I’m due a ct scan but cancelled as I have( had) a temp and cough. Also due more Palbo which I would normally get at clinic this week. However, my clinic is postponed and I’ve been told to defer taking Palbo until further notice. I was told by my Onco PA that at the moment it would be unwise for me to take Palbo, or to sit around in hospital . Substitute dangerous, I think, for unwise. Feel very wobbly and have spoken to lead SBC who has been very reassuring that all measures are to keep us safe. Also, telephone consultations have now been put in place to minimise contact, and she will be monitoring these in order to provide appropriate support. I think rock and hard place is a very good description. Stay safe, ladies. X
We're all worried about this, or at least all of us who have to have regular blood tests and treatments which involve a hospital visit. However I believe all of us in this situation are due to get an update from the nhs tomorrow, Monday, by phone. Not sure (or can’t remember) whether this is a text or phone call but it is specifically going to mention getting chemotherapy etc (if you’re having it). Hopefully it will help us understand what we need to do. Other ladies, in the meantime, have been receiving their treatment as usual - from what I’ve heard via PMs and on here.
Good luck to us all and let’s hope everyone, including those without underlying health conditions of any type, take the governments advice and self distance - that’s the main worry I have, that not everyone is taking this as seriously as they should.
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:
Love and light and hope to you all x x
I don't post very often, but my experience is: I saw the doctor in clinic on Tuesday, then I had my Denusomab injection. I'd had my bloods done at the surgery on Monday, as usual (every 12 weeks). I was informed that from now on I will have my injections at home, either done by me, or my husband. I was given the doses for April and May. I will have my bloods done as usual in June, then a telephone appointment and if all is well I will go to hospital for my June Denusomab and be given two more doses to have at home. Apparently this regime was going to be introduced anyway, later this year, but Coronavirus has made them bring it forward.
Best wishes to you all,
Hi. I've been told I will be having telephone consultations from now on unless they have any concerns...but I need to still go to hospital for my denosumab and palbociclib tablets. My GP surgery has offered to do the blood tests before treatments so I dont have to sit in clinics or the hospital. My treatment has been delayed 2 weeks now due to self isolating for 14 days. I've also been advised by GP that I should self isolate for 12 weeks as I am in the vulnerable category. My house will be so clean at the end of all this...!
Hi everyone, I'm a bit relieved that other ladies are concerned too, I felt as though I was the only one worrying! In the last 9 days I've been to my hospital twice, for a meeting with my consultant, for Eribulin chemo and Denosumab injection. I'm due for a CT scan next week and results the week after. I don't really want to go for these! I have limited treatment options though and am nearly 7 years with secondaries. I sm sure that your team will make every effort to continue treatment, especially if they know you are likely to have years of quality life to go.
Im sure it will become clearer in the next few weeks xx
Hi I started to worry about couple of days ago, because I'm due an early CT scan at the end of the month and a onchologist appointment. The reason for the early scan was because there was fluid on my lung two months ago and my breathing wasn't too good. Anyway the Meds appear to be working as my breathing is now good but a scan would have confirmed this. Yesterday I rang my BCN and she said because they are so busy I will have a telephone consultation next week. No CT actually booked as they are so busy! I tried to be understanding given the situation with the virus but couldn't sleep last night for worrying. I'm lucky in that a nurse comes to me to take bloods so that's planned and if bloods are ok meds will continue. So I hope this is the case and that meds are working as it's all guess work without a CTA isn't it? Love to all. Stay safe x
Thanks Pawsome. I'm due to get my bloods done on monday too and on my 6th cycle. It's a bit different for me as I'm self isolating till 30th so I cant go to the hospital😬 it's all very confusing. I'm worried another weeks delay of treatment might be detrimental to me. Will see what they say 🤞
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
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?