Stopping Palbociclib

Former Member
Former Member
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I was diagnosed with Stage 4 breast cancer 7 years ago, it had spread to spine, ribs and pelvis, though not severely. Since then I’ve been taking Letrozole and Palboclib, the latter 75mg, and on a 5-week cycle rather than 4 because my neutrophils never managed to recover with one week off. I have a CT scan now every 6 months, and there’s been no further spread of disease, no sign at all really now apart from some scarring where the bone cells won’t repair. I don’t experience any side-effects apart from getting tired more quickly than I think someone of my age should (I am 73).

For some time I’ve been wondering whether I really need to continue to take Palbo, would Letrozole alone keep it at bay, but whenever I mentioned the idea to an oncologist I was told there had been no trials and I shouldn’t take the risk. However I had an appointment yesterday after latest CT scan (which is all clear as usual) and the oncologist said if I wanted I could go on to Letrozole only with a scan every 3 months. This was a phone appointment, and the next appointment, in 10 weeks time, will be face-to-face so that I can more details before deciding.

I feel generally very favourable to the idea, but would be grateful for any advice or information you can give me, particularly relating to any change of policy or recent trials.

Thanks

  • Hi  

    Thanks for getting in touch with our online community. My name’s Louise and I’m one of the Cancer Information Nurse Specialists here on the Macmillan Support Line.

    It’s good to hear your scans show no spread of disease, and that you don’t experience any side effects from  treatment.

    Research is evolving all the time, meaning treatment guidelines also change. It's important to understand your treatment options so you can make the right treatment decisions for you. 

    However, as we don’t have access to medical records here on the support line we can only speak generally, as everyone's diagnosis and treatment plan is unique to them.

    Trial data suggests suggests that letrozole with Palbociclib is more effective than letrozole alone in in people over the age of 70, however certain treatments may be reconsidered if there are toxicities (side effects) such as neutropenia (low neutrophils).

    We would suggest contacting your consultant or clinical nurse specialist (CNS) for more detailed information. They are there to answer any questions and talk things through. You can ask them how they reached the decision about stopping Palbociclib.

    It can help to share experiences with others in a similar situation. You can find this type of support from our online community breast cancer forum and the Breast Cancer Now forum. You can also find support in your area.

    You could also call us. One of our nurses would be happy to talk things through.

     

    Kind regards  

    Louise, Cancer Information Nurse Specialist  

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

    Our Ref:  LR/HK