If Ibrance failed for you, what was next in line?
Comments
-
Looks like it will be Piqray for me. I have the mutation.
bootsie7...I hope someone can help you with your question soon. Bestbird has a lot of knowledge.
0 -
Abraxane quit working too, so now I am on #6, Doxil. Fingers crossed it works.
0 -
Well, the SBRT did shrink the tumor but at my next scans I have a number of new mets so we are moving to Afinator and Aromasin (Exemestane). Starting Aromasin today...still waiting for my insurance to pre-aprove the Afinitor.
Very sad to be moving on from Ibrance/Faslodex as it was very tolerable but I guess that is what we do!
I did see an intersesting article on samuraciclib (CT-7001), an oral and first-in-class inhibitor of CDK7. Asking my Onc to look into it as a possible next step. https://www.biospace.com/article/releases/carrick-therapeutics-presents-encouraging-initial-efficacy-for-samuraciclib-ct-7001-in-combination-with-fulvestrant-in-advanced-hr-her2-breast-cancer-patients-at-esmo-congress-2021/
0 -
perky - I was also taken off of Ibrance/Arimidex after 1 year, because it metastisized. Now on Exemestane/Everolimus (Afinitor), initially 10 mg now 7.5 because of mouth sores. Now getting scalp sores after 3 months. Mouth sores have not been an issue (yet??) on the lower dose, and there is a mouth rinse for it. I will ask again what to do about the scalp sores. Exemestane making hands stiff. CT on Friday, that should help determine if the Exemestane/Everolimus is doing anything. Went to an out of state clinic to explore clinical trials, but it sounds as if Exemestane/Everolimus are "working" that I would not be elligible.
0 -
Perky, Of course a clinical trial with a SERD, SERCA or ARV-471 is another way to try to extend the endocrine therapy, some of those trials have combinations with Ibrance or Verzenio as well.
0 -
BlueGirlRed - Ouch, scalp sores! I asked my Onc about the mouth wash and she said when patients put the pill in cheese, she has seen this can eliminate the mouth sores. Hope your Onc has some ideas for the scalp sores or maybe someone here does? I understand acupuncture can help with joint stiffness from AIs? Yes totally agree, if a treatment is working and QOL is acceptable, makes sense to not change.
Cure-ious - will look to see what I can find for trials with SERD, SERCA or ARV-471. Just want to be prepared should Afinitor not work for me. Seems like a trial to extend the endocrine therapy would be better before moving to Chemo. Thank you!
0 -
Perky2020- the mouth sores is not from contact with your mouth and the pills-it is a pathway of the meds issue. See Hope Rugo study from UCSF. You need the mouthwash for the first 8 weeks.
0 -
Perky - a lower dose of everolimus might help with mouth sores as well. Initially I was on 10mg. I had a "break" during radiation, mouth and scalp sores disappeared. I'm now on 7.5 mg. No mouth sores so far (3 months), but scalp sores bad.
0 -
Hello beautiful people
I found this site such a great source of strength when I was first diagnosed de novo with lung Mets (heavily ER/PR positive) in October 2016 at age 43. My 3 kids were aged 4, 9 and 13.
Cure-ious, Sadiesservant, Shetland Pony and dear Zarovka, just to name a few, were so kind and giving of their considerable knowledge and compassion. We all rocked Z’s Stage V fitness. It’s so great to see so many of you still here and kicking butt. I hope Z is doing well too.
My handle name was MSL (Many years; skies the limit; live well). I’ve now added a B for be brave.
I’ve had a terrific run on ribboclib/letrozole for the past 5 years. Felt fit and well, lived my life fully, raising my gorgeous kids. I’m beyond grateful for this time. I remember praying if I just could just get 5 years that would help so much get my kids that bit older. And so I take great comfort in that.
Unfortunately, however, I’ve discovered today that what I thought was a sore knee from running is bone Mets in my femur. While you can never be truly shocked with this thing we’ve all been burdened with, I’m pretty surprised it’s shown up in my leg while my lungs feel fine.I’ll be doing the full analysis over the next few days, but my doctor is positive that there’s lots of options to try, especially given I went so long on the first line of treatment. He said our aim is to get your next line go for years too!
I’d really appreciate your thoughts/expertise/hope as I begin this next chapter. While I’m a lot older, wiser and tougher than when I was first hit in the face with the de novo diagnosis, it feels a little bit like that first time, not knowing what treatment or where you are going.
Thanking you allBest, MSLB
0 -
BlueGirl - Thank you! I almost feel silly now wrapping the pill in cheese! WIll check back for the mouthwash!
MSLB - Sorry you are back! Me too! Congratulations on the long run! Hopefully your onc is right and it means a long run on the next treatment. BestBird's guide to metastatic BC is an awesome resource. See her post earlier in this thread. Best of luck! Would love to hear what you decide as next steps.
0 -
MSLB Hi, how awesome to hear you are living the good life!!! I made it around 5.5 years and in March moved off of Ibrance-Femara and onto Ibrance-Faslodex. Much less joint pain and my horrible GERDs went away, also I can eat so much more?! I think its going well, first scan since this change will be in Nov-Dec timeframe. Upon further progression, I hope to be able to move to an ARV-471 (or SERDs/SERCA) trial with Ibrance (or another CDK4,6i) in order to eke out as much endocrine therapy as possible...
0 -
Hi Cure-ious,
I progressed on abemaciclib /Faslodex after 2.5 years and am now on Xeloda. Is there any evidence that trying Ribociclib or Palbociclib would work following progression on Abemaciclib?
I’m in the UK and only get one shot at a CDK4/6 on the NHS but I would consider paying privately if there can be success in trying another one.
Would appreciate your thoughts on this.
Love Debs
0 -
Debs,
Well, for one thing the CDK4,6 inhibitor synergizes with anti-estrogens, but not with chemo, so there would be no point to add Ibrance right now. However, it would be helpful to know why you got progression, especially if the cancer developed either 1) an ESR1 (estrogen receptor) mutation, in which case you could move onto lasofoxifene or a SERD, (either of which would restore the estrogen-dependent growth of the tumor) together with Ibrance, or 2) Her2 mutation or expression, which leads to a Her2-low subtype that is responsive to Neratinib with a CDK4,6 inhibitor and also to Enhertu (ADC-type chemo). They do Foundation One testing of the cancer after progression to check for ESR1 mutation, and I'm not sure how they do the tests for Her2. Cancer can also have DNA repair defects, which indicate a PARP inhibitor may be useful, and that can be given in combination with immunotherapy or chemotherapy- how much do you know about possible mutations in the cancer?
0 -
Cure-ious,
Thank you for your reply, I really appreciate it.
In the UK we only have the test for Brac1/2 for which I’m negative.
I believe I could pay private for either foundation 1 or Guardant 360 test. Do you know which one is the better test?
So I understand that if I am considering paying at great expense for access to private treatment, then I should find out first what mutations I have rather than randomly selecting a treatment.
It’s very frustrating over here we seem so far behind in treatments and trials compared to the USA.
My primary was 1999 then MBC to bones 2014. I had Exemestane only for 3.5 years then liver mets appeared. I was then on Verzinio/ Faslodex for nearly 3 years then progression in liver so now Xeloda.
I’m highly ER + but PR and HER - I had a liver biopsy to determine this.
I wanted to try evorilimus but it’s given with Exemestane and as I had already had that, It was refused.
I’m unable to get Ibrance or Kisqali as I already had Verzinio.
Piqray isn’t available here yet.
I’ve not heard of lasofoxifene.
As with most of us, I want to try to delay IV chemo for as long as possible.
I wonder if Letrezole as a monotherapy could still work? Or Giredestrant?
I would appreciate your opinion.
With Love
Debs xx
0 -
Hi Debs, I don't know about the different tests, but I had Foundation One. You would want to wait until the next progression to do the test. Hard as it is to navigate all of this, I can't imagine how difficult it would be to deal with the additional restrictions you have there, but this may ease up as a lot of drugs are being pushed.
You are obviously doing extremely well to be seven (7) years out!!! Xeloda seems like a good choice, mix it up and show the cancer something completely differently after all these years. And you might be in that category of people respond fairly well to all of the therapies they get.
Assuming it works, it might be time to circle back to endocrine therapy afterwards, preferably to a SERD, like Giredestrant or a clinical trial with something like ARV-471 or OP-1250, possibly in combination with everolimus or a CDK4,6 inhibitor. The SERDs are working particularly well on people who responded well to endocrine therapy in firstline, they are strong enough to overcome a lot of the endocrine resistance, esp if there have not been too many chemos in-between (altho many of the trials require that you have had at least one chemo in the MBC setting, that may change as they vie for 2nd-3rdline position). There will be a lot more information at the San Antonio meeting in mid-December.
The ADC-chemos (like Trodelvy or Enhertu) also have been having remarkable PFS in trials where patients had many lines and multiple chemos. It would be good to have that in the line-up too, maybe after you try endocrine-therapy again. Hopefully these treatments get approved and the options pile up while you are still on Xeloda!!!
0 -
Dear Cure-ious,
Bless you for a lovely informed reply. I will digest what you have said and make notes. It’s always good to have a future plan in place.
I have hope that more options will be there for all of us in the near future
Love Debs
0 -
Hi everyone. I moved on from Piqray after 3 months due to progression. I didn’t tolerate it well anyway. So now I am on Abraxane. I’m on my second cycle as of today
0 -
- I was on the same for 4 years, faslodex, ibrance and xgeva. Slight progression and now I am on piqray with faslodex for almost two years. Clear scans and doing great. I am at the 15 year mark.
0 -
Janice54....15 years! Woot! So love to hear this!!!
0 -
BlueGirlRed wondering what out of state trial clinic you went to exploring trials? I went to SCCA, a local NCI hospital asking about trials and she really only talked about the ones they have there. Thinking when it come time, it would be good to know about the ones that would best fit rather than just the closest.
0 -
@perky2020- i'm going through same thing now. I have progression in nodes between lungs and they don't want to give me more rads for danger to lungs. They would rather wait to keep it for palliative care. I don't have access to proton therapy in canada which I think would be possible to get since the dose wouldn't be as high and damaging to my lungs. This would be 3rd time of radiation. What ended up happening in your situation?
I'm progressing on Ibrance/Letrozole after 5 years. SInce radiation is not a go, onc will probably put me on Faslodex without Ibrance or Xeloda. Why would he do put me on Faslodex without Ibrance?
@Bestbird: thank you so much for all that info. Will have to get this book.
Hoping you are all doing well, giving me hope. DD
0 -
I was on Ibrance 125 for one cycle, and Ibrance 100 for three cycles. A recent CT scan showed some progression, so on Dec. 6 I'm starting a combo of IV Trastuzumab (Kanjinti, a biosimilar to Herceptin), Tucatinib (Tukysa), and Capecitabine (Xeloda). The Caris report showed that I am AR (androgen receptor) positive, which I think means I am now HER2 +. Which would explain the reason for the switch. I'm still trying to figure it out. I'm concerned about all the side effects of the new combo. But, hopefully I can deal with the SE's and it works to stop progression.
0 -
dancing, you can try Ibrance-Faslodex..
0 -
Dancing - yes, seems like ibrance-faslodex would be your next move. Not sure why he would not include Ibrance? Maybe a second opinion if he doesn't agree?
I did radiation for the first progression on IF because there were only 2small sites of new mets and it worked for a year! Then tried again but at the next scans I had a number of new mets so moved to AA.
0 -
Do you have the genetic mutation? PIKCA?
0 -
2 years on Ibrance, now Piqray and Falsodex.
0 -
I was on Ibrance for 2 years, because of my PIKCA mutation I have been on Piqray and Falsodex for 5 months. No side effects although with an increase in dose my tumor markers increased. I started at 200. Cytolysis?
0 -
So, I started with Kisqali, liver enzymes went crazy, went to Ibrance and the same liver issues. Did 4 mos of Gmezar/Carbo and that was getting the tumor markers down until they went up again. So now I am on Everolimus and Aromasin, been on it for 5 days. I woke up with many small, red bumps on my face that are filled with liquid. And mouth sores. Thoughts????? I don't need bumps on my face with everything else going on!
Linda
0 -
LindaSue - so sorry for the reactions you are getting to the treatments. There is an Aromason/everolimus group chat where you can get insight.
https://community.breastcancer.org/forum/8/topics/...
There is a mouthwash, Dexamethasone you can use for the mouth sores. You oncologist can prescribe it. I got mouth sores and within 3 days after using the mouthwash, they were gone. I now eat Greek yogurt, use L-Glutamine and use the mouth wash as needed.
Not sure on the bumps on your face but would be a good question for the group and your Oncologist and naturopath if you are seeing one.
Hugs!!!
0 -
perky2020...thank you so much for your reply! Huge hugs to you as well
0
