I'm about to go off to see another oncologist this afternoon just to get some more info before starting treatment at the end of the month. I know I should be asking about type of chemo, survival rates, side effects etc etc but all I really want to know is about hair dye, microblading and headscarves! (I'm trying to be jolly even though I'm terrified. I'm hoping humour might help me get through this!)
Hope you're all doing well today. I've heard there is a bit of heat wave on its way so if nothing else the sun shining should cheer us all up. x
Thanks for the tip, Anniej. I might even give the colour a miss and go straight for the chop. I'll keep you posted!
Ali, love your positivity. Way to go! 😄. Make sure you leave plenty of time between hair colouring and chemo. I was told that the two lots of chemicals don't mix well. 😡. Good luck on your journey. X
Thanks for all the positive posts. Tomorrow not so daunting now. Great to have this forum for support.
Thank you for your replies and reassurances. It really does help with the decision making process. To know that this treatment is doable and to do it alongside others is a huge support.
This morning I told my employer I'm going to have the treatment starting on 26 June and that I'll be off work until at least the new year. I'll have radiotherapy after chemo so this seems reasonable. I've already been off since mid March so I'm probably going to forget what work is like by the time I've finished!
I've also told my hairdresser that I'll need a super short cut and colour before the end of June. She's going to come to the house to save my tears in the salon. Ive already got short hair but the thought of losing it still terrifies me. I shall invest in colourful headscarves and wear them with pride.
This all sounds like I've made the decision, doesn't it? So I guess I'll be joining you on this crazy journey after all. Thanks for welcoming me to the group and fingers crossed for you all that today is a good day xx
Hi Alice, was just reading through your thread, and the dilemma you face. Good news that your tumour has been found early and you are now under the treatment umbrella. Whilst I did not have the option like yourself to have chemotherapy, like you I was incredibly nervous of the Unknown. Mine was a complete whirlwind I was diognosed on the Friday and started chemo the following Thursday. I can't advise you on what to do, all I can say is chemo is totally doable, and nowhere near as bad as I thought. Yes you will have bad days, but you know what you have more good days, where you just carry on as normal. Only you can make that call, it's your body at the end of the day, but it's a very short period of time for chemo and does go very quickly.
Morning all, I was just reading through some of the threads on here, as you do, I finished chemo in Jan, and I noticed a couple of you asking about hair. If you are on the FEC-T regime the FEC part is very severe on the hair follicle. I started to cold cap but was told that it's unlikely it will save my hair so I stopped. I get its different for everyone. Anyway my hair started to come out after day 11, and at that point I decided to get it shaved to a number 2. I am really glad I did if I am honest, it was just one less thing to think about. I had really long thick hair. For all you amazing ladies starting on this journey, I found it really liberating to have it shaved, and there are some great wigs on eBay I found, I did buy several. It was great not having to worry about all that shaving legs, arm pits, and the good old lady garden. All I kept thinking is if my hair is falling out the Chemo is really doing the business. Anyway, just over 4 months on from finishing (I am on rads now), I have the best hair ever. Thick and soft and a good couple of inches. It really does grow back, and can be better than ever.
I'm joining this thread very tentatively as although I have my first treatment appointment booked for the end of June I'm not entirely sure I'll have the bottle to attend it.
I had WLE and SNB on April 24th. I have grade 2 invasive BC and a lump of 1.5 cm. It was detected early and completely by chance (I had some minimal pain which I thought was due to an ill fitting bra) and the diagnosis came as a massive shock. I'm 46 and have a 12 year old daughter. I got married last August and did not expect to spend my first year of married life like this!
My tumour got sent off to the US for oncotype testing and it came back with a score of 20 which puts me in the undecided category (story of my life!). This means it's a bit of a grey area whether chemo is of benefit and I have to make a decision on the treatment plan based on a set of statistics. In my case this means if I do nothing I have an 85% chance of survival in 10 years. If I have chemo, this improves by a further 8%. A lot of my friends (including my husband) don't think I should have it as the percentage improvement is relatively small. Others think it is a no brainer of a decision and I should do everything I can to hit this thing while I can. At the moment this is the camp I'm in but I don't mind admitting that I'm terrified of what this treatment is going to do to me and my family.
So, the appointment is booked and I'm googling manuka honey and headscarves like crazy. All of you are further down the line than me and have already experienced this period of fear and anxiety as we await treatment. I'm guessing no one enters this phase lightly or without trepidation but any advice or tips for keeping it under control would be most welcome. I think I'm building it up in my mind to be worse than (I hope) it is.
Sorry for the the essay but wanted to give you my story in one go.
Having read your posts on here I know some of you are quite young with small children and I totally admire your ability to manage this journey whilst looking after your babies. Hopefully we will be able to support each other on here week by week (unless I buy myself a one way ticket to Rio before the date of my first appointment!).
Hope all went well yesterday, Abulafia. For those of us starting this week, let's share our experiences. Good luck all.
Hi ladies. I've been lurking around waiting for a June thread.
I had mastectomy in March and finally getting started with chemo (FEC-T) on Thursday. Part of me can't wait but partly dreading it more than the surgery.
Good luck to everyone, ' The end justifies the means' as they say 😉
Nikki, thanks so much for all the advise. Will take it all on board. I am up early this morning. First chemo session today. Nervous but am hoping the drugs will lessen pain in right breast.
Micro papilliary seems so rare but outlook nowadays regarded as same for invasive ductal. My picc line came in handy for the mri biopsy on left breast and the staff were amazing. Just can't praise them enough.
Oh and the picc line cover and some eyebrow pencil things came yesterday and the picc cover is so comfortable. Pink! With a mesh for the picc area.
I am sure there are cheaper elsewhere, so probably best to google around.
Hi ladies, just wanted to wish you all the best for your chemo starting this month. I'm on the May 2017 starters and have just completed my 3rd FEC. We keep each other going really well and so will you guys. I'm coping really well. Just keep healthy and drink plenty of water - add cranberry juice on day 1-3 to help flush the bladder and avoid irritation. Look after your skin and try and avoid any products with alcohol. There are many products to help with sore mouth: gengigel, biotene, manuka 29+ honey, Gelclair. Look after your bowels well ladies and get in some senokot and sudocreme or anusol and maybe fibogel. Try and have regular walks if you can.
You can get through this. Stay strong and positive ladies but don't be afraid to have an off day now and then. Be kind to yourselves.
Hi Ladies - thanks for your responses. Your feedback is so appreciated.
I have decided to drop the cold cap. It was far too taxing and I don't think my body can take it.
Abulafia - I may also take an anti- anxiety pill, got some too. As you say, let's give both body and mind a bit of a break.
Hugs go to all and take care through your journeys!
Welcome. Hope Friday goes better. Not sure about trying cold cap but had very short hair cut today.
i am another June starter. Great to meet you all on this forum!
Attempted my first chemo today but had a lot of pain in a recently fitted port so they had to stop and we are trying again on Friday. I tried the cold cap and was perfectly fine for 2 hours. Then suddenly had a very bad reaction - nausea, pain, dizziness, blurred vision and also feeling confused.....I don't think I will go back.
has anyone else had similar experiences?
Thanks. Good to hear what to expect. Now I feel ready for Tuesday.
Meeting the chemo team this afternoon. Triple negative, so chemo, surgery and maybe RT. Long road ahead. A bit apprehensive.
I start FEC 3 lots, this coming Saturday, then 3 lots of T. 18 weeks in all.
They need to do an mri guided biopsy on left breast, day before, and I think I am having PICC line installed tomorrow.
Obviously stressful time, but keep seeing my son graduating in 3 years time in my head, and picture myself healthy even if flat chested.
I am 56, but all this is still so new. I am starting with chemo first, then surgery, then radiotherapy, so I guess they are giving it all they have got.
I am attending Churchill in Oxford so might actually pass someone here without knowing!
Anyway. Was very comforting to read through this,thread and appreciate not feeling alone. xx
Will have a short cut this week before chemo. Still undecided about ice cap. A bit apprehensive now but eager to start treatment.
Hi Skells just thought I would mention an app that I use to remind me to take my pills. I've had so many drugs, all starting and finishing on different days and needing different dosing times, with or without food etc. Chemo brain doesn't help! The app is free and it's called Medisafe. If you're the kind of person who has their phone on them most of the time it's brilliant. Although it's no help if you've gone out for the day and forgotten to take the pills with you! Hope you're feeling better.
Hi. I am due to start my chemotherapy on 13th. Fec-T regime. I am going for my first meeting with the chemo team on Wednesday so will hopefully get a better idea of what to expect. Picc line only due before second cycle. Will keep up with the advice and feedback on here and try to remain positive. Having hair cut short this week in preparation.
Sorry to hear about other starters with babies. I am older so feel for the extra burden you are carrying. Love to all.