Breast Cancer Now Forum

Hi again Yes the news about lockdown drives me mad so I don't watch it any more. 😁 Definitely keep moving if you can, even if it's just a little. In March I came home from hospital on a zimmer frame, I kept moving even if I just went up and down the hall. I'm walking a lot better now with no aides. I believe in the saying "if you dont use it, you lose it". I also take a daily supplement of cod liver oil to help with my joints and also a turmeric supplement. You must check with you doctor before taking these though as some supplements can interfere with treatment. I hope you settle on the zomorph soon, if the side effects are too bad be sure you mention it to your doc, I'm sure they will have lots of options for painkillers. Take care, let me know how you get on with your treatment plan. X ... View more

Hi again I have mets in my spine, ribs and pelvis. I have been on zomorph since mid March, I take one in the morning and one in the evening. I haven't had any side effects with it. I also take 2 Paracetamol in the evening and Baclofen which is for muscle spasms in my back. When I was first diagnosed I took Oramorph which is a liquid morphine but I no longer take it as my pain is reduced.  I believe the zomorph is a slow release pain killer over 12 hours. X ... View more

Hi Michy1 Sorry to hear of your diagnosis. I was diagnosed in March this year so it's quite new for me too. Your right it is terrifying but there is so much support and info on this forum to help you through it. I felt so much better once I had a treatment plan in place. Mine is ER+ and is in bones, liver and lungs. My treatment is Ribociclib, letrozole and zoladex. I'm also on Denosaumaub which is a bone strengthener. I hope you get a treatment plan sorted soon. Good luck X ... View more

Hi Cathyb Fantastic news!!! So pleased for you. Like yourself I have mets in liver and lymph nodes but also on my spine. I am on ribociclib which I think is a similar drug to yours? I'm also on letrozole, zoladex and Denosaumaub.  I had good results too two weeks ago with some shrinkage in the liver so I was over the moon too. Thanks for sharing the good news, it's great to hear positive stories and it gives me hope. 😁 ... View more

Hi Kat504 I am also on round 3 of Ribociclib. So far my bloods have held up OK but I have read loads of posts about doses being reduced and people still reporting excellent results. I think it is all about finding what suits your body. I hope this helps to ease your worries. Great to chat to someone else on the same treatment. Where are your secondaries? X ... View more

Hi Joannen66 Thanks for your reply and clarifying about the surgery.  I hope you get it sorted soon. I only asked as I have read some articles where it has been suggested that surgery can give you a better overall survival even with SBC. I appreciate I'm clutching at straws but just thought I would ask. I don't think there is a facility to private message on here, I will have a look though. Keep me posted and good luck with the surgery if it all goes ahead. Take care X ... View more

Hi Liz0418 Thanks for your reply. I'm so glad your treatment is keeping things stable. I hope that continues. I had good results on my scan last week so I hope that continues. Thanks for clarifying Re the surgery. Take care X ... View more

Hi Joannen66 Thanks for replying. Yes it's definitely great to chat with people on the same treatment.  At the moment I am finding it fine, I don't really have many side effects. I do get quite tired around 9pm but I'm also on strong painkillers (zomorph) so it could be that making me tired. I haven't really had any hot flushes/sweats either but kind of waiting for them to hit me any day!!! I had my 2nd zoladex injection last week and have only been on letrozole since 1st week May.  So far I haven't had any problems with my blood levels.  My oncologist has staged the drugs as he was concerned about tumour flare on my spine but so far been OK, thank god!.  Great news that your 2nd scan was stable. Do you mind me asking about surgery? Is that because they have managed to clear the mets from the rest of the body with treatment and now want to remove the breast tumour?  I only ask because my doc at the start said they don't do surgery with secondary breast cancer but I have read quite a few posts on here and other forums where women with secondary breast cancer have had surgery so I am a little confused.  It would be great to stay in touch with us being on the same treatment. I really hope the treatment continues to work for you.  X     ... View more

Hi there I was just reading your post and noticed we are on the same treatment, Ribociclib, letrozole and zoladex. Do you mind me asking if you are still tolerating it well? I started end of March 21 and so far so good with little side effects. I was diagnosed straight to secondary early March with mets on spine, liver, lungs and ribs.  How long have you been on this combination? Thanks ... View more

Thank you Bernard.  ... View more

Hi there I am also on ribociclib which I started in March. I saw my oncologist today and she said it would be no problem taking a 1 or 2 week break off the drug for a family holiday abroad. She said it wouldn't affect anything. I must admit personally I wasn't planning on taking a break as I have very little side effects and have not yet experienced low white blood cells. But on the other hand if I do experience low white blood cells over the next few cycles I would consider a treatment break whilst I was away as I wouldn't want to get ill while on holiday. Ribociclib is also working well for me along with letrozole and zoladex. I also have denosaumaub bone injections. I hope ribociclib continues to work well for your mum. X ... View more

Hi all I have had my Ct scan results today and wanted to share the positive news. This is my 1st scan since being diagnosed early March, I've been on ribociclib, letrozole, zoladex and denosaumaub bone injections. I have had a partial response to treatment and the lesions in my liver have all started to shrink, they have gone down between 8 - 12mm. The enzyme marker from my bloods has also reduced dramatically which shows the cancer is under control. The mets in my spine were prominent on the scan but I was told this is because they are responding to the treatment. The oncologist said they would have been happy with a stable result but it was even better news that the tumours were shrinking. I know it's a long road and my 1st scan but it's so nice to have some positive news. I hope this gives people a boost and confidence that these new hormone drugs do work X ... View more

Hi Lynnecarr I am sorry to hear about your diagnosis especially as you have been through this before. I'm sure once you get your treatment plan you will start to feel a little better. I am currently on ribociclib, zoladex and letrozole. I had a ct scan on Saturday so waiting for the results now. I haven't had any radiotherapy yet so I haven't experience of the fatigue it can cause. I hope you start to feel better soon. Let me know how your appointment goes on Thursday. Keep thinking positive, the treatments have come on so much in the last few years. X ... View more

Hi there Thanks for your message. I really hope your scan results are positive when you get them. I have spoken to someone else on another forum and she is on the same treatment as you and I. She has been on it for 2 years now since diagnosis and each scan has been stable. Fingers crossed it does the same for us. I have a scan on the 8th May so will be feeling the same as you waiting for the results. Take care and think positive. Xxx ... View more