Breast Cancer Now Forum

Thank you for your message. I have my lumbar puncture on Thursday now and I've asked for copies of the reports from all my scans since Dec 20.  Once I know what's wrong I will take this further if I have the energy!  ... View more

Thank you Gina. I will contact PALS when I know what's wrong with me..I have my lumbar puncture on Thursday now. Very anxious about it, but it has to be done. MRI of spine on 2nd August so by mid August will know what's wrong. 🤞   ... View more

Hi. Just an update on my horrendous journey so far! Got results of mri in hospital..all clear. Lesions on skull and jaw been there a while. Doctor said..."Go home and enjoy life". (This news given by a Respiratory Surgeon). On the back of this excellent news, booked a 4 night break in Ibiza the following week to celebrate with my husband and to have complete rest. Appointment with oncologist the following week before flying to Ibiza,  was livid! 😡 ..the ct and mri scan had been done without contrast despite instructions to do so! He was unaware I was even in my local hospital and said I should have gone to the cancer centre where I have my treatment.  Scans therefore a waste of NHS money they are useless as far as diagnosis is concerned and doctor who gave me the news is not qualified to give an oncology diagnosis!  Fast forward another week and had an mri of head with contrast. No signs of brain tumour(thank the lord), but need urgent lumbar puncture to rule out any cells in the fluid around my brain and spinal cord and an mri of spine booked for 3 weeks. Googled Numb Chin Syndrome and the prognosis is awful 😥 . My CA153 has gone from 80 ish in January to 140 ish now. Onc not too bothered by that though? 🤔 I'm not coping very well and have taken 4 weeks on sick leave. I'm so tearful, planning my funeral  wondering if I will make it to Xmas etc etc and so angry 😠 . The holiday was ruined as thoughts of my illness and what may be wrong were constantly on my mind. I was do anxious to get home. The waiting to know what's wrong is absolute torture. Its been a month now and still no further. Sorry for rant but I needed to get it off my chest!  Thanks for listening 😍 will keep you posted. Paris ... View more

Hi. Definitely try Insurance With. I've used them a few times and no problem. You do have to answer quite a few medical questions but it's worth it and they are not expensive. The founder of the company is a lady who has/had breast cancer so I would rather give her the business than the bigger well known companies.  Good luck x ... View more

Thanks for the lovely reply. I'm so anxious its untrue, but you definitely give me hope. Thank you. Xx I had an MRI scan earlier today and that came back clear, although they won't confirm this until I hear it from a senior doctor! How can two scans tell different things? Something is not adding up!  I'm still in hospital waiting for the confirmed results, hopefully in the morning. Its been one hell of a roller coaster emotion wise for me and my family. Its not fair I'm being kept waiting for so long causing me unnecessary worry. Just want to know what's up with me!    ... View more

Hi. Yes I have monthly blood tests. My neutrophils usually about 1.2 but a couple of months ago were 2.4. I have no idea why they were so good that time and then dropped again? I had my ct scan today so got the usual scanxiety till appointment with Onc. I'm just getting plenty of rest when I'm tired and enjoying my time when I feel more energetic. Seriously going to consider giving up my job too or reduce hours to 16 a week. That might help!  Xx ... View more

Thanks Jan! I will have a good chat with my Onc next month and see what the results of the next CT scan are. I've got it in my head things are deteriorating. It's horrible how this disease makes you feel. I get so fed up of being tired and not being able to do things I like to do. A bit of gardening or cleaning helps me feel "normal" whatever that is! Fingers crossed its just a blip and I can start to be more positive.  Thanks again. X ... View more

Thank you so much. I'm on 75mg the lowest dose. Will have a char with my Onc when I see him next. Xx ... View more

That's just awful! We should be given an apology for not taking us seriously at the very least! 😡 ... View more

Yes let's hope this helps others. I didn't get anything when I finished my treatment in 2010. They probably didn't do the packs then. It is shocking that so many of us had to endure months of pain and anxiety before anything is done. It's all about cost though. They try the cheapest solution first and go from there! 😡   ... View more

Haha! Yes I feel the same. Both arms bruised from canula in one arm on Monday and blood from the other yesterday. Off to get my denosumab later and my next 3 weeks supply of Palbo. Going to take it easy for the next few days!  Keep smiling and stay safe everyone x ... View more

Hi Maisie. Glad you have had the vaccine and experienced little or no side effects! I did develop some quite painful aches and pains in my legs and hips a few days later, but they went after taking ibuprofen. Had another routine ct scan today and feel out of sorts again tonight. My body probably wonders why it's getting injected with all kinds of weird stuff!  Take care Gill ... View more

Hi. Yes I had to reach for ibuprofen. Paracetamol didn't really touch the sides as far as aches and pains felt! Would recommend that after the event. I feel fine today, just a sore arm still but that's all.  Gill xx ... View more

Good luck Maisie! I did get some side effects after all! About 24 hours later I had aches and pains...similar to bone met pain! 😪 and a stuffy nose and a cough, but its eased off now and I just take paracetamol. Everyone is different so you might not get anything other than a sore arm! Take care x ... View more

You are very welcome! ❤ ... View more

Hi Lesley. I too have bone mets in spine and on palbociclib, denosumab and letrozole. I do get a bit achy now and then but the main thing with me was my neutrophils. They kept going too low so I'm now on 75mg and have a 10 day break between treatments. Its a bit trial and error to start, as everyone tolerates the meds differently. I've been on the treatment for 15 months now and all is stable so far. Long may that continue! Good luck with your treatment xx   ... View more