Hi I have been diagnoised with secondary breast cancer in the bone on 24th March but have not received a letter to shield so i am a bit confused as i still have to attend appointments at the doctor and hospital and hopefully get an appointment with my dentist to see if i can get bone strenthening treatment, i have been staying home as much as i can do only attending appointments and the occassional visit to the shops. so confused as what i should have been doing can i go back to work, I have been working from home but miss my office when is it safe to do so x
Hi Glenn, welcome to the group that no one wants to join! I've got bone mets too diagnosed just over a year ago. It was all a horrible shock but I have got used to the new normal and am fine most of the time. I had surgery and radiotherapy to my spine. I got another letter last week saying shielding will end on 1 August. I am on abemaciclib which is similar to palbociclib and my last scans in May were stable so it is working for me. Good luck with everything and let us know how you are getting on. There is lots of support here and there is usually someone who can help out with queries about treatment, side effects etc. All the best xx
I was diagnosed with secondary breast cancer of the bone 6 weeks and started on Pabociclib and letrozol. Within a week I had a letter telling me to ‘shield’ until 30th of June when further info would be sent.
Yes Danbo it is a little crazy and worrying at the moment. Please let us know what your breast care says, it’s always interesting and knowledgeable to get peoples different opinions on things.
The country is getting a little crazy and it’s only going to get worse.
We’ve decided to keep the kids in school at the moment but I think when things do deteriorate in our area they’ll have to stay off.
Part of me thinks I should stop the palbociclib for now. I just hate the thought of this virus causing me serious issues now, when I could have many years in front of me. I’m sure I will stay on it but it’s certainly making me think.
I’m going to give Breast care nurse a call to talk through things tomorrow.
I’m feeling pressure to continue to work as I’ve just started back there, taking 3 months off when I’ve only just started back feels like I’m taking the mick...daft I know but I’m sure I’ll feel differently when the gov tell us all to self-isolate.
hopefully everyone gets good advice and stay healthy
Sorry your bloods weren’t good today. I have decided to self isolate and taken my boys out of school ( let the arguing commence!! ) I’m going to do the same as you....deep clean things and organise things I put off doing 😂 should keep us busy!! Xx
I am in a similar situation to Rosie on tablets, ribociclib, letrozole, injections of zoladex & denosaub plus calcuim & vitD. Due to another low blood count 0.4 i'm off the ribo and onc says I have to self-isolate. If my family get ill i have to avoid them too back up plan is move in with my over 70 mum and drive her nuts 🙂 Best thing you can do is call and check. I'm back on Mon bloods only onc will call me with results and post meds out of i'm allowed them at a lower dose.
Hi, I’m on Fulvestrant and Ribociclib, been back in clinic today and WBC is low again 0.5 so got to lay off the Ribo until I’ve had bloods done again next Monday followed by a telephone consultation Tuesday (they’re trying to avoid patients going to the hospital) she’s talking about doing a dose reduction if still low.
Got to stay away from work, social gatherings etc because of the Coronavirus!!
Got myself a good book and some oven cleaner 😆 need to keep occupied!!
I have been on palbociclib since april 2018 initially 125 mgs now 100 mgs for past 3 months as i had 3 low counts. Had bloods mon and counts were too low had repeat bloods next day so was able to start treatment again on wed as scheduled.. Neutrophils can vary on daily basis. I am still working in childcare part time and am just careful re hand washing etc . I know it is worrying times no advice given at hospital on Wed re work and I know another patient was working as normal. Hope you get some helpful advice. I have had good results on palbo 3 monthly scans show things stable have secondaries in lungs pelvis and base of spine. Liz
Hi I am on Abemaciclib similar to Palbociclib. My bloods were okay on the last test and I have been carrying on pretty well as normal but being very careful about hand washing and cleaning etc. I don't work but I have carried on meeting up with friends and doing the shopping. I can only suggest contacting your oncology team and asking what they think about self isolating which does sound drastic if you don't have any symptoms. It is difficult to know what to do to say the least. According to the figures I read those of us on targeted treatment are at an increased risk (5% or so) of getting it badly if we do get it but not at as high a risk as those with COPD or heart issues. I think we do have to take it seriously. My son lives in Madrid and the situation escalated very quickly there from a small number of cases to all the schools being closed a couple of days ago and now further measures to shut restaurants and bars and a state of emergency being declared today. I am thinking seriously now about staying home a lot more and have cancelled plans to go out to the cinema but will still go out to the shops. I hope you manage to get some concrete guidance and wish you and your family all the best.
I’ve been getting a lot of questions from people about whether I should be self isolating me and my family.
I’m currently on my second cycle of palbociclib and know my immune system is suppressed (I had to have an extra week off it after first cycle as my blood count was too low)
I’ve just started back at work this week as an electrician which mainly involves going into schools and churches doing repairs so I’m having contact with a lot of people.
I’ve been asked numerous times in last few days am I taking extra precautions etc, avoiding people etc to which I can only answer no.
My wife got pulled to one side by the headmistress at school today asking if we would like to keep our 3 kids at home due to our situation. I’d not even thought about it in those terms. I’ve even been considering going on a cheap holiday next week (obviously not now though)
Should I be taking this more seriously? Self isolating me and my family for the time being? I just think this is abit extreme as this whole thing could last months.
Is anyone else doing anything differently?