancer. Now it shows normal. Now I did have chemo but my liver is the only place that shows NED. So your right the liver can heal itself.

[blms]

Yes, the receptors can change--surprised me!

[MMMP in reply to blms]

Yes - started off positive now triple neg-who cares-live each day and enjoy every moment!

[blms in reply to MMMP]

Yes, but I have to tell you I hate that phrase and when people say that to me, I think, you think I'm going to die. People go into remission every day, truly they do. Live the life you intend!! ( a twist on Charles Krauthammer) and I love this!! Be happy--tough but doable. Try L theanine--slone kettering says that patients on that live longer. It keeps you positive without drugs.

[kkrouse in reply to blms]

What is L Thea Nine? Is it a mood stabilizer?

[blms in reply to kkrouse]

L theanine is a vitamin supplement that is like a mood stabilizer. You feel nothing as you would with drugs and you don’t look drugged out to others either! Somehow you just are not as emotional. I only take 1 first in morning on empty stomach. But you can take more. I do have the 200mgs tabs.

[kkrouse in reply to blms]

Is it a prescription?

[blms in reply to kkrouse]

NO!!! Natural can order from amazon

[kkrouse in reply to blms]

Awesome! Thank you!

[Garnet131]

This is similar to my situation: Diagnosed in October 2017 & now on Ibrance Cycle 9. First follow-up CT scan in February showed lung lesions and nodes "no longer visualized," plus a marble-sized lump near my neck was gone. But there was a new 10mm lesion in liver that "could be metastatic." Doctor didn't seem alarmed about that--said we would keep watching. Now it's time for another scan and doc is looking for approval for a PET (they are limited on Medicare). If PET isn't approved, guess it will be another CT. I'm waiting for the phone call to find out which and set up appointment and feeling slightly nervous already. Thanks to PJB and Snowcone for the info on liver mets. "...one day at a time, Sweet Jesus"

[Clair19 in reply to Garnet131]

Agree don’t worry about liver, as it can heal easily. Mine did as far as the scans are showing. I’m happy to hear about your lung lesions as I have them. What bothers me most is the plural effusion because makes my breathing a little harder. I’m glad for your healing of lesions.

[Garnet131 in reply to Clair19]

Thanks for your words of encouragement re the liver. Just got CA 27.29 results from last week and it is down to the lowest it's been since diagnosis. Had gone up the month the liver spot was found and then up and down since then, so glad to see it went lower. I can definitely sympathize with you on breathing issues, as that was what sent me to the hospital twice last fall, which ultimately resulted in my mets diagnosis. Will be praying for you.

[Clair19 in reply to Garnet131]

Do you still have breathing issues? Mine is mostly when I do short sprints of activity. Like walking around is fine but if it’s hurried I get problems but recover fast. The Dr says mostly from plural effusion. I don’t want oxygen. Good luck to you.

[kkrouse in reply to Clair19]

I’m having shortness of breath. My doc says it’s not the Ibrance, so I’m going to see a heart guy. But this started about my 3rd cycle.

[tmills64]

My hert2 changed from negative to her2 positive. There are so many treatments for both. I had a biopsy just because my doctor does it during treatment because it can change. Good that he did because meds for her2 negative don't help hert2 positive. He also did a new scan I had some new spots on the bones. I start Gemzar, herceptin and pergeta tomorrow Monday . I know it's hard don't be scared they can help you.

[Clair19 in reply to tmills64]

I’m Her2 negative and take Faslodex and Verzenio. Both Ibrance and Verzenio are for Her2 positive and negative. It’s Brac and triple negative I think can’t take hormone treatments. Well both positive and negative have can use these medications.

[Staceyness]

Thank you everyone. You are all so reassuring. Praying big time for all of us🙏🏻👆🏻⚓️🌊

[RLN-overcomer]

Sister/Warrior/Over-comer: I am sorry you are facing this challenge in your life. We all experience challenges in our lives. It is okay to be afraid, and to cry, but don't stay there. Remember this verse "Your faith has made you whole". May the God we serve , The God who moved mountains, and parted the Red Sea give you healing, and peace. This is the same God we serve today. May our Lord/God bring the right doctors, nurses, and seemingly unrelated people onto your path, that he will use to restore your health to NED. Remember you are a Victor, and not a victim. You are an Over-comer, and heir to the throne. I pray this prayer for ALL of my Sister/Warriors. in the struggle to eradicate this disease Amen. XoXoXoXoXo

[Staceyness in reply to RLN-overcomer]

RLN overcomes,

I want to meet you! You are such an incredible woman of God. Thank you for your wisdom, your sharing of your faith and your time that you take to encourage all of us in His name🎚

[Lisa-n-AZ]

Hello, just thought I would drop you a note. I have a friends here in Phoenix we all seen at Mayo. I started with 6 tumors in my liver/2 spine/4 breast, but I am blessed to be NED since Aug 2017. Friend 1 is on Ibrance (8 cycles) and recently had her cancer spread to her liver. She has a liver biopsy schedule for next week. I told her the my liver biopsy was pretty painless; only a little discomfort for a few days. Her doctor is discussing the possibility of Radiofrequency ablation on her liver, should now more in a few weeks. My other close friend-2 (diag MBC in Feb 2017; NED Aug 2017) the cancer came back (May 2018, breast + spine); she had a lumpectomy last week and the cancer receptors changed. She was previously ER/PR -; HER+; the New tumor is ER- PR+ HER- (which is very rare). She is scheduled for radiation on her chest and spine. So the cancer can change pretty quick.

My first oncologist put me on 4 cycles of Dose Dense Chemo...and told me I would never have surgery or radiation. That the only treatment plan was various chemo treatment for the rest of my life. It was a very negative experience for my first 3 months of treatment. Became my own advocate and moved to Mayo, and made several friends that have had innovative procedures, such as a rib transplant for ribs that were failing due to cancer.

You are in my prayers, stay strong and be your own advocate.

[lashinator]

I too am hearing this for the first time that the receptor status can change. I just had my first 3 mo scan since I started Ibrance/letrozole. All my numbers have come down, although not significantly , and my liver tumor stayed the same. The onc was confused because if the number come down, the tumor should shrink. Upon a second and third path report she found the tumor is dying from the inside out. So the tumor size still looks the same even though something is working.

I am staying the course for now- another 3 mo of the same meds then a scan. Sitting tight for a while, but it's sooooo hard to get your brain to the same place. It's all scary but these boards and posts help.

Best of luck and try to stay positive.

[Lordmandy]

There are targeted therapy treatments depending on the specific receptors of the cancer types. Try to be calm and positive. Stress only weakened the immune system and increases inflammation. If you are a spiritual person, spend time in prayer and meditation. We are so close to a cure with car-t therapy! #livingintothecure!