Newly diagnosed. Versinio. Scans stable. Onc wants Chemo.

[Adele_Julia]

Urgent: On Verzenio. Liver mets spread. Now Chemo ? Please help !

Ladies,

I'm posting this for a friend who was recently diagnosed with MBC. 4 months ago. She is on the board but is in shock and is not able to post at this time. She is ER/PR+, Her2-. We need input for her. She's new to MBC. She lives in Indiana.

My friend Beth, has been on Verzenio/Faslodex for the past 4 months . Her recent CT scan showed eveything stable but her liver legions have increased. This is a CT scan. Why she has never had at PetScan is beyond me. Has anyone experience being on Verzenio and increased liver mets. What medication was then recommended.

Her oncologist is one who view things as glass half empty. When she visited him yesterday, they want to toss her into CHEMO for 4-6 months, due to liver mets that have increased. We all know that oncologists follow a regime and path , big Pharma and chemo is their first selection and path of least resistance. However, he is open to a second opinion and suggested that she seeks a second opinon.

Beth is ER/PR+ Her2 negative. She had a lumpetomy at 2019. It came back and is now in lungs, liver and bones. Latest CT scan said Bones and Lungs are stable, liver had a quick uptake. Again. Her oncologist wants to throw her into chemo but has never ordered a PetScan.

Beth has to make a decision to go to Chemo or seek other alternatives. She is 57, killer energized gal. 90 pounds wet and lives in Indianapolis, Indiana

Need your help:

1) She is looking for a second opinion for an oncologist within a 2 hour radius from Indianapolis.

2) She just started Verzenio/Faslodex 4 months ago and we all know it takes 2 months for the full effect. Her CT Scan was after 4 months after the start of Verzenio/Faslodex - 2 months after Verzino took affect. I do know that there are other medications available. Please comment on your path.

3) I have introduced her to CoC and Cyberknife to target those tumors.

I know I'm long winded but Beth is totally devastated and yet, it's all achievable. Help!

Blessings,

Julia

[Ardie1970]

I was diagnosed in January with the same thing. I have been on Letrozole and Ibrance since and liver Mets have shrunk...some by over 50%. I don’t have lung Mets but do have suspected bone Mets. Side effects have been minimal.

[MyMiracle13]

Maybe she can try oral chemo Xeloda?

[Carolhelen]

Hi Adele. I was on Ibrance and Falvestrant for 11 months. It shrunk my tumors and also clear my nodes in my lungs. It stopped working a couple of months ago and has now spread to my bones and a few other places. They wanted to put me on chemo infusion, but having been there before, it wasn't something I wanted to go through again until there are absolutely no options left. I'm now on Xeloda. 2 weeks on and 1 off. The 2 weeks on are fine and the one off is pretty crappy, but bearable. I would definitely insist on a PET scan and ask about other options. If the onc is not willing to do that, find someone else.

Wishing you and your friend prayers for peace and health.

[Iwasborntodothis in reply to Carolhelen]

Yes! Why isn’t she being offered Xeloda? And yes, the week off is the worst- why is that? I’m on my week off now and it SUCKS!

[HollyWeen]

Hi - I go to the Cleveland Clinic which isn’t too far from Indy. Maybe she can get in at the clinic for her second opinion?

I was diagnosed Feb 2019 ER/PR+ HER- stage 4 Mets to bones, lungs, lymph nodes.

I have been on Ibrance & Letrozole and at first tumors shrunk and lately I’ve been stable.

[8576]

This definitely begs a second opinion. I think you are right. Oncologists can only prescribe what they have learned and what they are licenced to prescribe. Sometimes the answer is outside the box.

Cheers, June S.

[Jamie724]

My oncologist also wanted me to start chemo for 4 to 6 mos. I did seek a second opinion and a third. the second and third opinion oncologist disagreed with him and I'm continuing my treatment of flaslodex with ibrance . they were not concerned with the slight uptick and still believe it's manageable without chemotherapy . One doc also requested a per scan which he never did.. definitely seek a second opinion. Good luck.

[Tennisgirl1225]

I would seek a 2nd opinion as well. I am on Ibrance 125 mg and Letrozole after being diagnosed in January with Mets to bones, liver and eye. This is a reoccurrence from Stage 1 BC ER PR + HEr 2- from 7 yrs ago. I just had my 2nd set of scans and things are stable with one area no longer visible. Not to mention, after 2 rounds of the above, the eye Met was gone. I didn’t mess around this time. I went to MD Anderson in March for a 2nd opinion and the docs concurred with the Milwaukee docs protocol. I also do monthly bone strengthening infusions. I am praying these meds keep working. So far no side effects. God is good!! Get the 2nd opinion!!

[24681 in reply to Tennisgirl1225]

Hi I was wondering if you go to froedtert in Milwaukee? I see Dr Chang, I’ve often thought about going to MD Anderson for second opinion. I’m on ibrance and faslodex.

[Tennisgirl1225 in reply to 24681]

I am at Froedtert. I see Dr. Chaudhary. My appt day is every 4 th Monday, where I sit and wait in that crazy busy lab, then I see Dr. Chaudhary and then the Day Hospital for my Zometa infusion. I knew this time I needed a 2nd opinion and I didn’t want to wait 1 year and then go. I’m really glad I went. MD Anderson makes it a relatively easy process. How long have you been on Ibrance?

[24681 in reply to Tennisgirl1225]

Hi, I’ve been on ibrance and faslodex injections since may of 2020. I have mets in the supraclavicular node and other neck nodes. I currently have 2 remaining, one quite large. I rarely read about anyone with metastasis in that area, I originally had breast cancer stage 1 with no lymph node involvement, this was 2012, then I got this in may of 2020. Shocking, still trying to get over the shock.

[Tennisgirl1225 in reply to 24681]

I agree with the shock. If I think about it too much it is sooo upsetting. I just try to keep my head in a good place. It’s all about the mindset for me because physically I feel good. Sometimes I think how can I feel so good but be so sick? It’s hard to make sense of it. I see Dr. C next Monday and if my labs are good then I’ll start Round 8 of Ibrance and Letrozole and have the Zometa infusion. I’ll leave the Day Hospital bummed/sad/ thinking WTH…how did this happen again! I’ll pull it together like we all do and be grateful for ALL my blessings!! Take care!!

[Hidden]

Hi,I do not have liver mets but have one thought. I am seen by Nancy Lin at Dana Farber. I have mets to bones only. Since other mets are responding but liver mets are growing, maybe they should biopsy to ensure it’s still the same hormone positive her2 negative cancer? I know that if I ever develop liver mets they plan to biopsy for that very reason. Dr. Lin said that liver mets often present as Her2 positive. Given the fact they are enlarging making sure next treatment targets them would be prudent? These cancers can mutate that’s for sure. I hope you find an oncologist for a second opinion.

Best of luck, prayers and positive thoughts to you.

[hopenowandtomorrow in reply to Hidden]

I agree with @Shaesmon & I second the 2nd opinion approach!

❤️🙏❤️

[blms in reply to Hidden]

I can tell you the liver biopsy itself was easy, the recovery a bit odd and uncomfortable for a while. But, taxol has been great on a weekly b basis and I am glad I did get a port this time around.

[Hidden in reply to blms]

I am glad you are doing well on taxol! Was your liver biopsy at initial diagnosis of mets?

[blms in reply to Hidden]

No, in fall of 2017, I had pleural fluid and lining of my left lung. ?That basically went away then liver, lining of abdomen and some bone. Took Ibrance again for a few months and liver got really bad. Then gladly agreed to I taxol weekly and have had excellent results at shrinking the cancer in abdomen/liver but now bone seems worse. ?So, I do not know what is next. I also get xgeva shots monthly.

[mariootsi]

I think Beth would do well to get a second opinion.

[Gingerann1]

Sounds like your friend is close enough to the Cleveland Clinic for a second opinion. I went 3 hours away to Duke for a second opinion for many reasons and decided to make the switch to Duke for my care and it was the best decision. My Onc is heading several trials there and I have been asked to participate in one. The Cleveland Clinic is top notch and won’t leave any stone unturned. My best to you and your friend. She is blessed to have a caring friend like you!

[blms in reply to Gingerann1]

Which trial are you on, which meds?

[Djd60]

So sorry for the news of your friend diagnosis on her liver , I also have cancer in my lungs, liver and bones, so far mine are stable , going for another set of CT scans soon and I pray mine are still stable, it’s very scary this disease, tell her to stay positive, I was down once to 117 pounds now I’m weighing 163, had to switch my meds because the Pickray was making me too sick to handle and couldn’t eat and was sick daily, now I am on Ibrance pills , Fulvestrant and Xgeva injections, and I am Handel if these pretty good, I had chemo back in 2008 , my Oncologist didn’t think my body could handle it back when I was 117 pounds at 5’8 and I didn’t think I could either because I have been there before, now maybe I can but not sure either, maybe he can try the Ibrance, with Xgeva and Fulvestrant or the Letrozole pills, the Fulvestrant Injections don’t feel very good there a little painful and she’s tiny , but the Letrozole are pills, she can suggest this because there are other treatments , but I’m not a Doctor either, maybe get another opinion also before she starts chemo, look up online the nearest Cancer Treatment Hospitals, some might dvdn do a zoom call if she can forward all her medical records over and some of them can work with your local Oncologist, I went to the Mayo Clinic in Jacksonville a few hrs away for another opinion and they also do zoom calls and they work with my Oncologist if I contact them for there advice , good luck, stay positive, we are all family here and in this together, tell her to fight and fight hard , Prayers your way and to everyone here!

[Djd60 in reply to Djd60]

Sorry she’s already on Fulvestrant, so maybe suggest Ibrance pills, with Xgeva for the bones with the Fulvestrant treatments or Letrozole, there are other options my Oncologist has told me if mine stop working , but another opinion doesn’t hurt, good luck!

[ChrisVict]

Hi, you should get a second opinion and go to a research cancer center hospital Cleveland clinic maybe your closest. It appears that your friend is resistant to Verzenio and Ibrance type of drug it maybe that she could get sometime out of Ibrance but if the liver is effected the onc may not want to experiment this is where second opinion is critical. I have livers mets and Xeloda keeps it in check for now. Oral chemo.

[Pbsoup]

Also she should consider getting genomic testing to see if she has any mutations and what drugs may/may not work. Mine was a blood test I didn’t need a biopsy. Although the idea that the liver met might have a different er status is interesting.

And I agree Cleveland Clinic would be well worth the drive. Or Chicago but I’m not sure what is the bear cancer center there.

[bubblystream]

My oncologist is phenomenal. I have breast cancer extensive in my bones. Its been stable for 5 yr. this past March it moved to my liver. I am now on immunotherapy with faslodex. It is slowly stopping the growth. My oncologist talks about chemo as a last resort. She should find a specialist in Indiana’s highest ranking hospital. They have access to latest treatments. I am with dr at university of Nebraska Med Center. They are best in our state. Your friend is only 57. She needs the best. And her cancer type is considered easy to control. I have not had any chemo yet this past 5.5 years.

[blms in reply to bubblystream]

Do you have any bone mets in you vertebra?

[bubblystream in reply to blms]

I have it extensibly through out my bones. I am sure it includes my vertebrae.

[USIrishcolleen]

Hello Adele_Julia,

I am sorry that your friend, is in a, not so great situation. I do not know if she is able to have an Oncotype test on her tumor? Oncotype testing will determine if her cancer will benefit from IV chemo, or if the risks will outweigh the benefits. I was petrified of IV chemo, and learned through an Oncotype test, that I was not a candidate for IV chemo. Maybe THIS is an option for you friend.(?)

Tell her that there is always another treatment, and tgat she is not alone here.

Sincerely,

Colleen

[IzzyZorro]

I have a terrific naturopathic oncologist, dr. Daniel Rubin here in Flagstaff, Arizona with Aspen Integrative medicine. He does zoom appointments. I can’t recommend him highly enough for that second opinion. He is also a medical doctor and really knows both sides of the aisle. I think it’s wonderful that you are trying to help your friend!

[Adele_Julia in reply to IzzyZorro]

Thank you so much for your post !!! I have passed this on to Beth. Ironically, I live in Scottsdale, AZ. In my personal case, I am on Ibrance and Faslodex and also subscribed to CoC careoncology.com. I might just reach out to Dr. Daniel Rubin myself ! xoxo Julia

[IzzyZorro in reply to Adele_Julia]

Dr. Rubin actually lives in Scottsdale!

[Adele_Julia in reply to IzzyZorro]

Holy cow ! Praise be !!!

[Iwasborntodothis in reply to Adele_Julia]

Me too

[blms in reply to IzzyZorro]

Wait!! i am looking for just that on zoom!! Do you have any contact info for me?Bonnie

[IzzyZorro in reply to blms]

aspenmedcenter.com

Dr. Daniel Rubin

[blms in reply to IzzyZorro]

Thanks I’m an idiot, of course I could have and did look it up after I saw your post! I filled out a request form! What positive things has he suggested for your situation?

[IzzyZorro in reply to blms]

He’s just a really smart and really positive guy. I am very lucky to have found him and Flagstaff!

[blms]

Julia, so kind of you to reach out for her. You know how difficult this is for us at all different stages.When my mets spread to my liver, I still took Ibrance and faslodex but my onco wanted me on Verzenio. I protested for about 2 months until I saw the new scan, at the time, and knew it was time to go IV on taxol As much as I said I was not going to go that route, when I saw the scan with my own eyes, I knew I had no choice. Now, with that said, I have liked IV taxol sooooo much better than Ibrance, Faslodex. I felt much better and only felt tired the day of the infusion mainly from the Benadryl. Then the rest of the week felt normal and did whatever I wanted. So, surprise!! Did not expect that! AND not all cancer centers believe that PET scans are the way to go and many say there are too many false positives. So, don't be too hard on her on that front. And, I totally agree about Big Pharma, hospitals, doctors, etc. But, here we are between a rock and a hard place!

Bonnie

[andra21]

Hello group, my mom is in the same situatioan and seeking for a second opinion on her liver mets. Anyone with a positive and life longing tratament and response? Greetings for all.