Breast Cancer Now Forum

Hi Hannah, now into week 7 and things have finally settled. Had so many side effects the worst being the tummy troubles which had me virtually housebound and right off my food for a while which is very unlike me! My Mum was very poorly in hospital when I started, I got shingles 3 days in and then Mum died which caused a huge falling out with my Sister so some of the side effects may well have been due to that . Ended up having a 10 day break after just one months treatments but now 5 days in to month 2 on a reduced dose of abemaciclib (100 mg) and tummy is good so far so I plan to return to work on Monday all being well. I would love to meet up when you feel up to it. Would also love to hear from anyone else on the Abemaciclib, fulvestrant, Xgeva combo or similar as i know it is fairly new. Steph  ... View more

Hi Hannah, hope you are well. I’m not sure which treatment you are on but know you live in my home town so under same team. I’m now 3 weeks into treatment and really struggling with diarrhea that comes on so quickly it’s getting really debilitating.  2 days in I had a pain in my side that turned out to be shingles so 5 tablets a day for a week which also has the side effect of diarrhea. Was hoping last week would be better as they had finished but I think it was worse.  I have now had 3 weeks off of my beloved job and wondering if it will ever settle. I now have a bottom lip covered in little ulcers and itchy spots on my upper legs.  I did get a tip from another site to take  Abemaciclib with high fat foods like peanut butter, I was hoping this was the breakthrough but not so far, I hate peanut butter too lol. My Mum died on Tuesday so have added stress of funeral arrangements and a fall out with my Sister so maybe I can’t expect to pick up yet.  Would love to meet up in a few weeks when I will hopefully get my positivity and my stomach back. I hope you continue to do well and sorry for the moan. 😆 xx ... View more

Hi Hannah it’s good to have contact with others in the same town going through treatment.  Glad yours is going well apart from the SE’s our biggest dread! Tomorrow’s the start for me except for 4.5 years on Tamoxifen and 1.5 on Letrozole unfortunately I guess the later didn’t work so I find myself here. Perhaps we can have a meet up when I have settled in to my treatment. Hope you continue to do well xx ... View more

@Anne30 wrote: Hello. Sorry to hear you’re joining us but welcome. It’s a helpful place I find. I have mets in my bones. I’ve been on Palcibiblib (I can’t spell it) Anastrosole Zometa and Calichew since diagnosis straight to stage 4 in   March 2018. I’m scanned every three months and so far they have been encouraging. I work full time and feel fine. My blood counts are too low and times and the palciobiblib is delayed a week. I’m only on one week on one week off. It sounds as if your treatment plan is very similar - amiciclib is newer. We’re lucky to be on these new treatments. My advice would be keep going out and enjoying yourself. I’ve pretty much given up alcohol as the nurse advised me to do that to give the treatment every chance of working. I also eat healthily. A lovely lady on the forum has been very helpful to me and she advised diet changes. All I can say if it’s any help is that I’m over a year in and feel fine x Thanks Anne that’s really good to hear xx ... View more

Results day yesterday, lost count how many vertebrae affected but don’t think there were many that weren't! Also on skull, pelvis and concern about left hip so booked for X-ray. Good news is no organs affected (brain not scanned though) I have no symptoms whatsoever which I am grateful for. Starting  Abemaciclib,  Faslodex and  Denosumab on 5th August.  Would love to hear some more details from all you lovely long timers as I really hope to be here in 10 years and beyond!  How old were you when diagnosed, I’m 58, had stage 2 6 years ago, new stage 2 diagnosis 8 weeks ago then secondary (so stage 4) 4 weeks ago.  What treatments have you had over the years and do you follow any special diets? I am a healthy eater who likes treats too, I also have a very busy social life and like a drink at weekends but wondering if I need to drop the treats and alcohol.  Onc said not to worry about fad diets as it’s stressful enough dealing with the cancer, great to hear but then you wonder if she’s thinking you may not have long so enjoy it 😬 . Anyone else in Essex near Colchester that would like to meet up or start a meet up group?  Thank you all, I have found this group invaluable and I’m sure I would be in a crumpled heap without it. Xx ... View more

Thanks Riversidedawn, so if I want to comment on this thread I have to use the reply button on someone else’s post? Sorry if I am asking the obvious 🤣 xx ... View more

Hi G i also had to ask what lesions are and got the same answer, onc explained that she was using the terminology that the radiographers used in my scan report as that was what she was showing me at the time.  Re the Magnesium with Calcium and VitD I have a feeling I was prescribed Calcium after a bone density scan to check bones after 4.5 years on tomoxifen, whatever it was if gave me terrible constipation so I stopped but was told by someone that taking magnesium with it can help with that. I am due to take Calcium & VitD when I start my treatment so would be good to know people experiences.  Sorry to put this on your post but can anyone tell me how to comment on this thread, I have only commented by replying to others as can’t see how to do a fresh post and the help guide didn’t help lol. Xx ... View more

Hi Vercors, can you tell me what site you post on on Facebook please. All this is very new to me and I want to read of other experiences and helpful advise and tips and much as I can x ... View more

Hi Pea I had my first appointment with my oncologist this week after being transferred over to the medicine from surgery following new diagnosis of secondary in bones.  I had lots of questions one of which was about support groups where I could meet others with the same or similar diagnosis.  She advised that there were none that she knows of but was very negative about it which was so disappointing.  She felt that because everyone had different diagnosis, treatments and outcomes it would be unfair to those not having good results or struggling emotionally to cope.  I sort of see her point but I know you are finding it really helpful and with my experience on this forum I feel it would be really good for me too.  I work at the hospital so I am thinking maybe it is something I could look in to starting. Any idea how the group you go to was started? I would love to hear more and any contacts or literature you could let me have would be fab. Steph x ... View more

Hi Nicky Thank you so much for researching and finding the info on the treatments they are proposing, so good to have an explanation in terms that I can understand.  Also the advice on other areas of this website that I was unaware of, I tend to use my phone for just the Forum but will try to find the time to get on my laptop and have a proper look.  Since this horrible diagnosis I have been filling my days with work and maintaining my previously active social life with the aim of keeping my mind busy and carrying on as normal while i have no symptoms and side effects from the treatment when it starts. i had forgotten about radiotherapy, my Husband was asking what they will do if they feel the area at the top of my spine is too weak to start treatment and I said surgery but maybe radiotherapy will be the answer. I had radiotherapy on my breast 6 years ago and tolerated it really well with no side effects, I know different areas of your body can react differently but it could be a better alternative to going under the knife again.  Really appreciate your continued advice and support.  Steoh x ... View more

Hi Grumpy I am a new here too and also owner of 2 beautiful rescue dogs. I am still on the rollercoaster of tests and additional diagnosis so I haven’t started treatment yet but am very lucky that I appear to be symptomless despite the fact  I seem to have extensive mets in my pelvis and spine (that’s so far as full body MRI booked for next week) I am trying to carry on my life as normally as possible, I’m 58 married and work full time at the hospital were I am being treated. Working full time means I don’t get to walk my dogs every day but even a 5 mile walk I would struggle with normally so I do admire you. I so get the head tilting sympathy thing, I wonder if anybody actually feels the benefit of that, I also hate Chrysanthemums!  I hope your energy levels do return and you will get more great advice from here. Also good to hear you have a good Oncologist and supportive GP. As I am still at the tests stage my GP hasn’t been involved yet although letters do go to the GP practice,  can you tell me in what way your GP is involved? Maybe because Colchester Hospital has breast care & a secondary breast cancer nurse they take the place of the GP care?  Here’s wishing you some lovely walks in the summer sunshine with your little dog and hope your energy levels return soon.  Steph      ... View more

Hi Rachel Thank you for the info and link to your blog.  I have just read your story and a bit about your journey and realised you have passed your 2 year anniversary which is great news. Please update your story with your 2 year anniversary so that anyone reading knows you are very much still with us.  I will certainly be dipping in again to read all the great info you have kindly added. Steph xx ... View more

Hi Clarence I am so sorry to hear you are and have been having such a difficult time.  I discovered The Thrive Programme by Rob Kelly a few years ago and with the help of many sessions with a Thrive Consultant via Skype I made great progress with dealing with a life long phobia (I’m now 58).  I had tried so many treatments over the years that didn’t help at all, some actually made me worse! The Thrive Programme is a fabulous book that can be bought from Amazon for around £25 and well worth a look. It takes some work and you really need to apply yourself and stick at it and can also get help with regular seasons with a Consultant. I paid £650 to mine and that was for as many sessions as I needed for as long as I needed until I was where I needed to be, well worth the money. They also have a website with testimonials from people who have transformed their lives. I hope this helps. XX  ... View more

Hi Pea, I saw an oncologist yesterday, not the one I was expecting to see, he is off sick and they don’t know how long for.  Unsure if I will be under his care when he gets back or if I will stay with the lady Consultant I saw. So they got my CT scan on the screen and tried to show how the lesions show up on the scan. They are in my spine as well as my pelvis and they are concerned about an area at the top of my spine in my neck. I have now been booked for full body MRI, a bone scan and an ultrasound, results will go to spinal surgeons to see if they need to do anything to strengthen my spine before treatment starts. Treatment plan is  Verzenios   Abemaciclib chemo tablets and Denosumab bone strengthening injections , I also seem to have a leaflet for Fulvestrant (Faslodex) can anyone tell me anything about these treatments. Still feeling fairly positive mostly due to you wonderful people on here, not sure how many lesions on my pelvis and spine but the good news is it looks like my organs are clear. There are what looks like 3 small cysts in my kidney but onc said most people have these and they are harmless but I think that is what tomorrow’s ultra sound is going to double check. Worries now are that full body MRI could show more mets in other areas and what damage they will find in my spine. Still feeling very well and no pain at all which they seem surprised about. Steph xx ... View more

That’s amazing, so admire your decision about keeping it to yourself and so good to know that you feel well, look well and are 4 years in. I am guessing from this that you haven’t had chemo? Hard to believe they can’t find your primary but know it is breast cancer, I have so much to learn.  I have been at work this week and finding it really easy as all my colleagues were updated at my request and it’s like nothing has happened, until I got the call this afternoon. MDT was yesterday, I have an appointment at 9am tomorrow, I have been squeezed in to a very busy clinic as the main onc (my first choice) is off sick. So anxiety set in but I’m slowly getting it under control. I will let you all know the outcome, praying it is something without too many side effects but you lovely people have made it all so much better, thank you so much. xxx ... View more

Thank you so much for all the info,it’s just what I needed! Dreading being recommended chemo as it terrifies me. I have had a sickness phobia all my life, I have improved it a lot recently by going through a specific programme and working at the hospital but it still scares me.  I am so tough with everything else and have a very high pain threshold which is why I would always opt for surgery normally. So good to know that treatment also doesn’t take over your life and that you can have long periods of feeling well. I have no pain or any sign I am not well, I have a healthy appetite and no tiredness so hard to believe I have incurable cancer. I just suspect that once I start treatment whatever it is and have got to go through a period of feeling and looking unwell and think that will really bring me down and make me think that things aren’t going well if that makes sense. Anyway I am rambling on! Hopefully in the next few days I will find out the extent of the mets abd what treatment they recommend. Thank you again for taking the time to help me feel more positive about life from now on. Steph xx ... View more

That’s really helpful, thank you so much xx ... View more

Hi Anne  I was very interred to read your post as I have just been diagnosed with bone mets a few weeks after being told I have BC for the second time.  The first time was 6 years ago when I had a WLE, radiotherapy, 4.5 years of tamoxifen and currently on Letrozole. I was for to go in for single mastectomy with immediate reconstruction this week but during the tummy scan needed to locate blood vessels bone mets were found in my pelvis and the op has been cancelled. I am now awaiting further scan results and appt with oncologist to find out my new treatment plan.  What worries me is what will be done now to cure the breast cancer.  I can see you were diagnosed with both at the same time, are your treatments tablet based and are they fighting the breast cancer as well as the bone mets. So good to hear you are feeling well xx ... View more

Wow that is so good to hear and very happy for you and your family.  I have had great care from Colchester Hospital and have actually worked there for the last 4 years but after reading lots of posts on here I really feel they should have given me some helpful info with regards to the possibility of a positive outcome. I realise that giving that sort of news has to be done with a sad face and grave voice but they wouldn’t give me any info. I asked the surgeon how long I could live and after a long pause and looking at me with great sadness he said “I don’t know” very frightening. Anyway I hope when I see the medical oncologist he will have good news and be more upbeat about the possibilities, in the meantime I will keep reading all the helpful advice on this thread and hopefully work our how to glean other useful info from the site.   Thank you again ... View more

Hi Pea I was diagnosed with BC for the second time 6 weeks ago and was due to have mastectomy and reconstruction Tuesday if this week but CT scan in prep for this showed secondary bone mets in my pelvis. I have now had further CT of chest, abdomen and pelvis and awaiting appt. with oncologist. I was introduced to the secondary breast cancer nurse who was unable to tell me anything useful apart from the fact that she had patients that she had been seeing for years. The whole appt was very doom and gloom so thank god for this forum.     I was really interested to see you have a group that meet and give advice, I am in Colchester in Essex are you aware if there is anything like that in my area please as not sure how to search on here being a newly. Stephie ... View more