Palbociclib Side effects & Covid

Hi , I’m sorry to hear about your Mum, I haven’t had the drug you mention but I thought I’d do a quick reply before the site goes into read only mode for a new upgrade. One idea I had was for you to put the drugs name into the search bar and it might come up with previous mentions on the site. I had a targeted therapy drug which had a long list of side effects and only had a few of the mild side effects as everyone is different you might find that people have had a range. 

Macmillan have said in a post about the upgrade the following....

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Take care

Hi, I've been on it since January with a break during the worst of the pandemic, and have not had any side effects. 

I also have letrozole, denosumab and zoladex. 

Good luck to your mum. Even the rap sheet for a simple over the counter drug is vast. We're all different. 

Hi

Welcome and sorry you're facing this with your mum. 

I started palbociclib in January and I have personally found it quite straight forward. Everyone has different experiences so I can't say if it will be the same for your mum. 

Re. Shielding - that ends on August 1st so she will still need to be careful but can go to the shop, walk, meet friends at a distance.

I understand the reticence re. Covid symptoms - I was given a three month break during the peak of the pandemic and am now back on the drug.

The routine takes some getting used to and I'm not there myself!

The denosumab can be injected in to the arm if she finds that easier. The first two of those I got minor flu symptoms but then nothing now.

Palbociclib mostly makes me tired and hits my immunity but the hospital keep a close watch and will give breaks and reduce dose if needed. 

Ultimately I find it much muxh better than the intravenous chemo I had first time round as it's much lighter and bar some very slight hair loss (which isn't noticible) - it's very doable.

I take mine with breakfast. 

I understand her reticence totally and whatever she decides is best for her but as someone who hated chemo first time around - I'd pick this as an option every time x

Hi there

 The list of side effects is there to help us and them identify which ones are potentually occurring. They have an obligation to tell us. I started in June and so far the worst thing has been cold sores around day 12 of the cycle.  I am more tired than normal but everything has been manageable and others report the same thing. It might depend on your existing level of health but your mum has nothing to lose by giving it a go. Yes it is scary and we need to be cautious but I hope she does take this chance to improve her current diagnosis.  If it does not suit her they will look for alternatives. For example they reduced my dose because of covid.

Hi

I have been on this since July last year.

I am also on letresole and monthly bone juice.

Side effects are pretty manageable. I have a monthly. Blood test before picking up each new cycle. They won't let you have it if blood levels are too low or too high.

Yes I get tired but thats about it. They have to print side effects but that does not mean that you will get them.

Good luck

I've been on Palbociclib since January 2018, with a few breaks for various surgeries.  My oncologist stopped the palbociclib earlier on in the year due to Covid, because your immune system is lowered.  I was however, only off it for one cycle as my oncologist said the initial concerns they had, had changed. I am currently NED so don't have the same issue as your mum.  But if your oncology team think your mum is well enough to start the drug, I personally would. 

For the side effects, they have to include every SE that people have reported at the various stages of the trials that have been carried out.  Apart from a bout of diarrhoea at the beginning (and this was because I didn't take the tablet with food), I have had no SEs from palbociclib.  All of mine have been from Letrozole. 

Hi- personally I’ve seen loved ones on the IV chemo and have seen those side effects Which are much worse. I’ve been on Palbociclib now since September and I’m coping well -there are much fewer side effects- yes they have to note all side effects but that’s not to say you’ll get them all! Yes everyone is different but from what I’ve read a lot of people are tolerating this drug well with few side effects or with very manageable ones. It’s a targeted drug that targets our type of cancer which is great! This drug wasn’t out when my mum had cancer and I so wish it was because I think it would have helped her a great deal! Obviously everyone is different and at end of day it’s your choice but I’m glad I’m on it and it is working for me! Jo xx

Hi. My wife, just like your mum, was absolutely against going on Palbociclib (Ibrance) because of the list of horrible side-effects. The testimony of two oncologists, assuring her that the vast majority of their patients tolerate the drug very well, convinced her to give it a try. She has just completed the first 2 weeks of her first cycle and as had no side effects whatsoever apart from the significant lowering of her white blood cell counts. The oncologist has said that if "anyone" gets Covid (I suppose that means me or her), she'll be taken off it temporarily, as the white cell counts appear to come back to normal quite quickly after stopping the treatment.. COURAGE ! (and good luck!!)

Thanks everyone for taking the time to message me and put mine and mums mind at rest. She has completed her first round of treatment with bloods taken today in readiness for a consultation on wed. 

She has not had any noticeable side effects thank goodness (perhaps a little more tired than normal, and had the odd bad belly but that could be the belly injection she had a few weeks back) but your advice beforehand was amazing and actually encouraged her to start treatment. 

What an amazing forum this is and I really wish everyone on here starting treatment , continuing treatment or caring for loved ones the best of luck and love to you all.