Breast Cancer Care Forum

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 ... View more

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!  ... View more

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!  ... View more

Thanks Jennie! I knew I'd read it somewhere 😬 x ... View more

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   ... View more

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...! ... View more

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 🤞 ... View more

Hi AnnieJ and everyone else that has responded. I agree, I will be terrified to pick up anything and also if someone else gets it the chances are we could be quarantined like those in Tenerife. Its not worth it for 3 days in the sun, as much as I was looking forward to it! A friend also told me they knew someone who had cancer and was planning on going to Tenerife. Their doctor advised them against it and they got a full refund of the holiday through their insurance. It also said on Breakfast TV today that if you have health conditions then the insurance company should be happy to refund in the circumstances.  We also have a 60th Birthday holiday for my husband in Barcelona in May...looks like that will be cancelled too. I'm obviously not meant to be going on holiday this year! I have an oncology appointment on 18th March, so will see how things are by then and make a decision based on their advice. Will let you know what they say.  ... View more

Thanks Lambkin. Fingers crossed it settles down soon for both of us. Because I slept so much yesterday I couldn't sleep last night 😡 ..awake till 3am then up at 7 for work! Nightmare! ... View more

Hi Dot13. Yes it was Life Mel Honey. I've not bought it yet as its a bit expensive, but plan on doing so soon. Let me know how you get on at the hospital on 11th. I'm there on 18th. Shame we didn't have the same date as we could have had a good chat about our experiences! Hope your wait isn't too long! ... View more

Thank you Kate for sharing that. I did hear briefly someone talking on bbc breakfast this morning about this, but only caught the back end of it. I tried to Google bbc news but nothing came up. It's great news! X ... View more

Hi Dot13..yes I'm on letrezole,palbo and denosumab. The palbo is causing my neuts to crash and now on 3rd cycle. I've been reduced to 100mg but still get to 2nd week and I'm wiped out and having to stay off work. Oncologist is reluctant to reduce any further yet as it's working, however I'm still very tired. The clatterbridge nurse told me to take iron supplements which I've just started. See if that helps. I try to eat more healthily and have drastically reduced my sugar intake as this is supposed to be what cancer cell feed off. I'm taking tumeric and black pepper from Holland and barratt, omega 3, vitamin b complex and going to ask oncologist about berberine and also metformin which is a drug for diabetics which studies have shown its effective alongside conventional treatments to attack the cancer. Whilst waiting for my oncologist appointment at the Royal 2 weeks ago..usually 2 to 3 hours wait as you might have experienced!, a lovely lady sat opposite me handed me a magazine called Icon, which is available in the hospital. It describes how diet etc and repurposed drugs like metformin are helping to kill the cancer cells. I'm still very sceptical but she and her husband were adamant they work. She also told me to get life mel honey...expensive but her neuts never dropped below 1.9 whilst on palbo. Hope this helps and dont give up. Tell your oncologist what you want and get an explanation of why they are not offering other treatments. I'm very impressed and very grateful for the wonderful doctors, oncologists and nurses at the Royal but its important to get answers to your worries and fears as I'm sure there is a good reason why some treatments are not offered. Everyone's cancer is different. Good luck xx ... View more

Hi Dot13. I too was not told breast cancer would likely return in my bones. I had 5 years on hormone tablets and then told I was fine and no longer needed to take anything. At the time I felt very vulnerable having no further check ups, tests etc apart from routine mammograms and feel quite angry now that had I been forewarned I could have done more research into how to prevent it maybe or at least prepare myself for it returning. Nowadays hormone tablets are given for 10 years. I was diagnosed in august 2009 and it recurred exactly 10 years later. I too am being treated at the Royal in Liverpool. I have denosumab injections too. Does your partner have this too to strengthen the bones? X ... View more

Hi Jefner. Do you mind me asking what supplements you take? I currently take vitamin b complex, tumeric & black pepper, omega 3, half an aspirin per day, Adcal, plus palbo, and letrezole. I've ordered some melatonin which is on its way to help with sleep and I've been recommended Life Mel Honey too to help with my neuts which keep crashing below 1 so will give this a go too. The lady who recommended it to me said her bouts never fell below 1.9 whilst taking the honey. I have my next appointment on 18th December with my Oncologist so will be asking him about berberine and also metformin. I must literally rattle after I've taken all the supplements each morning but none of them can do me any harm! Thanks for the other book recommendations, I will get them ordered too! X ... View more