Hello to all of you lovely people and let me introduce myself...

  • 5 replies
  • 26 subscribers

it is really a pleasure to find those online communities, I have never participated in any for any subject I had so far in my life, so please forgive me if I do not know all the rules and habits.

My name is Eva, I am 56 years old, I am from Germany (or actually born Hungarian) and I moved to London in 2012 and absolutely love this city and the UK. I live together with my hubby, his 13 year old son and my doggyi, all of them Hungarian Slight smile and support me a lot after getting diagnosed with TNBC on 6th January in Spire Bushey Hospital. I am having my chemo done in the Elstree Cancer Centre and today I started my 3rd cycle of chemo on Paclitaxel / Carboplatin and using the Paxman Cold Cap. I have not lost any hair yet until last Sunday and now it is a challenge going in front of the mirror every morning and comb my hair to fear more hair coming out. I guess it will be only a matter of time, as the nurses say that after my 4 cycles with paclitaxel, I will have to finish on 4 rounds of EC which will probably kill my hair completely. I really ask myself why am I then using a cool cap (even though I watched a lot of videos where Paxman says that you should not cut your hair shorter or shave it even based on experience by the women in the video). But hair was always very important for me and I have long healthy strawberry blonde/copper hair. Also I have watched the video diary of Victoria Derbyshire and she so speaks my mind in everything and also that her hair loss was more challenging than having to do a double mastectomy. I am currently checking out if I should get a wig (which the nurses say I am no way there yet) and where (any recommendations?) and I am a bit lost with the hair loss, that is why I am seeking for some answers, advice, recommendations here with you being diagnosed with the same breast cancer. Oh I forgot to say that my gene test came back negative (yeyyyy - according to the woman on the phone I was just being unlucky...hmm) and I am stage 2 luckily but will have to loose my left breast for sure but can think about a double mastectomy, other than that so far the chemo has not yet had such an effect on me fortunately despite me having all sorts of autoimmune diseases like Hashimoto tyroid and LADA Diabetes Type 1...well I think that was it...sorry for that long and extensive introduction Slight smile You all take care and I am looking forward interacting with you here in the online forum. X Eva

  • Hi Eve_has_TNBC

    Welcome to the forum and sorry to hear that you have been diagnosed with TNBC. When I lost my hair I didn’t bother with a wig, I bought a couple of turbans which I wore whenever I left the house. While it bothered me at first having no hair I soon got used to it.

    Wishing you the best of luck with the rest of your treatment.

    Best wishes


    Community Champion Badge

  • Hi Eva,

    So sorry to hear about your diagnosis and that your hair loss is causing you stress. I also was diagnosed with TNBC back in January. I had a lumpectomy and lymph node clearance (positive frozen section biopsy on table). Today I had my first chemo session which went well, feeling ok, just a little bit tired. I’m on a similar regime to you. 

    Im from the UK, but live in Hong Kong. I’m 51years old with no family history (still waiting about BRCA) and I also have an auto immune disease:Rheumotoid  arthritis, it doesn’t effect me too much. 

    The insurance system makes things very disjointed and stressful so in a way I was relieved to be starting the chemo, although obviously apprehensive at the same time. They don’t offer cold cap so I’ll definitely be losing my hair. I’ve bought some colourful scarves and turbans and when my hair starts to fall out I’ll get my husband to shave it off. I can’t say exactly how I’ll feel when the time comes but I’m hoping that taking control of it will help with the feeling of disappointment. They also say just cutting it shorter can help but if you’ve got beautiful long copper hair ( my dream wig!) it must be difficult.

    Good luck with everything, keep in touch with how everything is going or any tips!

    Big hugs x

  • Thank you so much Daisy!

  • Hi Eva,

    I too was diagnosed with TNBC back in May 2022. I had 6 rounds of Chemo FEC T regime which I started in the June and I lost my hair. I also lost my eyebrows and eyelashes. I had the option of cold cap but decided against it and just went with it. Like others I wore hats and styled it out. My children used to rub my head for luck. I had a lumpectomy in October followed by a re-excision of medical margins two weeks later as he hadn't quite got as much tissue as he would have liked. So under the knife I went again. That was followed up with 20 sessions of Radiotherapy in February. My surgeon recommended me taking the longer less intensive option as it can be damaging to the skin and he didn't want it to damage the flap that he had put in. It was originally going to be 5 sessions with a booster week of five but that turned into 15 with 5 boosters. The 15 were on the whole breast area and the 5 boosters concentrated on the tumour bed area and surrounding tissue. Thankfully I haven't felt too tired from it but do get quite emotional. My hair started coming back before Christmas. It's completely grey, a mixture of light and dark but I am 44 and I had grey roots under the red hair dye anyway so I wasn't surprised. It has a bit of a kink to it too. I have had short hair in the past and everyone says it suits me so I think I will keep it short. I hope you're treatment goes well and that you can remain positive. I am waiting for my follow up appointment with my Oncologist. It's a telephone appointment on 20th of April so hopefully she can tell me how it's all gone and let me know what's in store going forward. My surgeon said that he would schedule me for regular mammograms and that he doesn't need to see me now until October as that will have been a year since my last MRI. My thoughts are with you. Let's hope we can all get through this together. If you ever need to chat I'm here. Happy for you to email me if you'd prefer or if you're on Instagram I'm @maz_coombes

  • Sorry to hear you are joining the TNBC club. In my experience, hair loss is greater with EC than Paclitaxel. I had EC first, lost my hair before the 2nd treatment despite using a cold cap on the first. Then it started to regrow during Paclitaxel. If you are being treated through the NHS you are entitled to a voucher for a wig up to a certain value. In my hospital you get contacted by the on-site MacMillan centre, who operate the wig service. I didn’t use my wig much as I found it generally hot and uncomfortable to wear (I had chemo through last summer’s heat wave). Headscarves were cooler and more comfortable to wear. I found the loss of eyebrows and eyelashes more distressing than the head hair, as they complete the cancer look. I spent a lot of time in sunglasses.