Member
Posts: 311
Registered: ‎30-09-2017

Re: Palbociclib

I’m a big believer in lifestyle changes because I genuinely think they’ve helped both me and my mum. She had a rare aggressive oesophageal cancer over twenty years ago and all previous patients with the same had only lived 9 months post diagnosis, as you can imagine swallowing was a major issue. My mum lived over twice as long, and actually died of a heart attack probably due to the effects of the strong chemo, could swallow most foods and wasn’t even taking anything for pain. 

I was diagnosed straight to stage 4, mets to upper spine, October 15, my primary couldn’t be found and there was even a discussion about my mets, it was a biopsy of my lymph nodes which confirmed my diagnosis. Because of this I only started Letrozole towards the end of November 15 but started making changes to my diet from day one (even though I ate healthily before), exercised a little, went to bed earlier (I was a real night owl) and my repeat ct in early February 16 was NED.

I'm not someone who believes all this will cure me but I do believe the changes I made really helped me. I mainly follow a plant based diet, occasionally have meat or fish but eat eggs, avoid all processed food as much as I can, gave up sugar the day I was told I had cancer, but have now re introduced more fruit, initially I limited this, I gave up dairy apart from goat or raw milk in my one or two cups of tea and in the kefir I make, and now occasionally I have goat or sheeps cheese or yogurt. I don’t think all this is necessary but I wanted to do it and think feeling I was doing something helped me...Kate x

 

Member
Posts: 311
Registered: ‎30-09-2017

Re: Palbociclib

I don’t know Christine, it completely baffles me! But look at all the research about the effects of processed sugar and they won’t even admit to that, yet how often do you read anything saying it’s good for you! I’m not on this drug but thought this was interesting, and from a reliable source. Kate x

Member
Posts: 8
Registered: ‎26-07-2018

Re: Palbociclib

Minefield is the word!! My secondaries are in pelvis, sacrum and lung. Had radiotherapy on pelvis and sacrum in March/April , horrible SE's, put me in bed for 3 wks. Am so relieved that no bad SE on palbociclib so far.

 

Unfortunately I am still on crutches , walking very limited. This is the hardest as until a few months ago I did regular 12ml fell walks. But hey how I feel well and an opportunity to find something new.

 

Hope all goes well when your treatment begins. A bit scary at first, they go through all the SE in great detail.x.

Member
Posts: 8
Registered: ‎26-07-2018

Re: Palbociclib

Thanks. Wonder why oncologist and pharmacists don't mention this research. Will try and reduce bread and buns! x.

 

Member
Posts: 528
Registered: ‎15-04-2017

Re: Palbociclib

I tried to post a link to an article on the inspire website stating that xenoestrogens do not interfere with these treatments.

I’ll try again here;

https://www.inspire.com/groups/advanced-breast-cancer/discussion/soy-genistein-and-ibrance-femara-st...
Member
Posts: 528
Registered: ‎15-04-2017

Re: Palbociclib

Hi Christine.
I’m in a similar position. I was diagnosed with secondaries to my liver 4 weeks ago. I started zoladex injections 3 weeks ago, letrozole last Friday and set to start palbociclib this coming Monday. 😳

I’m trying to do my best with diet but I’m finding advice to be a bit of a minefield.

Do let me know how you get on. It would be good to swap tips etc. X

Member
Posts: 528
Registered: ‎15-04-2017

Re: Palbociclib

There is an interesting response to the telegraph article on the American site inspire.com

It’s written by an oncology researcher

https://www.inspire.com/groups/advanced-breast-cancer/discussion/soy-genistein-and-ibrance-femara-st...

I’ve no idea if the link will work, but for anyone worried about this it’s worth a read.
Member
Posts: 311
Registered: ‎30-09-2017

Re: Palbociclib

[ Edited ]

Chris282,

 

Have posted this before but thought it may interest you, if you haven’t already seen it.

 

https://www.telegraph.co.uk/science/2018/01/11/breakthrough-breast-cancer-drug-thwarted-chemical-fou...

Member
Posts: 8
Registered: ‎26-07-2018

Re: Palbociclib

Hi. Just completed 1st cycle palbociclib. Also take letrozole.  Letrozole am, palbociclib pm. Only SE shedding hair, still not obvious to other people. May be more lethargic but who isn't with this heat.  To try and give myself the best 'chance' of a good outcome I've gone dairy free and eating a diet of mainly fruit, veg and protein. If no improvement after 1st scan will go back to eating my much loved cheeses.

Best to all Christine

Community Champion
Posts: 4,176
Registered: ‎01-05-2012

Re: Palbociclib

Bumping this thread up for some newbies.

Community Champion
Posts: 1,051
Registered: ‎21-01-2017

Re: Palbociclib

I've finished my third cycle of Palbociclib, so have had a CT scan with contrast so my mets can be checked. Results tomorrow, so little sleep for me tonight. As per usual, every little ache and pain ( and there are lots!) makes me think they've spread. X

Member
Posts: 25
Registered: ‎04-10-2017

Re: Palbociclib

Great news Dawn. I think you are just ahead of me on palbociclib. I am fininhing my third lot. Nobody has mentioned scans though and I am burying my head in the sand and not mentioning them either.x

Member
Posts: 1,590
Registered: ‎01-05-2012

Re: Palbociclib

Good news Riversidedawn. Glad that palbociclib has worked for you and that the exhaustion has been worth it. 

Bon xx

Community Champion
Posts: 8,341
Registered: ‎26-10-2015

Re: Palbociclib

Wonderful news for you ...let's hope the drug keeps doing what it says on the tin ...hopefully it will be available to more ladies soon once it's proven itself.

Hugs xxx
Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Palbociclib

Great news! I got my scan results after being on palbociclib with letrazol, zometa and zoladex for 3 months ........ all tumours have reduced, no new areas and the worst one in my vertebra is starting to rebuild itself.

Positive boost!
Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Palbociclib

I'm on my third round of letrazol/palbociclib and utterly exhausted. I'm also on zometa infusion and zoladex injection.no idea which is responsible for what side effect!

I have a monthly blood test but this is linked to the zometa so can be at different times in my palbociclib cycle.last month neutrophils were on 0.9 and calcium a bit high but they didn't change anything.

I've got my first MRI since stsrting this routine next week so will hopefully find out if it's working!
Community Champion
Posts: 1,051
Registered: ‎21-01-2017

Re: Palbociclib

Hi you you , ive just finished my first full cycle of Palbociclib at 75mcgms. Can't say I was thrilled to be on the lowest dose , but according to the American web site it makes no difference. My bone marrow was in an awful state even on 100 mcgs. My neutrophil reading was exactly the same as yours on 100 mcgs so I had two weeks rest as well. I was told it was too dangerous to continue, especially with the bone marrow situation. First time I had to have gsf injections to boost the bone marrow. I'm on my rest week now and do nothing but sleep. Catching up on all my missed sleep, I guess! Seeing my Onco next week. X

Member
Posts: 2
Registered: ‎23-02-2018

Re: Palbociclib

Hello Annjej,

 

I was dignoised secondsary last year and I am on Letrozole and Palbocicib. I am in the same situation as you.

My white cell was crashed down to 0.7 first when I was on 125mc, defered two or three weeks and reduced to 100cm, now I am struggled with nertrophils, I has beed defered two weeks now because the Palbocicib has stopped take but  my netrophils was 0.5 last week.0.7this week. It is really depressing.It is going to reduce again.

Member
Posts: 311
Registered: ‎30-09-2017

Re: Palbociclib

Hi Annie, sorry to read you’ve experienced such problems. It did read that way to me, have you tried omitting/reducing what you have and seeing if it helps at all? I now use buckwheat flour a lot, have read it’s more of a grain, I don’t think that was mentioned but can’t be sure. Crossing my fingers and toes for you! Kxx

Community Champion
Posts: 1,051
Registered: ‎21-01-2017

Re: Palbociclib

Thanks for this, Kate. Will check it out. I use rye bread mostly, but that seems to mean we should cut out pastry as well? All wheat based in fact. 🍰🍕🌭🍩🍪

I've been on Letrozole since before my radiotherapy in September, and so far - touch wood - I'm almost SE free. The Palbociclib has, however, knocked the stuffing out of me. My neutrophils crashed on 125mcgm, and I had a two week holiday in hospital. It took over two months to recover from that. 🤕  I also didn't tolerate 100mcgm well - apparently . I felt very low and extremely lethargic. Neutrophils were down to .4 After a two week break I'm on 75mcg , so I need everyone's fingers and toes crossed this time. 🍀

I had extreme nausea when I took the Letrozole and Palbociclib together. I now take the Letrozole at night, and put up with a few night sweats. The Palbociclib I take in the morning with my brekky. The brand of Letrozole definitely affects my night sweats, so I stick with Teva. X