I’m writing with some sad news (for me) tonight at 2.30 am. I was told on Friday at my appointment with my Onc, after having had a PET scan a mammogram , (because the that my cancer had come back in the breast and there was a a mass there that had gone undetected after 2-monthly scans for the last 14 months that I’ve been on the CAPTURE trial) that I’m now to come off Piqray because It’s probably not working anymore. My CA markers have been on the rise for quite a few months now and I can’t remember the other reasons for his decision. But the breast lump is no more than scar tissue. So no lumpectomies or mastectomy for me.
But here I am facing what may be my best (Possibly my last) line of treatment Capecitabine. If indeeed I do decided to do it. I say possibly my last because he told me that even though there am any other options for me, he fears that maybe my body has built up a resistance to Pic3CA treatments, Piqray, most of my other options mostly work of that kind of thing. I’m orry if I sound very uninformed, bordering on stupid. But there’s only really me who ever researches anything to do with me, as I don’t have anyone else who cares enough to really walk that road with me. My daughter does all she can, keeping track of everything. But she also lives til her father who is incredibly and chronically ill. She also runs a small Coffee cart business, where often things go wrong and she is constantly being called on to fix problems and decisions that will either make or break her business.
I may well decide, in this 2 week break from all treatment, Piqray, Fulvestrant and Denocumab (because I have had some teeth and gum problems recently, but I’m talking.my time to think on it as I some of you know I put a post up a few months back when I was feeling particularly frail, that I may decide not to go on any more treatment as I’ve had nearly 7 years of it all up now. First line wa Ibrance a Anastrozole.
But here I sit typing this, and I am in the most awful state. Sore bones all over my body, like I have a fever, I’m feeling I may have a bug of some kind and will make an appointment with my General practitioner onn Monday, It is the wee small hours of Sunday morning here in Melbourne Australia. By the way, I hope there are not too many typos here. I have also had the most terrilble trouble with my sight in that last year. I was diagnosed with Drug induced diabetes from the start of taking Piqray. I’m also on Metformin for that.
I was asleep and woke up to this gnawing feeling deep in my spine and also in my ribs and right sacroiliac, where I have extensive Mets. I”m feeling so unwell. But I keep telling myself “It couldn’t possibly be just from stooping Piqray and Fulvestrant two days ago. Could it?” Could it?
Anyway. Hope this post finds most of you doing okay and I’l; stop writing this long post now. Ohhhhh doo I really want to start another line of treatment? Capecitabine has been looming as an option for a hole now. And some of you have been great, telling me it’s quite the wonder drug.
Goodnight all.
I hope I sleep now.
Tim Tam from Oz.
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I was on Piqray for 18 months— it managed to keep bone mets stable.. not entirely gone but not getting worse. Then we found brain mets and a met in the bone marrow that caused a fracture in my femur, so besides radiation we also changed systemic treatment to Capecitabene (plus Tukysa for brain). Amazing! In three months my “stable” bone mets “resolved” — as they said in the Petscan report. First time since diagnosis! And markers are way down. I think capecitabine is responsible. So I highly recommend it.. it’s worth a try!.
Get well from your feverish thing — take some Tylenol, enjoy your break from drugs. Don’t worry, even if it gets worse (I don’t think few day can make that big a difference ) capecitabine will fix it. My TM went to 1389 and after a month of cape, they went down to 540, then 159, then 72. and I think there are other drugs after that. Enhertu, trodelvy
Thank you so much for your beautiful response. And I tell you that this site is so wonderful for those of us who are alone in the dark of the night and haven no one to turn to. We have lost so many beautiful friends on this site either due to death or to not liking the way it is….. But for the ones of you who are here, who have stayed, who bother to respond…. It is the most wonderful thing when I’m feeling alone and lost. Love and hugs.
Hi Tim Tam! First, lifting you up in prayer for some peace of mind right now. Second, you’re strong and though starting another line sounds and feels daunting you can do it! I’m on my 7th now. Extensive Mets in my spine led to spinal fusion surgery a year ago and I’m still recovering. I’ve also got the Pic3CA mutation and was on Piqray for only a short while due to the AE’s specifically blood sugar. My now fired onc put me on Fulvestrant alone which did nothing then Capecitabine which seemed to be working great with no issues but she pulled me off as I had undergone radiation for the bone mets and she thought that had affected my markers erroneously positive. So she put me on Trodelvy which was hell for two weeks and pulled me off, told me to go home and call hospice. I now have a new oncologist who has me on Afinitor (Everolimus) and Aromisin (Exemestane) and my last scans showed dramatic improvement and I’ve had no issues. Bottom line, my new oncologist told me they are treating me as someone with a chronic illness and we’re just going to manage it with tried or new treatments and there are new options becoming available so don’t give up. Try the Capecitabine-I hope it will work wonderfully for you and you can have a good long run with it. I’ll be praying 🙏🏻!
So helpful to have this insight and to know names and treatments. I can’t tell you haw lucky I feel to have opened this up and seen all the lovely responses. You are very kind. I will keep you posted. He wants me to have two weeks off. So we’ll see. I think I’ve pretty well made my mind up to go for the Capecitabine. Fingers crossed it does some good things like it has for some of you.
hi Tim tam- I was sad to read your post.. so sorry your daughter is so consumed by so many problems in her life… I am going to be like the others and tell you that capecitibinr was a wonder drug for me… can be great for you too. I would try it.. but don’t let them put you on a big dose… I was on it for 18 months and felt well except for my feet which felt fine if I didn’t walk too much… very blistery if I walked any distance… so I needed a wheel chair in airports etc.. which I hated but small price to pay to keep getting back to Nz… I am in Nz now.. also having a pretty tough time of it.. you inspired me to write another post soon. I know everyone will want to support you and encourage you.. you have been one of my first memorable friend over here when I joined up and I am sad you are having a rough time.. it could be stopping the Piqray or just a nasty flu bug making your bones hurt. Both are lousy…but if flu then you will feel better soon!
Miss Buckets of love and kindness. Thank you again for your response. I’ve actually been worried about you.
I hope I see a post from you so thiat I know where you’re at. But I”m glad you’re in your beloved NZ. I have my bestie here tight now, She’s from Auckland. And she’s my rock. She’s mostly here when others can’t be and I feel so lucky to have her. Where are you at present miss betty buckets? My friend want sot know where you’re from.
I love NZ so much. It’s really the most beautiful place, with an undercurrent of really lovely original peoples. They know how to do it over there.
Oxycodone on top of all my others pain killers seems to be working. But also this lovely heat blanket that I have really helps with the pain. Do you have pain? I use this UTK Far Infrared blanket with Jade beads in it. It’s a bit of a miracle thing when I’m in pain like this. My pain feels like i’m being eaten alive from the inside bey rats. Really like a gnawing feel in my spine, that makes me feel like I”M empty and have now support in there! Not good!
Sending love to you over the big ocean Miss Betty. XXXXXX
I'm not in a place on my journey to give any specific advise, but please consider the thoughtful comments made by others. I am not nearly as symptomatic as many have been, but we all have dark days (with good reason). I found the other comments to be very encouraging and hope you do as well.
So sorry to hear of your troubles but please don't give up hope. It sounds like you've got some sort of virus on top of everything else....just what you could do without!! Take some time to get over that before making such a daunting decision about your treatments....sorry I can't be of any help about offering you any feed back on your choice of next meds...but I know from others that there really are many options and these have often given surprisingly good results. I'm not sure if it's an option but you could also possibly look to get a 2nd opinion or switch oncologist?
In my clinic the oncologists all meet up to discuss med changes of patients to brainstorm and make a group effort to give the best option from their joint knowledge....which also helps to make patients feel considered and more assured that the next treatment has a shot of working. It's so scary to change the thing that's potentially keeping us alive!!! But the next one could be great!!! Everyone reacts differently as you well know so even if you've heard some people having negative reactions and side effects...it doesn't necessarily mean that you'll be affected that way yourself.
Sending you a big hug and some positive energy❤️.
Take care my friend! Wishing you all the best, I believe you have the strength and determination to do this!
You are deeply cared about by all of us not matter how far the distance between us. I hope the really rough patch you’re having doesn’t last too long as you find what works best for you and capacitibane sounds like it may have something to offer. And anything that distracts from the pain - whether euphoric music, obsessive activity of any kind, plus the meds. I’m sorry too about how your immediate family are facing such big challenges too and hope they get a big of good luck. I’ve read somewhere that even the first line palbo /hormone combination can be effective again after a long break. Here’s hoping you find a new ‘good patch’ soon.
Wow there’s some interesting bike babe. Have never heard that about going back onto an old treatment. never heard that about going back onto an old treatment. And thank you so much for your care. It’s very sweet of you and I really can feel you all out there., just like I’m there for you guys when I hear that some of you aren’t doing well. It’s amazing how much we all really do feel. It’s not like we’re just words on a page! Sending love to you.
there is a clinical trial that I am on for the pik3 mutation called rly 2608, I have had good results so far, perhaps you might want to explore this, and there is another med, that also attacks this same mutation, I am blanking on the name, that also might be an option.
That’s interesting, because my oncologist told me on Friday that he doubts that I can go on other clinical trials because they all tend to work on the pik3CA gene. He said that perhaps my body has worked up a resistance to any of those ttrials and that Capecitabine might be my only only choice going forward.
That sounds like a guess. I have heard of resistance to estrogen inhibitors, via the ESR1 mutation, but not a mutation that stops PIK3 meds from working. Is there a reason your oncologist believes that -- other than the one med stopping working?
That said, I went on cape because it is generic in its approach - works on other types of cancer. I found it easy to take, but it didn't work for me. That was disturbing. Now on my 7th line and it probably isn't working. Looking for a clinical trial.
Good. I hope your onc has an answer. Mine never explains anything, or her explanations are vacuous. I stay with her because people in breast oncology say she is brilliant. It is really hard to tell when she cannot answer my questions and repeats the same things from my chart every time I see her, monthly for 6 years! I am impatient with that.
Also, try the cape! Why not? The NP who works with my onc., and does explain things, had really high hopes of it working for me, based on responses of many other patients with all types of mutations. Some people have unpleasant but not critical side effects. I didn't.
Oops! I was so wrong. This is what AI says about resistance to PIK3 meds. It sounds to me like, after cape, you need to get into one of the clinical trials on overcoming resistance:
"Yes, there is significant resistance to PIK3 medications (PI3K inhibitors) in humans, meaning that cancer cells can develop mechanisms to evade the effects of these drugs, leading to treatment failure over time; this resistance is a major clinical challenge in using PI3K inhibitors for cancer treatment.
Mechanisms of resistance:
Several mechanisms contribute to resistance, including additional mutations in the PI3K pathway, activation of parallel signaling pathways, and alterations in the cellular environment that can bypass the drug's target.
Clinical implications:
Despite initial effectiveness, most patients eventually develop resistance to PI3K inhibitors, limiting their long-term efficacy in cancer treatment.
Research focus:
Scientists are actively investigating ways to overcome resistance to PI3K inhibitors, including combination therapies with other drugs targeting different pathways or developing new PI3K inhibitors with improved resistance profiles."
So it is not just another mutation, which could be tested. There are other reasons for resistance. As I recall, Dana Farber has some articles on other mechanisms of treatment resistance in mbc. (I brought an overview article to my next appointment. The NPs grabbed it and made copies. My onc. wouldn't even look at it.)
Hi Timtam Firstly let me send a huge hug from the UK I can’t advise or talk about Piqray but I have been on Capecitabine and tolerated it quite well but do a bit of research on Hand and Foot syndrome. I had to have all treatment stopped because of a something not associated with Capecitabine. I had a bit of hair thinning but apart from that I was fine. I’m not a specialist or anything but I think it takes a while for some treatments to flush out of your system so that may be the cause if some of your current pain. My thoughts and prayers will be with you as you continue your journey. You sound very brave. Don’t give up xxx
Thanks KarenandLinda. Yes. I think I will go for Capecitabine. I was thinking for awhile there that I’m sick of it all I might give up.. but that’s when I was on Piqray and I was really sick. So I have heard from quite a few of you here about syndrome. It’s not something I’m looking forward to. I can tell you. But maybe I’ll just have to be a big girl and go for it. And although you’re saying that you’re not a specialist I think you’ve got it right here that those toxins flushing out of your have an on us and yes I believe that what I’m going through now is totally to do with withdrawal symptoms.
I got all prepared for hand foot in advance, because of BettyBucket's clear description. I got plastic gloves so I could have hand moisturizer overnight, and socks for the same, and got a prescription for something I learned about here that prevents HFS -- then nothing! Didn't dry out at all. I wish we were in the same country. I could send you all this stuff I don't need. (It seems our president isn't interested in annexing Australia, just Canada, Greenland and Gaza.)
I also meant to say when I posted above that I have had a couple of times that I felt so crummy I wanted to give up. Turned out to be some infection. Once I got over it and got energy back, I was ready to try again. I feel alone at those times, and the world seems bleak.
Thanks again for your thoughts. Yes. I’m getting more and more scared by the day. (They’ve brought my appointment for assessing the possibilities forward to this Friday instead of next) So I feel I have to make my decision quickly now. Do I or don’t I want to try Capecitabine? And If not….. it may be because I’m truly tired.
(The American president had not lifted my spirits at all.)
And being alone, it is not going to be easy for me if I do get H&FS badly. It will make my life quite difficult. So there you have it. I don’t know. I’m wanting to take time to think o n this and it doesn’t help when you’re feeling like shit. I’m taking so many pain killers to cope with these withdrawals the I’m no even supposed to have!!!! And my body still feels awful. Sore. Aching. Tired.
Hmm, that is tough. Even more I wish we were neighbors (but living in the US is very demoralizing now). It is hard to make decisions when you feel awful. They really don't recognize the withdrawal? Why did they move up your appointment?
I think you should try the cape. It might be easy for you. You just don't know.
Can you put off starting until you feel better? It is just a pill, no appointment needed.
Yes that’s what I’m thinking too. Just give it a go.
They pushed my appointment because I was so sick. But anyhow, I’m feeling a lot better as the days go on. I think it’s best to try whatever I can while I can.
Good! I can tell you are feeling better. Still, you don't have to start it the day they give it to you if you need more recovery time. I feel better, too.
Sorry to hear you are feeling rotten. I am in the Facebook group for Piqray and PIK3 although I have not been able to take it myself as am in the UK and have already had Fulvestrant. I have seen several people talking about withdrawal symptoms when coming off Piqray so maybe that is why you feel bad? I would definitely try Cape as it seems to do wonders for many ladies. Sending love xx
Yes Labrary Geek. I just went on that site and I’m blown away that other people feel it too.. it just feels so lovely for me. I have been on the phone to the trial nurse at the Cancer hospital and I’ve asked her to please tell the oncologist that it is a real thing. I also told her to tell him that telling people they wont have withdrawal symptoms is absolutely the wrong thing to do to someone.
We are all so different in our responses anyway, so to dismiss one person’s reaction because another didn’t have one just seems ridiculous. I was coming to the end of my treatment lines but have now been approved to start Elacestrant which has just become available on the NHS. I have the ESR1 mutation but had to really push my team to get tested, although now it is available that will be standard in the future. So fingers crossed it will help me as hormones have been very significant in my progression. I feel very good about a rest from chemo after a year of it😌! xx
Good you can get tested, and found the mutation, and can get Orserdu. I am on my 7th line of treatment. We are lucky this one was approved recently. I find it easy. I am afraid it isn't working for me, though. Tumor markers are up a bit. Will have a scan in two months, or one month if tumor markers keep rising. But that is me. Good luck to you.
So sorry you are going through all this. I pray for a brighter future and success for your next treatment. I feel so badly that you are in this battle alone but you are strong!
Dear Timtam----I, like you, have had the cancer spread. I was off cancer drugs for too long, according to me. My onc considers me at the end stage, probably because. I am eighty-seven. I intend to be around till I am ninety. Then, I might want to negotiate. Either way, I am finally back on drugs and finally, my head is screwed on straight because I am purposeful again..I am going on fighting instead of laying around, waiting to die. I began Truqap a few weeks ago and feel as if I have absolutely no energy for anything. Tomorrow, I get the Fulvestrant added to the Truqap. A soon as i am done writing to you, I will head back to bed, exhausted but happy. I am sorry that you are so down and hope that you make a decision that changes your mood. We are all in this together and love each other. XXX OOO
I ask myself, after sleeping 8-9 hours a night, then going out and having some fun today for 4 hours, then back to bed and a hard sleep ---- really? I feel fine mostly, but I am awake and functional so little!
I wonder if your body will adapt to the Truqap and you will get more energy.
Yes. It’s a tough road this one. as I write my head is pounding and my body is not at ease. All the pain I’ve been covering up all day with painkillers is now coming back. I am in bed ad ready for a very long sleep I hope.
It’s at times like this I long for the big sleep. Is that way too dark to talk about here? I’m not at all depressed. There are things I look forward to. And things I hate haven’t to do. But I know I’m not depressed. Just realistic. I’m 68. But I’ve lived a very very full life.
So. It is as it is, and I am going to make sure the decision I make from here on in are my own. If it’s the last thing I do.Sending love and hugs back at you.
I am sorry TimTam. But I hope you feel encouraged by all that was shared here. Don't give up. There are still options and maybe around the corner there is some drug, old or new that will work splendidly for you. Keeping you in my thoughts and prayers. Hugs!!!!!
Dear Timtam, Hopefully your mood is temporary. Having a cold or flu on top of all the cancer symptoms can cause ones mood to plummet. It’s a double whammy that no one needs. If you can get some real sleep, that can only help. I hope you can. Hopefully you can get on a new medication that will really work for you and that will improve your outlook. It’s tough and feeling like you have no support doesn’t help at all, but I feel like the only real support we have is the people on here. Someone who doesn’t have MBC cannot begin to know what we go through. They can try, but they don’t know all the intricacies, the fear, the pains and joy when something improves. We are here, just a click away 24/7. Use us, we don’t mind! Your blanket sounds wonderful! Get under it and drift until you feel better. All my best wishes!❤️❤️
Thank you Nocillo. I just wanted to let you all know that it is not the flu. I don’t want there to be a misconception that coming off Piqray, I’ve also had the flu. for. Negative for flu and Covid it is absolutely withdrawals. Having come off.Piqray. Somehow my body has gone into some sort of state and I can tell you it is not nice..\
But thank you very much for your thoughts and kind words. I think if I keep taking a lot of and if I can get on top of it until I get through this, I’ll be alright.
Have you asked your onc to help you or is that person too busy? I think, in some ways, we are our best nurse and you are most likely doing the best thing for your body. You know it so well and you know how to treat it with kindness, understanding and sympathy. We are all with you. XXX OOO
I’ve got all the wheels in motion now. The Breast Nurse had made me a phone appointment for today, and then my oncology appointment tomorrow. And my daughter is coming with me to my appointment.
Hi Tim Tam sorry to hear you're feeling so poorly and up during the night unable to sleep is very draining I feel your pain and send hugs and healing energy to you xx 🤗🤗🤗 I too have just had progression after 3 years on inbrance and fulvestrant. I was filled with dread when my oncologist said I need to change to Capecitabine. That said I'm on my first course of Capecitabine and Im feeling ok I've been moisturising my hands and feet each day to keep the hand and foot syndrome at bay and seems to be working 😊 im on 5000mg per day take 5 tablets am and 5 tablets pm you have to take 12 hours apart after food which is the only inconvenience for me so far. Lots of people have very good results with Cape so I think you should definitely give it a go my onc did a DPD test before I started taking it too.
Hope you're feeling better soon sending love and hugs to you xxx 🤗🤗🤗💖
Hi hope you're feeling a bit better today xx Its a test they do to gauge the dosage as gives a guide to if you will have more side effects from the Capecitabine(Xeolda). This is what it says online regarding the DPD test. Having a deficiency in the DPD enzyme could make the side effects of certain chemotherapy drugs worse.
So sorry to hear what you are going through. You must be so tired! But don't give up hope. Give yourself some time to make a good decision. You may feel better in a week or so. You will be in my prayers.
My wife has stage 4 terminal breast cancer that has spread to her bones, her pet scan shoed mets everywhere in her bones and liver, after talking ibrance, Truqap, she is now on Xeloda ( Capecitabine ) and after 4 cycles, 100% of her Pet scan was Cancer free. That being said, Xeloda is mostly effective through 6 - 8 three weel cycles, and sadly we expect the cancer to slowly return and we will have to go onto another treatment. Praying for you all
My goodness. I’m not doubting you.Utehsara. But I have heard from my oncologist that there is absolutely no way that you can get rid of bone metastases. There aren’t any treatments that can save us or get rid of them so I’m really surprised and happy to hear that your wife is cancer free. My god that is like a miracle. From all I know in my nearly 7 years of being metastatic I have never heard of someone being free when
I had many many bone mets. It is hard to tell on scans because healed bone mets also look lumpy, but mine did go away. They were not metabolically active, but my onc said they were present microscopically. So I was free of detectable bone mets but not cancer free.
Oh really? Well. Maybe my cancer is different. They say they will never be able to get rid of them and that they will always be there. And only get worse.
I am not sure we are saying anything that different? Cancer will always be in my bones, sometimes hiding microscopically, but they were all inactive. One of them came back, is active.
Oh my gosh I’m just going to read all through the newest posts. I’ve just seen here thank you all..
I just want to let you all know something I found out by going on the private Facebook Piqray site where there’s a whole lot of people there who are on Piqray, or who have been on Piqray
It’s marvellous to just know that I have found out it’s not psychosomatic what I’m feeling. And some of you mentioned that I may have the flu or something.. I did a rat test that had a flu component as well and it’s negative. So I just want you all to know that I haven’t got the flu.. I am just having the worst flu like symptoms and a few other people on that site have had the same thing when they came off Piqray. I’m still feeling revolting but whole lot better having now taken some bigger doses of oxycodone Nurofen./ibuprofen. So that is keeping that feeling like I’m dying at bay. It is not however doing a terrible lot for this pain in my spine.
I just want to record it here anyone else comes off Piqray/Alpelisib and they feel terrible. It’s a real thing. You are not going out of your mind and it’s not a psychosomatic issue.. It’s real
That really helps -- to learn it is a thing, and you have to find the people who share your experience. Glad you found your peeps. Now, what is the spine pain? Very hard to address back pain.
Timtam, After reading all our posts, I'd think you could use a nap. I have no advice except to follow whatever you feel is right for you. Prayers and hugs.
hello TimTam…I have followed you on the FB Piqray group where you had posted about going on to Capecitabine….i can see you’ve had lots of support about that med and it seems it may be the best option. My ONC had offered it to me instead of Piqray but , of course, here we are…best wishes on your continuing journey. 🙌🙌❤️🩹❤️🩹
oops…..so sorry Timtam….I thought you were in Canada 🤦🏼♀️. We love you guys in Australia too!!!
You’re going to do just fine. You’ve been so strong with this and we rely on you for your “get through it” attitude. Every new treatment is a leap of faith. We are all sending prayers and strength your way! Please keep us posted!
I’m going to have radiation seeds implanted in my liver. Not looking forward to that since the last time I had contrast my heart stopped for a bit….so this time it’ll be full anesthesia and intubation. This fight is never easy, you’re not alone. 🩷
I have been on Capecitabene for almost a year, and I'm having rib pain, and my tm are increasing so I'm thinking my cancer is progressing. I have a bone scan on Tues, and we may have to change my treatment. I'm on Cap, one week on, one week off, and I have had minor issues with my hands and feet. I constantly use lotions, Aquaphor for the cuts on my toes, ball balm is good, and so is cbd cream. My biggest issue is that the tips of my fingers are sensitive to cold and heat, so I have to be careful. I've still been able to do my normal things. Recently I had a tumor profiling test done by foundation one, and the report gave all my mutations and treatment therapies for every mutation. My onc said they can also do a blood test to get the results. I live in Michigan USA
Thank you. I wrote this a week or so ago. I’m feeling much better now and have written another post explaining my decision to start Capecitabine. Which I have now begun..
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Piqray 
Petscan showed progression. Moving from Ibrance to Piqray. Terrified. 
