Breast Cancer Care Forum

Hi Clarence  I agree with Rosie that you should seek some counselling if it is available. It helped me when i was first diagnosed and talking can only do good. Rosie, sorry to hear that you headaches are not improving but glad your brain scan was OK. Thinking about you both love bon ... View more

Thank you all of you for your kind thoughts and wishes Bon x   ... View more

My scan showed mets in brain and lung in addition to those in bones and liver so am stopping treatment but I'm 72 so haven't done badly. Hugs to all Bon  ... View more

Had a head, thorax and abdomen scan last Sunday. It shows a meningioma (not BC) pressing on my optic nerve, another area of cancer in my brain, and lung mets in addition to the bone and liver mets I already had, So no more treatment for me. But I'm 72 so have done quite well Hugs to all Bon xx ... View more

Hi all cape crusaders, hope you are doing all right. I have been off it now for about 3 weeks though I did not think my side effects were too bad. I have developed a problem with my right eye and had a scan yesterday. Have started to feel more unwell so starting steroids tomorrow. Hugs to all Bon xx ... View more

Hi Riverside Dawn What a lot you've had to cope with and docs ignoring your symptoms as well. Hope eribulin works for you and you can get back on your horse soon Hugs Bon xx ... View more

Great news Rosie but terrible headaches no fun at all. Hope the docs can sort something out for you. Hugs Bon xx ... View more

Am going for a scan of head, thorax and abdomen on Sunday at 10.00am. Pain below my ribs started yesterday. Need to know what's going on. I don't know how I'd be coping if I didn't now have a breast care nurse and a palliative care nurse who works for a local charity. When I started on this journey things were pretty bleak and lonely. Hugs to all Bon xx ... View more

Good luck with you change in treatment Nicky Your posts mean a lot to us all Bon ... View more

Morning everyone I hadn't planned anything for months but went for a week to Cornwall last week, onc is giving me a break from cape and a scan to see if it's working, but scan not till the end of the month. Developed worrying symptom of a swollen eye and double vision. Onc wanted me to come home and have it checked out but I thought 'what's a couple more days' and I wanted to see my son and grandson. Hoping for a CT scan of my head this week. Hugs to all Bon xx ... View more

Good luck Agy, let us know how it goes. Hugs Bon ... View more

I too was convinced that I wouldn't hear from cancer again, my primary was stage 1-2 and at one point a breast surgeon said 'Your cured!'.It's a big shock and it's hard to see women you know around you who are still OK There is lots of support here and once you have a treatment plan in place you can focus on that and a 'new normal' Hugs Bon xx ... View more

Hi Alex I have only been on cape for 6 weeks and am having a break and a scan to see if it's working. I have no experience of post op pain but I have had severe fatigue, sickness, dry mouth and constipation. I usually feel a bit better after a couple of days of my days off but it doesn't always last and the symptoms are still there, just not so bad. I've muscle weakness (finding it hard to cuddle my bouncing 6 month old grandson) and peripheral neuropathy in my feet which I had a bit before I started cape.   This is my experience but everyone is different. I just looked up Velindre and they seem like they might be the right place to give you some answers.   Have you tried contacting the breast care nurses on this website. They should be able to give you some advice.   You feel so isolated and the hospital doesn't always help much. Some hospitals like mine have a secondary breast care nurse but many don't.   Hugs to both of you Bon xx ... View more

So sad to hear the news about Carolyn. She was a good friend to so many of us and I was lucky to meet up with her on several occasions. You can rest in peace and without pain now Carolyn. xx ... View more

Hi Janette I'm so pleased your results were good and after such a long wait. Blame the shortage of radiographers. I get the impression tumour markers are less useful for bone mets than for other kinds. Hugs to all  Bon xx  ... View more

Chowchow go to forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Kisqali-ribociclib/m-p/1203481#M75971 Bon xx ... View more

Hi both I'm on 2300 twice a day and the only serious side effect I've had is fatigue which can be hard to cope with and leaves you feeling isolated. I'm on my 5th cycle and really want a scan to see how things are doing. Onc not keen, says he doesn't think I need one Bon xx ... View more

Nicky, hope you get an appointment through soon and the best of luck with it Bon xx ... View more

Hi Ramade, glad you are doing better. 3000mg sounds like a lot. I'm on my fifth cycle. Fingers crossed for us all. Bon xx ... View more