Immunatherapy - Palbociclib

FormerMember
FormerMember
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Hello, hope everybody is coping as best as they can with treatments and Covid 19 being an additional pressure.

I was told by my oncologist on Friday that I would be starting my immunatherapy - Palbociclib this coming week for secondary breast cancer and wondered if anybody was currently on this treatment and how well it was tolerated.  I am to take it with my other cancer drug which is called Exemestane.  I started this particular drug on the 24th March and not really had any of the side effects listed (which is great) apart from insomnia.  

Would be great to hear from anybody as I think I am looking for reassurance more than anything.  I should just stop googling but it is difficult.  My problem is I don’t ask enough questions with my oncologist  as I am scared of the answers.

Look forward to hearing from you.

Take care and stay safe 

  • Hello

    I am on this drug and have been for almost a year. It’s a great medication. In comparison to chemotherapy, it’s a very tolerable drug. Best to pick a time in the day you are most likely to remember to take it, repeat daily. Then get on with living.

    For me I find my biggest side effect on this one is my neutrophil levels, they dip at the end of the cycle and sometimes take a little longer than I would like them to recover. This is combatted with your doctor playing with the dosage and the length of the breaks. Others have little to no side effects, some of us have more. But by and large the forum seems happy with this wonder drug. 

    If you feel up to it, it is also worthwhile doing a search for palbociclib in this forum and you can see what other members have said. There’s also a positive breast cancer stories thread, which I highly recommend. It’s uplifting in what can be a very glum situation at times. Here is a link and I have bumped that thread up so it’s easier to find. 

    https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/f/breast-secondary-cancer-forum/186433/positive-secondary-breast-cancer-stories 

  • FormerMember
    FormerMember in reply to Greenery

    Hello

    You have no idea how much I needed this email from you.  Thank you so so much and I feel much better emotionally as I have had rather a bad day with tears.  It is just great to hear such positivity about this drug.

    i had breast cancer 10 years ago and the chemotherapy was tough but I got through it.  Was also on Herceptin which was very tolerable.

    Hope you are doing okay but love positive you sound by your uplifting email

     Kissing heart


  • FormerMember
    FormerMember in reply to Greenery

    Hello, just wondered at what time of the day you take your pill.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi,

    I’ve been on Palbociclib for 7 months now and have tolerated it well- bloods were a little low this month for the first time so was delayed a week but have bloods again tomorrow so I’m hoping they are up so I can continue-they were just below. Last scan at 6 months showed my bone mets to be stable on this medication.

    I take mine every morning after breakfast around 10.30am-21 days on and 7 off.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jo

    Many  thanks for your message.  I am so pleased that you are doing well and tolerating Palbociclib.  I had read that it can affect your white cells. Very positive and encouraging about your scan.  Do you suffer any other side effects?  

    Look forward to keeping in touch and perhaps supporting each othrr

    Jo xx

  • I take mine around 9.30am with breakfast. Also 21 days on and 7 days off

  • Hi Joe                I havent been on for a while, it was great to hear your bone mets are stable i bet that was a relief.I start Palbociclib today actually so i hope i am as lucky as you and can tolerate this tablet. I had my spinal surgery and all the pain has gone thank god. To think i had been walking around for nearly a year with a cracked and dissolving vertebrea due to my bone cancer it was a miracle i am not in a wheelchair it was so close.This has been why i am so far down the road and not started my chemo,as with the surgery and then having to wait a few weeks for recovery and not to mention the corona virus its now all started lets just hope its not to late.When you had your six month scan did they then tell you that your bone mets were stable and was that all of them? i am really pleased to hear this You keep well and out of the corona virus,s way xx

  • Hi Jodieb          Like you i start Palociclib today the 9th June,i am a little anxious and wondering what the side effects may be.I for one have learnt never to google and ask the question on this forum you get the right info and its not as scary.I will keep my eye out for any messages and i will post my experiances with this drug and if any side effects i hope we both do well and have no terrible reactions to this drug all the best and keep well xx

  • FormerMember
    FormerMember in reply to wino

    Wishing you well too.  I got a call from the hospital this afternoon to say that I am to go to Macmillan Centre tomorrow afternoon to meet with Macmillan Nurse so assuming I will start and take my first pill on Thursday.  

    It it is so reassuring that there are people who are going to be so supportive throughout this stressful time in our lives.  Fingers crossed and will keep you posted on how I am doing.  Have to admit that I was a tad emotional after coming off the phone from speaking to the hospital but feeling okay now and away to paint my nails for hospital visit.  It is the little things that helps. Xx

  • FormerMember
    FormerMember in reply to wino

    Hello, hope all well with you.  Just wondered how you were feeling after starting palbociclib.  I was at Macmillan Centre yesterday afternoon but not starting the pill until next Wednesday - got to get bloods on Monday.  Look forward to hearing from you.  Take care 

    xx