I think it must depend on the hospital you’re at. I’m under the Christie and my treatment went ahead last week. I’m on palbociclib, denosumab, Zoladex and Letrozole. I’ve been sent home with 3 months supply of palbociclib and will have my next denosumab in 12 weeks time. I will get my bloods checked in between at my GP’s. I always get my Zoladex done at my GP’s anyway. I’m due my routine 3 monthly monitoring CT scan next week as normal. So nothing has changed with my treatment x
just to add what I have learnt which will back up what Nicky has told us. Last week on my hospital visit they advised that they are suspending palbo and visits to hospital and are fairly confident we will all be ok on this regime. All the cancer services are being shipped out elsewhere to let the big hospitals concentrate in corona virus and cancer patients in isolated premises with no corona virus patients. So my fears are allayed . Good luck to us all x
Morning ladies, I rang Christie’s last week and spoke with my oncologist regarding suspending Ribociclib until this virus is under control. She explained that ladies who mets are only in the bone are being taken off these kinds of drugs but I have new progression to my liver (January) she wants to get on top of it and try to get it under control. She said I am also in the 12 week isolation group although I haven’t had a letter, she said hubby needs to stay home with me too so he finished Friday last week, it’s not a job he can do from home and his boss refuses to furlough him!!
These are very uncertain times aren’t they, stay safe!
Hi fellow warriors,I have not received a letter yet even though I am on my 6th cycle of Ibrance & Letrozole.I asked my local bcn about this and she said I should have had one and that if I hadn’t received it by fri to ring my G.P.This I did and he said his surgery has not received the criteria needed from the gvt!I tried to shop online but impossible to get a slot so I drive to the supermarket and my husband does the shopping while I wait in the car.This is not ideal as he himself is Diabetic and has heart problems but how else are we supposed to manage!I am on my third week of Ibrance & Letrozole so will be due to go for my blood test,I usually go to our local hospital for them but I have not received any info about picking up my next medication ( if my results are ok that is) as I usually go to K.E.V11 Hospital.Its all very confusing and worrying.Oh well try to keep safe everyone.
I was taken off my Palbo 2 weeks ago as taking it would mean I would be unable to fight off Covid 19. All my hospital appointments have been cancelled as well. My letter said that due to the virus hospital was deemed to be unsafe for me as I am in the high risk group. My hospital is a centre of excellence for cancer, and I’m always well looked after. Some of these hospital visits here sound nightmarish! X
I am in scotland getting bloods done at home by nurse or phlebotomist the g.p surgery offered as I am in 12 week isolation as higher risk on palbo and letrozole last bloods were low neutrophils 0.9 although they were up when repeated the following day. Have to go to hospital for palbo the following day which I am a bit worried about but thanks Nicky for your reassuring message from your experience. It all seems a bit dependant on where we live . There should be hand gel and masks available for us to use . Sending love and hugs to everyone in this uncertain times SBC is worrying enough without adding COVID 19 into the mix. Liz
Aww I know Sefton well, hope you get sorted with home visits. We all need to be treated well and kept safe. Take good care xx
Thanks Jennie. I'm struggling to understand the logic behind it! You are lucky. Maybe it's the pure volume of cancer patients and the lack of community nurses in the Sefton area. Who knows! Take care x
Paris that is crazy, you're on the same meds as me and my bloods are done at home. I'm originally from Liverpool and would always have imagined they would have it sorted. Now live in Cornwall. Only one hospital but so far so good. Bloods at home and fulvestant. I didn't have a letter to sTaylor at home but I have for 2 weeks now. Stay safe and take care xx
Hi Paris. I basically had the same experience as you last week. Every aspect in fact. I think lots of ladies have experienced similar too x
Hi Everyone. I received the NHS letter telling me I couldn't go outside for the next 12 weeks..not even to exercise, but I was expected to attend The Royal Liverpool today for my treatment. I questioned this with Clatterbridge Cancer Centre who confirmed I had to go to the hospital and get my bloods done beforehand. I asked what processes they had in place to protect me as I was classed as vulnerable. They said nothing in place, just comply with social distancing while I am there , it was a risk I had to take! The nurse who took my bloods was not wearing PPE, not even just a mask. The hand gel dispenser at the entrance to the cancer clinic was empty! They did ask me to wear a mask whilst I was having treatment, but noticed some patients coming in with no masks on! I was told that after my Denosumab injection to day, I wouldn't be having another one for 3 months. I was given 3 months supply of Palbociclib and calcium tablets. I don't need to go back now until 1st July. I still have to go out to get my bloods done every month, either at GP or Clinic. Unfortunately no suggestion of bloods being done at home for me!
Rosie, I will be going to the GP surgery next week for my denosumab injection: i usually walk round. My hospital nurse just rang in answer to an email query to say I could a) have it at home, b) tell the GP I'm going to wait in the car, in their carpark, instead of using the waiting room or c) ask them to train my husband to do it. No way would i ask hubby to do an injection, and I don't think Zoladex is as easy to give; I think visiting a surgery briefly is probably better than having a visitor in my home, so I'm going for b), and I hope your surgery would support this option for you.
Hi everyone. How we receive our treatments is so varied isn't it? I'm on ribiciclib and fulvestant. I had those sent to me by courier the other day 2 mths supply of ribiciclib this time. My bloods and fulvestant will be done at home.
When I was diagnosed I was asked if I would like a nurse to do bloods and fulvestant at home. I agreed and later found out the nurse for bloods is actually employed by the pharmaceutical company and shares my data with them. So that's why I get that done. The fulvestant is done by the acute care team. I haveoutlying chosen to go to a clinic for this but now it must be at home.
A friend of mine has had chemo stopped for 12 weeks. Again all so varied. It's worrying no matter what. I'm feeling fortunate with how I'm being treated. Hope all goes well with you too xx
Thanks for the update Nicky.
I’m due my zoladex injection next week which I have at my GP surgery, my oncologist rang me last week to say I need to do the 12 isolation and also my hubby too so I’m not really comfortable going into the surgery but when I rang on Monday and asked about a home visit instead the receptionist told me that I still need to attend the surgery for zoladex!! I’m thinking of ringing again and questioning this!!
Just an update from me (now all our threads have been unlocked and we can post a reply again!)
I went for my chemo yesterday at my local hospital. All very quiet in main areas and also on the chemo ward. A lot of treatments and procedures (such as denosumab and port flushes) are being done with longer times in between so patients aren't having to come up to the ward so often. All within safe guidelines for the procedures themselves. Obviously chemo is going ahead at normal time intervals from what I know. Worrying to go into a hospital or anywhere at all when you are in complete self isolation the rest of the time but I felt far safer there than any shop or place I'd been in previously - before the self isolation started. The ward as ever was scrupulously clean and extra masks being used by nursing staff if needed such as when the cannula is inserted or port accessed. I also wore a face mask and gloves for protection.
Interestingly our unit is likely to move offsite in the next few weeks to a remote location away from the main hospital. Which will be a relief for us patients and will give extra capacity for the patients that need care regarding coronavirus. The nurses don't know where or when yet but presume it will be before the peak of the virus is expected. They are also keen to get away from the site for the patients safety and theirs.
I registered too, as I'm on palbo, and haven't had a letter yet, but I have hubby doing the shopping, so no contact from the council yet.
Sounds like they are doing their best to give you the right treatment, worrying though it is to break isolation to go to the hospital. Hope it goes well for you. Hugs.
you can register yourself on the gov website as a person vulnerable and being shielded
I m on same treatment as you and have done this, I had a call yesterday from local council asking what support I needed, had I enough food for the weekend, they will arrange someone to collect and deliver your prescriptions and you should get a food parcel delivered
they can also arrange for someone to check in with you as often as you need by phone
please think about this as it will prevent you from being exposed to the virus
take care xx
I was in last Thursday for meds/injections/visit. The best was getting a call from the registrar when I was in the waiting room to have my monthly clinic with her by phone. The day before someone had called from the hospital confirming I wasn't ill and I was ok to still attend clinic in person. This was the second month in a row I haven't spoken to my/any oncologist and I was more or less shoved out the door in about five minutes. No denosumab next month, next couple of clinics will be by phone (fine with me!), but still have to go get injections and meds and do blood. I just scanned in February and I am only on cycle 5 of palbo/letrozole, my bloods are excellent and I guess I've had improvement, who knows, no one has really gone over the scan results with me.
The pharmacy was also out of letrozole, but they managed to find a few tabs to hold me over, so now I have to go BACK to the hospital on Monday to get the rest of it. At least the bus is empty and there is no A&E so its pretty quiet. Still - I showered and washed my clothes right away after Thursday's hospital time, and will do the same after I go in Monday morning. I only go out for a walk, usually at night due to less people, and partner also just goes out for a walk or groceries if needed (every three days maybe). No letter or GP contact, and the registrar didn't say anything about being in the 12 week group, so I am just going to keep on doing what I've been doing.
Yes it is all very worrying indeed. Things may well change in between now and next wednesday too. Just have to take it a day at a time.
Apparently my prescription is done & awaiting dispatch! No mention was made about my denosumab.
I had a letter from hospital asking me to go in for bloods on 14th April then I would have telephone consultation on 15th.
Last Thursday I just had telephone consultation and had bloods bloods done locally. I think that's getting more difficult to do.
Hi. I've just had a call from specialist nurse who tells me I have to go to the hospital next wednesday to collect my palbociclib. I'm not getting denosumab for 3 months apparently. I still need to get my bloods done before the appointment but my doctor won't do it because I have a cough which I've had for a month and dr prescribed antibiotics. No temp so dr happy ive not got the virus?! Told by hospital I need to go there now before my treatment to have bloods done! Just ridiculous. Im now being put at risk attending hospital and blood clinic! I feel I need to be tested for COVID 19 as there is too much uncertainty and could potentially either pass it on or pick it up. HELP!
I started my treatment last Thursday with my first zoladex injection and I'm currently awaiting delivery of my Letrozole.
I'm due back at the hospital on the 2nd April for bloods, ECG etc before I start the Ribociclib but I hate to think what situation the NHS might be in at that point! I'm really worried but then I guess we all are.
I am also under Christie’s, I went Monday morning for bloods and onc called me yesterday with results and my Fulvestrant is being delivered today and Ribociclib and Denosumab later this week.
I would definitely get in touch with your oncologists secretary, my oncs secretary is really nice and helpful.
I guess it is weighing up the advantages against the disadvantages. Hopefully you can get to discuss this today with consultant. I have had a week off my treatment, exemestane & everolimus, as I had bad ulcers. Just as well the consultant suggested that I had a break, as I didn’t have any meds left to take and am due to restart on Friday and Still haven’t any to take. I have emailed pharmacy and tried to call but no success or response as yet. I live in Liverpool and attend Christie’s in Manchester so not like I can just pop in, plus they aren’t allowing that. If I don’t hear or receive anything today I will try to contact the consultant’s secretary. I feel in limbo really and another week off the meds’ isn’t the end of the world. Also I am waiting to get results of my bloods back, I had them done Friday locally and they said it would be about a week until I get my results.
Take care and and be safe.
I spoke with mine yesterday and it’s being delivered this week, although I am debating on wether or not to ask if I can defer the Ribociclib and just stick with Fulvestrant until things settle down!
Has anyone had their meds sent in the post? I spoke my consultant last Thursday have not had anything so far sent to me.
Keep safe and well.
So I’ve just had my telephone consultation with onc, bloods are fine and she is happy for me to go ahead with my next cycle of Ribociclib. She said I now fall into the high risk category and will need to self isolate for 12 weeks because if I was to get this virus it would make me very poorly, I’m feeling quite anxious now and have just spoke with my son who has said can I not just defer the ribo until things have calmed down??
its all very worrying isn’t it really don’t know what to do for the best!
I have had a week longer break on Palbociclib twice in 9 months, and I have heard of some women on 5 week cycles permanently, so I wouldn’t worry too much about extra week.
i saw my consultant last week who suggested I had a 3 month break to get me over the peak of the virus, I am stable so not sure if this would be her advice to everyone
will just have to wait and see if I get my prescription this week🤞🏻
be safe, be careful xx
Wise words as always. My concern is letrozole did not work for me in isolation when I first started in it over 2 yrs ago so it was topped up with palbo but I am not an oncologist so they know best.
Good luck with your treatment
It is a very worrying time for us all and reading the nhs information its also quite scary.
One thing I would say is that I have been living with SBC for over 12 years now and none of the newer immunotherapy drugs have been available except for the last 18 months or so (or slightly longer if you have been part of a trial). The hormone treatments in themselves work well and have done so for many years, the newer drugs extend the life of them. So although it is a scary prospect to go without one part of your treatment given the adverse effect they could have on your immune system it sounds like its good advice from your oncologists to reduce your risk.
I for one am limited with my treatment options although so far my chemo will be going ahead, once my platelets pick up a little. I had a blood test earlier this morning and it was deserted except for me and one other person - obviously we sat at opposite ends of the waiting area. I luckily get a set appointment time for my bloods so I never need to be there for long but it looks like people are not being sent to the hospital for bloods as it was so empty.
As to the letter/text from the nhs I have had mine, it was a text and pretty scary about 'shielding' us very vulnerable people from this virus.
just an update from my visit to hospital today. Same as others very vigilant on the door my husband was not allowed in with me and all ran quite smoothly. Blood department were struggling to keep up but got there eventually. Saw Onc who said no palbo for me for 3 months as believed I would be ok on letrozole. No denusomab or bloods for 3 months and would write to GP re switching to 3 mthly zoladex. He said all scans would still take place. I felt ok until I got home and started getting a bit anxious but he is the expert. Love to you all Wendy x
Interestingly my telephone consultation was with Christie’s. Seems strange some are going in for bloods etc and others are not. I guess it depends on your consultant and disease progress.
My meds are supposed to be sent to me but not heard anything about that, as yet. I think pharmacy were contacting me first. No mention of Denosumab either. I had bloods done locally but need to wait a week for results.
I was at the Christie hospital this morning for bloods, they were extremely vigilant, they only had one entrance open and everyone was stopped individually before entering, staff had to show their ID then use the hand sanitiser before entering and patients were ask about Coronavirus then to sanitise.
I am getting results via a telephone consultation with my oncologist tomorrow. I will ask about these letters because it is quite a grey area isn’t it.
Regardless I am still staying off work and socially distancing.......got hubby on shopping duty and that’s been an education!!! Lol
Did you find it easy to identify which group/category you would be in. I know I'm not 1 or 2 but otherwise confused xx
Hi everyone, hope you are all coping well. The list for priority groups is on this thread. Scroll down to Jen fer and click the link. I read it the other day. It's scary.
Take care all xx
Hi WMJ. I have a consultation by phone on Wednesday so see what my oncologist tells me then. I read somewhere...and I cant find it now, but there was a list of priority treatment I.e those who had recently been diagnosed with cancer and could be cured were top of the list down to those with secondaries and no cure. If I find it I will post it!
No letter received yet, but I've just spoken to my oncologists secretary and said they are not going out yet to new patients ( I was diagnosed with secondaries in July 19!) but she said the oncologist was asking for email addresses so I gave her mine. Might be worth checking your oncologist has email addresses as it's not something they all ask for initially?. It depends on the hospital? Be quicker and cheaper for them to contact us all.
Take care x
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.
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?