Breast cancer 2004 just diagnosed stage iv Mets to bones. Having another ct and then bone scan next week prior to starting a trial for Palbociclib plus either Fulvestrant or Letrozole. Would like to know if anyone else is doing this and about SE’s. Would love to avoidence weight gain and hair loss. Anyone using Nioxin? I am also taking Calcichew and have had first Denosumab jab.
Hi Bandit, I haven’t been on the forum for a while as I’ve been on hols in Portugal. If this is your first post then welcome!
Im on a clinical trial using Palbociclib, not with a hormonal drug but another kinase inhibitor called Taselisib. I’ve done 5 months now and have had good results, the pharmas Pfizer and Roche who are doing the trial want an extra scan done on thursday as they are so excited!!
I have had side effects although I think that they may be due to my particular combo…so tiredness, diarrhoea-sometimes quite badly, nausea, which may be the Taselisib, and more recently…hair thinning and eyelash/brow loss which is probably Palbociclib. Palbo’s most frequent SE is low neutrophil count which hasn’t been a problem for me. I get blood tests every week and am still on 125mg although in U.S. where it’s been used for 15 months they often reduce the dose to 100mg or 75mg and still get results. What else? Yes I’m using nioxin hair products and I have lost about a stone because of the diarrhoea and also Palbociclib seems to have made me lose my appetite! A bonus I think!!
My trial is a dose escalation one so there are very few people on it, they are trying to find the best dosage then they will expand the trial to more patients and add fulvestrant to it. I’d love to know how you get on, best of luck and keep us posted xx
Hiya bandit …I asked about that trial too but was told I had to have 2/3 failed chemos and 2/3 failed h ormonals before I could b considered .
You sound like me …primary 2004 …then after eleven years secondary bone Mets Oct 2015
Sounds like u have a good oncologist who wants to get u involved quickly.
Xxx
Hi again, I didn’t know that there was a trial as a “first line” secondary treatment so its good to know that more trials are starting. My hospital is the Royal Marsden in Sutton. I’ve read quite a bit about Palbociclib and there is some debate about whether it should be used as a first treatment after secondary diagnosis to extend the hormonal effectiveness. I’ve had many, many treatments and am not taking it with any hormonal so I think that I may be unusual! So far I’ve had a 30% reduction in tumour size.
I hope that all the pre-trial scans go well and you don’t have side effects. I’ve also had letrozole and fulvestrant, I didn’t get any problems with either.
Hiya bandit
First of all …meet the queen of sugar/ choc and McDonalds !! Enjoy it all.
Yes we are similar …primary 2004, lumpectomy , chemo and rads. 5 years tamox/ arimidex . Then 2015 …hip pain …misdiagnosed as arthritis, sciatica and trapped nerves etc. Dx Oct 2015 hip, pelvis , femur and spine Mets.
On letrozole , denosumab inj and Adcal ( yum lemon flavour)
It’s mind over matter with se if they are not too bad really …
Funny face is one of our true inspirations and she will be able to support u with her experience of ibrance.
Keep in touch
Hi again Bandit, on the hair thinning, I have quite thin hair anyway after all my treatments but it was only after about 3 months that I noticed that I could see a large parting and my eyelashes/brows went very blonde and sparse. They are not completely gone though and if you have thick hair you might be fine! So don’t worry too much. Plus no more leg shaving!
I think that the statistics on survival are way out of date now so I don’t look at them. There are lots of ladies on this forum alone who have survived much longer than 2-4 years! I was first diagnosed in 1995, then had a series of local recurrences in 2009, 2011 and then secondary in 2013. Feel as though I’ve had cancer forever and still here to see my sons grow up and share so many happy times. Thinking of you next week. FF and Carolyn are truly inspiring ladies who post regularly and make us laugh! xx
Has anyone beaten the weight gain issue. I put on weight when on Tamoxifen for 5 years but am now overweight but not as big as I had been. I know weight & hair issues are minor in the scale of things but just trying to tackle what I can. Ditto nausea & fatigue. Of course I don’t know what side effects I will get but in so much pain at the moment and only had Denosumab & Radiotherapy last week. I am usually pretty tough with good energy levels but so tired at the moment I expect not sleeping is the cause. Think I’ll grab a chocolate bar & read up on cancer nutrition. Hope you are all ok. Xx
Hi Bandit, I think FISH test measures the amounts of HER2 gene in each cancer cell so fingers crossed that you have the right profile for the clinical trial, if not then Ibrance won’t work for you anyway, as far as I know?
Wishing you the best of luck and keep us posted xx
Still not got HER2 result. Probe not working at hospital so paid to have biopsy courierd across the country where it is being tested overnight should have result tomorrow. Re signed up for drug trial today in the hope that it comes back as a negative result. Will need another ecg & bloods. My blood pressure was off the scale today. So much stress but I am back in fight mode and once on treatment will report how it goes.
Just diagnosed mets to bones after 16 years. Started Letrozole and once monthly intravenous bisphosphonate. Letrozole causing terrible joint pain, nausea and constipation. Hopefully will subside.
Yes I am finding my arthritic and Cancer riddled spine to be very painful since starting Palbociclib & Letrozole. Also after Denosumab. Really just in pain all the time. Otherwise fab!