Breast Cancer Care Forum

Hi 4748, I am on the same treatment plan as you (plus I also have Zoladex/Goserelin injections). I was diagnosed with bone mets less than 3 months ago so I can’t give you personal confirmation as to the efficacy of Letrozole and Palbociclib.  I do know that Palbociclib was only approved by NICE in the last few years and I have seen posts on here from ladies who have had positive results.  However, I can personally give you my own experience re hair thinning.  After the first treatment cycle, I lost a fair amount of hair but this has has now slowed down to just a ‘normal’ amount of hair loss.  I’ve read elsewhere that this has been the pattern with other women too.  Best wishes xx ... View more

Thank you Ndw32548, I ‘hugged’ your reply at the time but your words and advice stayed with me.  I have now had to put my hands up and have amended my original post as due to tiredness etc. made some errors in my answers on my online application. I used to work in car insurance many moons ago and I have ever since, had the personal opinion of ‘how can we not pay’ rather than how can we pay.  They say there’s no fool like an old fool (that’s me) and I thank you again for your sound advice.    ... View more

Hi Jippy, I was on the Cipla brand on my first cycle - I’ve just started my third cycle.  However everyone reacts differently but I hope my positive experience is encouraging  xxx ... View more

Hi Grumpy, I am delighted for you and being mad on animals (have one cat who is spoilt rotten and also had the pleasure of growing up with a Border Collie) so pleased for your dog too  xxx ... View more

Hi Nellie, Thank you for suggesting Boots, I’ve been accepted by them this evening. I was declined by 2 others before that and was getting stressed but I applied online and it’s a ‘yes’ from them. My partner and I are going to Malta later in the year.  I hope you’re keeping well and what a fantastic holiday you and hubby have to look forward to  xxxxxxxx ... View more

Hi,  we’re going away in a few months’ time.  I did it all online as I am not very confident on the phone. After 2 insurers saying ‘no’, I tried Boots and I am pleased to say I had success. I also have ‘depression & anxiety’ so there were lots of questions on that too and is another hurdle to get over. What I liked about the quotation process is that you can type in your medications   Update 6/2/20 I belatedly printed off my insurance paperwork and reading it through with a fine toothed comb, realised I’d made several errors in my application. I was tired and stressed when I did the application online (I’d already had 2 online declines) and had also spent nearly 30 mins on the phone to a third firm who at the end told me they’d need to refer me to their Underwriters but our holiday was too far in advance. The sting in the tail was that I needed to reapply within 2 months of the holiday. Being impulsive, I then applied to Boots, but have now cancelled under the 14 day change of mind. I am now going to thank the lady who responded to my original post as she had wise advice!    ... View more

Hi Misty11, You are not imposing at all - the Internet is great for making the world smaller and a warm welcome to you. It’s great you have found the posts encouraging. I appreciate it’s a worrying and scary time for you and I sincerely wish you all the best with your upcoming scan and the biopsy.  xxxxxxx  ... View more

Hi Pawsome, I’ve said it before (I think!: but I find you an inspiration. We all have our own journey, our actual lives and our treatment plans. Similar to you, I have no aches and pains being on Letrozole - prior to starting my treatment, my right shoulder would ache so much, I couldn’t get to sleep.  The long-standing problem with the ache and tenderness in my left hip was worsening and I had to go to sleep with my left leg at a right angle. Getting out of the car or getting off of the sofa and then walking, my joints were extremely stiff and I felt I was like an old lady (I’m 50). Since first taking Letrozole about 7 weeks’ ago, my mobility has improved so much and the aches have gone. Ladies, please don’t let the fear of side effects prevent you from taking medication which can improve your quality of life. Best wishes to everyone xxx ... View more

Hi waitingangel99, Sorry to hear you find yourself back here. I hope you don’t have to wait too long to get your biopsy results.  Re your query on medication, I don’t know.  You can post it in ‘Ask a Nurse’ section but you may not get an answer until tomorrow at the earliest. Best wishes to you. ... View more

Hi Grumpy, You gave the aromatherapy a try. I have really sensitive eyes so would probably have the same issue. Sincerely hoping you will get good scan results. : ... View more

Hi Jefner, I haven’t had experience of this but you have helped me out on here since I joined the forum and I just wanted to say I am thinking of you. I sincerely hope others will reply with their experiences. It sounds a good idea to ring the BCN number tomorrow - your thoughts must be swirling in all directions at the mo. I am truly disappointed that you’ve had this telephone call and here’s hoping an answer or resolution can be found soon. Sending you a hug and my best wishes  ... View more

Hi alleyh, There is a Breast Cancer Now SC Group which meets in Frimley (Surrey) - I appreciate it’s not in Berkshire but it’s for Secondaries and run by BC Now for women in Surrey, Hampshire and Berkshire. if you go in on the main website, the details are in the ‘Near you’ section.  xxx ... View more

Hi Linda, I am not on this treatment and do hope others will let you know their personal experiences. I just wanted to wish you all the very very best with it. Lots of love to you xxxxxxxxxx  ... View more

Hi Linda, I am truly sorry to hear that the news wasn’t good. You deserve a lot of support from all of us including me.  I am going to keep everything crossed and sincerely wish that your liver and kidneys are ok for the new treatment. Also, you have been through a lot recently particularly with the death of your sister and I send you my love and best wishes. xxxxxxxx : ... View more

Hi, I just wanted to add my input too to encourage GiulianaB. Firstly, a big thank you to Pawsome from me   I sincerely mean it as we are both on the same treatment plan and I am probably going to echo a lot of what you’ve already said... I had my second cycle of treatment today and I have mets in my bones. I don’t know the extent as although I’ve now had a bone scan due to a bit of a mix up with appointments, I won’t get the results of that until early next month. However, until last week when I was on the week of NOT taking the Palbociclib (21 days on), I had no aches and pains.  It was really noticeable and it was great for 3 weeks whilst on it, not to feel stiff and achey.  I’m quite an upfront person with the nurses and told them on the phone today and in person that I’ve had dreadful and excessive wind (I do have Irritable Bowel Syndrome) ) which has been met with good humour and today, they’ve prescribed a different laxative for me than the one I had for IBS.  For me, a lot of wind is not an issue really, just not great for my partner - he told one of the nurses today that our cat had noticed it too!  I admire Pawsome for working full-time and climbing up hills - low energy is a chronic issue for me and my energy levels have dipped but I am adjusting my plans around that. Best wishes to all of you especially GiulianaB and thanks again to Pawsome xxxxx   ... View more

Hi Grumpy, Yes, onwards and upwards!!  PS Let me know if you need to scream at anyone (“psychological”) and I’ll scream too. Heehee xxxxx ... View more

Hi everyone, Happy New Year to you all. Elizabeth, glad to hear you’ve moved and your appointment went well.  I had expressed interest in joining you all but things are up in the air at the mo re hospital appointments so won’t include myself for your January meet-up. Best wishes to you all xxx ... View more

Hi Grumpy, I can fully relate to your wish to keep your diagnosis private, I have only told people on a need to know basis so far about my Secondary diagnosis and with my ongoing fatigue since my Primary, I used to just say I’d had a serious illness and hadn’t had the same energy levels since.  On the outside looking in, I just wanted to suggest re you being on your own, could you perhaps ‘outsource’ tasks/jobs like gardening and decorating so it’s a payment and the person is there to do a job not question why you’ve asked them. I appreciate funds may not allow for this but just a thought. About a year after my Primary,  I paid for a gardener to visit every 3 weeks as (at the time) I was on my own and the large garden became a burden.  Fatigue doesn’t seem to be taken seriously does it - I’ve had someone say to me ‘push your way through it’, if that really was the solution, I wouldn’t have felt so drained and for so long! xxxxxxxx ... View more

Hi Grumpy, I just wanted to say ‘hi’ and empathise with you on fatigue.  However, I do need to acknowledge your good news of the lesions shrinking/disappearing - that’s fantastic.  I am also on the same treatment as you and just nearing the end of my first cycle.  I am no stranger to fatigue, have battled with it and against it for years and for too many years I relied on sugar and caffeine to keep me going when my body was really telling me to rest. If possible, REST when you do feel fatigued - if you feel guilty or worried you’ll oversleep, just set an alarm. Try and get a bit of fresh air when you can, just a short stroll is fine, doesn’t have to be a long walk. Avoid sugary drinks and caffeine if you know you are relying on them to keep going. I avoid sugary drinks but I do love coffee and will treat myself to a Nespresso most days however I try and drink decaf if I know I am reaching for a drink due to tiredness. I wish I could give the secret to no longer feeling fatigued but you do have to be kind to yourself as it’s not visible to others - in my experience anyway - and I’ve had people over the years tell me how well I look when inside I have felt horrendous.  I sincerely wish you well and it’s just occurred to me that also up until the 21st December, daylight hours were shorter - hopefully with each day and those extra minutes of light, some energy may return. Best wishes xxxxxxxxx  ... View more

I hope I have helped, I am a worrier by nature and wasn’t sure if I’d got on about myself too much. My intention was to give background to my own situ and not to detract from your own very valid worries and concerns.  (As well as fatigue, I lack confidence and worry too much) If I have helped in any way, I am genuinely pleased but don’t ever minimise your own experience- everyone’s situation is different and we’re all just doing the best we can. You have a right to feel whatever you feel and fear, anger, despair, any feelings, they are yours.    I just felt affinity with your fatigue being overlooked - and also the shock of feeling tired to being told Cancer is back.     Lots of love to you xxxxxxx ... View more