I might have enough hair for a pullet in six months time just when they’re going out of fashion.
5 Likes
Hi x I have been trying to create a post but failing miserably and you seem very informative so I hope you don’t mind me messaging you xx I am wondering if you have any audio books recommendations? I am wanting something to address anxiety and to promote positive thoughts during chemo? And ideas no worries if not I will keep searching xx
2 Likes
Hi @debly123 it depends what appeals as we’re all different but there’s quite a lot of stuff on using mindfulness alongside cancer if you google it. There are downloads to listen to. Good luck.
4 Likes
If you are a member of your local library they will have a huge range of books and audio books to choose from that you can download onto you iPad or mobile. I just looked at my library and they have a Mindfulness section so yours will as well. The system is called BorrowBox and it’s free. I hope you find something you like. You can borrow 10 at a time.
4 Likes
BorrowBox is great. I’ve just downloaded my first book.
4 Likes
It’s brilliant and not just books and audiobooks. I borrow glossy magazines that I’m too mean to buy and usually only get to read in the hairdressers. They even do daily newspapers.
3 Likes
Hey @jessybessy I had my SMX on the 8th Feb. Did they tell you about your lymph nodes straight away. I haven’t seen my surgeon since so didn’t think I would find out about my lymph nodes until my follow up appointment.
I think I only had one removed for testing. How did you know yours were clear so quickly?
3 Likes
Yeah they told me on the same day about the nodes, but not the rest of the boob. They sent them upstairs for testing during the operation which they were able to do pretty quickly I think x
4 Likes
@jessybessy thats good you were able to get those so quickly. I had heard some hospitals had that facility.
4 Likes
Yeah I’m based in Qatar you see (but am British) so it’s a little different
1 Like
Its quite common for sentinel node testing to be carried out while patient on table. (OSNA). Its a shame all hospitals dont have that facility. Some hospitals still using radioactive blue dye, whilst some including my breast unit now use mag seed and mag trace to localise tumour and node, much easier, especially getting the sentinel node localised previously meant a trip to another hospital on the day of procedure. It still amazes me the variations around the country. My unit was not the largest in the area but was excellent.
3 Likes
Hi, new to the board having been following everyone’s progress. I have completed my chemo, 4 lots of EC and 4 lots of Docetaxel and Phesgo. I have moved to private treatment to have my surgery having not had good experiences at the start of my journey with the hospital I was being sent to for surgery.
Met my surgeon who did ultrasound and said response to chemo appeared good and previously rogue lymph node now looks normal but wanted to get another MRI as the MDT thought they could see something in other breast previous hospital had missed. I now have to have an MRI guided biopsy as he cannot see the suspicious area with ultrasound. The MRI also showed less response to chemo than he thought from ultrasound and now more chemo after surgery is looking likely depending on what remains in the tissues at mastectomy. Feeling a bit blindsided. Has anyone else had limited response shrinkage wise? Surgeon has said it is possible some is scarring but feel like I’m clutching at straws holding on to that
1 Like
Hello and welcome @woody2. I also moved to private after having bad experiences to begin with so I sympathise and I hope that you are now at the start of a better experience yourself. We have a fair few ladies who we lovingly refer to as our Kadcyla girls on this thread. They were all told that they had some residual cancer that would need Kadcyla after chemo, surgery and/or radiotherapy and many will empathise with your feeling of being blindsided. We don’t like to think it’s a possibility that there will be any cancer left. However, if you have time and do a search for Kadcyla on this thread, you will come across many conversations about it and know that you are not alone in this. It means the treatment path has to change a little but it doesn’t mean the outcome won’t be the same as everyone else. You will still get there but possibly via a more twisty and turny pathway. Travel with us. We are all somewhere on that journey.
@kartoffel That did make me smile hearing that there is a name for this strange hairstyle I am currently sporting - the pullet! 
If only I looked a fraction as good as the women in that link you have sent. I went and bought some vivid blue hair dye this afternoon as I have to do something with it.
@jessybessy Great to hear you are healing well and that your lymph nodes and nipple are clear. I pray the pathology results come quickly and that the good news continues.
@magl I was hoping for hair that colour so that I could dye it ice blue. It’s come back so dark I am having to do dark blue but may still bleach it all white so I can do any colour of the rainbow.
@debly123 I used the Calm app and The Tapping Solution (both of who offer free ones so you don’t have to subscribe and pay if you are happy to just access some) and I am a big fan of Eckhart Tolle. If you haven’t listened to any of his stuff then I recommend the Essential Teachings with Oprah Winfrey that you can find on Spotify. He has totally turned around the way that I think. I got through the very worst times with the help of Eckhart Tolle. He had cancer himself not so long ago so had to put everything into practise that he preaches. Good luck. I think try them all and see what works for you.
So…guess who lives 1 minute away from the large sinkhole that has opened up in Godstone High Street? Yes, we have arrived home from The Chilterns to no water or heating. I am typing this in a coat, scarf and hat! Tomorrow I will not be able to shower and getting out of bed will be reminiscent of the 1970s when you could see your breath inside and used to have to get dressed underneath the covers!! It’s so grim that I have had to go and get some gel nails done in ice blue to go with the theme that seems to have taken hold. A girl’s gotta cheer herself up, right? I would wop the blue hair dye on if we had any bloody water! Don’t even talk to me about flushing the toilet. 
Salbert McShivers
xx
10 Likes
@salbert i just love your responses I really look forward to them, I can’t even remember why I speak to and you respond to each and everyone one of us in such perfect detail. I hope you get sorted with the sink hole. 
2 Likes
@salbert will be looking up Eckhart Locke. Thanks so much for inspiration. Hope sink hole issues soon resolved.
2 Likes
Uuurgggg so apparently my pathology report came out late last night, but because it came out late they didn’t discuss it in the board meeting (which is on Tuesdays). So I now have to wait until next Wednesday for the results 
So frustrating 
2 Likes
Hi, I’m sorry to hear about your experience and response. During my halfway scan (ultrasound and mammo) after EC I was told my tumour had shrunk by about half, and then with the last scan before surgery after a couple Docetaxels that it had only shrunk a tiny bit more but they weren’t sure if it was scarring. After surgery I was told that it was unfortunately larger than it had appeared on ultrasound/mammo, as I hadn’t had a second MRI to show it better, so I ended up still having a fair bit left (went from 21mm to 17mm in the end). I think it shrunk more width wise from what they said so lost a bit more mass than it sounds, but still not the best response!
I actually looked into it properly myself through Katherine trial data (the trial for Kadcyla) as I couldn’t get a straight answer about if this was something that does happen fairly regularly …. I feel they always mentioned me getting a complete response/were hoping for scarring almost to the point of that’s what happens and I felt like the odd one out when I had that much tumour left. It was maybe the team trying to be overly positive, and tbh I’d rather be realistic to mentally prepare myself so would rather have known that I may have needed more chemo as another option rather than being blindsided with it too! The stats I found say that in HR-/Her2+ patients, 69% get a PCR and in HR+/Her2+ (I’m triple positive so this includes me) it’s 38%. Sorry for this long message…. I just thought I’d let you know the info I found as I went to a bad place thinking I was the odd one out and had responded terribly but with those stats I felt I could accept it more and stopped freaking out as I wasn’t some sort of really unlucky anomaly. I even wrote down notes to remind myself if I got bogged down with the thoughts again myself and that’s why I still know the numbers.
I’m now 4 Kadcyla into 14 and it’s not as bad as the last chemo for me so far, and I’ve been living a far more normal life. It reduces the risk of it coming back by a whopping 50% so it really is an amazing targeted chemo that they are able to give us (if you do need it) to bring that risk back down again 
. I hope your surgery goes well and it is scarring there rather than live cells though! If not, as salbert said there are a few of us Kadcyla folks on here to speak to
4 Likes
@woody2 your experience sounds similar to mine but no one mentioned the possibility of further chemo so when it came to seeing my surgeon/oncologist post-surgery, I was completely blindsided by the recommendation to switch from Phesgo to Kadcyla and that my finish line would go from being a couple of months out, to nearly 10 months + reconstruction post-Kadcyla. I’ve talked a lot about it on various posts, but I think I was more gutted by that conversation than I was by my initial diagnosis. That said, I’m halfway through my Kadcyla course and my experience has been fairly similar to what @belle1 posted. It’s not great, but it’s doable. I’ve even got a trip to the US booked on Saturday which my oncologist was happy for me to book. I was less thrilled since it’s a work trip to Chicago in the middle of February, but hey at least I’ll get peanut butter M&Ms out of the trip. In general, its back to life as normal for me whilst I have treatment with just the need to spend a few hours at my treatment centre for blood tests/infusions every 3 weeks.
@salbert Yeah, I definitely don’t make it look as good as the model. I’m debating whether or not I should go get a haircut before my trip on Saturday but I was completely traumatised by my last experience so I’m not sure I have the mental energy for it… 
That sinkhole situation near you sounds terrifying! I knew you were local but I didn’t realise you were that close, hopefully they get everything sorted soon and you don’t turn into a human popsicle.
2 Likes
Hi there
I have am on the January chemo starters thread and I have been dipping in and out of lots of posts. I was diagnosed in November with stage 2 triple positive breast cancer 2.5cm and was put on EC for what should of been 3 cycles. I had a baseline MRI and a further MRi after 2 cycles which showed a limited response to the EC, my nasty only shrank by 2mm, I like yourself panicked and went into dark places. We met the oncologist who didn’t seem concerned at all and advise it’s very common that pathways need tweaking and he said to think of it as an onion and a layer has been taken off, anyhow long story short (very long) he has put me on paxy (I can’t spell it) for 12 weeks with phesgo injections, then surgery then not sure of the next plan prob radio and tablets. I hope that has made you feel better xx take care all
3 Likes