Hi there - can I ask what the new treatment in Scotland is please? I have grade 3 IBC ER/PR+8 HER neg - had a mastectomy and 4 lymph nodes removed as one was positive. Waiting for pathology results now and as we know the waiting is scary! Sxx
Sure, itās Ribociclib. It was previously used to treat stage 4 cancers only in Scotland but research has shown that itās very very good as a preventative treatment in certain cases too.
Itās already been used in Englandshire for a while but only got approved for general use in January, so I feel very lucky (as itās upto Ā£3k a packet).
Iām stage 1 - as itās slow growing - but I ignored the lump for 3 years (biggest regret of my life), & it went onto become invasive ductal carcinoma in 5 nodes and burst out of 1 of them, so itās in my lymph system going god knows where.
So Ribociclib is a targeted biological therapy used to stop cdk proteins from multiplying cancer cells & growing I to something nasty.
They wanted me to go onto Amebociclib (a similar drug) thatās been used for years, but side effects are a little harsher (like constant diarrhea - which I have the fear ofā¦..sailed through the side effects of surgery, chemo, radioā¦but constant poops terrifying me). So I argued a case to 3 different people!
Ribo has good results, but weakens your immune system & can produce anaemia, so apparently the fatigue is real with this one.
Iāve lost my normal job because of it (in a school - advised by oncology not to do it until blood work dictates itās ok which could take 6 months to a year). Iām devastated about that tbh but my work had to plan around me, but Iām still employed by the same company just mostly home based instead. Which is socially isolating.
But, Iāll make sure I see people another way instead to stop that lack of connectedness which is oh so very important in recovery.
If Ribo works, Iāll take what comes & work around it. However, I did negotiate not starting until after Xmas - as going to London with my family for a few days & donāt want to be like a total zombie & having to sleep all the time
Feels like a small win 
so 5th Jan, the targeted therapy starts for me. Letās see how it goes.
Keep posting @sharync, chatting on & reading others experiences here helps. Good luck x
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Thank you for your reply. Iāve read about Ribociclib being used now in this way so it was on the list to ask my consultant. Youāll have to let me know how you get on with the side effects as Iāll be a bit off starting targeted. Iām waiting for results regarding the need for chemo but do know Iām having radiotherapy on my lymph nodes as my consultant did a TAD of the lymph nodes which is a new procedure too only being rolled out now. And she did say targeted therapy most likely too. Hoping to find out this week. So I had mastectomy and TAD on 13th so early days for me. Had to stop HRT so been having hot flashes again 
but thatās the least of my worries. Iām glad you have been strong and they agreed to give you the Ribociclib and yes constant diarrhoea sounds horrendous. Sorry to hear about your job and all that comes with not doing the a vocation you loved. Cancer is responsible for so much hardship that itās hard to stay positive but just have to try to. As Iām on the start of my journey I have yet to face numerous hurdles 
thank you for your time Sxx
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Hi again
Iām in Scotland too you see Sxx
TAD is a new term for me too.
Whatās that?
My top tip is to keep the positivity goingā¦ā¦find stuff to do to take your mind off it. But have a good cathartic cry now & then to take the stress layers off too.
I go for walks with podcasts or audible books, do painting by numbers, or jigsaws. At the moment I am painting Xmas baubles for family kids. I sometimes do a wee dance in the mornings too that has a bit of rebounding in it (good for lymphatic system) - god, I wobble like nothing on earth but just giggle that itās only really on one side 
and get a little dopamine hit afterwards.
Youāll find your thing, itās these things that help you through x
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Hi
you sound so positive! Thatās great. I am too but only had step one of the process!
TAD is Targeted Axillary Dissection where they take the positive node and a few around it instead of a total clearance. This procedure then requires radiotherapy to that area afterwards. It is meant to give patients a better recovery outcome with less chance of lymphoedema and pain. But if the pathology comes back after surgery that the other 3 they removed are positive I will still need total clearance surgery. Hoping it has worked for me.
All your hobbies and dancing sound good. Haha yep one boob to jiggle about here too. I go for walks a lot and read - not sure of my future treatments so will find other things Iām sure as time goes on. I made Lego orchids last Xmas and found Lego making fun. I have one grandson so will be looking after him a day a week when up to it - not sure what will happen with my work yetā¦. Will have to see how treatment goes.
Sxx
Hi I had an IDC removed in June and 3 sentinel nodes, 2 of which were cancerous. I was immediately referred for a CT scan. Followed by a bone scan. I then had my lymph nodes removed only 1 was cancerous. It was early slow growing cancer and my oncotype test was 13 so I didnāt need chemo but I have had radiotherapy. My cancer was also hormone positive. I would be pushing for a CT scan. Wishing you all the best.
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Hi, l hope this helps you but I was diagnosed with ILBC, no nodes on scans. Had a mammoplasty 2cm and 1cm cancer, and sentinel node was positive. Node clearance and all nodes had cancer. Everyone was shocked as they kept saying it was very early. Had scan and no active disease seen. I am currently half way through 6 months of chemo before 3 weeks radiotherapy.
Completely understand how your mind is racing. Could you push for a scan to rest your mind? I would also look at Penny Brohn UK who offer online support. My advice would be to take one day at a timeā¦. easier said than done! X
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