Morning all. I’m starting to get a bit worried now about how I am going to get treatment and medication if we are being advised to avoid social contact for up to 12 weeks.
I’m currently on a 14 day self isolation as I have a nasty cough and sore throat. I had a telephone appointment on Monday with my GP who prescribed antibiotics…but because of that my treatment had to be cancelled yesterday. I’m on palbociclib 3 weeks on 1 week off and denosumab injections monthly. All have to be administered by chemo nurses at the hospital…plus I have to have blood tests beforehand. I know a weeks delay in treatment wont have an impact on my health…but i now read that us Secondaries will be put at the back of the queue priority wise for future treatments as we cant be cured. This has really worried me and could have an impact on my prognosis. Logistically how can they provide our treatment in the community via District nurses doing bloods and injections to prevent us going to hospitals and potentially picking up the virus?
I’m going to make a call to my oncologist/ breast nurse or GP today. See who I can get through to and see what they say.
Has anyone had any reassurance or information about this from their health professionals?
I’ve read similar comments and it’s very worrying isn’t it - as if we don’t have enough to worry about anyway. But I have also read of people being given their treatment as normal. Going in to clinic if they have to (like to get chemo or denosumab) and also being given telephone or virtual consultations as well if they don’t physically have to go in to clinic - ie, to get scan results. It seems to depend on individual hospitals but just from looking at different support groups most seem to be carrying on with treatment at the moment. I rang my BCN for some reassurance on Monday but all she would say is that things are changing constantly so they are assessing things on a day to day basis but to turn up for booked appointments unless told otherwise. Not exactly reassuring but I guess that’s the best they can do at the moment given all the uncertainty. I’m also on palbociclib and denosumab. Due into clinic next week to start my 6th cycle and need to go in to get bloods done on Monday. So I’ll be turning up as planned unless they tell me not to. Xx
I am one of the fortunate ones who is off Doc and am currently NEAD, but I’m still on H&P which are immunosuppressants so I wonder if treatment will go ahead or not.
It’s hard to know what will happen but here’s the latest NHS (England) guidance:
I had a phone consultation with consultant last Thursday instead of my monthly visit to the hospital. I was told that my drugs would be posted to me, however I too have Denosumab and there was no mention of that. I have had a bad virus plus mouth ulcers so my appointment was delayed by 2 weeks. I am having a week off treatment to help with ulcers and virus. Which is just as well because I have no meds left. The consultant arranged with my gp to have bloods done. I went to one of the local clinics on Friday for them. However they are greatly reduced in numbers due to CV and only doing emergency bloods. Going forward that could be an issue. I will let you know what happens about my meds being posted out.
How do you know we are low priority for being treated for CV if we get it?
It will be interesting to see who gets letters to say they need to isolate for 12 weeks.