Hi Just received a letter this morning from the onc to say my ribociclib must be stopped immediately. Also that i will receive my zoladex as a 12wk injection and not every 4wks to reduce contact to surgeries. My next apportionment will not be in a fortnight now but she will contact me in 3mths time to arrange an appointment along with a ct scan to decide the next step in my treatment. I have bone mets that only after two rounds ribo showed signs of healing in a ct scan 2wks ago.
As you can imagine like so many others i am now concerned. I get it risk assessment but as we (my partner is furloughed) are self isolating i feel the risk is very minimal for me, our daughter comes drops shopping at back door no contact via outside world.
I am considering finishing the course i am on as i’m one week into a three wk cycle but wander if that’s just stupid. Is anyone else stuck in a conundrum?
Big hug. That must feel devastating. I’m surprised. I’d just started a series of 6 x vit B12 injections to try and sort out the mess of chemo side effects I have. I’d had two, then the medical centre shut down. The other four were done on my doorstep, a masked nurse standing at a distance and jabbing the needle in my arm. Sadly it hasn’t helped but I’m very grateful to the nurses, especially as I’m in complete isolation. Perhaps it would be worth questioning their decision, assuming your injection is a simple process?
I hope it gets resolved for you x
Hi
It seems that quite a few ladies have had their ribociclib, or similar, drug stopped due to the increased risk of infection - wbc and neutrophils seem to be affected quite substantially with some ladies from what I’ve seen on here. You will of course still be receiving the hormone element of your treatment (I don’t know of any case where ribociclib is used on its own) so this will still be as effective, as they always were before ribociclib and the newer class of drugs were added to increase the longevity of the hormone treatment. I’m sure this is a worry that you are not getting all the drugs but I would imagine this will be a short term solution whilst the peak of the virus has still not happened. It seems any patient who’s condition is stable and on these drugs is being advised similarly to stop the additional drug. It would also mean you would then be out of the extremely vulnerable group once the general population social distancing is reviewed which would be a bonus! As to whether you finish the course you’re on, as you’re self isolating I can’t see it would do any harm but you could clarify that with your oncologist if you can get hold of her.
Nicky x
I had a phone consultation with my onc she was stopping my everolimus/exmestane combo as it was showing signs of not working for me now and was talking about putting me on capcitabine then told me that I would go on tamoxifen for twelve weeks and my four weekly injection denosanub would go to twelve weeks ct after this time and follow up appointment due to the Coronavirus. She does not want me attending the hospital and I’m self isolating for twelve weeks. I did feel I was being put on the back burner but now in view of this horrible pandemic I guess it makes sense. The reason you have been asked to stop your medication is so your immune system can be strong and fight. We just have to hang on and wait and hope we stay well. Keep safe.