Palbociclib (IBRANCE) any one had dose lowered

Hi Tea for Two,

Hello and welcome - you’ve come to a good place for advice and support .

Hopefully someone else will let you know their experiences too as I am just behind you on cycles of treatment, being midway through my 2nd cycle. I was diagnosed with Secondary BC in the Bones two months ago.  

I am genuinely sorry to hear you’ve had Sepsis. I am on 125mg of Ibrance/Palbociclib and my Onc will review the dosage at my next appt. It hasn’t been a walk in the park but most days have been ok although today has been spent sleeping mainly. From what my nurse has said to me, it’s important to keep the treatment going and if bloods are down and in your case you were v ill. So on that basis it sounds like to have the dose lowered is better than your current dose with delayed cycles of treatment.

I’m a newbie to this so hopefully others will give feedback too.

My very best wishes to you xxxxxxxxxxxx

Hi Ruby2016

Thanks for replying, I'm not great with tech so wondered if I'd done it right.

Yes my nurse said better to lower than cancel cycle so hopefully the lower dose will be ok.

I was ok on palbo until I started coughing.  1st cycle went well bloods little low but as expected so obviously my levels dodnt recover quickly in the 7 days off.

Never mind onwards an upwards.

Hope you feeling ok. Rest when you can

Hi

I was on palbo for 18 months and did well on it despite 2 dose reductions, ie 125, 100 and finally 75.   The main problem was the neutrophil levels but they improved considerably with the dose reductions. 

I hope you do well on this treatment as it is very doable with minimal side effects.

Hi Patti48

Great to hear someone else has had reduction an no adverse effect.

Have you stopped palbo now. I hope you are well an wish you all the best.

Unfortunately had to stop the palbo a couple of months ago due to a progression.  However it worked well for 18 months and I hope it works for you for a long time x

I’m on 75mg ibrance as couldn’t tolerate higher doses. I have 2 new friends both on letrizole and 75 mg ibrance and they’ve been in it for 2 and 2 and a half years with stable scans. Good luck to us all that it will work for years. 

Hi Angells 1111

Sounds selfish but it is good to hear that others have had dosage lowered as they cant tolerate it.  My oncology team are not very forth coming when asked very direct questions,

I'm a very direct about my cancer as felt when I was originally diagnosed I just agreed with everything.  It was much later on I found out not everything I went through was necessary.  So with this recent diagnosis I'm like...why what else is there etc etc...

Anyway like you say, lets hope this works for years.

Good luck to us all x

Hi Tea for Two,

Just to update you on my ‘journey’ with Ibrance\Palcociclib dose. My next cycle is due on 3rd February and it looks v likely that my dose will be reduced. Had a blood test yesterday and my Nurse rang to say my neutrophils are low again. Unfortunately I have got a heavy cold at the mo so I knew I felt run down and had been keeping tabs on my temperature.  Shortly after her phone call today, I checked my temp, it  was high, rang the Unit and went in for  IV antibiotics. Also had a chest x-ray done and went home with a penicillin prescription. I had 5 tablets left of the Palbociclib but told not to take them.

Onwards and Upwards! xxxxxxx

Oh I'm so sorry Ruby2016

I know how you feel, disappointed an yet unwell enough to continue at same level.  Even with antibiotics keep an eye on temp an if you get chesty. If in any doubt phone your team again incase you need more iv antibiotics...we have ALERT team I would suppose you have them too.

Fingers crossed few days rest in warm with plenty of fluids you will be back on ya feet.

I now know lots of others have meds reduced an doesn't seem to lose effectiveness.  So take it in your stride on this journey.

Sending you Healing thoughts.

Onwards an upwards xxx

Hi Tea for two

I had my dose of Ibranch lowered to 100mg after spending a week in hospital with neutropenic sepsis. Due to urine infection.

I was informed that lowering the dose is a common occurence when taking this as only a minority of people can cope with higher dose and they don't know who will/will not be able to tolerate it so everyone starts off on the same dosage. 

lower dose does work just has my first follow up CT scan since diagnosis and no spread. Yippee. 

Thinking of you

Jo x