Hello. I am yet to meet anyone else with secondary breast cancer, so it’s quite a relief to be here. I have been feeling as if everyone else left the cancer behind whilst I… Well, did not. Just in November, my oncologist had told me that the chance of getting secondary breast cancer was really remote. She jinxed it because two weeks ago I was diagnosed with bone mets.
I am going to have a treatment of Ibrance and Fulvestrant. But I am so confused! My new oncologist (the other one retired) said that immune system problems were much less likely on targeted therapies than they are on chemotherapy. Yesterday I had my first appointment with the chemo nurses who will administer the Ibrance and Fulvestrant and they told me a very different story… For them, Ibrance is as devastating as chemo. They told me to avoid leaving the house unless it is to go to coffeeshops that are empty… And even so only occasionally.
What has your experience of Ibrance been? Who is right? My oncologist or my chemo nurses?
Thank you and it’s good to meet you all and to know I am not alone.
Aw what conflicting advice for you . I’m 4years into treatment on ibrance for bone and lung mets all stable. Have had a few episodes of neutropenia down as low as 0.75 but never needed hospital admission never had temperature or infection at that time . Was on 125 mg dose then 100 now on 75mgs I rance for past 9 months and scans stable. Side effects are ok a bit of gastric upset but on lansoprazole which helps. If neutrophils are low I just miss a week of treatment which I had done on maybe 5 or 6 times in 4 years. I go to shops hospital appts travel on bus train obviously take care but haven’t had covid. I walk most days helps body and mind. Neutrophils can change on a daily basis. Sending g you love hugs and positive vibes. Liz x
I appreciate how you feel; I am on pablociclib and letrozole and had really low neutrophils for the first couple of months until they reduced my dose to 100mg. However have recently read a learned scientific paper ( my own background is as a science teacher!) that said this response to pablociclib was predictive of enhanced PFS( progression free survival) and OS ( overall survival ). Don’t panic!
Welcome Veronica. This isn’t where you’d want to be but it’s the best forum around. My oncologist was as surprised as I was by my secondary diagnosis!
I haven’t experience of these drugs but you do often find oncologists and oncology nurses have conflicting views based on what they hear from patients. And nurses are perhaps closer to patients and pick up on the little things. However, times are changing, the CEV category is being scrapped; if you’re 4 x vaccinated, then you should trust your oncologist who ‘follows the science’. If you’ve yet to have your booster, go by the nurses. It’s your decision and not an easy one.
I’m on oral chemo which my oncologist says is underestimated in its risks (he reckons I have about 60% immunity) but he’s encouraging me to focus on quality of life. I was admitted with neutropoenic sepsis for 4 days during m primary treatment. I didn’t even feel ill; just had the temperature, low blood pressure and an infection they never identified, It was all drips and bleeps and not much sleep but it passed. So don’t be fearful of that. Some women get it quite frequently but, so long as you don’t delay contacting the hospital, you get antibiotics in a drip and are sent home with tablets within 24 hours.
Maybe you could ring the breast care nurse or your oncologist’s secretary for a telephone appointment to find out what your immunity is like, according to your bloods? Good luck in deciding,
Hello Veronicacaf. I have been on Ibrance an Fulvestrant for 13 months and haven’t really had any Sid effects only Fatigue so the oncologist has put me on 75 to help with tiredness all of my scans have been stable , Ibrance is supposed to be a great drug for cancer so don’t worry about side effects.Good luck.
I was on Ibrance throughout the pandemic and had to take public transport to the hospital, I had no choice! And either I’ve never had covid or I had it very mildly. Ibrance made me neutropenic but my numbers were always up and down - I was on 100 until this very last cycle when I moved to 75, felt incredible as my neutrophils were good, but my scans showed significant progression in one vertebrae which is unreal because I have no pain and no other indication the cancer had grown. So I am moving on to the next drug.
I got the median out of Ibrance - 2 years - for some its a slam dunk. I know one lady in the US about to start her 7th year, and more than a few on 5 years+. Deep down I knew it wasn’t quite the drug for me, but two years is two years I just wish it hadn’t been during a pandemic!
I would say just be cautious with crowds and make sure you have good hand hygiene, but other than that, go live your life! There is no point in taking these pills if you are going to hide away at home and do nothing with the time. Ive been to concerts and on long haul flights no problem. It will suppress your immune system but not wipe it out completely like chemo will. If you get ill you just stop the pills until you recover. Not sure why your chemo nurses were being quite so dramatic!
I just wish it hadn’t been during a pandemic!