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Palbociclib

114 REPLIES 114
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

Highlighted
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
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. 👍
Community Champion

Re: Palbociclib

Hi ftf that article was very informative and sounds more relevant than the telegraph, glad you posted the link...it explains clearly why we shouldn’t worry...and people on Ibrance May well be worried about this.

 

hugs

 

Moijan

Member

Re: Palbociclib

Thanks for the dates tip kate. And almond butter 🤔 well I love almonds and love butter so I’ll have to seek that out.

Hoping you both have a great weekend. We’re having a bbq tomorrow and it’s forcecast to rain. 🙄
Member

Re: Palbociclib

Hi, Thanks for info. Just been on the Inspire site and got a more balanced view. Jury out I think.

Take Care.x

Member

Re: Palbociclib

FeeltheFear and Christine, thank you both for your kind replies. Medjoul dates are the way to go if you want something sweet! The high fibre content makes the sugars slow release and dates are very good for you, as I’m sure you know. I sometimes put some almond butter where the stone was and it really does taste like fudgey caramel! I’m sure the odd sweet wouldn’t hurt at all, my problem is one or two wouldn’t do the trick, I’d want the full bag, no half measures! Enjoy the sunshine and vitamin d while it lasts. Kate xx

Member

Re: Palbociclib

Hi Kate21.

Thankyou, found your comments really encouraging. I like you believe that diet can possibly improve the outcome of any treatment given. Hope it continues well for you.x

Member

Re: Palbociclib

Kate, how awful that cancer got your Mam and now you find yourself in your own battle.

It’s fantastic that you were NED so soon after diagnosis. Long may it continue.
I am avoiding refined sugar, but I’d be lying if I said I didn’t miss it now and again and I didn’t even eat that much. I did enjoy the odd jelly or boiled sweet though. X
Member

Re: Palbociclib

Morning Chris.

I hope you can get back to fell walking soon. I can imagine how you miss it. We love walking in the lakes.

Re diet; there is an article on the American site inspire.com on the secondary breast cancer forum where an oncology researcher discusses the research that was printed in the telegraph.

It’s worth a read. He says there’s absolutely no evidence to support what the story states. I tried to post a link but it won’t allow me.

If you google ‘soy genistein and ibrance study inspire.com’ you will find it.
Can’t see the point in having to give up bread too if there’s no need.

Ibrance is the American name for palbociclib. It’s worth signing up to inspire as there’s an absolute wealth of info regarding these drugs on there. The American’s have been trialing them for years.

I do try to avoid refined sugar.
I can’t wait for Monday to arrive so I can just start the palbociclib. I did really well on fec-t last year and apparently it’s nowhere near as bad as that, so I’m really hoping this is the case.
I cold capped on chemo and kept 99% of my hair. I really hope I don’t lose it now. 🤞 x
Member

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