Palbociclib

Hi I will beat this sorry you haven't had a response to your question.

I put Palbociclib in the search box and found a post from about 6 months ago from someone who was on the Palbociclib and Letrozole and seemed to be doing well.  You might want to respond to their post and to the others who responded to that post and see if any of them are still on this forum. CLICK HERE

Also by responding to you I will be bumping you back up to the top of the list where someone who is on the same combo as you might see it.

Wishing you all the best with it.

Hi I’ve been on letrozole and palbo for 2 n half years and I’m doing really well. I was diagnosed with BC in July 2018, then secondary in my liver in the November. I had 2 rounds of fecT chemo then I found out I’m incurable.it was a massive shock.

After I found out they changed my treatment plan to palbo. I do have a couple of side affects which is joint pain. And sometimes my mouth breaks with ulcers, which the hospital will give you mouthwash. But after been on the treatment 6 months my liaisons in my liver reduced by 50% and now my cancer is stable and sleeping. Hasn’t spread or grown since. Hope you don’t get any side affects or there minimum. Wishing you all the best Nic  

This is really encouraging Nic; thanks for posting! I too have just started on pablociclib and letrozole, so I hope we will all be able to get our beasties to hibernate!

Oh wow, thank you for replying back. 
ive been on it 7 days now . I thought it would be worse but I’m actually coping really well. 

Hi, I’ve been on that combo for around 18 months.  My bloods were bad first few cycles of palbo so I had some delay but I’ve tolerated it really well.  I’m fit, active and pain free, in fact I forget I’m on them most days.  

I find taking my meds at night work better for me, mitigates any daytime side effects.  Letrozole can cause stiffness and joint pain, some ladies find changing brands help, as I did.  I was advised by a fantastic specialist nurse to drink loads of water, keeps you hydrated and flushes out toxins, so I try to aim for 2 litres a day.   Hope that helps, it’s scary at first. Axx

Hi

I am approaching 3 years on this line of treatment and latest scan still stable. Side effects have been tiredness and aching joints but all manageable from my perspective. Have reduced work hours over last 12 months and am planning on early retirement soon to start living life after lockdown for me 

hope this helps and good luck with your treatment.

Hello

Started this treatment may 2021... cancer marker dropped from 109 to now 55 cancer growth appears to be stable which is great. 

Side effects for me is mouth very sensitive have to be careful what I eat and sores.

Tiredness ...  so sometimes have to slow down.

Joint and muscle pains again can vary but manageable 

Over all I am ok managing the treatment well.

I have heard some amazing sucess with this drug hope it helps you as well.. good luck.

I have been on the palbo a nd letrojole for 11 months. I find my mouth is slimy and I use mouthwash to freshen up otherwise I seem to tolerate it very well. I came off it for a month as I had a mastectomy as the cells in my chest wall which was also affected had reduced enough for me to have the op. I am now having radiotherapy to clear any wandering cells but I am still on the meds as the breast cancer had also affected one of my lungs. I am looking forward to a more normal life even though I will be on meds indef.   to clarify the palbo and letro have given me a chance with very little side effect. Hope you have as good an experience as I have. 

I've been on both since Feb.2021, plus the bone strengthener Zoledronic Acid. I think Palbo is the hardest hitter re side effects.
My Prof said the Letrozole side effects could take months to show themselves and would mimic menopausal symptoms - well I didn't have any of them at the time. He said well you may now I'm afraid (in good humour, he is a fantastic consultant). To date I haven't felt at all menopausal, not sure fatter midriff counts.
My hair is most definitely thinner, but nowhere near hair loss, just a lot thinner.
Fatigue (I've stopped saying tiredness, it does not convey the real story) is my main problem. My energy levels drop every afternoon, over a cliff edge I usually say. I can be in bed and asleep in 2 minutes, but usually wake after about 90 min, a bit groggy for a while, then a lot better. Fix dinner (to take the Palbo with food), miss half my tv shows snoozing, then bed... then repeat.
The fatigue has its own effects, brain fog, problems concentrating, etc. It has been difficult WFH all year. I was put on reduced hours some months ago, but the fatigue still gets me. I am hoping to retire soon and I really hope taking work stress out of the equation will be an enormous help.
I have aching joints, but have had mobility-reducing back problems for 40 odd years, so very hard to tell if treatment related. My hands are tight and sore each morning. I think for me that is stress.
All in all I have had side effects at the milder end of the spectrum - so it is possible that you may not be too badly affected.

Hi Sue, I hope you dont mind me asking about your mastectomy.  I've been newly diagnosed breast cancer that has spread to Sternum.  I was orignally going to be looking a double mastectomy, but I'm now going to be on same as yourself and told no surgery. I would still like to have surgery if possible.

Who decided you could have the surgery, how long had you been in the above treatment before your surgery? Do you know the size on your chest wall was and how much it reduced by?  

Thanks.