I'm due to start on palbociclib in a week or so. I've read the possible side effects leaflet but wondering (and a bit nervous) what it's really like. I had a horrendous time on chemo a few years ago (like many others), and hope not to have a repeat of that.
So, looking to hear of people's experience taking this drug.
Thanks
Ian
Hi Ian
I have found palbociclib to be a really kind treatment. I take a tablet once a day for 3 weeks and then one week off. I also take letrozole all the time. I am now on cycle 11. I was started on 125 mg but very soon this was reduced to 100 mg due to low white cells and just recently my dose was reduced yet again to 75 mg. My main problem has been the neutropenia (low white cells) but this is like blood pressure - you feel nothing but the monthly blood tests show it. I have had a little thinning of my hair but only noticeable to me. The results have been good in that the treatment has halted the progress of the mets in my liver and peritoneum. So far so good.
Good luck to you with your treatment - hope it works as well for you.
Patti
Thanks for that Patti, I hope it's the same for me.
Just one question; how many cycles (21:7) is average or is it something i will always have to take with my Letrozole and Zoladex? Am i right in thinking it's like chemo i.e. i had 6 rounds of that.
Cheers
Ian
Hi Ian,
I have secondary breast cancer in the bone - first time diagnosis April this year so everything is new to me so I certainly am not the most 'experienced' and can only tell you what side effects I have had thus far:
I too am on Letrozole and have been taking that since diagnosis - no side effects on the thus far - I find my mind plays tricks don't know if anyone else feels the same. As in no side effects it can't be working - or when if I get the occasional twinge then omg must be spreading. I digress.
I was put on Ribociclib which I understand is similar to Palbociclib - cycles 21:7 - I have only had once cycle so far and during my weeks break following blood test one of the results for liver showed a high score so they wanted to give me another week break, following further bold test it went up even higher so yet another week break and another weeks break had started to reduce score so I am hoping it will be back down next week so I can continue with the Ribo - on a lower dose 600mg at present. I would say that I had not side effects only during my week break I was a little constipated (sorry for being graphic).
I have had one round of zoladex was ok to be honest two day after my legs felt like led but that pretty much went the following day.
Sorry did not want make the reply all about me good luck and hope the treatment is good for you
Keep smiling
hI Ian
I was told I would be on it indefinitely until it stops working. I believe the average is about 20 months or so. After that they would look at other treatments to prolong things.
I started Palbociclib in January 2018 after being diagnosed in October 2017 with liver Mets. Was diagnosed with primary 2 months earlier.
I started on 125mg, which initially was dreadful due to 11 days of constant diarrhoea. This settled down after the first cycle and i remained on full dose until November 2018. In December I had a liver resection to remove my tumour, so had a break from Palbociclib until I recovered. I started back on 125mg in April, and felt shockingly fatigued. I also had severe cystitis and oral thrush. Oncologist dropped the dose down to 100mg and so far Ive felt no side effects whatsoever. I'm now on my second cycle of 100mg.
The usual dose is 21 - 7, but a lady in my support group who is part of a trial, is on 2 weeks on 2 weeks off.
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