Breast Cancer Now Forum

That’s brilliant news Kat sounds like your responding well to treatment. I had an appointment last week and they are going to give me 15 sessions of radiotherapy which I will start on 21sr October. Keep me updated how your getting on. Xx ... View more

Hi Daisy and Kat Hope your both well, for the chat if you just google breast cancer now live chat it will bring the page where you need to register, it’s on a Tuesday evening 8.30 - 9.30 there’s normally 6 ladies on it and all all very helpful and knowledgable. Kat the book I’m reading is the Jane Mclellland one I’m also going to get the one Daisy recommended. sorry your neutrophils have been low, mine are normally about 1 or 1.2 so luckily I haven’t had any delays as yet.  The reason oncologist put me forward for mastectomy is I had a lot of skin involvement underneath the breast it was open and sore, so the riboclib cleared it up and she said she didn’t want the skin to breakdown again so thought it was a good opertunityvto operate,  when we got the pathological results back it showed no cancer cells in the breast or the 8 lymph nodes that were removed, she couldn’t believe the responce  the ribociclib.  where are your secondaries and have you had any scan results xx nice talking to people on the same treatment xx ... View more

I will ask tonight on the chat how you register, I can remember how I did it I think it was on the site but not sure where, but I wil find and and let you know. pleased your having improvments, did you go straight to secondary ? And it’s very re assuring that people have been on ribociclib for so long. Take care and speak soon xxx ... View more

Hi Daisy  The chat is 8.30 -9.30 just gives you a chance to speak to others in the same situation.  The mets on my pelvis’s have remained the same so oncologist isnt sure if they are meta or not she said one of the radiographers doesn’t think it looks suspicious, the opposite lymph node they again think it’s cleared with the treatment but will keep a close eye on it, oncologist wanted surgeon to remove the op lymph nodes but he said the risks outway the benefits. where have you got yous again and how are you responding to treatment ? Xx ... View more

Hi Daisy  I’m  doing good thank you, I’ve recently had a right hand side mastectomy. They originally said they could t operate 10 mth later and I had had such a good response to treatment they decided to. So I’m just recovering g from that pleased your tolerating your meds well. i think we have spoke before what med are you on again ? I’m still in my letrozole ribociclib and Zoladex waiting to hear if they are going to do any radiotherapy. im defiantly going to have a look at that cancer active charity. Theres a chat on a Tuesday night through bcn you should register for it there’s normally about 6 ladies on it  Take care xx       ... View more

Hi Daisy Hope your well. I haven’t heard of this but will certainly have a look, I have just finished reading a book called how to starve cancer and found that very informative. In the book they talk about a clinic in London called care oncology clinic and i found it interesting also tops in book about diets alternative therapies etc.  X ... View more

Hi Kat & Daisy Hope your both well. As I said in an earlier post I have tolerated the ribociclib and letrozole very well, my breast cancer started with a sore no lump, it was like a sweat rash under the right breast that openened up and liooed awful, it’s in lymph nodes and also a patch on pelvis which they are now saying isn’t suspicious. Onc says I’ve responded well to treatment as the sore has all healed , she referred me to surgeon who I seen on Thursday and he is going to operate this Wednesday so I’m having a right hand side mastectomy and lymph node removal. So stay positive as last August when I was diagnosed I was advised it was in operable but it just shows if you respond to treatment it opens up other doors. Sending love to both of you xxxx ... View more

Hi Kat, sorry took so long for me to reply I’m currentl on my 10th round of ribociclib and I do tolerate it very well, I did end up in hospital for a week as I picked and infection up in January but antibiotics sorted that out. i was diagnosed in August last year I have it in right breast and lymph nodes in right arm and also in left arm, they did say I also have a patch on pelvis but are now saying they don’t think that’s suspicious. when we’re you diagnosed? And do you mind me asking where you have it. nice to talk to people in same position  Take care xx ... View more

Hi Kat im on ribociclib letrozole and zoladex. i normally get my blood done on the Friday then pick my tablets up on the monday, my neutrophils can sometimes be under one, but then when I get them repeated they tend to go to anywhere between 1 and 1.4 so I have never had mine delayed. How low have yous been ? My onc allways say 1 or above is fine. I know they say there is nothing  can eat but the last time I ate raw spinach in salads lots of brocolli & Kale and had lots of berries and they were the highest they have been. i wish you well with your scan also xx   ... View more

Hi Daisy Thats great news on your scan results, I picked up my 10th round of ribociclib and letrozole yesterday, still having monthly Zoladex and all going well. i seen oncologist who had referred  me to surgeon to see about operating to remove the right breast as I had skin involvement and my meds are working well but she said she if they did stop working she doesn’t want to be in a position where it gets sore again so thinks now would be a good time to operate. But it will be down to the surgeon to see if he is willing to as it’s in a difficult place, so just waiting for appointment xx   ... View more

Hi Daisy Sorry for the late reply, Original plan for me was to have chemo then mastectomy but when they found the secondaries they said op was out of the question, My primary tumour is right in the bra line and it has ulcerated to the skin, but the ribociclib has cleared the sore up but onc has said whilst it’s healed she wants to consider surgery as doesn’t want it affecting the skin again, she said it isn’t a cure but would hopefully stop a re occurance there, I will keep you updated on what they say. Is there a way on here to message privately xx ... View more

Hi Daisy  Im about to start my 9th round of this combination on Monday and still fine on it justchad 2nd scan results and all stable and oncologist has now said she wants to speak to surgeons to see if they will be willing to operate, The only side effect I get is hot flushes and my neutrophils are normAlly on just above 1 when I get my bloods done. How are you finding it ?  Nice to speak to people in same treatment xx ... View more

Hi Daisy, i was diagnosed In August 2020, I had a sore under my breast and after biopsies scans etc was diagnosed with ER positive   , I have my secondaries in lymph nodes under both arms and a patch on pelvis. Im in Zoladex, ribociclib and letrozole and tolerate it all very well, I get hot flushes and no other side effects,  I’m currently feeling anxious as im due some scan results back any day.  This forum is really good if you have any questions. Take care xx ... View more

Hi Seren23 its perfectly normal to feel upset and let down, I was diagnosed in August straight to secondary, it was such a shock as I had no aches/pains not even a lump, I had a sore under breast which didn’t heal, after pet scan I also have it in lymph nodes, distant lymph nodes and patch on pelvis. Atfirst I thought I would never come to terms with it and from waking on a morning till going to bed it was constantly on my mind. Im on ribociclib letrozole and zoladex and tolerate it very well, it has definitely got easier as the days and weeks have passed and some days I don’t even think about the cancer, I never thought I would say that, but I took advise from this forum and take one day at a time, if I’m having a bad day that’s ok, I’m allowed but can honestly say I have more good days. My most recent scan was stable so treatment working,  Stay strong and positive and there’s allways someone on forum to give advise 💕 xx ... View more

Hi Jan Thanks for the reply, I know I need to learn to put it behind,  i am feeling anxious at the moment and I’ve just been saying to hubby anything slight i.e runny nose etc I will Pannick, so I need to learn not to,  Bloods are getting redone 2moro so hoping they have increased from 0.8 How are you doing on your current treatment, xx   ... View more

Hi Timmycat Thats great news about your scan results, was it CT scan you had, I get my results on Monday,  feeling a little anxious at the moment xx So pleased you got good news XX  ... View more

Hi Secondarysister2 i was diagnosed straight to secondary, mine is also ER positive and her2 negative, My primary tumour is in the right breast and I have a patch on pelvis and also in lymph nodes in both axilla. im just hoping and praying that the ribociclib and letrozole are working. i will let you know, my scan results are on the 25th so not to much longer to wait.  Wishing your Mum all the best. X ... View more

Hi Secondarysister2 Do you mind me asking when your mum was diagnosed and where she has secondaries, has she had any scans yet? She is lucky to have someone like you, who asks all the questions and you sound a really positive person. i had my first scan last week and get results on 25th. Trying to stay positive but finding it hard at the moment. Sending love to your mum x     ... View more

I was diagnosed straight to secondaries in August was such a shock, I dint have a physical lump it was a sore under breast, so main tumour is on bra line and I have involvement in lymph nodes in both axilla and a low grade patch on pelvis. I feel fine in myself just mentally hard to get head around it, Thank you for your kind words. Xx ... View more