I am in the very lucky position of having 'no measurable disease' for which I am truly grateful. However I now have a decision to make. It is important to me to visit the hospital as infrequently as possible. I am currently on Letrozole, Ibrance & Denosumab. I have always been borderline with neutrophils so my Ibrance has been somewhat intermittent as I have had to take time off frequently. I have finally got them to reduce the dose to 100mg (have been asking for 75mg). I don't know how the blood count is faring on 100g yet.
For as long as I am on Ibrance I have to go to the hospital bi-monthly as a minimum. If I choose bi-monthly, they will change Denosumab for Zometa which involves a canula apparently (only because Denosumab is not available in a 2 month dose). I am considering visiting the hospital quarterly, giving up Ibrance (although I have no particular side-effects other than a bit of fatigue and the eternal neutrophils problem) and just going with Letrozole & Denosumab. However, in the UK, if you give up Ibrance you can never go back to it, they simply won't give you it again. Am I bonkers to give up Ibrance when the stats say it prolongs survival? I do lots of other things which I believe help enormously from meditation to medicinal mushrooms. Being a Libran I am struggling with my decision. I know you can't make it for me but I'd love to hear your thoughts. Sending love to you all xxx
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LouisaMay
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I’m very conservative when it comes to treatment. With this disease I would hedge my bets with anything that might keep it in check. No doubt it is a total hassle to go to the hospital. However, what if the Ibrance is working for you? And you say if you go off it you can never go back on it. Your current status is wonderful, but this disease is not predictable. I’d stay on it. Just my 2 cents. Good luck with whatever you decide
Hi LouisaMay,
I completely understand about going 'round and 'round with decisions...I do the same, probably driving my friends/family nuts! But these are important matters and it always feels to me like a misstep could have very serious consequences...
I'm with Nstonerocks on this...I'm very conservative. I visualize/imagine how I would feel if X happens vs. Y after different decisions/scenarios. This generally leads me to do the most conservative thing.
I'm sure you know this, but Ibrance has been proven to basically double the effective duration of whatever AI it's paired with, so, e.g. w/ Letrzole as first line treatment, the treatment lasts about 2 years on average with Ibrance, 1 year without, with a nice long tail on the curve from women who last much longer...
I don't know how long you have had "no measurable disease" or what your disease was like prior, but I'll mention that I was on Let+Ibrance for years, with widespread bone mets. I gradually improved until hitting "no measurable disease" about two years in. Then the tumors gradually worsened, i.e. beginning the next scan. I'm not saying this to frighten you, but with me that status was sort of the temporary "peak" of a long slow curve.
Is it possible for you to negotiate your need to go to the hospital? If you switch to Zometa, you've got the infusions covered...Why do you need to go more frequently than once every 3 months? Labs? From what I understand, in the U.S., you can do labs virtually anywhere. The tests are the same and they can send out the samples for specialty tests?
Good luck with your decision, I know it's a tough one...so many of them are!!
Be well,
Lynn
in reply to
p.s. I love Librans! Very rational and egalitarian...
Hi Angela,
You are not bonkers! It's understandable that you want to explore all your options before making a decision. Ultimately, the choice is yours to make as you are the one dealing with the drugs and side effects. Like you, I would like to reduce my hospital visits. I would reduce my CT scans from every three months to every four if I could, and will see if this is an option.
Zometa infusions are administered through a cannula. I get mine every 12 weeks. I know some patients go every month for their infusions. I wouldn't want to go more often, so am happy to stick with the current time scale.
Ibrance was never offered to me as an option, so I envy you and everyone else who has been given the opportunity to have that drug. I can't help feeling resentful about being denied that drug, especially as my oncologist admitted that I wasn't offered it due to the cost to the NHS. She didn't want to admit it, but I got it out of her. If I were you I would stay on it as long as possible, but the choice is yours.
Sophie , I have recently read that , in the U.K. , NICE has now approved Ibrance (in combination with Fulvestrant ) for women who have received prior endocrine therapy . This could apply to you , and could be a future option for you ... I would ask your onc about it . Good luck ! x 😘
There is an article about it , dated 2 December 2019 , on the following website :- europeanpharmaceuticalreview.com ‘ NICE approves breast cancer treatment through Cancer Drugs Fund ‘
‘ NICE has approved palbociclib ( Ibrance) through the Cancer Drugs Fund , meaning that women with advanced breast cancer who have already received hormone therapy will now be eligible for palbociclib ( Ibrance ) on the NHS ‘
Thanks for letting me know. I was really upset when I had this conversation with my oncologist and she told me why I had never been offered ibrance. I believe it was approved for use in the UK prior to 2018, which is when I started treatment, and so by denying me this drug it felt like she was giving up on me. Or else, she did not think my life was valuable enough to fight for. She did say that when the time came my second line of treatment would be faslodex, but she did not say I could have it with ibrance. I am still waiting on the results of my genomic test that I had last month. Hopefully that will let me know about any particular mutations I have and how that might influence what future treatments I might be eligible for. At least I have done well so far and have remained stable. I hope that will continue for a long time.
I am 14 months into treatment in the UK with Letrosole/Ibrance and monthly zometa. I also have low neutrophil counts and am mostly 3 weeks on and two weeks off. I was having to have bi-weekly oncology appointments. My google maps has automatically made my hospital my “work”😂. Six months into treatment my Ibrance dose was lowered from 125 to 100. This was a game changer. My oncology visits were reduced to monthly and my level of fatigue reduced significantly - I almost felt normal and wouldn’t hesitate to recommend the dose reduction to anyone suffering with fatigue. As a result I had a fantastic summer full of visitors and holidays. I also no longer needed an afternoon nap. My scan last week showed partial response compared to my usual stable results. That was a good day!💃 With the enteral neutrophils problem I have just started on the 75 dose. I am hoping and praying this will help as it’s a case of “the devil you know”, for me anyway. It is a very personal journey we are all on but given the NICE guidelines there is currently no road back on to Ibrance. Why not try the dose reduction to see how that goes and postpone making your decision?
I was annoyed for you that you have not been supported in wanting to reduce the Ibrance. We are the ones living with our diagnosis and every patient is different. This board has given me the confidence to trust the lower dose will do its thing. If it is important to you to reduce your time spent at the coalface (hospital) you should be listened to. Time is precious 😍
I would never say bonkers but I admit I am baffled why, given your good status, you would give up Ibrance which helps extend the disease free progression you’re experiencing. What am I missing? It does not sound like you’re in pain. Is the primary reason really the inconvenience of the twice monthly visits? You don’t say why that’s the main issue? I understand you may not want to feel like you’re on a “leash” but it is manageable if it’s not hundreds of miles away.
Your question reminds me of a moment as my sister and I discussed our father’s medical pills for Alzheimer’s. His doctor added an anti anxiety medicine to address his significant sundowners syndrome. After 3-4 months with this syndrome manageable, I asked my sister if we should discontinue it. She quite rightly looked at me like I was a dope. She kindly reminded me that this exact medicine had remedied that issue. Dad was calmer and more centered. In other words, my sister correctly believes if it’s working don’t mess with it. It helped with my dad who several years later died peacefully in a nice hospice setting that took good care of him.
I respect you do other things like meditation which help but I’d think long and very very hard before taking this step, especially when it’s working, and the risk of not being able to resume it is high.
FYI my oncologist agreed to reduce my Ibrance to 100 mg and my fatigue greatly improved.
I am in a very similar situation to yourself (in that I am stable on ibrance / letrozole ) with my past 3 CT scans showing no evidence of active disease . My onc wrote to my GP In December ,following my last appointment with my onc , and she said I was doing ‘remarkably well ‘ and she would be scanning me early April ( my last ct scan will have been 8 months by then , and I just had an annual mammogram on my non bc side last month ), unless I had any issues before then . I am a bit of a sceptic/ realist !!....so I was a bit nervous about waiting so long for my next scan . On the positive side... it means less radiation and fewer trips to the hospital ! But maybe you could ask your onc if this is an option for you to cut down on your hospital visits?
I remain on 125 mg Ibrance as so far my bloods have always remained in the normal ( for Ibrance ) range and my side effects minimal . Tumour markers don’t work for me ( I have been 18-22 all the time in the last 2 years of my illness / treatment ). However , if I did have low wbc / neutrophils , I would ask to be put on the 100 mg dose ! So maybe this is a good option for you ?
As regards the Zometa / Denosumab , if you do not want to attend hospital as frequently as at present , maybe ask your onc for an oral biphosphonate for your bones (1 x 50mg tablet Ibandronic Acid each morning with water ) , instead of the Zometa / Denosumab . That’s another option to reduce on hospital visits ?!
Although it’s down to personal choice... I would never stop my Ibrance , just because you are very well at the present time ( and I am lucky like you to be so too at present ). As a couple of others above have mentioned , small cancer cells could still be in our system , waiting for the opportunity to break out ... and we must not give them this chance! I will stay on my current meds as long as I can medically , waiting for the wonderful researchers and medics to come along with something new and even better !
Please talk this through with your onc and I wish you continued good results! From a ‘secondary sister ’ x
Hi Teddielottie, thanks for that, I will certainly look into the oral biphosphonate route, that could suit me very well. Wishing you continued clear scans too...xxx
Ibrance was not around when I was diagnosed and I knew quite a few women who got a long time, over 4 years, on Letrozole. But one problem with a decision like this is that if you decide to go off the Ibrance and cancer progresses soon, that is an invitation to blaming yourself for going off the Ibrance. I don't envy you your facing this decision. Quality of life is important, that's for sure.
You seem to already have a lot of replies but I will add my two cents worth 😉. I have struggled with my neutrophils the whole two years on Ibrance but I would continue taking it, especially if it got me to NED. If it continues to keep your cancer at bay that would be amazing. The bloodwork and scans are a pain but they are our early warning signs of progression and for peace of mind I would go for them as required. Of course this is only my opinion and you must do what you can live with as a decision. Good luck
Thank you one and all for your thoughtful responses, it is much appreciated, especially as my dilemma is a pretty damn good one to have! It is great to know that going to 100g was a game-changer for you Stardust, that helps me enormously. All of your kind comments have helped me clarify my own scrambled thoughts as follows:
1. Having reached 'no measurable disease', I'd really like my old life back please, in which hospitals did not feature. Hospitals (and especially tactless oncologists, never the wonderful nurses) have a bad nocebo (opposite of placebo) effect on me which I have to work hard to counter - makes me feel like I'm on a conveyor belt of doom!
2. I had convinced myself that Ibrance was not doing much for me as my tumour markers always went down most when I was off it for a spell due to neutrophil problems. There is no real basis for this thought. I had also convinced myself that fenbendazole, moringa powder, medicinal mushrooms, meditation etc would keep it at bay indefinitely. Best not risk it, eh?
3. If my cancer progresses in a short time-frame, how much would I be kicking myself if I had closed the Ibrance door before I had to.
I will continue the Ibrance and if I am only visiting the hospital bi-monthly, that is much better than monthly. Onwards and upwards, thank you all so much. Sending you all a massive hug xxx
Sophie, have you considered going to the local papers and kicking up a stink? If according to NICE guidelines you are entitled to a drug, you should have it. The hospital's budget is not your problem.
Hi, I continued on letrozole and Ibance for the past 11 months after I became NED. In Jan. & Feb. I had sever muscle pain at night that kept me up ALL night. Nothing I took or did got rid of the pain. I told my Dr. I'm done with ibrance but will stay on Letrozole. He told me that from clinical trials they learned that letrozole works at getting rid of the cancer but by adding ibrance it gets rid of it faster. I also talked to the pharmacist where my ibrance came from, explained everything to him & he recommended that I should only be on it 6 months to a year after becoming Ned. So since letrozole still stops cancer cells from growing, if there are any, I'm on it plus natural stuff like ginger root. I am not going to live in fear of it coming back. Anyone can have a clean bill of health one year and be told that they have cancer the next. Hope this helps.
OMG, that would be a challenge! I always look the other way when there's a needle heading my way. But 6 monthly would be brilliant, thanks for that.xxx
I don't find it too bad. I relax my arm (as instructed) which helps a lot. They wanted to put it in my belly, I said not on your nelly! I always warm up the little bottle of stuff in my hands first while the nurse is doing other things.
I didn’t know you could have it anywhere else. I have mine in the belly.yuk
Hi Sandra,
You are probably right. It's just that when I keep hearing from all the women on here who are on ibrance I think to myself: "Why can't that be me?" But I am doing very well and will find out more after Friday's CT scan. I hope that more options become available to you as well.
Bonkers ! (jk) Again alot of good information from the group. Since I started Xgeva I am only willing to get it every 3 months (terrified of ONJ) and after 1 year of Stable cut my oncologist visits to every 6 weeks. Something to think about. Hope this continues to work for me and everyone else. Good Luck to you.
In my opinion, I'd stick with the Ibrance, particularly since you have not seen the full results of the lower dosage. And you can always drop to 75 mg if your neutrophils are still dropping significantly. You may find that lucky dosage which may not require the frequent blood checks.
I'm currently on Ibrance/Letrozole and an "occasional" injection of Xgeva. Given that you would be unable to return to the Ibrance protocol, I would be very hesitant to give up this med, since it has been found to have such success in delaying progression.
Good luck making your decision, and God bless you!!
Oops. Well I would but if I need to do I guess. Yes, 4.5 And still going. Thankful that it was approved in February before I was diagnosed in July. I hope you do find it encouraging. That was my intent. and still going. Thankful that it was approved and February before I was diagnosed in July. I hope you do find it encouraging. That was my intent. We are #livingintothecure!
You've gotten a lot of great replies about Ibrance, I just want to chime in about Denosumab vs Zometa. When I was diagnosed in Oct 2017 I had a lot of bone pain and "innumerable bone metastases". When I read my CT and bone scan reports I don't know how I'm even standing! But amazingly once the Letrozole kicked in the pain subsided and I have had no issues with pain or fractures since. I have had Denosumab injections every 2 months since then; not monthly because I was concerned about side effects and wanted to be able to take it as long as possible. Now I get them every 2-3 months. All the research I've seen indicates Denosumab is more effective against fractures than Zometa. So my two cents is stick with that. Wishing you all the best with the Ibrance decision!
Thanks Patty, in fact Denosumab every other month would be fine by me, I just need to the get onc to agree, they don't seem to be all that flexible at the hospital I attend. I'll try though, thank you xxx
Hi again.
I checked with my Oncologist today about the Denosumab being taken 6 monthly. He said we have it more frequently because of its good effects on the cancer in the bone. He wasn’t sure about doseages, but thought we may well have a higher dose as well.
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