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.
Yes true2wish my onc (also at Christie’s) has lowered my dose due to low wbc when on 600mg.
Thanks all of you ☓ I think as I've been up, down with blood test results, on and off ribo till they stabilise again. She doesn't want me to take the risk of coming to Christies, to get the dose right.
But as she's lowered the dose I've just started I am going to continue this cycle it's a risk I'm willing to take. Let's see where we are in a month, fingers crossed 🤞 for a miracle vacation. 😁
Hi true2wish, I’m on Fulvestrant and Ribociclib, I questioned with my oncologist about deferring the Ribociclib until this virus settles down but she said, ladies who have mets only in the bone Ribociclib (and other meds in this group) are being deferred but because I have new progression to my liver she doesn’t want to stop it as she wants to “try to nip it in the bud” and try to get it under control again.
Hope this helps.
I’m on 12 weekly zoladex and denosumab anyway so no change there for me but I’m on palbociclib and my meds are continuing. I’ve been sent home with three months worth of meds. I’m part way through my 6th cycle. Might be worth having a chat with your team if you’re concerned x
Thank you both, yes as you say the hormone treatment will continue through local pharmacy and 12wk injection at surgery. Which is safe as she collects me from staff carpark an takes me through the back.
As you say it's only part of the treatment just the contract you in 3months seems so far away. But I think I need stop thinking of myself and see the bigger picture 🤔 thanks gonna have to take more set backs but part of this crazy journey 😁
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.
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 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?