Hi again Ibrance ladies,
Well after just over 2 weeks I got hit by an episode of diarrhoea & falling neutrophils & platelets. Just started on injections to try & boost the former, not sure if they can boost platelets but that fall is slowing at least. So will get 2 weeks off which isn’t great but obviously needed. Anyone else had this problem but not every cycle? Disappointed that it’s not going to be such an easy treatment for me. Hope everyone else is doing well.
Tournesol x
Hi Tournesol, sorry to hear that you’ve had some side effects with Palbo, are you still on cycle 1? These are apparently the most common side effects but don’t think that you will always get them, my first cycle was pretty dire, I didn’t get diarrhoea but low neutrophils and feeling sick, mouth sores and a really painful strep throat.
I’m now just finishing cycle 3 and have had no side effects this time. I haven’t had to lower or miss a dose but neutrophils do dip each time. I think that they were 1.75 last week, you miss a dose if they go under 1 on my trial. I hope that you soon feel better. I’ve read lots about Palbo on US websites and it appears to still work on lower doses. Have a next scan end August, anxious already!
Thanks Stillhere. Good to know it might not be as bad each time. Yes, this is cycle 1 and will have only been able to do 15/21 tablets as when I came in with diarrhoea they said my platelets were too low to continue. Then my neutrophils got too low as well. I would have been unaware if I had been at home. This is all in the context of recently diagnosed liver involvement which developed on my last hormonal treatment so may be growing on letrozole alone, limited mobility after recent spinal cord compression & realising things aren’t necessarily going to get much better. Oh & being scanned for brain mets too following some vision anomalies. So having a bit of a pity party today but hopefully I will manage to get a bit of positivity back! Hope your treatment continues to go well. Tournesol x
Hi Nanofthree, I have stayed above the neutrophil threshold so am still on 125mg but I know that in U.S., where thousands of women are on Palbo with a hormonal like letrozole, a reduction to 75mg is still getting results. I like the Inspire website, log onto secondary BC section and you will find lots of posts from ladies who have been on it for 15 months or more.
After 4 months on my trial I think that Palbo is not that easily tolerated by many, there are quite a few side effects! I’m nervously waiting for my second CT scan next week to see if my 2 drugs are working still ??
Bringing this thread up for the new ladies
Hello beanbob
Thank u for posting here …are u in the UK?
I think this thread is going to be active more now …
Please keep us up to dare with information.
Xxxx
Hiya beanbob
Good to hear more UK ladies getting access to this drug …hopefully it will get licensed soon if trials like lovely ladies you can prove its success.
Keep posting …I think we are all interested in your experience .
Carolyn xxx
Hello. Hope you don’t mind me joining in. I start a randomised trial of Palbo & either Letrozole or Fulvesant next Wednesday. I am 12 years since primary and now have mets to spine (get bone scan results next week to find out if more bone involved). To join the trial I had to have another ct scan & bone scan at he trial hospital. Even though I had had ct, Exray, MRI at another hospital just a couple of weeks ago. I have also had a bone biopsy and had 5 doses of radio & 1st Denosumab. A busy 4 weeks. I will check back with updates re SE’s etc. good luck everyone
Good luck FF for Tuesday. 16 cycles - wow. May I ask your history? Dx
Hello bandit
It’s good you too have got this trial as I was told I couldn’t go on it until I had 3/4 failed chemos or something. I’m still at leyrozole / denisumab stage .
Your oncologist must see ahead with this trial for you and please keep posting !!
All the best
Xxx
Gosh FF what a roller coaster ride you have been on. I so hope that that Palbo/Let work for you. Please let me know how you get on. On a drug trial I have so many restrictions re supplements etc. I have just started using Turmeric so hope that will be ok. Also thanks Carolyn52 for your support. Hope you are doing ok. I will keep posting once treatment starts.
It must be such a lift for you to have such good news on this journey. I am sorry that you have joint pain. I’m afraid I have that and have not even started treatment other than Denosumab & radio (I have arthritis). Does pushing through the pain help you or is it best to give in to it and rest? Wishing you continued good results.
Hello bandit
Reading in one of Sunday papers yesterday …they said that turmeric tablets are a waste of money but the real benefit is a teaspoon full of the powder daily in a drink or with food. Apparently it activates a cancer fighting cell. Mind you …can’t believe half of what we read!! The powder costs less than a pound in supermarket …the capsules are £20 for a month’s supply !!
Hugs
Hiya truffle shuffle
Hiya …you are not alone …we all have the dark thoughts at night too …you are not alone.
Best of luck with the scan …AAGH always a worry but will send u loads of positive vibes that the treatment is making you a stable Mabel !!
Xxxx
Hi truffleshuff, hope you are feeling better, we have sun here so I’m blowing it your way to cheer you up.FF, what a lot of treatment you’ve had! Maybe your Onc has kept the hormonals back deliberately? They have certainly worked for you, best of luck with your scan and results, I’ll be keeping my fingers and toes crossed for you.
Best of luck in your trial Bandit, so glad there is another Palbo lady on the forum! Think I might have posted to you on Inspire, about Tumeric? I have sometimes felt a guineapig on my trial as my drug combo is untested to date, the docs are very careful but it’s working…no more scans until end November now, phew!
Carolyn, you have posted sometimes about not being allowed on a Palbociclib trial - it’s only my experience so tell me to shut up but hormonals ARE working for you…long may it last because for me they were definitely the easiest to tolerate!! Hopefully Palbociclib is something that can be added further down the line and still work just as well as now. We all need weapons in our armoury and I’m very excited about all the different types of immunotherapy being trialled!! Have a lovely day xxx
Still here …you are so right and wise as my oncologist says the same…letrozole is working so stick with it but reading the threads from other ladies it stops working at some point and I’m thinking ahead !!
Hopefully by the time I need something else it will be licensed and available. I did chemo in 2004 and am petrified of it again. Sorry I’m such a wuss …when ladies here just get on with it!!
Nice to hear from you and hope u r well enough to get out with the horse again.
Hugs xxxx
Nanofthree
It’s good to hear from you and hope the results get better for you.
Wow …eight years of living with this disease thats a really good inspiration to all of us here…those sort of years would take me to over 70 which I would be pleased with.
Hugs xxxx
Hiya Ruth
Life’s a bitch isn’t it? I had primary 2004 and then extensive bone Mets 2015 and it really hit me like a juggernaut as during the eleven years had been well and didn’t visit the doc during that time either .
Oncologist said I was just unlucky and that a rogue cell didn’t die at original dx and chemo and just hibernated !!
Still we all just get on with it all and hope for the magic bullet soon !!
Carolyn xxx
Oh Ruth …I was the same …got hip pain …doc said trapped nerve and then sciatta …then oestopath said arthritus …a year wasted …then bone Mets hip , pelvis, femur and spine dx. I had to have a pin in femur to stop it collapsing …I get around on a stick now but enjoy life with grandchildren too. Enjoy a lot of lunches/ coffee with friends too.
Carolyn xxx
FF, it’s just as well you stood your ground with your Onc then! It really shows that we need to be informed on treatments, I think. From being too terrified to know anything I’m now as well-read as I can be (and understand!)
Thank you, Carolyn, yes I’m back doing some riding when the grumbly tumbly allows. Nan of three, I hope that you continue to do well with your scans, tumour markers seem a bit hit and miss?
My exciting news is that my younger son has handed in his thesis on a type of cancer immunotherapy and will shortly be a DOCTOR, he has started working at UCL Cancer Institute on something called CAR-T cell immunotherapy which has been trialled in blood cancers but his will be on a type of brain tumour. So moving towards solid tumours, still a way to go.Me, proud?? Well, yes xx