Hormone treatment

Hi and a very warm welcome to the online community

I haven't had these treatments so don't have any experience to share with you but I noticed that your post had gone unanswered.

While you're waiting for replies you could use the search facility in this group to look for previous posts mentioning these drugs and read/reply to the more recent ones.

Wishing you all the best

x

Thank you and will do!  

I have been on palbociclib and letrozole since last June when I was diagnosed with secondary breast cancer with multiple mets in liver and omentum.   Soon after the oncologist mentioned peritoneal mets and 2 tumours on the outside of my pancreas.    I was put straight on to this treatment and have had really good results so far.      I have had very few side effects but had to have the dose reduced due to neutropenia (low white cells).     I did have a spell in hospital with sepsis - again due to the low cells not being able to fight infection.    I recently had a small progession in the liver but am continuing with the palbociclib and letrozole for the moment.    The oncologist has hinted that a change of treatment may be necessary.   I see the oncologist every 4 weeks and have scans early 3 months.     IHope this treatment works well for you - it is so much easier than some of the chemos.    Despite a little thinning I still have my hair !    Good luck.

Hi,

Thanks a lot for your reply. It’s really reassuring to hear from someone who’s actually going through the same treatment. I was pretty relieved when my consultant told me that this would be my first line treatment as I was really dreading hearing the word ‘chemo’ (although I realise this may be necessary later on).

Re. your change in treatment - would that involve swapping the palbociclib for one of the other two CDK46 inhibitors?

Thanks so much again for your reply and I wish you all the very best with your ongoing treatment!  

Hi

As last scan following progression showed no further mets they have decided to continue with palbociclib.     I have not discussed the next step yet but will keep you posted.   Hope it all works for you.

Hi good to see this thread I asked about Palbociclib a while back but it was pretty new then so not much info from people taking it. 

I was on Palbociclib but it did not like me and the side effects got so bad that even with a reduced dose I was not tolerating it. However one of my liver Mets shrank even from just a few weeks on it so I was really worried about not having it. 

But I am now on a very similar drug Ribociclib on the lowest dose to help with my tolerance and although it is earlier days my bloods are holding and I have managed 2 cycles with only one trip to hospital since starting them.

I should have scans around June/ July time so hopefully they will be as promising as last time. 

Good luck to you both 

Sorry to hear you had such bad side effects but it also sounds really positive that one of your liver mets shrank so quickly! My consultant said ribociclib and palbociclib are very interchangeable so I hope you continue to get good results on ribociclib but without the crappy side effects of palbo.

Good luck with your upcoming scans!! 

Thanks and I hope things keep going well for you also. 

Hi there,

I have been on the exact same treatment for over a year. The secondaries are in my collar bone lymph nodes but treatment has shrunk these and the disease is stable at present. My side effects are tiredness, some flushing from injections and occasional heel pain. I also get a dicky tummy at the end of my cycle of palbociclib too. Saying that I still manage to work as a nurse two days a week and look after my son and two dogs. I am still reasonably active but have to pace myself at the gym. I hope this is helpful and good luck with your treatment xx

Great to hear you are still managing to do so much I know it will take will power and motivation on your part but hopefully it is a sign of things to come re treatments and prognosis. Your post will give a boost to others. 

I feel that being able to work is a big positive especially when you like your job and are good at it. I managed to keep working full time though the original diagnosis and treatments until the chemo. I had the take time off then as I was pretty much in hospital for the duration. I got back to it pretty quickly though.

Unfortunately I had to give up work last year it broke my heart but I needed to give the treatment a chance to work. The saying what doesn't kill you makes you strong does not apply to Chemo. Since Chemo my bloods are very fragile and I was picking up infections. At one stage I was off all treatment for almost 5 months because of my blood results. Working in schools and home visiting was what I enjoyed most about my job but it put me at risk. I then found that the cancer was on the move again so I made the decision to put all I could into finding the right treatment and giving it the best chance to work. 

Some days I long to be back at work but I am able to visit my grand children more and I still have unpredictable results and severe reactions so I know it is best I do not work. I do however help friends and family out and do as much walking and activity as I can. Not made it to the Gym for a while though. 

Wishing you continued good results and thanks for your inspiration today.