Breast Cancer Now Forum

Dear Jo, I am so sorry to hear that your previous treatment had stopped working. I am not surprised you feel overwhelmed. By the sounds of it, your life has been turned upside down since your diagnosis. Are you able to access any counselling or therapy either via your hospital or your G.P.? Sending you a hug xxxx. ... View more

Dear Alice, Thank you so much for taking the time to write on here at what must be a difficult and sad time. It’s touching that your mum left notes on who she wished you to communicate with on her behalf. You have written such beautiful words which are a credit to your lovely mum.  I am pleased and relieved to hear that your mum Pam passed away peacefully with your Dad by her side.  Very best wishes to you and your family 💖 💖 💖 . ... View more

Dear Siany66, I am genuinely sorry to hear that your sister’s markers have gone up. I am still on my first line treatment, Palbociclib, so don’t have personal experience of second line treatment. However, I do know from other men and women’s experiences and also what my own oncologist has already mentioned to me, that there are other oral chemo tablets to take.  For example, there is one called Capecitabine which might be my next line of treatment. I have been reading of several others on this site but can’t recall the names of them so won’t misquote. Very best wishes to your sister. Also, I am sure it helps her having such a supportive and caring sister. xxxxxxxxxxxxx ... View more

Hi Amanda, Hello and a warm welcome to you.  It sounds like you unfortunately had quite a battle to get heard and I am truly sorry to hear this. I am adopted and don’t know any family medical history and spent a couple of years or so prior to my eventual diagnosis, via Haematology, convinced that I just had worsening arthritis as my joints were getting more and more stiff and achey. As I understand it, I have microscopic cancer in the bones dotted all around. For me, it was the onset of worsening and crippling fatigue that had me for the best part of 7 months boomeranging to the GP and back having various blood tests. However, your situation sounds horrendous. I am on the same treatment plan as you and in common with you, sometimes have an extra week’s break due to low neutrophils too. Some of us just seem more prone to this than others.  I am sorry to hear about your neck, I don’t have experience of this but hopefully others may be able to give you feedback on their own experience. It’s great to hear that you have returned to cycling. I am sure it gives you a lot of enjoyment. Sending you my very best wishes. xxxxxxxxxxx   ... View more

Hi Roxyb11, Firstly, I want to say hi and to send you a virtual hug.  You have had a lot to deal with in a short space of time and you need to be kind to yourself. You’ve come to the right place here as there is a lot of support and knowledge.   I too hesitated in telling my elderly parents so do understand your fear about informing them.  Seabreeze has some fantastic advice in how to move forward with this.  My personal experience was that my Dad was undergoing tests for prostate cancer at the time plus my parents were then about to fly abroad, long haul, for several weeks depending on the results.  They did subsequently go abroad and I told them my news on their return.  You may wish to tell your parents sooner but please don’t feel you informing them will break them.  Their response may surprise you. However only you will know when and how to tell them. Sending you a well deserved hug. xxxxxxxxxxxxx  ... View more

Hi, I have been on Letrozole for over a year and my lips are definitely dryer. I use a lip balm on my lips before I go to bed at night and it definitely helps.   Good luck with your treatment. xxx ... View more

Hi Gillyflower, This is wonderful news! So pleased and delighted for you. XXXX ... View more

Hi SecondarySister2, Hopefully someone will come forward soon with their own experience of Ribociclib. You can enter the word next to the magnifying glass icon which is to the right of ‘This board’ and see previous posts on Ribociclib. I have been on Palbociclib which is in the same ‘family’ of meds as Ribociclib. Re the side effects, it is a scary and daunting list of side effects but on a previous post, someone wisely said that for aspirin or paracetamol, over the counter tablets, there’s a list of side effects.  I’ve been on Palbociclib for a year now and have had my treatment delayed by an extra week for at least a third of my cycles due to low blood count.   It is a side effect of the treatment and just seems to affect some people more than others.  My oncologist is pleased with my CT results which have all come back as ‘stable’ and he’s told me that my cancer makers are now within normal range. I do hope that your mum is able to continue with Ribociclib and she also gets encouraging scan results. Best wishes. XXX ... View more

Dear Helen, Thank you for your beautiful words and for letting us all know. I am truly sorry to hear that Nicky has passed away. I always read her posts and gained so much knowledge and information. My sincerest condolences to her family and to wonderful friends like you and the other ladies in your support group.  XXXXXX ... View more

Hi Jo, I’m sorry to read that you are feeling lonely and overwhelmed. I am on the same treatment plan as you and by the sounds of it, diagnosed with bone mets just after you. Just referring back to one of your other threads, I have CT scans every 3 months.  Do you have a breast care nurse or specialist nurse you can contact? This year certainly hasn’t helped with isolation and being apart from people.  Would you consider counselling? I was offered some at my hospital but due to Covid it got postponed and I do see or Skype my own counsellor/therapist whenever I feel ‘stuck’. I just wanted to reach out to you and not sure if this post helps but please keep in touch with us on here as no one should feel alone.  Sending you a virtual hug xxxxxxx. ... View more

Hi Jambleg, I don’t think you are feeling sorry for yourself, as you put in the heading, you are feeling a bit lost. To have lost friends in the past few months must be extremely hard, tough and upsetting. I think you need to try and be kind to yourself, easier said than done. I am not very keen on appearing on Zoom either but I think you need to try and reframe it and focus on why you are on the Zoom in the first place. You are there to connect and chat with friends and/or family and they want the contact too. Real friends will be pleased to have contact with you and won’t be judging how you look. I have immediate family who live abroad and if they FaceTime me unexpectedly during my morning/their evening, I can feel self-conscious and really that’s just a waste of energy.  The days are getting shorter at the moment, it can be dark by 4pm but I’ve found just going for a short, local walk in the morning or early morning can lift my mood and I enjoy meeting others on the way. I take tablets for severe depression so I do know what it’s like to feel low and I do have to push myself to get out of bed some days. As Tili said, take each day at it comes and do be kind to yourself. Very best wishes. xxxxxxxxxxxx. ... View more

Hi Dolly, Sorry to hear your news but I really want to second Shi and confirm that you have come to the right place for information and support. I am on the same treatment plan as you, also oestrogen receptive. I was diagnosed nearly a year ago and have been on the same treatment plan as you since last December. You mention being breathless, I am not a nurse or medically trained but I do get breathless and with me, it tends to be when I am on the phone speaking to one of my nursing team. I have a habit of ‘shallow breathing’ and I can get quite nervous when on the phone so put it down to that. However, you may wish to get advice directly from a medical specialist.  Like you, I had the most dreadful backache prior to my diagnosis and for me, certainly in the first few months of being on my meds, my aches and pains noticeably reduced. Re positive thinking or maintaining a positive outlook, my personal advice would be that you take each day as it comes and in its’ own right, don’t put pressure on yourself. At the moment, you are understandably in shock and processing your news.  There are men and women on here who have lived with Secondaries for many years, new treatments are being approved all the time and Palbociclib, for example, has only been a available on the NHS for about 3 years. So far, all my scans have been stable and for that I am truly grateful  You take care  xxxxxxxxxxxxxxxx. ... View more

Hi Icemaiden, I couldn’t give you a more comprehensive explanation than Nicky already has as her wealth of knowledge and clear way of explaining things is top notch in my opinion. I was diagnosed nearly one year ago and although I’ve had regular blood tests I wasn’t aware of my tumour markers until 3 weeks’ ago when I had my first face to face appointment with my oncologist since March. He told me that pre-treatment, prior to December 2019, my markers were 112 and are now at 32.  I am ER+ (Oestrogen Receptive) and my treatment is Palbociclib and Letrozole. I am peri menopausal so also have Zoladex injections to shut down my ovaries.  Best wishes to you xxxx. ... View more

Hi, I’ve been on Ibrance (Palbociclib) and Letrozole since last December.  I have Secondary Breast Cancer in the Bones. On the whole I have found it to be a very manageable treatment plan.  With Ibrance I started off on the highest dose of 125mg but after two cycles I went on the 100mg dose and for the past few cycles, I am on  the lowest dose of 75mg.  Every month you are required to have a blood test and from the beginning even until my last cycle (treatment) I have low neutrophils as the Ibrance affects your white blood count (WBC). Most hospitals expect a count of at least 1 to enable the cycle to happen and for me, it is a struggle to reach that 🥴.  Since my Primary diagnosis and treatment over 15 years’ ago, I have been left with low energy levels and probably have undiagnosed Chronic Fatigue so it might just be me (some women work full time through taking Ibrance and Letrozole) but I do have days where I sleep for hours. Very best wishes to you and my advice would be to go for it, jump in and see how your own personal journey with these tablets goes. xxxxxxxxxx       ... View more

Hi Pawsome, I’ve only just seen your post and I am delighted for you! I feel a kinship with you as my Primary was in 2005 and my Bone Mets were diagnosed last November. I am also on the same treatment as you. Again, I’m just really pleased for you and you’re right, this will give hope and reassurance to those newly diagnosed. xxxxxxxxxxx ... View more

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