ER/PR positive HER2-
Diagnosed 2019 primary breast cancer. IIIB chemo/infection/mastectomy radiation.
2021 - MBC bone Ibrance /Faslodex
2023- primary Lung Cancer/RT upper lobectomy
March 2024-progression Orserdu.
May 2024- major POD bones & liver
May 2024- to begin Tredolvy.
I felt surprisingly fatigued after dropping Trodelvy ….
Elle713 I’m glad you have brought this question up because I had the worst withdrawal symptoms when I came off Ibrance and anastrozole at Christmas time after having been on for 5 1/2 years. I actually thought my time was up. I even rang the Palliative care unit. I think they call this Hospice in the US. I’m glad I did call him though and they are still with me and there for me if I need them because I have now become a part of their system. The fact that I live alone makes this comfort for me. I remember when I was going through the withdrawals at that time it lasted for about two or three weeks. And I was off all drugs for about four weeks while having a rest and getting ready for the Trial.
Now I’m on Piqray on the trial. I had to had a break of 5 days recently. Besides being a (I want to say) pig, but my oncologist at my last meeting was really rude to me I think, and so unhelpful. But I asked him on that day whether I would have withdrawals coming off Piqray for five days, and he scoffed at me. So I rang the trial nurse and told her that I want her to give him feedback …that I DID have withdrawals. I got headaches, day and night, and I haven’t had a headache for about four months. So I know it was the stopping of the drugs. I used to get a lot of headaches when I was on Ibrance. But now I’m back on the trial my headaches have totally gone.
Thank You. They often make you feel as if you’re “crazy”. I’ve learned, the hard way, to insist they listen to what I say I am feeling. All of these drugs build up - I’m sure our bodies know the difference as soon as we start one and as soon as we stop one. Much Luck!
Elle. Can I ask you how you “insist”? I have been thinking of taking someone with me to the appointments. And to help me pull the Doctor up if they treat me as a subordinate. But I did know the other day he was treating me in a way that was belittling. Am I surprised that myself is that I didn’t stand up for myself then? I know I tried to, but I don’t believe I did enough at the time.
I agree. Whenever I've tried to "insist" the oncology nurse makes me feel I'm exaggerating. She got annoyed when my 10 minute phone consultation went slightly over time, because I'd asked a question about some additional rib pain, told me to go to my GP.
Pour ma part j'ai eu des expériences similaires, j'ai changé d'oncologue, pendant deux ans je me faisait accompagner aux rendez-vous car j'avais remarqué son manque de politesse et d'amabilité lors de mes précédentes visites seule. La dernière fois que je l'ai vu, il s'est franchement montré désagréable et comme j'emettais mes craintes face à un traitement proposé, il m'a dit que si je voulais qu'il me soigne je devais faire ce qu'il me dit et que sinon je pouvais aller me faire soigner seule. Mes craintes portaient sur le médicament xegeva qui provoque des effets secondaires graves comme osteonecrose de la mâchoire, risque de fractures multiples et de nouveau cancer après un an de prise, il y a quand même de quoi s'inquiéter. Comme il me prenait pour une imbécile j'ai décidé d'en changer. J'ai choisi une oncologue femme, car je pense que le cancer du sein leur parle plus. Celle ci est très gentille, il est possible d'émettre une opinion sans qu'elle se mette immédiatement en colère. Bon courage à toutes celles qui se heurtent à ce genre de problème, nous méritons d'être traitées avec gentillesse et respect.
I’m so sorry. I do not speak French. How do I translate this ?
There are many translation apps that people with other languages can use, especially on sites such as this to try to communicate. Many others state English is not their first language, but they try. Deepl, is better than google in my opinion. Hope it helps.
Thank you
done thanks
Oh my gosh….I am so sorry that you are feeling dismissed! I have had 4 oncologists and a radiation oncologist. Some are more “insistent” that things are done their way with little discussion, some are wonderful listeners. I have learned that what they “expect” to happen isn’t what actually does happen to you and you have every right to say that. Your body and its responses are entirely individual…..and no one knows your body better than you do. As a very wise psychologist told me, “you have some teaching to do to make them better”.
Thank you
It's strange you've asked this question. I was taken off Ibrance and Letrozole six weeks ago due to rapid liver progression. Since then I've suffered dizziness, aches and pains throughout my body, reduced appetite, nausea, feeling hungover sluggish, low mood, and been unable to sleep. I was getting worse each day so contacted the specialist nurse who told me I was just being anxious and told me to take painkillers and sleeping pills, neither of which I took. I told her it felt more like some sort of withdrawal/detox but she laughed and dismissed it, she's never helpful. I'm still waiting to start my next line of treatment but the last couple of days I've been much better and haven't had any aches or pains, feeling a bit more back to 'normal'. I think it must be withdrawal from Ibrance and Letrozole. I hope your treatment goes well. Best wishes.
Dear Elle713------I seem to be replying to the wrong posting of yours. You asked me about I Ibrance. Although the oncologist wanted me to take Ibrance, I refused so I'm not much help with that question. I do't believe in taking on two new drugs/variables at the same time. I hope that you got satisfactory answers and are on a good road.
Can you tell me what drug you are taking - I am on anastrozole and they want me on Ibrance low dose- I too am worried about two drugs at same time -
Dear Tantalon.............As of today, I am not taking any cancer drugs. I will be starting Truqap as soon as I recover from chemotherapy and a week in the hospital and the oncologist gives me the go ahead. Sorry! I am no more help. It is all such murky water.
So glad to find others with withdrawal symptoms. New here 7 months into letrozole had radiotherapy but refused chemo. had one ibandronic acid infusion . and less than 2 months into verzenio my liver function went through the roof, taken of it and the side effects were like a raging storm (nurse/practitioner via phone consult very dismissive) after 20 days put on 100 mg of verzenio ( side effects going onto it now) 12 days later stopped as liver function heading high again (side effects coming off just as bad ) ( not sure who run the oncology phone clinics but I did get through to the doctor that these were real and annoying) I am now waiting for a phone consult with my oncologist and not looking forward to it. I don't think in the Highlands I have a choice of consultant (is there a second one on the team). So please forgive this rant as I wade through this period feeling very much unsupported and alone. my darling husband hates me even doing my own research
Holidays( Booking them when you don’t know What sort of treatment you are going to be on)
Is anyone having side effects of the Ibrance, Faslodex and Xgeva? 
Has anyone on ibrance have to stop working? 
Any experience with treatment shrinking liver mets but bone mets spreading?
Paclitaxel, Taxol, Onxal IV chemotherapy treatment anyone? 
