Breast Cancer Now Forum

Hi SianT, Like Pawsome (who I have found an inspiration), I am also on Palbociclib and Denosumab. I first had Primary Cancer 15 years’ ago and since then have struggled with my energy levels and possibly have undiagnosed Chronic Fatigue.  Prior to my Secondary diagnosis (in the bones) last November, I had spent the previous few years with ever decreasing energy so when I did get a diagnosis apart from being understandably upset, 10% of me was relieved to know I had a reason for feeling so rough.  Anyway, this is my backstory (everyone is different) and I have now had 7 cycles of Palbociclib plus monthly injections of Denosumab and also Zoladex. The latter shuts down my ovaries as I am perimenopausal. Like Pawsome, it did take 2 or 3 cycles to fully adjust to the treatment but as of now, I can honestly say, hand on heart, I feel physically better than I have done in years.  I was anaemic prior to the treatment and I am now on the lowest dose of 75mg. I did start on the highest of 125mg then went down to 100mg but the 75mg suits me and ensures I get the cycle every 28 days.  The treatment can affect your white blood count and so my neutrophils kept being too low (below 1) for the next cycle to take place. Anyway, like Pawsome’s post, I hope this reply encourages and reassures you and your mum. Very best wishes to you both xxxxx.     ... View more

Hi Jennie60, I haven’t had personal experience of changing my treatment so far but I would say it’s perfectly natural to mourn the loss of one treatment and then have to face another one.  Any treatments we have, it becomes like a strange kind of companion, we take the tablet or we have the treatment and we hope and hope it works for us. You are bound to feel apprehensive, nervous and just plain scared about tomorrow, I’d be the same.  I first had chemo 15 years’ ago and I remember feeling so worried beforehand - I likened it at the time to walking into a room from one door and leaving via another.  I sincerely wish you all the best for tomorrow and I hope it goes well. Sending you a big hug xxxxxxxx.     ... View more

Hi, I always think it’s best to let our feelings out as in not push thoughts down and hope all will be ok, not helpful in my own experience anyway. You have every right to feel angry that you are still undergoing treatment and at times it can make us feel dreadful.  With Secondaries, it’s knowing that there isn’t an end date to the treatment, it’s there to keep us alive.  Have you spoken to your oncologist or breast care nurse to see if there can be any tweaks to your current treatment regime? Would you consider counselling or therapy to talk through your feelings? Just a suggestion anyway.  Very best wishes to you xxxx     ... View more

Hi Gillyflower, I think it sounds like you are doing great in terms of a positive attitude. I really related to you mentioning ‘gratitude’. I have found watching documentaries by Simon Reeves have really helped me, wish I could say that I have done loads of reading like you 😀 . With Simon’s documentaries, the focus is on people’s lives and for them most of it can be a daily struggle and full of hardship.  I unfortunately have clinical depression and whilst I was waiting for my new antidepressants to work, the documentaries cemented a strong sense of gratitude and lifted a dark cloud.   Anyway, thank for you all your posts, I find them very insightful. Best wishes to you xxxx   ... View more

Hi Gillyflower, Thank you so much for sharing this - I’ve had years of therapy and counselling mainly due to long-standing mental health issues. The last therapist I saw did mention the word ‘resilience’ to me, no one else had ever mentioned that to me before. Perhaps I was just ready to hear the word and try and act on it.  So when I saw your post, I knew I had to see this. Having watched it, I will try and use the 3 steps mentioned. Last but not least, I take my hat off to the Speaker for her own courage and resilience.  Thanks again for sharing xxxx ... View more

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