Ribociclib Fulvestrant injections etc v 3m isolation.

Hi jmp and everyone,                                                                  

I had my letter on 21st March to isolate for 12weeks.  I  had a call from oncology last Tuesday to attend my appointment on the Wednesday, I had my bloods taken and was given my fulversant injections, was a quick appointment not too many people around. My ribociclib was delivered by courier later the same day.                        I am on my 7th course of ribociclib now and my recent scans were stable.                                                                      I did find it a bit scary having to attend hospital after two weeks in isolation and none of the staff wore masks. I did wear a pair of disposable gloves and discarded them before getting in car. I washed all my clothes and showered has soon has I got home. I am expecting the same next month was told by hospital secretary to expect a phone call before next appointment.                                                                               Hope everyone is doing has best has we can in these scary times.                                                                                                                                                                                           Von

Hi Everyone.

Hope you're all doing great and enjoying the lovely day safe at home 

It sounds like different trusts have different measures in place. I spoke to oncology and all appointments unless there is a problem are being conducted by telephone and we are given a slot to collect our Ribociclib from a dispensing chemist in the hospital car park. Apparently only one person designated by the patient is allowed in at a time.  It would give us all so much reassurance if they all did the same thing, whatever that may be.

Luckily the nurse still comes to take my blood so apart from her there are no visits or visitors to our home. I've even confined my husband and Poppy our collie to house arrest . Good job we have a good long garden for her.

Enjoy the weather and stay safe everyone.

x 

Hi All,

My oncology ward rang me last week to see if I could get my GP to give me my faslodex injections.  However I have a port which needs to be flushed every 4 weeks so the nurse said to come in.  I was shocked to find that the nurses weren't wearing face masks or protective gear and although the chairs had been pushed 2m apart the hospital staff were socially carrying on as normal. I wore a face mask and they said I didn't need it. However the nurse who gave me the injections said that next month I should definitely get my GP to do the injections and not to bother about bloods or getting my port flushed.  She dismissed my worries about getting an infection or blood clot if I put off getting port flushed. I stripped off all my clothes and threw them in the machine and had a shower as soon as I got home.

I'm concerned that the GP won't know how to give faslodex injections as I thought the nurses had to be trained in administering these shots. I feel like a wuss but I am frightened of things going wrong with my port. [I knew a woman who got an infection through her port which affected her heart and killed her, not her cancer.] What would you do?

Stay safe

Aoibheann x

I appreicate that covid 19 is wrecking havoc everywhere. Without knowing much about the type of hospital you are visiting, its difficult to say. I would continue to go to the hospital or ask if there is a specialist cancer hospital you can be switched to -it sounds like it may have been a loucm nurse you came into contact with?   I have always have really bad experiences with GPs and with community nurses - so as much as possible I would personally avoid those avenues. However, in fairness they are better with breast cancers.

It was one of the nurse-managers in day-care oncology of the hospital I've attended since diagnosis who suggested it.  She also originally suggested that I go to the dressing-clinic to have my bloods done/port flushed and then down to them for faslodex injections.  I refused to do that on the grounds that I would be exposed to more people who potentially could have covid-19.  She asked me if I knew any nurse in the community who would give me the injections and then giggled as she said the nurse would get a fright when she saw the size of the needles!!

In the particular private hospital I attend they are treating all the cancer patients from the public hospital as well as their own patients so there is nowhere else to go.  That is why I was freaked when I saw the staff walking around without masks etc. This particular nurse definitely does not want me to come in to the hospital for my next injections and dismissed my concerns about getting my port flushed. I suppose the risk of picking up covid-19 is higher in the hospital than in the community.

I've had the same port for six years.  I'm worried that it might get blocked up.  Does anyone know how long it is safe to leave a port unflushed?

Hi Judith

It's a tough one.  I haven't received a letter about staying in or anything related to the virus but was told by the GP quite early on to stay indoors.  A friend received an NHS England letter that said vulnerable patients undergoing treatment should go to their appointments, so I went on Friday.  At the entrance three nurses were in PPE taking temperatures and hand sanitising was compulsory. I was impressed after worrying about going.  Up in the chemo day unit things were as usual Friday before last, but they were ringing patients to symptom check the day before. 

I didn't wear a mask, but kept my gloves on and took an anti-viral spray etc etc. 

It's so different everywhere and the usual hospital lottery. 

Cosima

Hi ,

I have a port and went to get it flushed about 2 weeks ago. I am having it done by district nurse at a small local outpatients unit.She gave me another appt for the end of April, but since then the trust which employs the district nurses has written to say all appts are being suspended and I should hear from someone soon. Like you I am a bit paranoid about not getting it flushed, as originally I was told it should be every 4 weeks if not in use. I do recall my consultant once saying it would be fine for up to 6 weeks, but I have had it done 4 weekly mainly. I am hoping that they will suggest I revert to getting it done at the chemo unit in future. I still have to go for blood tests, and a ct scan next week, even though reviews are being done by phone. It is a bit random as to what is seen as risky and what needs to go on. But I know I would be happier having a regular flush appt. I will be asking doc when I have review.