hi there
I have just finished 2 years on piqray plus Fulvestrant injections which were not easy, starting with severe rash and ending with osteonecrosis of the jaw plus never ending diarrhoea in between! So quite glad to be leaving it behind but the question is what to go onto next? Due to progression bone mets and possible liver involvement I need a change. Oncologist is recommending Capeciabine plus tamoxifen
Anyone else have knowledge on this and are there alternatives out there?
Many thanks
capecitabine I meant!
Sounds like you have the Pik3Ca mutation.. so yes there is a new option after Piqray. Cap is a systemic treatment not targeted do your doc should know best. But here’s the link to the new med
healthunlocked.com/share-me...
I hope this is helpful! Best wishes 🙏🏻🙏🏻
Many thanks and yes I do have Pik3 mutation 🙏
My Wife, who has Met Breast Cancer that has spread to the Bones and Liver, who also has the Pik3 mutation was first placed on Ibrance, then Truqap ( truqap was $22,000 per month, but AZ&ME covered it for as long as she was on it ) we had mixed results over as to Pet Scan findings each 3 months, so Her Truqap was ended and Xeloda started, which is very low cost and a $15 co pay each month. She is on 3000 mg a day for 14 days, then off 7 days, then on again for another 14 days. her CA 27 29 markers went down quickly and her side effects are pretty much nothing when compared to the previous meds.
Thanks for info on Xeldo. That could be my next as Ibrance not working. My ca markers are 50. Almost normal but still progression. Please keep me posted on se of Xeldo.
We just saw our Oncologyist yesterday and the results of Xeloda as to 15-3 markers, my wife's markers went from 833, down 530 points to 303, this after just 2 cycles...so yes Xeloda is working and we get our next Pet Scan at Christmas time. We start our 3rd cycle today. Good luck and prayers to everybody!
I would also suggest Truqap as an alternative. I was also on Piqray and moved to Xeloda and Tukysa, the latter for brain Mets. I don’t know which one of those two is responsible but my bone Mets are disappearing and markers are way down. I think Xeloda is very effective but you also have the option of Truqap. Your onco might have an opinion on the sequence. Might want to breakup two Pic3ca drugs.
Hey there! I've been on Xeloda (Capecitabine) now for two years in January. I find it easy to tolerate and it has been very effective for me. I was not able to tolerate Piqray because the rash I got was from head to toe, including inside my mouth, eyes, under my nails......plus it caused a fever of 105 for me. Xeloda has been a Godsend......if that is where your road takes you, I hope it is as easy and effective for you as it has been for me. As always, if you like your doctor and trust your doctor, then your doctor is always your best ally and they will know what you should go on next. I did ask my doctor about keeping me on an AI while starting Xeloda and my doctor said no because she wanted the cancer cells super healthy and hungry. Xeloda kills fast replicating cells, so the healthier they are and faster they are trying to replicate, the more effective Xeloda is. That may be something to question your doctor on regarding the Tamoxifen. Changing meds and progression is scary and nerve wrecking......but there has been so much growth regarding treating breast cancer, I think the chances of longevity and quality of life are astounding. Best wishes, and I hope you do well with your new treatment!!
Thank you for your feedback which is incredibly helpful, yes it is scary changing drugs but hopefully I will tolerate it like you 🙏x
Very interesting about Xeloda and AI. My doctor kept me on Faslodex while switching to Xeloda So I will have to ask him about what you said. It makes sense to me.
It does make sense, but so much about breast cancer does not make sense. Plus we are all different. Just as you are doing, I think it’s smart to ask our doctors questions and at the same time keep with our doctor’s who know us best, advice. It can all get so confusing! If you do ask your doctor, please let us know your doctor’s responses if possible because I think the more we all know the better we are at asking the right questions and getting the best treatments.
I actually just found an article about a study on Xeloda plus Fulvestrant that yielded good results. Go figure.
Regarding asking questions.. I’m a very strong believer in second opinions…the drug combo I’m now taking which is working great was recommended by my second opinion breast onco; my onco didn’t agree but went along. Now he’s really happy. Breast oncologists at research centers have the benefit of much broader exposure to the latest information and research. It’s admittedly a bit hard to tell an onco that you love and who is really committed to your care that you want to follow someone else’s advice, but it’s your life. We need to think clearly and ask questions. Absolutely.
That’s very interesting and again very helpful, that would be my preferred route but of course we are all different so next couple of weeks will be interesting 🙏
Can I ask what protocol you’re currently on? It may be something to present to my doctor. I so very much agree with you, knowledge is power sometimes second opinions bring us more knowledge. I’m lucky that my doctor is always open to suggestions and new research. I’m always in search of new combos and things to change up my protocols for better results. As far as the AI with Xeloda, I’m going to ask my doctor a second time. Although, perhaps for me personally, I will be leaving that alone being that it has worked for two years so very well. Nonetheless, I’m still interested in seeing what my doctor’s response will be to the study, just for more knowledge and curiosity.
I have a relatively unique case. I’m HR+ and her2- but have two mutations in her2 gene. We recently found that I had brain Mets in addition to bone Mets (which have been stable on Piqray). So I’m taking Tukysa which is a her2 drug that penetrates the blood brain barrier and Xeloda. Because of the her2 mutations, it’s likely that Tukysa can target my cancer cells. Of course I don’t really know which drug is doing the heavy lifting ! So my protocol is not likely to be broadly applicable.
Thank you for sharing. I’m lobular hr+ and considered her2-, but my doctor has said that now they are reconsidering what is considered her2-, Last time I saw my doctor she said that she wanted to have my biopsies retained because even any stain whatsoever would be considered her2+ now and would change treatment protocol. I have a degree in microbiology so to find out that any stain whatsoever even minuscule, would have ever been considered a negative her2 result really confused me. Breast cancer itself and what science knows is confusing at best. Again, thank you for sharing your information with me. I write down everything I find out as a just in case for the future. Take good care, friend!
They used to consider anything below HER2 +3 negative. Then they started looking at +1 and +2, and created the new category of HER2 low. Turns out some of the meds that work on HER 2 positive work on HER 2 low, and there are even some that are especially effective for low.
Hi there
Yes currently on Piqray and Fulvestrant, which I was on for 2 years 1 month, Denosumab was stopped beginning of this yr because of the dental issues.
Everything has stopped for now as waiting for an MRI this week to get more information on what is happening in the liver.
I will update when I get more information
Hi Sweep16
Sorry to hear you've had a tough two years. I see you're in the UK - I am too. I don't think that Inavolisib is available here yet. I have fortunately accessed it on a trial which has just closed (it's looking at Inavo vs Piqray so I lucked out by getting the former which I am finding very tolerable, although it's early days). My oncologist has said that after this Capecitabine will most likely be next on the list and I know others who have moved on to Capecitabine directly after Palbociclib/Ribociclib (presumably because they don't have Pik3CA or in one case at least because she hasn't actually been tested for it) so it seems this is the usual route in the UK. I doubt it would be with Tamoxifen in my case as I was on that for 7 years between primary and secondary diagnosis. I've also taken Fulvestrant for 2.5 years - whilst on Ribociclib and now the Inavolisib, and also has Denosumab which presumably you've had too, given the osteonecrosis.
Hope this is helpful and good luck with whatever comes next. Many women seem to tolerate Capecitabine well and I have heard of people being on it for a good long while.
x
Many thanks for that, I will update this as it may help others. I’m also having blood profile done as that can change plus an updated genetic test as that was done back in 2006. All that should help with the next stage 🤞🏻
And yes I was having Denosumab injections which combined with piqray caused the jaw problems 😢
That's great that you're having those done. Good luck with it all.
Can I ask what your first symptoms were with the osteonecrosis? In the last week I have developed a sore slightly swollen patch on the gum line (less than a week after visiting the hygienist who said everything looked fine). My nurse thinks it's the Inavolisib but I'm wondering if it's more of a jaw problem.
I had a massive infection. Was given antibiotics and sent for a root canal. Root canal doc said she couldn't do anything because the teeth were already detached from the jaw. Actually, a piece of jaw was dead and detached from the rest of the jaw.
There is someone here who posted photos of what looked like a tooth protruding from the middle of the roof of her mouth.
Of course, you would want to stop it before it gets to that point. Can you quickly see a periodontist, someone who knows about ONJ? I stuck with a dental practice that was connected to the oncology practice. Cost more, but worth it.
Thanks for the reply Tammy. Sorry to hear you've been through this. I went to my dentist who checked and took x-ray and confirmed it is nothing more than a normal abscess - not cancer related. He said this occasionally happens after a hygienist appointment as some bacteria can get under the gum before it's closed up properly after the deep clean. (Ironic!). So looks like all ok for the time being but will be keeping a very close eye on it.
That's good, but an abscess could start the ONJ process. It isn't cancer related. It is medication related. It is not usually from cancer meds but from osteopenia or osteoporosis prevention medication. Most people on those drugs are older women without cancer.
Denosumab injections combined with Piqray the likely cause 😢
Thanks Tammy. I realise it's medication related - when I said "cancer-related", I was referring to the fact that if it wasn't for cancer I wouldn't be on the denosumab!
I had a successful run on Piqray - 14 months. However I developed skin Mets on my chest. Xeloda didn’t help as I was on it just 3 months due to progression in my liver. I went to Enhertu even tho I was HER2 low. Huge results there and I was on that for 10.5 months. I’m now coming up on another scan. Next would be Truqap and Fulvesterant. Plenty of options out there!
Again many thanks I have lots of questions for my oncologist !
first symptoms were very bad pain, although I didn’t realise it was the start of osteonecrosis, then roughly 18 months after I developed slight pain again in front bottom teeth, followed by an abscess which would not heal. Finally jaw bone appearing where the abscess was, I have lost 3 teeth and now have a permanent bridge. Probably should have stopped the Denosumab earlier but Piqray also contributes to it and I was reluctant to stop it because it was working so well! All a bit of a nightmare ..
I would suggest if you suspect something wrong get it checked out early by a dentist who recognises osteocrenosis, and best way for quick diagnosis is an X-ray.
Thanks Sweep - that's really helpful. They have given me a steroid mouthwash (off label - provided by the drug trial company) so I'll see if that makes a difference and also push for getting it properly looked at.
They gave me a special mouth wash, too -- but I think antibiotic. I used it gingerly, because it turns your teeth brown. I should have taken a mouth bath in it! Could have dealt with brown teeth later, if I had kept the teeth.
I will be watching this post of yours very very closely, as I’m coming up to a year on the same treatment and hating the Piqray/Fulvestrant mix. Thank you for sharing this.
Hi There!!
I have bone mets and a small spot on my liver, as well.
I was on Ibrance and letrozole for almost two years. I was then put on Cape and that lasted a few days. I had a very bad reaction to it.
I’m now on Enhertu and I’m so thankful for it!! I call it the miracle drug! Everything has either quieted down or completely stopped. The spot on my liver has gone down by half. I’ve been on this since June.
You might want to ask about it!! 🙏🏻🩷🙏🏻
Good luck!!
Jody
Thank you I will
Piqray 
Piqray
Piqray
Anyone heard of Piqray?
