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Palbociclib

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Member

been on palbo and letrozole since april 2018 minimal side...

been on palbo and letrozole since april 2018 minimal side effects on lansoprazole for nausea stomach discomfort since may 2018 apart from that  slight fatigue and thinning hair but still working 20 hrs . TAke astragalus for help with immunity as I read on American site it had helped some people as Palbo has been available in  America and Canada for over 5 years also take turmeric the one with circumin and black pepper both available at health shops. Only missed 2 treatments due to low neutrophils this only delayed treatment by a week. 3 monthly scan show this stable have secondaries in lung pelvis and base of spine also tumour in breast has shrunk too. Hoping you get on okay with your treatment . love and hugs LIZ X

Member

Re: Palbociclib

Hi just started my first cycle this week of Palpociclib full dose and anastrozole 1mg.  Really anxious always have refused any treatment or therapy expect radiotherapy 23 years ago now have no choice but to accept some treatment!

 

I am trying not to think of the meds I am taking and especially of the possible side effects as I am still working and taking tube to the City everyday which has been unbearably stuffy recently more so than normal and worried of infections!

 

Still staying positive and looking forward to reading everyones experiences as I have joined today.

 

Member

Re: Palbociclib

Hi all 

8 unfortunately did not even finish my first cycle of Palbociclib due very sore lips, so  oncologist told me come off straight away I was the due to have radiotherapy on neck and skull and wanted to get that out of the way before we considering me going back onto it maybe on Lowe dose. However after my radiotherapy I had bad week of not very well one day in bed all day nearly af A&E sickness head aches feeling sick now lost. My taste buds for. Few weeks. So my oncologist said she wants this month to be well. Month where I get my. Calcium. Up. For bone drug treatment and just generally be well.

 

Xx

Member

Re: Palbociclib

Hi now on cycle 18 of Palbo and Letrazole doing really well except for acid reflux xx

Community Champion

Re: Palbociclib

Didn’t initially tolerate the Palbociclib as my neuts kept crashing and I picked up anything and everything. So I would suggest staying well away from any source of infection towards the end of the cycle. It also made me deathly tired, so I had to adjust daily routines to cope. I am now on the lowest dose, 75mgs, and on a short cycle, 2 weeks on and 2 off, and it’s worked. Mets are stable, energy levels up, eating and sleeping well. Still a nightmare in the winter with chest infections....which is where my mets are. Be positive and don’t give up. X

Community Champion

Re: Palbociclib

Hi blueash, I was on palbo and letrozole from January 2018 for bone Mets. I tolerated it well, just fatigue and some hair thinning. It kept the bones stable but unfortunately it spread to my bowel and had to stop in Feb this year. Oncologist had hoped that I'd have at least 2 years on it. 

 

Hope it works well for your relative. X

Community Champion

Re: Palbociclib

Hello everyone,

 

A relation of mine is about to start Palbociclib and letrozole tomorrow. She had her original diagnoses 13 years ago and now has secondary skin lesions (not strictly mets) to the same area and under her arm. She could do with some positive information.

 

Although I have a  bit of knowledge from my own journey that is limited to chemo, cold capping and Herceptin nothing which applies to her. Anything I can bring to her attention?

Community Champion

Re: Palbociclib

Bumping up

Member

Re: Palbociclib

Hi Ladies.

I am on Ribociclib, which is similar to Palbociclib.

I have been on this medication since April of last year when I was diagnosed with Secondary Breast Cancer.m (bony Mets) It has been well tolerated, although I had an initial melt down about taking them. 

Neutrophils have been around 1 4 to 2.1and apart from a little soft stool sometimes it has been okay.

I have been back to Greece 3 times since diagnosis and honestly had a great time.

Looking to go back to work, although may have to have a rethink, as I am an oncology nurse!!.

All you Ladies give me hope and strength.

Lots of hugs.

Gina 

 

Member

Re: Palbociclib

Would you consider trying astragalus and or turmeric I got info from american sites where it has been available for a few years I know oncologists dont hold much faith in supplementsbut it has been ok for me. Hoping you get good results, Im on cycle11 and things stable.

Member

Re: Palbociclib

I am fascinated to read all your expereinces with Palpociclib. I have been taking it with anastrozol for about 12 cycles. I do expereince low neutrafles at times and have to extrnd the rst time between doeses at times. This is very up and down, now been reduced to 100mg daily as consistant ly low neutiafiles, .8 and lower at times.

My hair has thinned and I am more prone to colds etc (as an ex teacher i never got ill as built up a good immunity to everything) and I get tierd quickly, this is the hardest to manage as I like to be on the go and hod to change my life style signifiacanlty. I was 53 when diagnosed with Secondaries. I orignally had breast cancer when 31 and the doctors did not believe I had a breast cancer..........! 

Keep smiling everyone, we just need to adjust how we do things... jot always easy, but worth

Member

Re: Palbociclib

Thanks for the information. New to forum and hadn't spotted relies were going to spam folder. Off treatment at present as too unwell. Liz

Community Champion

Re: Palbociclib

Hi Liz, I bought Astralgus 4 months ago after being on the USA site. My Onco hasn't found any research that proves it's effective . He doesn't object to me taking it, but as I have had three chest infections out of the four months Ive been taking it I think he's right!

i also take Circumin supplement , which is the active ingredient in Turmeric. Again, there's no medical research / evidence to prove it works. But.....given the situation we're in, and if it's not harming us, and you've checked with your Onco , why not? X

Member

Re: Palbociclib

I did some research on american and canadian bc support sites and some people on palbo use astragalus to help with white cell count and neutrophils have been taking this one daily since may 2018 and counts have been okay on 125mgs palbociclib I get it at Holland and barrett and it is also available online I find it easy to tolerate and have always managed to stay on my cycle of 3 weeks on week off since June only had second round delayed for a week,started pablo in April and started taking the Astragalus in May. Dont know if this is of any help also wondered if anyone uses or is thinking of trying Turmeric?

Community Champion

Re: Palbociclib

Hi Tiny Tears, I've been on Palbo and Letrozole for over a year now. I don't tolerate the Palbo very well as my neutrophils tend to crash. My Onco ( and I) have worked hard to keep me going, and I am on 75 mcgs, and my cycle is two weeks on and two weeks off. My neuts tend to be low around the second week, and it's not unusual for them to be knocking on the .9, but by the end of the two week rest period they normally manage a respectable 2. Fatigue is now kicking in, as well as me suffering a chest infection every month over this mild winter. I'm hoping this cold spell will eradicate a few germs. I'm 72 with two mets in each lung. They have all shrunk on this treatment, and I am currently classed as stable. My Onco is delighted with the result , and with me, and I have finally been given the go ahead to holiday in foreign parts. Most of my holidays so far have been in hospital! Yay me! 😎✈️

Member

Re: Palbociclib

Hi on round 10 of palbo 125mgs with letrozole and denosumab only missed second cycle due to low neutrophils. Have had two ct scans  (every 3 months) which show stable results and shrinking of both tumours in chest and 2 out of 3 in pelvis and spine. Having another ct next week so hoping for continued good results      

Member

Re: Palbociclib

Hi all,

 

First time to the forum. Similar to others been on Ibrance / Letrozole and Zoladex for 5 rounds. All good, just a couple of time slight delay due to neutra's. Hair is still thick, a little shedding, nothing that anyone would notice.

 

I am 51 with lung mets.. having days where I am up and then down. Keen to hear from others how long they have been on Ibrance or similar? 

 

Smiley Happy

Member

Re: Palbociclib

Im 43 and on the same. Hot sweats make me feel like my heads gonna explode lol.
Im positive and i keep tabs on coppafeel founder kris. She is 10 years in with secondary. So there is hope, n medicines keep getting better. Lets stay strong togther. Much love
Member

Re: Palbociclib

Im on imbrance, zoladex n letrozole, hot sweats coming thick n fast feel very tired, n itchy, but so sickness. Secondary breast after 10 years. Such a shock. On the tumeric lemons vit c to keep me bug free, that n garlic n good foods. My white cells are a bit low at 1.98 but higher than the first round, just finishing my second round tomo. Fingers crossed they stay level. PMA all the way ladies. Much love
Member

Re: Palbociclib

Hi Sally, I'm not a big help because I've never been on a different cycle to the 3 on/ 1 off. Luckily, after 33 cycles I haven't had to miss any weeks apart from a bad flu last January.

What I was going to say is that I have read anecdotal evidence on a U.S. Forum that reducing the dose further to 75mg has still given good results. They have been using Palbociclib for much longer than us so it might be worth a discussion with your Onc? 

Member

Re: Palbociclib

Hi. 

I am interested to know if anyone on here is doing a different palbocyclib schedule to the 21 days on 7 days off. I know there is currently a trial in the US seeing if a continual 5 days on 2 days off works better to reduce neutropenia, which will report on its interim findings next year.  I started on Palbo 13 months ago and had the dosage reduced to 100 after about 5 goes, because my neutrophyls were consistently low.  This last cycle I have been feeling grotty nearly all the way through rather than just at the end. I had a FBC blood test (for the dentist) on day15 and they were already only at 1.13.  I will ask my oncologist what she thinks about changing the schedule, but tbh I dont have much faith in her,  so am thinking of trying the 5/2 one for a month anyway to see if it improves things.

 

Thanks

Sally

Member

Re: Palbociclib

Hi feelthefear, I hope you had a cool time in Spain. I decided not to have the flu jab, touchwood still doing ok. When I was at my secondary group pain management palliative nurse said if I've never had flu or bad colds & more important my wife has it not too. So I'll make sure I keep away from hidden dangers as best I can. I think if it was already in my system before my cancer came back I would have had it x
Member

Re: Palbociclib

Hi mags.
I had mine two weeks ago, then three days later flew to Spain. No problems at all. My oncologist advised me to have it on my week off the meds.
Hope you’re doing well.
Member

Re: Palbociclib

Still here ,thanks for that. I've never had a flu jab in my life, so yes I'm worried I could have a reaction. You have been helpful, I went through where I go & how I make sure I have my sanitizer, friends avoid me or tell me to stay away if they aren't well,which is sensible. My wife has had her flu jab, which my oncologist said was more important, because if I was going to catch it from anyone it would be her. My gut feeling is saying not to have it. You said you're on your 33 palbociclib, that's brilliant & encouraging . Thanks for your help it's much appreciated x
Member

Re: Palbociclib

Hi MagsHicks, are you worried that the vaccination or that possible flu might set you back? The flu jab last year wasn't very effective, I had it in November and got flu really badly after Christmas so I'm keen to avoid that this year!

The vaccination itself is safe, it's not a live vaccine but I hope it works this year....I joke that NHS got the economy version that only targeted 1 strain!!

Im on cycle 33 of my Palbo trial, will be having the jab but I'll also avoid crowds, late nights, getting tired and anything else that might hit a weakened immune system. I'm not sure if I've been helpful but I hope so.

Member

Re: Palbociclib

Hi again sorry to keep picking your brain. But I have just finished my 8th cycle of treatment, touchwood still doing ok. I'm in a bit of a quandary, I've been offered a flu jab, I'm not sure whether to have it. My oncologist said my choice, it might give some protection, but might give none. I have a fear of undoing the good work so far. Help, thoughts please x
Community Champion

Re: Palbociclib

Hi Mary Anne, the chief Onco in my hospital exhorts us secondary girls to get our flu jabs ASAP every year. Too easy to end up really really poorly, he says. However, just check it is a dead vaccine being used ( which it is in uk) What country are you from? X

Member

Re: Palbociclib

Hello ladies, I am new to this group. I was diagnosed with stage 4 breast cancer nearly 3 years ago. My original treatment consisted of radiation treatment followed by letrozole and Denosumab for my bones. After 2 years the letrozole stopped working and I developed anothe 2 tumours ( already have 2 in my spine) . Because I am a private patient I have been put on a combination of Palbociclib and Flasodex. For those on this treatment you know that means your white and red blood count I will be lowered. 

Niw this is the point of this email and I would be interested to hear from those UK residence on this point. I am 64 my white blood count has been too low on one occasion that my treatment has been delayed once but my GP said I don qualify for a flu jab. Has anyone else experience this . 

‘Good luck ladies , it isn’t easy but there is life in this old dog yet 

Community Champion

Re: Palbociclib

I was put on zoladex, palbociclib and Ibrance all on the same day and zometa infusion a month later.
Member

Re: Palbociclib

P.s. I was given a zoladex injection, then a week later I started letrozole and two weeks after that palbociclib.
Member

Re: Palbociclib

Hi Amy. So sorry you’ve had to join us.

I had a year after my initial diagnosis before I found out it had spread to my liver. I can’t inagine how difficult it must be to find out your stage 4 straight off.
However you’re feeling now, I can promise you it does get easier.
There are ladies living very very long lives with bone mets.
I’m on the same combo as you. I’m 44 now. I’m half way through my 3rd cycle of palbociclib and honestly I’m tolerating it very well. The worst thing for me seems to be the zoladex and letrozole. The hot flushes are a nightmare. I’m also very tired around lunchtime.
I haven’t changed anything. I’m still going about my normal business, socialising etc.
My wbc has been low since cycle 1 but I’ve still been able to have my meds. First scan to check if it’s working is next month.
Let me know if you have any questions. X
Member

Re: Palbociclib

Hi, I'm Amy and have just starting out on this journey, 39 and straight to stage 4 with bone mets. I had 1 cycle of FEC and lost most of my hair but now the receptor status is back the plan is zoladex, letrozole and palbociclib. I had the first zoladex 10 days ago. I've been told to start letrazole and palbociclib 4 weeks after the zoladex- was this the same for you ladies?
Community Champion

Re: Palbociclib

Mags, definitely try to stay germ free while on Palbo, especially at the end of your cycle when your neutrophils will be low. I don't tolerate the drug well, so I can tell you all about raised temps and snotty colds and hospital admissions! I go from sniffly to hospital in 48 hours if I'm not careful. I have my GP on speed dial for anti biotics!  Stay away from crowds, use hand wash, and stay warm and well wrapped up out of doors - these are my top tips. X

P.S forgot about the Manuka honey which is ace for sore throats , and the tea tree toothpaste which gets rid of mouth ulcers. Just little side effects for me of low neutrophils. 

Member

Re: Palbociclib

Ok back again, hopefully sorted login problem.
First thing want to say is,thanks to you all for helping the process that has allowed me to have palbociclib without having to pay for it.
What concerns me is if I catch a cold or virus from anyone, can it knock me for six quite quickly. Touchwood managing to stay bug free at mo😊
Member

Re: Palbociclib

Hi thanks for comments,when I can figure out how to stay logged in, I will be back. Using a temporary login at mo.
xx
Member

Re: Palbociclib

Thanks for this, I'm having problems which I'm trying to sort with logging into the website. I have to get on with temp one from breast cancer care,waiting for someone to ring back 🙄
Member

Re: Palbociclib

Well explained Kate. Thanks. X
Highlighted
Member

Re: Palbociclib

Hi Mags, sorry you’ve had to join this side of the forum, and hope your treatment goes well for you. It’s no secret on here that I’m firmly in the no processed sugar camp, and firmly believe in omitting it, or cutting down as much as possible. While it’s true, all carbs will be converted to sugar, the type of sugar is important because it affects the speed it’s released into your blood, and this is greatly increased with processed sugar as opposed to natural sugars, where absorption is slowed down. Fibre is very important here as it greatly slows down absorption, making most natural sugars slow release, therefore insulin is released more slowly into the blood and the “insulin spikes” are lower or avoided. Whereas insulin is instantly released with most processed sugar, which has nothing in it to slow it down. These spikes generally put extra work loads on other organs, which are usually having to cope with the added pressure of treatments and medications, so probably need all the help they can get! I’ve always said I don’t think lifestyle changes will cure me but I do believe they help to keep you in a better position to deal with whatever this disease throws at us! I agree there are many people who have followed really healthy diets who still get cancer, but diet is only one of many factors involved but is one we can help. To be fair, where do you ever read processed sugar is good for you, or fruit and vegetables are bad?!! So yes, I believe sugar does help cancer to party! Kxx

Member

Re: Palbociclib

Welcome to the forum nobody wants to have to join mags. Great that you seem to be coping so well with the meds. I hope they’re doing their job for you. 🤞

The sugar thing is a tough one. I think all cells good or bad feed off glucose. If you stop eating normal surgery things then apparently the cells will get it anyway by converting it from other things like bread.
Some ladies on here swear that avoiding sweet things is one of the keys to starving cancer. Others who have been living for many years with secondaries say they haven’t avoided sugar and are doing very well.
Even scientists disagree with each other on this one. So who knows. I certainly don’t. It’s a very sticky subject on here.

Good luck with your treatment. Xxx
Member

Re: Palbociclib

Hi feelthefear,I'm a newbie to the forum. I've found it really helpful & supportive reading the posts. I'm on letrozole & palbociclib, just finished my 6th cycle. No problems as yet, also I'm on calcium injection & tablets since the breast cancer came back to party in my bones in my spine. All bloods normal apart from marker going up slightly, which my great oncologist said not to worry about. Does sugar help cancer to party? I never knew.🙄
Member

Re: Palbociclib

Morning Annie.
I haven’t been told to avoid anything yet. My nuets have already dropped to 1.5 following my first cycle.
I feel absolutely fine though. Apart from the letrozole aches and pains.
I think we have to be able to enjoy our lives while we’re going through treatments so embracing tiny snotty noses should be mandatory. 😀
Excellent news about the lung mets. How long was it before you had shrinkage? I’m really hoping for the same with my liver mets but have convinced myself I can feel them. Xxx
Community Champion

Re: Palbociclib

Hi ladies, I feel as though I'm hanging in by the skin of my teeth! The Palbo is crashing my neutrophils and I'm not recovering very quickly. I started in November on 125 mcg and had a two week hospital stay, and the dosage has had to be reduced twice, so I am currently on 75 mcgs. Also the rest  'week' has been extended. Starting today we( me) are trying two weeks on and two weeks rest. Neutrophils have managed to creep up to 1, so I am not very confident about the outcome. I'm sticking it out, though, as all four of my lung lumpies have shrunk. My energy levels are recovering, but I am advised not to swim, gym or anything where I am open to infection. Does that include four loving grandkids?!  Love to all. X

Member

Re: Palbociclib

Hi. I started to shed hair within week 1 of palbociclib. So I shouldn't' worry. My hair was really thick, now much thinner but wig not needed. Keep smiling.

Member

Re: Palbociclib

Thanks for the reply riversidedawn. Here’s hoping I’m the same.
I really love my hair and it’s just starting to get to a decent length as I had it cut very short for chemo.
I’m really mourning for my lost boob lately knowing that reconstruction is now not an option so to lose my hair as well might tip me over the edge. 🙄 x
Community Champion

Re: Palbociclib

I'm on my 8th cycle of palbociclib with letrazol and can report zero hair loss. I also cold capped through 14 rounds of fec-t and kept most of it.
Member

Re: Palbociclib

Hi Chris.

I’ve just had my initial two week blood test results. My wbc is slightly low, though I been told it’s normal and nothing to worry about.
How has yours been?
Member

Re: Palbociclib

Hi Chris.

I’m only two weeks in to palbociclib but all well so far.
Apparently sugar feeds cancer. Saying that I’ve just been on holiday for a week and ate desserts every day so I’m not doing to well at avoiding it at the minute. 🙄
When did you start shedding hair? I’m really hoping not to. I cold capped on chemo last year and managed to keep most of it. The tiny bit I did lose is just getting to a decent length.

Best wishes to you too.
Member

Re: Palbociclib

Hi feelthefear

How's it going with Palbociclib? .........well I hope. 

I noticed you were avoiding sugar, what is the thinking behind this?

Going through 2nd cycle now, all well apart from shedding a lot of hair.

Good Wishes.

Member

Re: Palbociclib

Hi feelthefear

How's it going with Palbociclib? .........well I hope. 

I noticed you were avoiding sugar, what is the thinking behind this?

Going through 2nd cycle now, all well apart from shedding a lot of hair.

Good Wishes.

Member

Re: Palbociclib

Yeah moijan, I think in an age where there’s less and less money being spent on proper journalism, it’s always important to fact check stories wherever you can.

It’s a lot cheaper to twist something out of a bit of research and make a headline grabbing story than to actually investigate and research one.

I’m just relieved I don’t have to give up bread. 👍