Breast Cancer Now Forum

Hi Purple Tiger Mouse i was diagnosed with TNBC at end Nov/early Dec and started treatment just before Xmas. I just completed my chemo and I am waiting for surgery that will take place in 2 weeks time.  i am being treated in London at Barts Hospital - the person leading the team there is a TN specialist and is called Prof Peter Schmidt.  My treatment is chemo before surgery : 4XAC (every 2 weeks) + 12 weekly paclitaxel and carboplatin. Then comes surgery and radiotherapy. They also offer an additional 6 months oral chemo if you have residual cancer cells when they do surgery and have some lymph nodes involved. some centres do surgery before chemo and offer different chemo I.e (F)EC and Doxetaxel.  Barts was also offering immunotherapy as part of a trial for early stage TN - not sure if it is still open due to Covid but you may want to look into it as this immunotherapy has shown some positive results for patients with metastasis and they are trying to see if immunotherapy helps prevent recurrence for patients with early stage TN (in that case treatment is 12 weekly paclitaxel with immunotherapy followed by 4 AC).  Please feel free to ask me any questions.  I have used someone like me option on this site and have been linked to someone who had a similar diagnosis as me - we talk on the phone and she has been very helpful answering some of my questions / worries etc. I would recommend  I have also joined a very useful FB page called Triple Negative Breast Cancer UK and Ireland (TNBC) support. It’s very supportive and full of info. Also I have found this website very useful especially the relevant chemo thread - it’s nice to share your experiences going through chemo with other women.  wishing you all the best Aurore ... View more

Hello all I do not write here very often but check in every day on how everyone is doing. Like everyone else it is very scary time.  i am in London and currently neonadjuvant for triple negative. I am due paclitaxel/carbo 5 tomorrow (planned for 12). Had a call from oncologist who recommends for treatment to continue as she feels having the surgery now would not give me the best chance long term. She said that they will continue to deliver treatment (but I am sure they cannot guarantee this). But continuing treatment has also its own risk. It was hard to hear how cancer patients have been classified in categories to decide who will receive treatment.  i know we are all being faced with difficult decisions who are being made for us. What have you been advised so far?  MC22 - I hope your husband is feeling better.  i am sending love and strength to you all aurore ps: getting ready to go to unit for my bloods and pretty petrified  ... View more

Oh yes I was awake as usual ! Can’t hear the birds but I am in London!  ... View more

Hello i am weekly Pacli too and have antihistamine and steroids before the infusion as well as something else to protect my stomach. I have also Carboplatin and I am in the unit for about 4 hours and I get very sleepy during treatment. I have also heartburn. MsS1968, we seem very similar. Oh I have steroids for 2 days afterwards.  i am getting ready for my number 3 today. have a good day Aurore  ... View more

Hello,  good luck to those having treatment today. I’ll have my 3rd Paclitaxel/Carbo tomorrow and need to go to the hospital for my bloods today - as I live in London and usually rely on public transports to move around I am a bit nervous to do any unnecessary travel so will most likely take a cab to reduce risk. Still trying to increase my food intake as weight loss has been bad and worried this could impact treatment.  Getting a bit fatigued now and thinking I need to go through 12 Paclitaxel/carbo seems daunting. So far side effects have been loss of appetite, some bone pain, tinnitus (from carbo) and some heartburn but still early days.  hope you all have a good day take care aurore   ... View more

Hi,  i am being treated at st bartholomews hospital (Barts) which is a cancer centre. This is where I go for consultations and treatment and get my bloods done too. I have never had great veins tbh and it has been difficult in the past to put catheter in. I had my first two treatments without picc line as they could not find me an appointment quick due to Xmas etc and I was anxious about having a catheter but I had no choice. I was anxious about the picc due to the associated risks of infection but it has made life easier. You will be fine  aurore ... View more

Hi Mc22 i had a PICC line fitted at the beginning of January. I was not told to do any prep beforehand and did not have the choice of 1 or 2 tubes (I have one). all was done in a very sterile environment. I attend a big cancer centre in London and get my bloods done there at the same time as getting my dressing done.  a few weeks back I had to attend a&e at my local hospital and was lucky there was someone who had been trained on using the picc line but I had to check as not all of them are and there are very strict protocols in order to avoid infection.  i think you can get a prescription for the waterproof cover but I ordered mine online - google it and it will come up easily.  all the best aurore ... View more

Hi Adele i am surprised they did not do neo-adjuvant to try to reduce your tumour first in your situation mainly based on the size to try to reduce it - I guess it must be down to decisions made in different trusts and yes my view is that they should offer scans to everyone.  i am neo-adjuvant and doing my second paclitaxel/carbo today, it seems I had some reduction after AC (will get full report Monday) but I was disappointed as I would have liked more shrinkage (hopefully the second chemo will finish it off). I am being treated at Barts in London and they have said at the beginning that if there was any residual cells after surgery they would offer oral chemo. I am also TN.  This is quite a rollercoaster.  I was a bit nervous changing chemo last week especially as I had been told I could have a reaction to it during the first two - glad it did not happen and hopefully today will be the same.  I hope you all have a smooth day today Aurore ... View more

Hello all,  just popping to say hi. I have struggled with oral thrush and heartburn and have also lost a lot of weight and I am getting a bit worried about it (and so are they) as I am now 50 kilos (I am not tall). I think anxiety and treatment are the causes of it but I need to keep a lid on it so trying to eat little but more often I.e nuts, avocado with olive oil, smoothie rich in protein (homemade). good advice for bowels - I eat a lot of fibres and had very little disagreement except when taking steroids.  i have started Paclitaxel and Carbo last week on a weekly basis - so far it has been okay, quite tired tho. Any of you on this?  i hope you all have a good rest of the day  aurore  ... View more

Hi Rosie, i have read your post and your previous ones and wanted to say hi in these difficult times when you are waiting for results. Wednesday hopefully will give you some answers and you’ll be closer to starting treatment but you may need additional tests such as scans. If they have said U5 there is a high chance it will be cancer but that is not a definite (fingers crossed that it’s not cancer). Try to bring someone with you or ask if you can record the conversation as you might zone out. Also if you can prepare some questions in advance.  It is a very scary time but like my colleague said (and she went through it) you cannot control this so try not to think about it until then - something I have not been able to apply.  i am doing mindfulness or guided meditation to give my mind some respite if only for short periods.  Rosie I am thinking of you and wishing you all the best and hoping for the best for you. If cancer is confirmed hopefully your treatment will start very soon.  do not hesitate to push if you think things are going to slow - you are your best advocate!!!  take care Rosie  A.  ... View more

Hi all   i have not posted for a long time but check daily to get update on how you are doing. I am due to start my first of 12 weekly Paclitaxel/carbo in a few hours and I am a bit anxious and hope won’t have any reaction - Mrs1968, glad to see they have now identified what you are reacting to so will be easier going forwarD.  i also had some a&e visits and was even admitted as neutropenic but discharged myself as they would not put me in a side room and was worried to pick up an infection when I was quite vulnerable.  Ok need to get ready to get poisoned again wishing you all a good day  aurore  ... View more

Hi Lady34   i have the book and started reading it - it is more about repurposed drugs and supplements you can take to block the various pathways to cancer (to stop/starve it). You need to work out a metro map to your specific cancer. You can’t really take supplements when on chemo.  Aurore  ... View more

Barts Hospital have a curent trial with immunotherapy for secondary TN, first line of treatment. They are having a good response I think. Might be worth looking into it. Prof Schmidt is leading it.  aurore ... View more

Jencat i have read your post when I was first diagnosed as TN and think you may have had messaged me at some point. I am sorry to hear about your recent news but would echo what Shi said about considering trials. Prof Schmidt at Barts is always running some and he is a specialist in that field and i’ve heard some people have had good responses. Worth exploring....  wishing you all the best and fingers crossed for you and that you have a good and productive consultation today Hugs Aurore ... View more

Hi Madcatlady   i would give gaviscon a try first before the pill. I am also hesitant to take more pills and Gaviscon seems to have done the trick. Hope it will do the same to you. have a good day and take it easy. aurore ... View more

Hello Lizzie   just wanted to send you a response as I know there are not always many responses to us being diagnosed with triple negative. It’s positive your treatment is starting next week, that will give you a routine - what is your plan?  I have just completed my 4th AC and will move onto a second chemo in 2 weeks time. It’s a lot to take in in the first few weeks and emotions can be up and down and give yourself time.  i have done a lot of googling - please avoid !!!!  This forum is very supportive and kind.  I wish you all the best  aurore ... View more

Hello MrsS 1968   oh that’s so weird and unsettling ... could you check with your breast care nurse.  i am due to go on Paclitaxel too and chemo unit told me I will only have 6 rounds - which I know is not correct as I will have 12 ( 😱 ) So sometimes we need to be on top of it - they are very busy...  have a good day all - last AC for me later on today  aurore ... View more

Hi,   I am so sorry you are in this situation, it is still very recent and I guess you are all trying to go through the shock of it all and what it means and trying to process. Being 14 is a tricky age and I think it is  positive he has been able to verbalise his fears and anger at the situation even if it is hard to hear. I would advise you speak to his school so they can offer support and maybe consider some emotional support for him if he wants to access this. It sounds you have been able to find some good words but give yourself time .... it is a lot to process I cannot comment on treatment but wishing you all the best and for good results A. ... View more

Hi Rizzer   there must be something in the air because I have also felt this way in the last couple of days so quite tough to manage!  I can also empathise with you and hope we get more positive soon !  Big hugs  aurore  ... View more

Thank you for posting this - as I understand NICE did not approve for the UK which is disappointing!  Aurore  ... View more