Struggling with side effects


I’m a male, 36 with a solitary metastasis to T12. I’m currently on zoladex, letrazole and palbociclib, I’ve been on the palbociclib for 9 months.

I’ve been struggling with side effects for the last few months, not sure which treatment is causing it or a combination of all of them. I’ve extreme fatigue at times, nausea, weakness, pain at surgical area etc.

im debating asking my oncologist to stop treatment. I had debulking and cyber knife radiotherapy and so there’s a chance I don’t have any active cancer present. I worry that I’m suffering through these side effects for little benefit as my quality of life is quite poor at times.

does anyone else have experience of choosing to come off treatment?

should I be receiving a PET scan to see if there is any active cancer.

any advice would be received gratefully



Hi Dan

Sorry you are struggling so much, it’s often the side effects from the treatments that we’re on that get to us! If you’ve not had a scan in the 9 months you’ve been having treatment then I would ask for one, mentioning the symptoms you’re having as a reason for getting one. If there’s no active cancer shown from a scan then you could discuss with your oncologist what you should do. Bearing in mind even if we show as NED (no evidence of disease) it hasn’t gone away, it will always be there and will reappear at some point. Secondary Breast Cancer is controllable but not curable as I’m sure you are aware.

You’re not alone in this and what I’ve found is not to put up with things but to ask for scans or blood tests if you feel you need them plus have a detailed discussion with  your oncologist about the results - that’s if you feel you want to.

Good luck

Nicky x

Hi Dan, I had a solitary met at L2 and had surgery for spinal cord compression and fracture followed by cyber knife.  I have had regular scans since then, bone scan, MRI scans and CT abdomen pelvis.  Are you having regular scans and are they stable? That is the key question.   I been stable so far after a year on Abemaciclib similar treatment to palbociclib.  There are some wearying side effects sure and I still have pain at the surgery site which I guess will never go away but I  really want to carry on with treatment as long as I can because without it I am pretty sure the cancer would progress.  The treatment we have had, surgery and radiotherapy etc is pretty full on and it took me a long time to recover from it.  Like Nicky says you have to keep asking questions, asking for scans if you think you aren’t having them often enough.  It is possible you can have your  dose reduced which may help with side effects.  Tell your team you are feeling bad and ask them what they can do.  All the best and I do hope you get some answers and start feeling better soon. 

Hi Dan, unfortunately it is the side effects that get to us, and those you mention are usually from the Letrozole and Palbociclib. I think you need an ongoing discussion with your Onco and Gp. I’ve resorted to metaclopochloride(?) for my nausea, and also codeine for the incidental aches and pains. I.e when I can’t put foot to floor, or get some sleep. Once the pain is managed I found my live normalised. You’re right about the weakness, and some days it’s a nuisance, but I do try to work around it by breaking household jobs down into smaller bits , and asking for help in advance so I’m never stuck. I am currently on a Palbociclib holiday as my neutrophils have gradually dropped to 1 after three months, and the fatigue is awful. My oncologist is actively encouraging me to stop taking this so my quality of life improves, and also because of Covid which I would not be able to withstand. I’m very much in agreement with him on both. It is a very personal decision, Dan, and only you can make it.  I have had long conversations with my Onco and am happy that he has my best interests at heart so I will make the decision based on medical facts. My lung tumours are very small, and are well controlled. Good luck.