Palbociclib fatigue

FormerMember
FormerMember
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Hi,

I have been on Palbociclib 125mg (and Letrozole) since October 2019.  I have tolerated it OK apart from increasing fatigue. I was wondering if anyone has decreased their dose to 100mg because of fatigue and, if so, has it made any difference?   I know from my research that the most common reason for dose reduction is low neutrophils (mine are always low but have never involved a delay in taking the next round of medication). The consultant is happy for me to go onto 100mg to see if it helps but I just wondered if anyone could share their experience.

For information: I was treated for primary bc in 2008/9 and the secondary small tumours on my lungs were picked up by chance in summer 2019 when I had a routine ct for somethings else.

    • I am on the same tablets as you plus infusions.  At first I felt quite nauseous and the Palbociclib was put down to 100mg.  I am fine with the tablets now.  I do get weary but I am 76 so that could be age as well.  I am also breathless but this is under investigation.  My life has changed and I am not doing what I used to do.  I had breast cancer 20 years ago and thought I was cured.  Earlier this year I had back pains and was eventually told I had lesions in the spine and sternum.  The last scan showed that the medication was working.  I have another scan next month.  I hope your treatment works.  Hugs to you.
  • FormerMember
    FormerMember in reply to Lavenderpansy

    Thanks for responding. My life, too, has changed a lot. I used to go swimming and do Aqua Zumba once or twice a week as well as plenty of walking and gardening. Now I find a trip to the shops, a five minute walk away, quite tiring! I am just 69.   I suppose I am lucky not to have any other side effects from the Palbociclib, and that it appears to be doinng the job. Long may it continue to do so for both of us. Best wishes.

  • Hi.  I've been on Palbociclib and Letrozole since October 2021 and then started Zoladex in December.  I had my palbo dosage reduced in December from 125 to 100 due to neutrophils as you mention.    To be honest I've had some fatigue since my chemo courses which were April to August and haven't noticed any increase since starting the tablets.  I try to remain active, am working three days a week, going for walks etc.  I think it's very easy to slip into a lethargy cycle - the less you do, the less you want to do.    Does the fatigue change through the 4-week cycle?  Do you feel you have more energy at any time?  If so then try to do some gentle exercise like walking or swimming on these days and then attempt to continue it throughout the cycle.  

    Best wishes

  • I am half way through my third cycle of pablociclib an fulvestrant and can't yet work out a pattern of good days and not so good ones. The worst seems to be towards the end of week three when I get nauseous and very tired. I imagine this is the build up of the drug. I just about start to feel better a few days before the next round. Anyone else getting this?

  • I’ve been taking Palbociclib 125mg since May ‘21 along with letrozole & monthly Denosumab injection. I have regular blood tests & my levels seem to stay JUST acceptable. My PET scan after the start of treatment was great, activity levels had dropped significantly making the side effects well worth it. The following PET scans have been good with further mild reduction in activity & all scans show no new sights. So long May it last. 
    I’m having to pace myself much more but recently started a Zoom fitness group run by Macmillan ‘Brighter Horizons’. Apart from the name which I can’t help think is a little over optimistic it’s been great. No pressure, very mixed ability group, lots of individual adaptations & with it being on Zoom if your struggling you can just slip out of shot for a bit. 
    I know we’re all different in our responses to the drugs & it’s easier for some than others but I feel it’s beneficial to try to keep activity levels up as much as possible.

  • Neutrophils after round 1 were just 1 but treatment went ahead anyway. Was fully expecting a lower reading at round 2 and I hoped for a reduced dose but they were actually higher at 1.7 so went ahead as normal for round 3. Only thing I have done different is take a couple of spoons of honey (Just Bee) either in porridge or herbal tea once a day. Not sure if it is allowed.  Diet advice varies. Feeling  OK at the moment but expecting some side effects at the end of next week. So far no real mouth problems, just a bit of hair thinning, mild nausea, and fatigue towards rhe end of treatment.weeks. I was on E/cmf for six months 14 years ago and compared to that I should be grateful that I can still function as well as I am doing. Being 14 years older doesn't seem to have made a difference. Onwards and upwards as they say.

  • Hello been on treatment since may last year and I am the same..  use to run 3 times a week no longer can manage that and did weights..all gone out the window.. I have dogs so they get walked and I have for to be honest some days I just dont want to go but make myself.. normally feel better afterwards..

    I get fatigue but then can't sleep a bit of a pain.. not sure what you can do. But I would suggest you do make yourself get out for a walk each day..the freshair has no bounds in giving me a pick up.

    I do get out of breath..my legs some days feel like they should belong to someone else and ache like mad... worse towards end of cycle.

    My mouth also falls to bits supper sensitive but that to do wirh rads I had on the neck years ago which effected my mouth..

    All joys of the treatment but it had taken my cancer marker down from 105 to 53 and no more noticeable increase so is working and may long it last..

    Don't be too hard on yourself I think it can be more if a mind set. Tell yourself you can do.. make small goals. And be kind to yourself