Breast Cancer Care Forum

Hi I don't get my tumour markers done. I am in Scotland.  Is it something you have to ask for? Fantastic thunder and lightning storm going on just now. Just a pity my washing is out on the line getting soaked.x ... View more

Hello  Sorry you have to be here but you will find plenty of support and advice. I was diagnosed with secondaries in my bones two years ago and have been on the combo of Ibrance and letrozole for fourteen months. I have also been getting monthly denosamab injections for my bone mets but have recently changed this to every two months. I had a bit of nausea and dry eyes at first but it settled down. All in all so far it has been very doable. I work fulltime and apart from eight weekly bloods and the denosamab injections life is pretty much as it was. It did take a few months for me to stop constantly thinking about it though. I have just had my latest scan results and I am currently NEAD. Are you going to be getting denosamab for your bones?xx ... View more

Hi. I am on denosumab. I get my injection every four weeks at hospital when I am picking up my palbociclib. I can be in and out in 20 minutes but sometimes there is a glitch with the prescription or no room available. I have asked if I could have it done at the GP but was told as it was a relatively new drug it was to be administered at the hospital.  I don't always see my onc when I am in. If my bloods are OK I get a phone call the evening before to ask how I am doing. I have the option to see him if I want to but much as he is lovely and very approachable I prefer not. I find it is the best approach for me at the moment.  ... View more

Hi. I have had eight cycles of Ibrance and letrozole. I had a scan at the end of June. Bone mets healing and no sign of active disease. I had been on letrozole for eight months previous to that. All in all feeling well and hoping this combination continues to work. Hope it works well for you. ... View more

Great news Dawn. I think you are just ahead of me on palbociclib. I am fininhing my third lot. Nobody has mentioned scans though and I am burying my head in the sand and not mentioning them either.x ... View more

I work in secondary and primary schools as well as various youth groups. I didn't even catch a cold the winter I was on chemo. Did have a cold this winter but think a picked it up on an airplane. I wonder if working with so many snotty noses and getting sneezed over hepls build up your immune system.x ... View more

Hi Anne.  I was diagnosed with secondaries last July and I have continued to work full-time. When I had my primary a few years ago I did have some time off for surgery but did manage to work part-time through chemo. My work was very accomadating.  These days I go once a month to get my denosamab injection. It does mean I am a couple of hours late in that day but apart from that treatment (so far) as not effected my work. I am on letrozole and ibrance so only need to take two pills. One in the morning and one in the evening. At the moment all perfectly do-able.xx ... View more

Hi Wendy.  I am sorry to hear the letrozole and ibrance are not working.  I am on the same treatment and don't have a clue if it is working or not as I haven't been scanned since last June. I am working fulltime and like you need everything to be as normal as possible to keep myself sane.I can't really help with any knowledge of weekly chemo but did manage to keep my hair using the cold cap when I had my primary.x ... View more

Chris, I hope Ladybird is comfortable and you are okay.x ... View more

Thank you girls. People say it is only a dog but you know how it feels.x ... View more

I am afraid I hate the taste of tumeric that is why I take the capsule. I realise it is not the best way to take it but as it seems to be working I will stick with it for now. It has worked really well for the animals. Horse not keen on the taste but I put garlic in his feed which he loves so no problem getting him to eat it. He is getting on at nearly 28 and a few years ago he was really starting to stiffen up so I was buying all sorts of supplements and fancy feeds. Nothing really improved things until I started on the tumeric. Great for the dog as well but unfortunately he died last weekend. Nothing to do with his arthritis though. Sad house this week. x ... View more

Hi Kate I make tumeric paste for the horse and the dog but I am afraid I just buy Curamed curcumin capsules for me. Forgot to add I also take cod liver oil. Started that long before I was first diagnosed so dont know if it is helping. When I started Ibrance a month ago  I had to let the pharmacist know everything I was taking. She was okay with it all.  Sitting infront of the log burner listening to the wind outside and thinking might be a while before I am out riding again.xx ... View more

Hi Riversidedawn I was diagnosed in July with a bone met in my pelvis.  I am on letrozole, ibrance and denosumab injections. My hands had got a bit stiff when I had previously been taking tamoxafin.I started taking tumeric and that helped alot. Since I started on this latest concoction my fingers have got increasingly worse. I started taking glucosamine & chondrotin as well as the tumeric and have seen a vast improvement. I was having great difficulty tacking up my horse. Hands just wouldn't co-operate. Now I would have no problem if only he wasn't stuck in his stable because of the snow.x ... View more

Hi Moijan Did you have to try the generic brands of letrozole before they prescibed femara? Benten.x ... View more

Carolyn you're a star. Perfect timing. Phoned chemist today and still no joy with Accord. Told me the names of a couple of brands he had in stock. Got home from work and read your post. Chemist is open until 7pm. Straight in the car and home with Sandoz. Popped the little orange pill, sat on the sofa for 10minutes waiting for a side effect, got fed up with the One Show and took the dog for a walk. Decided to start Sandoz straight away because I would just worry about it and convince myself I would be miserable over Christmas.  This is what I love about the forum. Always somebody there for you.xx ... View more

Thank you Janette and Carolyn for your replies. My Mum was on letrozole for five years and took any old brand. She couldn't tell the difference. She can't understand what I am going on about.   My local chemist is excellent and I have used him since the kids were babies. He will even phone me to say if he is having difficulty getting something. Will just need to keep my fingers crossed he manages to get them or I could just ask Santa.xx ... View more

Hi Juma I had a zometa infusion in July when I started treatment. Was okay for a couple of days and then my met started to hurt. It went on for about three days then felt fine. It did make me tired for a couple of days. I only had the one infusion because I was changed to monthly denosumab.  Neither up nor down with that.   Girls can I please have some advice about letrozole. I have a week's supply of Accord left. Chemist trying really hard to get some but no success for a fortnight now. He only has Cipla in stock and I am not going there again. Can anybody suggest another brand that they have found tolarable, He is waiting for me to come up with another name. Thanks.xx   ... View more

Hi Riversidedawn. Nobody in my family has come right out and said it but it has been heavily hinted that if I had completed my course of chemotheraphy this might not have happened,  My medical team stopped my chemo after four sessions because of my reaction to it,  I was borderline for chemo. I faithfully took my litle tamoxifen pill every day and it still came back after three years. I think they feel I shoud have fought to carry on with chemo. I refuse to beat myself up about it. I did what was best for me at the time. Lots of people complete chemo and take their little pill for years and it still returns,  Try it again. Like Kate says things change.xx ... View more

Hi. I also now get Accord all the time.  Cipla and I did not get on at all.  The problem I have is they never seem to have enough of it in stock to give me the full prescription.  Glad this came up because I had forgotten I had to go and pick up the rest of them.  Anybody else have this problem?  Benten. xx ... View more

Hi Riversidedawn. So sorry that you had to join us on this forum but it really is the best place to be after your diagnosis. I had my diagnosis in July after a 10 week wait of scans and biopsy.  I have a met in my pelvis. Those 10 weeks were horrendous. Not sure how I kept functioning.  It was almost a relief to hear the words, 'you have a 2cm bone met in your pelvis'.  I started reading the forum in May and found the ladies on here so reassuring and at times so funny it really helped me through a very dark, lonely time. Five months on I am on letrozle, denosumab injection monthly and about to strart palbociclib in the New Year. Life at the moment is carrying on as normal with just with a few more aches with the change from tamoxifen to letrozole and appointments. I was due to change anyway. I am perfectly aware that it could change any time but no longer feel that the end is nigh. Focus on Christmas as much as ppossible. I can go hours sometimes and forget about it. I had very a stormy meeting at work yesterday.  Believe you me cancer did not enter my mind at all last night, Was planning a murder as I gluggged a large glass of wine.xx ... View more