treatment path after Ibrance U.K.

[TE53_67]

I am under GSTT in London and on Ibrance and Letrozole currently. I wanted to see with ER and PR positive and Her- what treatment paths had been offered to the community after Ibrance. Xx

[Autum1]

Hi. I'm in the UK. Was on Ibrance and Letrozole since diagnosis they stopped working after 14 months. Due to rapidly increasing liver mets I was told my only option was IV chemo. I'm now on weekly Taxol which I started 4 weeks ago. So far it's not been as bad as I thought. I'm also ER/PR positive her2 negative.

[kiwi67]

Hi. I'm from New Zealand. I am ER and PR positive HER2 low. I have been on treatment with Ibrance and Fulvestrant for about a year but 3 weeks ago my scan showed liver mets increasing so I'm being changed to Capecitabine, an oral chemo. Just waiting for blood test results for special enzyme test. After Cape. I will be offered "vanilla bean" ( that's what we call it because its name is way toooooooooooooo tricky) it is also another oral chemo. After that a good drug for HER2 is Enhertu (its IV) but its not funded yet in NZ and would cost me $150,000. I'm hopeful that by the time I need that it will be funded. This nightmare is a roller coaster of shitte, we just have to go with. I hope your next treatment is very good at holding your mets at bay, all the best. Susan

[Bella_mum in reply to kiwi67]

Hi Susan,

I’m in Canada - got 4 years on Ibrance and Lettozole but spread to my liver prompted a change. I too want the Enhertu but it’s not cleared here yet so not funded. I’ve switched to Everolimus and Exemestane so we’ll see how that goes, Cape might be an option next if the new drug still isnt available.

Good luck!

[POT2018ery]

I am treated with Ibrance 125 and faslodex. I have no real side effects. I’ve been doing this for 6 years. Don’t give. Up

[HelenWi]

There are multiple targeted therapies available after Ibrance and before chemo, provided you have specific mutations. So after progression, it’s useful to do a genetic blood test such as Guardant to determine if you have mutations such as pik3ca, akt1, Pten, esr1, etc.

best,

Helen

[Praising in reply to HelenWi]

I just had this test today. Have you? I have multiple new sites in my spine and iliac bone. Have been on fluveserant and Ibrance for only 6 months. Now what? I don’t want to do a clinical trial at this point. No organs involved. I’m so shocked.

[HelenWi in reply to Praising]

Which test are you referring to? 😊

[Praising in reply to HelenWi]

The guardant test for mutations

[Praising in reply to HelenWi]

which drug are you on?

[HelenWi in reply to Praising]

I’ve had Guardant test twice and I will take it again if there is progression. They showed a couple mutations that can indicate new therapies. We were looking for ESR1 mutation which means one can take Elacestrant, but so far it hasn’t happened. I’m currently on Piqray + Faslodex for a year and a half. I couldn’t continue to take Ibrance because I got pneumonitis; that was a bummer but there are other paths forward.

One of the targeted therapies on my list is Truqap. I also have mutations in the her2 gene (but still her2 negative) There are a couple drugs that may be possible for that.

I also got second opinion from a large cancer center (has research and trials). They are more on top of latest drugs than my onco even though he is very good and creative.

My markers are all over the place but scans are stable. I’m going in today for Faslodex injection and monthly blood test results; last time the numbers jumped so I’m wondering what will happen today. .. getting used to the Russian roulette🤣

[Beryl71]

I managed to stay on ibrance but changed letrozole to fulvestrant and that has worked for me. Good luck!

[Lilywallytootsie]

Great question. I have been on Ibrance/Letrozole for a little over seven years and have been curious about that too. Guess we have to wait until it happens and be tested before a decision can be made. Hope all goes well for you. Blessings, Hannah

[Praising in reply to Lilywallytootsie]

So happy for you. I was hoping for more than 6 mo on Ibrance. Always 1.00 for neutrophils.

[TE53_67]

ditto ❤️

I’ve been on Ibrance for 6 years. I will ask at my next appointment though

[Iwasborntodothis]

My path after Ibrance was:

Faslodex - 8 weeks

Capcetibine/Xeloda (pill) - 12 months

Taxol (IV) - 12 months

Carboplatin (IV) - 8 weeks

Trodelvy (IV) - 14 months

[TE53_67 in reply to Iwasborntodothis]

Sorry meant to reply here !

Wow

Are you also er and or positive and hers negative ?xx

[Iwasborntodothis in reply to TE53_67]

yes

[Hopeful4Cure]

I would like to emphasize how important it is to have the molecular testing for mutations, sooner, rather than later. Europe is pretty much on the same path for treatment as the US, except for the UK. I state this because many on this site are just put on taxol after one or two prior HT treatments. I was DX with estrogen/progesterone + her2 low. After my lumpectomy, I had rads and chemo taxol. Then anastrozole. 2019 mets stage 4. Ibrance/fasoldex. 2022, I should have been tested for mutations. Instead, Dr. Nonsense, insisted I was resistant to HT. I asked to be tested. He did test me for the pk mutation, only because he wanted to put me in a trial. At that time my 15-3, was only 70. I was put on xeloda, vinorelbin, enhertu and eribulin. Jan 2024 he wanted to put me on a combo of two really bad iv chemo treatments. I had enough and got a second opinion. Got the biopsy done and I gave NO mutations and although her2 is low, it showed no amplifacation. Hence, not resistant to HT either. My tm's were nearly 5k. I was placed on everolimus and exemestane on Feb 14. All my pet scans prior (6) all showed progression. June scan stated practically entire spine, ribs, hips, pelvis and both femurs partial response. No new bone lesions. Amen. Current treatment is a challenge, but I will put up with my finger nails, fatigue and bone pain to try to get markers to the norm. Iwasborntodothis and Kerryd are my hero's. I indeed have faith. We have got to be proactive for ourselves. Do your research and do not be hesitant to ask questions. Blessings.

[Praising in reply to Hopeful4Cure]

Did you have the pk mutation? Did they do trial? I was presented with that idea. I don’t want that. What do you do for pain?

[Hopeful4Cure in reply to Praising]

The dr checked to see if I had the mutation, which I did not. Probably because if I had, the trial would be out. My point to this, is that my tm was only at 70. I refused the trial. I should have continued on HT's, instead of going on chemo pills and iv for 2 years. Super important to have the test done sooner for mutations, than later. I use patches that I get at walgreens when I am home and also use essential oils. Rarely use ibuprofen.

[Flower1513 in reply to Hopeful4Cure]

What exactly kind of test do you ask for? Do you know why they don’t automatically do this anyway? Is it money / insurance?

[Hopeful4Cure in reply to Flower1513]

Perhaps it depends where you live. However, it is recognized as standard protocol.

[Flower1513 in reply to Hopeful4Cure]

Ok thank you! Maybe they have did it? Just checking for my mom. She was on ibrance and femara for 2 years 9 months. After that they tried only one HT and straight to xeloda . Which she has currently been on for almost 8 months. They did send the fluid off from her lungs but I’m not sure what all that checks for . Thanks so much!

[mackster]

I'm in the UK. On Ibrance & Fulvestrant for 18 months. ER+,PR-, HER2-0. I asked about treatment plan, not sure there was one. I was eventually advised Everolimus & Exemestan would be next. I have read Everolimus can be challenging to put it mildly. I did not respond to Letrozole & Exemestan is also an AI, so not confident about that. The NHS is not proactive about gene mutation testing unfortunately. Also I believe hormone status should be checked if there's progression. I live in a rural area. I wonder if the larger centres would treat any differently. Best wishes ongoing.

[TE53_67]

thanks for your reply. I am going to ask more questions when I speak with them . I’ll let you know what they say x