Looking for options after Verzenio. - SHARE Metastatic ...

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Looking for options after Verzenio.

Nocillo profile image
17 Replies

Spoke with my onc today and she said if Verzenio fails she’s thinking about Afinitor. Said I’m running out of options and IV chemo might not be far off after that. I’ve been on Faslodex, Anastrozole, Ibrance and Verzenio is my 3rd line of treatment. No mutations. I feel like there are many more options out there than just Afinitor. I know many of you are taking different things. What are some of your medications? I’m ER positive, Her2 neg, If I remember correctly, been a while since I looked at my records. Mets to bones(ductal) and lobular in stomach lining is controlled for the moment. Thanks!

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Nocillo
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awesome4ever profile image
awesome4ever

Hi Nocillo. I'm currently on my 2nd line of treatment which is Everolimus(Afinitor) which is a mTOR inhibitor and Exemestane(AI). I've been on it for just over a year with currently no side effects. I was fortunate to have gotten 5 years from Ibrance and Femara as in Canada we can only access one CDK4/6 inhibitors so Verzenio wasn't an option for me once Ibrance failed. I'm Canadian so don't have as much available to me as you do living in the USA. However I know after this treatment fails my only other oral option will be Xeloda(Capecitabine). That certainly will be available to you as well before IV chemotherapy. Looking back in a previous post you mentioned the Guardant blood test. If you had that done it would have tested you for mutations which certainly could guide your options.

Many new oral drugs require you to have tested positive for certain mutations...Orserdu (ESR1 mutation), Capivasertib(Truqap) is for HR+/HER2- metastatic breast cancer with abnormal PIK3CA, AKT1, and/or PTEN genes following progression on or after hormone therapy . Piqray (Alpelisib) which is given to people who have PI3K mutation.

Olaparib and Talazoparib can be used to treat advanced or metastatic, HER2-negative breast cancer in women with a BRCA mutation who have already had chemotherapy. If the cancer is hormone receptor-positive, Olaparib can also be used in women who have already received hormone therapy.

Sacituzumab govitecan (Trodelvy) is an antibody-drug conjugate (ADC) is a monoclonal antibody joined to a chemotherapy drug. It is infusion. This ADC can be used to treat advanced hormone receptor-positive, HER2-negative breast cancer, in people who have already received hormone therapy and at least 2 chemo regimens. Something to keep in mind for down the road.

If you are HER2 + there are many new great drugs...most infusion immunotherapy options.

I wish you luck with whatever is your next treatment. I know it is very scary as our options get slimmer but I always keep in the back of my mind how fortunate we are to have MBC now rather than even 10 years ago when it basically would have been a sure death sentence. Take care and I hope this was somewhat helpful.

* Edited to say I'm sorry I missed the part where you said you have no mutations. I'll keep the post up in case it's of benefit to someone else. Unfortunately the future of development in new cancer drugs is specific gene mutation targeted. Very few generalist drugs are being studied.

Nocillo profile image
Nocillo in reply to awesome4ever

Thank you for such detailed information! I am not medically inclined at all. I truly appreciate it! ❤️

awesome4ever profile image
awesome4ever in reply to Nocillo

You are very welcome. I do have a medical background and stay on top of everything. Please know that if there is ever a question that you don't understand I would be happy to help if I can. First and foremost I am a patient fighting MBC for 6 years now and therefore it's important to me to stay informed. I am blessed to have a fabulous oncologist in my corner. Please let us know when and if you start your new treatment line. If it's Afinitor I highly recommend buying empty gelatin capsules from Amazon to put your tablet in to avoid the potential issue of mouth sores that can common with this drug. Take care.

Nocillo profile image
Nocillo in reply to awesome4ever

Thank you so very much! Very kind of you! Good luck to you too!

irisF profile image
irisF in reply to awesome4ever

Merci beaucoup pour ce conseil, car je suis concernée par ce problème qui peu vite devenir très désagréable. Une autre patiente conseille aussi d'enrober le médicament dans de la crème chantilly. Certaines l'ont essayé avec succès.

awesome4ever profile image
awesome4ever in reply to irisF

You are welcome. I have heard about the whipping cream trick too, also apparently putting it in the small marshmallows. I'm not a fan of marshmallows and I'm too big a fan of whipping cream😁 so went with the less caloric option and it works beautifully.

Tantalon7211 profile image
Tantalon7211 in reply to awesome4ever

thank you for that info/ it helped a lot

I am also in Canada, and have just recently had bone met progression shoe in a bone scan- in skill and spine- I am on anastrozole and Ibrance again/ as I was off it for awhile- and hope this will shrink and help me like it did you for 5 years-

I didn’t realize that in Canada we are limited to only one cdk 4/6 line of treatment compared to the USA

Did you have much side effects on Ibrance and anastronzole during the 5 years ? Were your scans stable

I will be on Ibrance .75 3 weeks ok and one week off - and fatigue and bone pain are troublesome - hoping things subside in time.

She said next line of treatment would be tamoxifen - did that work for you

It aphids like we have limited options for treatments in Canada compared to the US or the UK

Thanks so much appreciate the feedback

awesome4ever profile image
awesome4ever in reply to Tantalon7211

Hi Tantalon. I think the limited to one of the 3 CDK inhibitors is all across Canada but the one difference is your age you are entitled to seniors benefits which may differ from what I have as I just turned 60. However there is no real clinical trial evidence to support using different CDK inhibitors when one fails so I'm sure that's why they won't support it.

Yes I was very fortunate to be on Ibrance 125mg for 5 years with really no side effects. I truly wish I could have stayed on it forever but unfortunately that's not how MBC or cancer in general works. The cancer is smart and will always find a way to get around the drug. Hence the reason we change treatments. I have never taken Tamoxifen and it likely will never be ordered for me. I was diagnosed De Novo in May 2018 so no prior history of cancer. Over the 5 year period on Ibrance/Femara my scans were every 3 months and always stable until February 2023 last year when it showed progression over the 30% threshold . To note I have had extensive bone mets to just about every bone in my skeletal system since first diagnosed. They remain constant...just vary from being active(lytic) or sclerotic(healing) and the sites change with each set of scans.

We definitely have more limited options than our fellow USA ladies who are fortunate to have good insurance coverage. The UK ladies are similar to us with limited options as they also have a Government funded healthcare.

Since you now have spread to bones have you been started on a bone strengthening drug such as Zometa or Xgeva? If not I would definitely ask about it with your oncology team. Take care.

Tantalon7211 profile image
Tantalon7211 in reply to awesome4ever

Thank you for your reply. And you mentioned the bone mets that you have- on your skeletal system- did the ibrance help keep those in check- they have mentioned getting injections for my bones now- after I finish dental work. So perhaps that helps -

You’re very lucky you could use Ibrance at .125 dose- I am on .75 with anastrozole - lots of fatigue and joint pain

What was your progression why you had to come off? Did you get bone scans as well- I was getting just CT scans that were stable- and they had a bone scan that showed couple small bone Mets- apparently sometimes can be mistaken for arthritis

Are you in chemo now- that would be next step after tamoxifen - if we can get several years on one med that is a blessing- women are living many years now- I guess in the US if you have private insurance there is more available options.

Merma profile image
Merma

Have you checked the clinical trials?

pfizer.com/news/announcemen...

My bc doctor is very excited about it. It will be available for you earlier than for me.

Fun2garden profile image
Fun2garden in reply to Merma

Thank you so much for this information! I too am worried about coming to the end of the line with treatment options so this has filled me with increased hope. This site always offers a boost to my spirits

irisF profile image
irisF

Pour ma part, j'ai reçu anastrozole en premier, il a fait son travail pendant 5 ans, à la 6eme année j'ai fait une rechute osseuse, j'ai reçu verzenios qui pour moi fut une véritable horreur il était accompagné de faslodex que j'ai eu pendant 7 mois, deux mois après son arrêt je subis toujours les effets secondaires, une injection maladroite m'a enflammé le nerf crural, c'est extrêmement douloureux. Le traitement a fait partiellement son travail mais pas suffisamment. Ma nouvelle oncologue m'a placé sous afinitor et exemestane, j'en suis à deux mois et demi de traitement pour le moment il est bien supporté. La prise de sang est impeccable. Mais vous savez ces traitements n'ont rien d'originaux, les médecins doivent suivre des protocoles imposés partout dans le monde nous recevons les mêmes choses. Dans un ordre ou un autre, certains sont plus efficaces que d'autres. On a parfois l'impression qu'il y a beaucoup de tâtonnements. En ce qui me concerne j'ai vraiment mieux supporté la chimio EC 100 et le taxol que les autres médicaments qui se prennent au long cours avec leur cortège d'effets secondaires. Mais il est vrai que chacune d'entre nous est unique. Courage pour la suite

Kerryd22 profile image
Kerryd22 in reply to irisF

I had paclitaxol as the second line and I found it had far less side effects than the next drug did. Except for the hair loss that is! But hair thinning seems to go with the territory.

Nocillo profile image
Nocillo in reply to Kerryd22

Thank you!

mackster profile image
mackster

I was told there were lots of options, but it seems not that many in the UK. I'm stable thankfully on Ibrance and Fulvestrant. When I enquired about next option I was advised it would be E&E, so next stop after that chemo meds. It seems mutation targeting is the way things are going, but we are not offered these tests here. I could get a private biopsy possibly. However I was told that as already on Fulvestrant I would not have access to Alpisiplib (?). I'm ER+, PR-, HER2-0. Thanks for posting. The advice and information is really appreciated. Good luck with your ongoing treatment.

CTGirl1962 profile image
CTGirl1962

Those of us with no mutations are definitely limited. I would ask to go on each CDK 4/6 inhibitor and any other med before being put on any kind of chemo. Good luck with your next treatment and don’t give up hope!!! There’s always something out there !!! 🙏🏻🙏🏻🙏🏻

LDR1 profile image
LDR1

Xeloda could be an option for you …

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