65638members
345941posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Palbociclib

Highlighted
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

Highlighted
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.

Highlighted
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
Highlighted
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.
Highlighted
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?
Highlighted
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.
Highlighted
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.

Highlighted
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.

Highlighted
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. 👍
Highlighted
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

Highlighted
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. 🙄
Highlighted
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

Highlighted
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

Highlighted
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

Highlighted
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
Highlighted
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
Highlighted
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

 

Highlighted
Member

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

Highlighted
Member

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.

Highlighted
Member

Re: Palbociclib

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

 

Highlighted
Member

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...
Highlighted
Member

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

Highlighted
Member

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.
Highlighted
Member

Re: Palbociclib

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...

Highlighted
Member

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

Highlighted
Community Champion

Re: Palbociclib

Bumping this thread up for some newbies.

Highlighted
Community Champion

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

Highlighted
Member

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

Highlighted
Member

Re: Palbociclib

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

Bon xx

Highlighted
Member

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
Highlighted
Community Champion

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!
Highlighted
Community Champion

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!
Highlighted
Community Champion

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

Highlighted
Member

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.

Highlighted
Member

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

Highlighted
Community Champion

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

Highlighted
Member

Re: Palbociclib

Don’t know if anything about this has already been posted as I’m not on this drug but I am on Letrozole. Was just looking at a website called Body Soul Nutrition and saw an article that appeared in The Telegraph, or on its’ website, about Ibrance and it said the benefits of the drug were affected by xenoestrogens found in wheat, maize, barley and other staples.Tried but I cannot add the link but if anyone wants to read it, it was dated 11/1/18 and written by Henry Bodkin, titled Breakthrough breast cancer drug thwarted by chemical found in bread, or go to the Body Soul Nutrition fb page as you can read it there. Kxx

Highlighted
Member

Re: Palbociclib

Hi Deedee, I've been on a trial with Palbociclib (see post below) and my experience with SEs has been mostly good. It is not a chemotherapy and in the past I had to stop EC chemo, I felt so ill, so try not to imagine the worst!

Over 23 cycles I've had some diarrhoea, nausea, mouth ulcers and fatigue, but these have lessened and on some cycles I've been fine. I think that most common SE is low neutrophils which will mean lowering the dose or taking breaks but many people seem to do well on lower doses. I haven't had a low WBC so I'm still on the maximum dose.

My saddest SE has been hair loss along with brows and lashes, this has been very slow but I now have a wig.

Good luck with your treatment x

Highlighted
Member

Re: Palbociclib

Hi everyone, new to this forum. Was diagnosed secondary breast cancer to the bones. I was on tamoxifen for four years now changed to letrazole beginning of January. Got denusomab injection and calcium tabs beginning of January. Got rads on neck two weeks ago which has helped with pain.  Waiting to start palbociclib on the the 6th feb just worried about SE as was pretty bad on chemo 4years ago which I may add didn’t work. I’m lucky enough to get this treatment on the NHS.  Deedee

 

Highlighted
Member

Re: Palbociclib

Thank you for the responses and support. I am preparing my advocacy messages for my oncology appointment tomorrow and will see how things go!

 

Thanks again

xxxx

Highlighted
Member

Re: Palbociclib

Hi SML, I don't come on the forum very often but I've been on a trial with Palbociclib ( and another drug) for almost 2 years. As it is a trial I've been very closely monitored with CT scans initially every 2 months, going on to 3 monthly more recently. In US where it has been in use for several years there are many posts which say it can sometimes take a few months to kick in, I started showing a small but consistent decrease from the start.

 

I would be asking the Onc for a scan sooner if you have already gone 4-5 months without one, if I've read your post correctly? Does he look at tumour markers from blood tests?

 

I have had side effects from the trial but haven't been affected by a drop in neutrophils so I'm still on the maximum dose of 125mgs. Hope you stay SE free! x

Highlighted
Community Champion

Re: Palbociclib

Hi SML

I'm new to this too so understand where you are. I've only been on the combo about 10 days and apart from flu like symptoms for the first 4 days (which we've put down to the zometa infusion I started at the same time) I've not noticed any aches and pains .... yet. I will also be scanned every 3 months so it is odd taking drugs and not knowing if they're helping.

Sorry, can't help but would be interested in what your oncologist says on Monday.

Xx
Highlighted
Member

Re: Palbociclib

Hello everyone. I was just wondering if I could get some collective insight into experiences of taking Palbociclib and letrozole.

 

I have been on this combination since I was diagnosed with stage 4, secondary in bones, in September. I am currently in a ‘limbo’ phase – of taking the drugs, but not knowing if they’re working until a scan (in a couple of months, I think). The challenge that I have is that – while desperately trying to stay positive and believe the drugs are doing what they should – I have an increasing amount of pain in the very places where the original scan showed the cancer (right breast, breast plate, neck nodes, etc.) ….. so I find it hard not to fear that the cancer is actually increasing rather than decreasing.

 

I have an oncology appointment on Monday, so am just thinking how to articulate my concerns and what questions to ask.

 

Do others have experience – positive or negative – of the first few months of taking Palbociclib ….. in terms of indications of whether it’s working?

 

Love to you all

xxxx

Highlighted
Member

Re: Palbociclib

Hi, I know how you feel. I've been popping Loperemide like they were Smarties.

 

Be careful though taking paracetamol, it can mask any temperature you may have.  I was told not to take any. 

 

X

Highlighted
Community Champion

Re: Palbociclib

Hi Ptt23, temp hasn't gone too high yet, but I've been taking paracetamol. No way I could go to A&E without wearing a nappy for the 20 min journey!
Highlighted
Member

Re: Palbociclib

Hi

 

I've posted in another thread but I'll share it here too.

 

I was originally on tamoxifen and Zoladex while I was waiting to become menopausal. As soon as I was (just before Christmas) I was switched over to Letrozole,  and then last Friday started on Palbociclib.  

 

As soon as I started Letrozole I started noticing my IBS symptoms gradually getting worse, then this last few days, the pain in my abdomen, has been really bad. I'm sure the diarrhoea hasn't helped. 

 

I had my monthly oncologist appointment this morning and she said to stop taking the Palbociclib for a week to see if things settle down. So tonight I've only taken my Letrozole. 

 

I'm sure it was the Letrozole that started my side effects.  Consultant said there is an alternative to Letrozole and lower dose of the Palbociclib can also be taken. 

 

I haven't had a temperature or dizziness and I'm not flu-y, but my side effects mirror your other ones.

 

What has your temperature been as I was told if it was higher than 37.5 to go to A&E?

Highlighted
Community Champion

Re: Palbociclib

Thanks Nicky.

I saw my oncologist on Monday who confirmed it is now licenced in the U.K. as first line treatment for secondaries.

Well I started on ibrance and letrazole yesterday and also zometa infusion.

How has everyone coped with the SEs? I've felt awful since the early hours of this morning. Flu-y, nauseous, diahorrea, temperature, thirsty, dizzy, bloating and stomach pain.

As I started all 3 meds at the same time I don't know which as caused which SE. Any clues?
Highlighted
Community Champion

Re: Palbociclib

Bumping up for RSD

Highlighted
Member

Re: Palbociclib

Hi Lisa,I THINK that I'm explaining correctly...I've been on a trial with Palbociclib for 20 months so have followed its progress in UK. So initially it wasn't approved by NICE although it's approved in most developed countries now, having been trialled extensively. The drug company negotiated for several months and whilst doing this, they paid for some targeted patients to start using it. Just recently NICE approved its use, but only as a first line metastatic treatment (it's only effective for ER+ HER- patients) I think the grey area is whether it can be added to an existing hormone treatment and how long can that have already been used. So can it be called a first line treatment or not.

I think your Mum deserves a full explanation, I would be asking for an appointment ASAP but I hope that this info might help. Good luck and keep us posted x

Highlighted
Member

Re: Palbociclib

Hi Lisa MP .... I am on Palbociclib and Letrozole. I'm only recently diagnosed, so started the Palbococlib through the scheme paid by the drug company just a couple of weeks before the NHS announcement for it to be free to all who need it. Whatever the payment arrangements, you have the right to know exactly what the oncologist meant and why she said it. Was it a clinical mistake ... and, if so, what and why? As a non medic, I don't know the precise details of the cancer profile for which Palbociclib works .... so perhaps it is simply not the right drug. However, being taken off any drug that is associated with the hope of improved and extended health is a very, very big deal for anyone .... so I feel strongly that your mum is at least owed a full explanation.

 

Sending love and wishing you well

 

xxx