After 6 months of consistently rising tumor markers and increasing back and leg pain, a recent flurry of scans and an MRI have finally brought us to the realization that the IBrance and Anastrozole combo is failing to control the bone Mets in my pelvis, sacrum and L5. I’m in the process of starting radiation for the painful spinal Mets and possibly re-radiation of the original iliac Mets.
With radiation now on the schedule my ONC has stopped the IBrance and anastrozole for the duration and is offering me a choice of two treatments: Piqray and fulvestrant injections (I do have the mutation for this targeted treatment) or xeloda (which is a broader chemotherapy oral drug).
I’ve been going through many past posts about your experiences with both of these drugs….and at the moment I’m leaning towards xeloda. We all know that no drug is a permanent solution to this disease and everyone reacts differently to them with a varying array of side effects.
Piqray has the painful fulvestrant injections, while Xeloda causes HFS…ugh…I just feel that there is no easy option. Being on the cusp of change is always upsetting. I remember being so terrified of IBrance and yet in retrospect it was not so bad. So now, another change is imminent.
My ONC’s suggestion is to try the Xeloda at the beginning of December possibly …Dr. Google (published studies on the internet) recommend starting with a lower dosage to mitigate the HFS.
If you’ve been offered these two treatments, which one did you try…and are yiu happy with your choice in regards to tolerance and quality of life.
🙏🙏🙏 …and so it goes.
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I was in Fulvestrant and did not find the injections to be "painful." Things that help with that is for the Fulvestrant to be taken out of the fridge when the nurses/pharmacists first arrive. Being near body temp really helps. You can ask to hold the vials under your arm pits for a few minutes to warm them up. Get the shots one at a time (there are two of them) so you can take your weight off the side being injected. It should be administered slowly. It worked for me for over 9 years! One of the things I liked about it was not having the daily pill reminder of cancer, lol. As a long timer with mbc (over 19 years now), I'm kinda surprised that you were offered a choice between an anti-estrogen or a chemotherapy drug. I'm on Xeloda now, my first real chemo and because the cancer cells changed from E+ to triple negative. Maybe you onc has a good explanation for suggesting those alternatives.
Whatever you decide, I hope it works well for you and that you have peace with your choice,
What a record you are setting! We are thrilled to hear how this can be a chronic and manageable disease…and yes, I was given a choice because there is some hope that not using aromatase inhibitors may open a possibility to reuse them in the future. Fingers crossed that one day we can all say that we are living 19 years with mbc…and many many more 🙌🙌
Wow 19 years, please any insight/info on what works. I'm a newbie stage 4 breast cancer survivor. Just curious what you feel is a priority in fighting this battle, alongside the meds. Jam
I am currently on Fulvestrant and like PJBinMI I have not had any issues with the Fulvestrant injections. I have the same nurse at the medical centre and she is very good. She is the second nurse I have had ( the first one moved on) and when I had to change nurses I panicked thinking the second one wouldn't be as good as the first, but she was even better. I take my injections out the fridge 1/2 hour before I go to the centre, I lie on my side, (no standing for us lazy kiwis) and the nurse has a 2 minute timer and always injects a bit slower than that. I hope this helps allay some of your concerns.
I have had 7 rounds of Zeloda and it works perfectly. No side effects at all however diarrhea is a problem only sometimes but I am without Cancer at the moment. Still as someone said there is no cure but this Drug was and still is easy.
Oh my…what a resounding recommendation for Xeloda! May it be a long and successful tool for you and others. You had me when you wrote “ no side effects…diarrhea…only sometimes”. I’m tired of being tired and sore….🙌🙌
hi. I know nothing of the Piqray side effects. however, I have had the fulvestrant injections and I too had no issues with them. oh, and I just wanted to mention that I preferred to get both injections at the same time (two nurses). it's a brain trick...you only feel one! whatever works best for each of us. best wishes💛
I do both at the same time as well and they do have Lidocaine spray that they spray each side with that helps with that initial sting. That’s all I feel. They warm them up by putting hot water in the exam gloves and place on top of the vials for a few minutes. I have them raise the chair so I can lean forward on it and take most of the weight off of my legs. Then for the two minutes or so that it takes to administer we pick something to talk about…usually my sweet little granddaughter or vacation or holiday plans, etc. I am starting 3 years now on the Ibrance and Fulvestrant combo and NED now for 21 months. Hoping it lasts a long time before having to make a change.
hi Gingerann, me too...I lean against a chair so I too can take most of my weight off my legs. and yes, chatting with the nurse(s) is a great distraction. 💛
I was on Fulvestrant and Anastrozole for almost 6 years. The injections aren’t really painful. It sounds worse than it is. I would pick that over a pill, if the pill has pending side effects. Good luck!
Thank you…such a choice we have! I’m just relieved not to have to take anything for a few weeks while I get radiation before the next chapter. May your treatments be successful for a long long time .🙌🙌🙌
Hi there. I’m sorry to hear Ibrance has stopped working. I can’t advise you as to piqray as I don’t have the mutation but I am on my third cycle of Xeloda coupled with injections of Denosumab and have hardly any side effects. So far this does not impact on my life in any way. I hope your treatment whichever you choose works for you. Good luck
High everyone. This is my first posting here. I have been taking xeloda for mbc and am finding the fatigue crippling. My former fairly active life is a distant memory. I am seeing my ONC this afternoon to discuss a dose reduction. I take 4300 a day 14/7. Like many if you I have read that a lower dose is still effective and can really help with side effects. Any thoughts??
Thanks so much for coming back it’s so helpful. Just seen the doc and she is reducing my dose to 3400 12/7. Are you in the UK? The doc says 7/7 not authorised here by the NHS.
Oh no…so sorry to hear but it looks like you were able yo negotiate a lesser dosage. It’s frustrating to see how patients are subjected to maximum dosages “ to see how it’s tolerated”… a sometimes unnecessary step! I did opt for a lower dose when I felt fatigued on IBrance and I also opted for an alternate schedule to minimize neutropenia. It worked until it didn’t. But I’m so glad you got the reduction you needed. Best wishes and many thanks !
Thanks so much for taking the time to reply. Agree with everything you say, sometimes I wish the oncologists could feel how we feel. Hope you are now doing okay.
Thank you…it’s a relief to hear that Xeloda is not the devil described in the literature…may it continue to be successful to you for a long, long time!
Ibrance + fulvestrant quit working for me after only four months. Then I went to MD Anderson and they put me on Xeloda. I started out at 3500 mg a day, two weeks on and one week off. My feet never cracked or bled (I keep them “lotioned” up) but they did hurt so my doctor switched my schedule to week on/week off.
It’s been working great… I’ve been on it for eleven months. My hands and feet are red but no real issues. Like I said, I use lotion liberally!
Oh, so good to hear that your ONC listened and helped you with the symptoms. BTW, there are studies that indicate that a response to Xeloda that includes HFS like you with the red hands means a better response to the drug! Thank you so muc( for your input 🙌🙌 and many many years of continued success!
I am now on Fulvestrant and ibrance after three and a half years on ibrance and letrozole . There was a bit if concern a few months ago about a possible increase in a mammary lymph node. My tumour markers had been slowly increasing for a while. I felt well with no other problems so my oncologist changed the letrozole to Fulvestrant. This combo is currently working and my tumour markers have gone down. But I know that will only be for a period of time. I too was frightened about ibrance but I had no problems, nor from the change to Fulvestrant. So I will be interested in this discussion and your next line of treatment. I wish you well and hope that whatever combination, it brings you better health. Stay positive ! Carolyn x
Glad they finally found the reason. I too had the injections and never had an issue. It is however, important to find a good nurse because they should be room temp and given over a slow 2 min time period. I also think I read somewhere recently, that there is a pill form. I do not have the mutation to have had the other. I have tried xeloda (cap) and it did nothing for me. Instead my markers just kept going up. I hope all our comments help. Blessings
Oh thank you…you must know how grateful I am to hear of your experiences and perspectives. I also did hear about the pill form…(SERD) so maybe when the time comes I can opt for that! Best wishes❤️🩹❤️🩹
Hello there fellow traveller, I have been on Xeloda for two years now (before that two years in Ibrance and Letrozole) and so far have done very well. My cancer markers have come down to normal levels and my many tumours (bone and liver) are 'in remission'. There are side effects, of course - sore feet, tiredness, occasional diarrhea - but they are all manageable and worth it. I know it won't last but for the moment I can live a pretty normal life. Good luck and good wishes!❤️
Oh thank you…you had me at “ a pretty normal life”… looking back, IBrance was pretty benign after all so I long for those days of relief in knowing that the cancer markers are in control. So glad to hear that the Xeloda is working and giving you peace of mind. Best wishes to you as well !🙌🙌
I am so sorry to read this news. Switching meds is scary and I hope you find some good information here to help you make an informed decision. It is good they are doing radiation to help alleviate the pain you are experiencing. Hopefully the treatments will provide relief for you. Did you ask if you could stay on the Ibrance and add the Fulvestrant after you finish radiation to buy a bit more time before switching completely over? The commercials for Ibrance always say Ibrance and an aromatase inhibitor first and then Fulvestrant if the aromatase inhibitor stops working. I also remember being terrified to go on the Ibrance and have found it to be very tolerable once I got used to it. I know you have a lot to think about. Please know that I am sending you hugs and prayers.
Thank you so much my dear fellow warrior! I do have high hopes for the radiation to make me feel more normal again…I will continue to talk with my ONC about the fulvestrant and returning to IBrance. You know me well enough that what I crave is to be active and enjoy golf with my husband and friends…so I’m looking forward to relief from the back/leg pain. You’ve been a good mentor and shoulder to cry on…thank you!🙌🙌
You are so welcome. I'm glad you will talk with your ONC about that protocol. I know that is what I would do if I needed to switch. Quality of life is so important and playing golf and staying active helps keep us moving forward. I totally believe the radiation will help you. Please keep us updated and feel those hugs and prayers.
Thank you…that’s music to my ears! I’m glad it worked so well for you…I too had dramatic response to radiation to my iliac 3 years ago…praying I can benefit from this remarkable technology. Best wishes on your continued well being 🙌🙌
I did the Piqray/Fulvestrant combo and then Xeloda. I honestly had no problem with either drug, it was mild progressions that caused me to quit and move on. I did start to get a very mild blood sugar increase with Piqray and I did get some HFS with Xeloda, I just made sure I had my cream on hand and stayed on top of the peeling.
I was hesitant to take Piqray because of all the negative posts about it, I had a positive experience with it and while I was only on it for four/five months, that was a line of treatment I could use to my advantage.
Thank you Allison! I had heard about Pikray’s ability to generate diabetes and the need for metformin. Im happy to hear you managed the HFS with Xeloda…your support is very helpful!🙌🙌
I’m in the same boat as you except I don’t know if I have any mutations yet- waiting for results on that. My scans from last week show progression to the sacrum, L5,T8,T11. My tumor markers have been rising since late last year. I’m also stopping Ibrance after 3 years but won’t know my next treatment until the tests come back. He’s ordered a pet scan as well as a biopsy. My oncologist says radiation isn’t an option because there are too many. He said at this point radiation would be to certain spots just to relieve pain. I’m not in horrible pain just yet but I definitely know it’s there. Best of luck to you! I hope you keep us updated!
Oh my gosh, Mary. Very similar indeed! I do have the PIK3ca mutation but opted to see if a break from aromatase inhibitors would change the response. Fingers crossed for radiation….and yes, it’s good to keep it as an option for the future. Best wishes for a successful next treatment 🙌🙌 and thank you for your kind input. ❤️🩹❤️🩹
Thank you …I’m such a scaredy cat for shots…the constant blood tests and infusions for tests and meds are just wearing me down. I’ll remember your words if it comes to that next. 🙌🙌
I've been getting fulvestrant shots for 10 years and if they make sure the fulvestrant in the syringe is room temperature and they administer the shot slowly, they aren't bad. Honestly.
I have found the injections to be "annoyance level" pain, not too bad. I've also found that if I walk around for at least 20 minutes right after the injections, I have no pain at the injection sites later. Without the walk, the next day the injection sites feel bruised (as if I had backed into a corner of the table). Hope that whatever you decide works for you for a long time.
I was on Xeloda for almost two years. I did have HFS, which was a bore, but totally manageable and I saved a ton on manicures and open toed shoes! My life was relatively normal throughout. I travelled, rode my horse, worked etc. So, for me anyway, it was not too bad--and it was pretty effective while it lasted.
That is so good to hear! Since I love to golf, knit, crochet and cook I was concerned about this side effect. My nails now are short and soft so I’m past the worries about that…thank you for your timely input, 🙌🙌 and best wishes to you !
I've been on Piqray and fulvestrant for six months after progression to the liver when Ibrance stopped working. Its not too bad. The side effects were hard at the start, but they ease off and it is quite tolerable. I have to watch my blood sugar to keep in within the 4-9 range which help the drug work better. I eat low carb and take metformin and jardiance to help. I had some initial nausea and a rash but this cleared up and I feel fine. I really hope this drug will work for a long time.
The fulvestrant injections are not that bad. I dread them but they are not painful and are over in 5 minutes. Other people's advice about slow administration and warming it up is sound.
So far after only less than 2 months, there has been shrinkage - CT scan due so fingers crossed . All blood coming back good, so I can recommend Piqray/fulvestrant. If you go for it, look into the ketogenic diet. keeping blood sugar low is key to this drug and low carb is the way!
I would go for this while you are ER+ as things can change and they may not offer this if you are triple negative or it changes to HER+ as my mum's did.
Thank you for your helpful insight! I hope it keeps working well for you…you seem to be able to manage the details of this medication very well. I’m trying to watch my diet because the aromatase inhibitor has been a body weight pump for me these past three years. The ketogenic diet may become a necessity for me soon. Best wishes for our continued good health🙌🙌
O am so very sad for you that Ibrance did not work for a longer period of time. The choice you are facing is really diffivult. If I were in your shoes I would likely lean towards Xeloda as well. My doc has told me there are such tough side effects of Piquay that she is sad when people have the mutation and she has to offer it. I wish you the very best. I do know of people having very long survival and coping well with Xeloda. I have had radiation for bone mets pain and was happy that I did. The pain relief can take up to 7 months to reach its full effect so don't be surprised if it takes a bit of time. Take care, let us know how you are doing and know there are no perfect answers to any of this. Wishing you comfort, peace and love. 🌺 Mary
Thank you Mary…you have a compassionate yet realistic understanding of our health dilemmas…choices that can make a difference in quality of life. I am leaning towards Xeloda , primarily to take a break from the aromatase inhibitor that has aggravated my arthritis so much. Thank you for your kind words and helpful advice. 🙌🙌
Although I have no experience with either of these treatments, I can certainly understand anxiety in changing treatment plans and the yearning to live the quality of life we desperately strive for. Praying you are back on the course crushing that ball in no time 💕
Thank you so very much…you indeed understand how this fork in the road is affecting us….and how we strive to maintain that quality of life. Best wishes and many thanks 🙌🙌
hello dragonfly - I’m a little behind you in terms of progression but totally empathise with the decisions you’re having to make. The advice on here is fantastic, very practical and very uplifting - thanks to all who replied. I hope you soon get back to your favourite past times and the arthritis calms down with no Letrozole and that whatever you choose the side effects soon settle down. My onco told me at beginning of my mbc journey that it would involve lots of forks in the road but if one combination doesn’t work there’s plenty more to try until an even better one comes along.
Awww thank you for your kind support. Hearing from all these lovely th rivers has definitely eased my anxiety and concerns. All will be well. All will be well. 🙌🙌❤️🩹
Hi Dragonfly2, I'm so sorry to hear that you are at the end of the road with your Ibrance combo. It was scary for me too, when I began the Ibrance combo as my first line treatment and now looking back, it was a piece of cake! I did try Fulvestrant/Piqray as a combo but I had such a severe reaction (rash 100% of my body, swelling and fever of 104+ after nine days of commencing Piqray), that I had to be pulled off of it and tried Fulvestrant combined with Anastrazole instead, but they failed. I started Xeloda in January on a 7 on 7 off schedule and really, it's not that bad. At first I had nausea but that dissipated on it's own after the first round. My feet hurt A LOT, but it's managed with pain killers. Outside of that, it has been working better than Ibrance did for me, and sore feet seem like a small price to pay being that I have no other side effects. I hope this helps, and wish you the very best in your journey!! Take care.
Thank you for your reply! Since I was given a choice, it weighed heavily on me to make the right one. The ONC did say I can always switch later if needed but I really did want to choose the most benign option. Looks like Xeloda was the right one for you…I’m just nervous about all the pills …1800 mg twice a day translates to 10 pills. But I guess it’s a small price to pay to earn a little bit of normal life. I keep telling myself that there are thousands of people dealing with a variety of illnesses that can be quite deadly…but cancer seems to make one feel like we are marooned on an island with a big C on our foreheads. Well, I’ll glad you wrote with more support …it’s deeply appreciated.🙌🙌🙏❤️🩹
Hi Dragonfly2. I'm sorry that this time of treatment change has come for you and we all understand how stressful it is. It sounds like you are bone only which of course is a good thing to celebrate first. I also have been fortunate to have remained bone only since my diagnosis. That did give me some wiggle room to stay on my first line of Ibrance/Letrozole longer (which was a gamble of course but one I was willing to take) and I made 5 years. However my once controlled bone pain started to come to the surface again and my oncologist warned me when you have been stable for a long time and those things start to happen it will likely eventually lead to the need of a treatment change and to be prepared.
As for which treatment you should go with that's more of a tough decision I know. My 2nd line after Ibrance/Letrozole was Everolimus/Exemestane which I am currently on. Scans tomorrow so hopefully it is still working. Piqray is always given with Fulvestrant as that's the way it was clinically trialed and approved by FDA. I think most people adapt to the shots and they aren't so bad...once a month after the initial loading doses but Piqray can come with some unpleasant side effects for people. Of course everyone is different. I have the mutation for Piqray too but where I live in Canada it is not funded so therefore not an option regardless for me. When my current treatment fails I will have to go to Xeloda (Capecitabine) as the next in line approved treatment. As long as you get on top of the GI issues that can happen as well as the HFS...so stay well hydrated and hand and foot moisturized with cream with a Urea count of 40% and cotton gloves and socks at night(or as long as you can tolerate) will be my go to for Xeloda.
I see you mentioned that you can go back to the other choice if the one you do choice doesn't work out so you are lucky really to be in a win-win situation. Good luck at choosing your treatment. Quality of life should be everyone's main goal when choosing in my opinion. Personally for me having constant diarrhea etc would not be quality of life. I certainly hear that alot from Piqray users so I would for that reason lean towards Xeloda. Also to note check the mutation % that makes you qualify for Piqray...if it is really low then that needs to be considered as well. Take care.
Thank you so much for taking the time to share your experiences…and congratulations on your 5 years of thriving. You nailed it when you understood the stress when it comes to changes…I keep telling myself to pull up my big girl panties and just get on with it. Life is still pretty good with friends and family and grandkids.
I guess I’m lucky enough to have an ONC who will listen when I need help… and I’m pretty relieved that I’ve gotten the tests and now can get some radiation to knock back the pain. After radiation we’ll start the Xeloda …gulp! And I’m so sorry that right now Piqray is not available to you…it’s so disturbing to hear that it’s not funded in Canada (I left Canada when I got married) so it feels very unfair. We can only hope that protocols change as research unfolds new treatments.
But thank you again for reaching out…cancer makes one feel disconnected from all the “normal” people and it feels lonely to face this ..even when you’re surrounded by people you love. That’s why this blog is so good…we’re not alone, for sure, especially with lovely people like you reaching out. I wish you all the best and hope your treatments work well and long…say hello to Justin..haha, I was there when his father Pierre was running things. Best wishes 🙌🙌❤️🩹❤️🩹
I'm glad you have made your decision and I truly hope your radiation will help the pain and get you back on the straight and narrow. You know I don't stress about things I can't change like the healthcare drug restrictions here. It is what it is. Living with this disease is stressful enough on it's own isn't it.
Yes I agree...normal people no matter how much they love you cannot appreciate how we live from scan to scan in reality as it dictates our lives.
Please take care and know that we are always here with shoulders to help ease the burden and stress of it all.
Politically it really doesn't matter who governs....they all promise the world as they campaign and deliver much less in reality. Ahhh well living in the USA you are also familiar with that for sure. We see it in our news almost every day. I take everything with a grain of salt. Hope you feel better soon.
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