I must admit I felt a lot better once I had spoken to the chemo team I’m still very anxious but I feel once the 1st 1 over with I no what I’m facing it’s the fear of unknown I guess x I think surgery was my fear more than anything wish that went all well I went in at 730am was home at 4pm out walking the dog 3 days later so hopefully I bounce bk from the next lot treatment 😁😁
Hello, thanks for your reply.
my first chemo is planned for 26 Feb. I am having 3 cycles of EC followed by 4 cycles of Paclitaxel.
it all came out of the blue following a routine mammogram. I’ve already had surgery to breast and removal of lymph nodes.
I know a lot of people go through the same and that keeps me reassured that I can do it too.
good luck to everyone who, like me, is getting to grips with this.
when do u start and what chemo u having ?
I’ve read a lot on here all very positive but I think it’s the word chemo
I had good results after surgery no node involvement I scored 34 on the ox test so I guess it’s just reassurance
im starting chemo in February and, like you, feel really scared about how I’m going to cope with it all. I’m usually quite strong but this unexpected treatment has really given me wobbles. I don’t know if reading about it or staying ignorant until it happens is best.
hopefully we will both get pleasant surprises. 😏
Hi how are you getting on
I’m due to start chemo on Wednesday an feeling really scared An peeped off with the lack of support from the care team
Princessleia ❤️ Contact your breast care nurse that you have been appointed, failing that ring the pals office at your trust and ask them to get someone to call you back. Usually when you contact your breast unit at your trust there are a number of people you should be able to discuss things with if your allocated breast care nurse is not available ❤️ You are doing so amazing 💪 I just don’t think you think you are and wobbles happen along the way, we are only human not robots so please don’t be hard in yourself because you really are stronger than you think you are ❤️ And you’ve everyone on here 👭 holding onto you too ❤️💕💕✨✨Shi xx
I feel really frustrated and abandoned at the moment. I have tried today and yesterday to reach the chemotherapy bleepholder, but each time I can't get through. I have a few questions, and now it's the weekend I feel really alone. I'm not coping with coming off the mini pill, and my periods are awful and all over the place. I don't know who to turn to. Also I am diabetic and my blood sugars are high and I'm scared.
Wow, that’s clever how they do all that.
I have spoken to breast care nurse and she said she will speak to a surgeon about my pain as mine was a locum and left now. It’s weird how the pain is in the chest wall too like centre as well as the breast. I also have a uncomfortable feeling going into the opposite arm pit.
Glad you are through the worst and not long to go.
They have decided on 6 rounds of carboplatin and taxadore. How was the carboplatin for you?. They didn’t want to put me on the aggressive one as I have a heart condition so I just hope this is ok. Did you loose your hair with carboplatin?.
I am trying to get a wig organised. I have long hair now I don’t know how I would bring myself to shave it off but I suppose it has to be done. I have two weeks radiotherapy not sure when they will fit it in. Oncologist said it will be on week 2/3 somewhere.
Did you have to take the steroid tablets before the day before chemo?. It says 8 a day?. Heard it has an affect in you not sleeping. I hope not as I’ve had really bad insomnia problems this year and just getting back in a ruitine.
I think by June I might be finished this journey. Just hate all the needles.
it’s so nice to speak to people on here that are going through the same thing. Do you know if you can drive having chemo? As it’s worrying with covid if my husband can’t do it I would prefer to drive myself. Xx
Hi, the licap flap is a type of reconstruction using your own tissue. I have a longish scar under my breast in the bra line going round to my back. They took some subcutaneous tissue/fat kept it attached to the blood vessels and tunnelled it round to plug the hole where the lumpectomy was. Very clever, extremely good cosmetic result.
I’ve just finished chemo last week. I had 12 rounds of Carboplatin Paclitaxol then four EC. The first bit was fine, EC was harder but doable. I’m just waiting now for radiotherapy end of Jan. You could ask your BCN about your on going symptoms? Xx
Thank you that’s interesting. I’ve never heard of Lucas flap?.
Start chemo on 14th, have you started yours? Which ones are you having?. His are you finding everything. I had surgery in 17th Nov but having a lot of breast pain and pain in my chest wall, I don’t know if this is normal so long after surgery xx
@whyte Hi, I am also TNBC and had a lumpectomy and licap flap then chemo. For early stage TNBC I think there is fine evidence now for lumpectomy and radiotherapy being better for local recurrence and overall survival rates than mastectomy. This is certainly what my surgeon told me but obviously it depends on the individual situation. Hope this helps x
I start mr chemo in January too. I was diagnosed with triple negative breast cancer in October the day before my birthday, I had a lumpectomy in November, they wouldn’t let me have a mastectomy but now I will be always worried of re occurance.
I don’t know whether to use the cold cap too as I have long hair and I am very scared too.
All the appointments coming up are overwhelming. I’m going to be on infusions once every three weeks and 2 weeks of radiotherapy. Good luck with yours. And I’d you need a chat message me as we would be going through it at the same time. R x
Few tips for cold capping, make sure they completely wet your scalp, I bought a heated throw to plug in when I went for chemo it was brilliant as you can get a bit cold.
But a kind shampoo (ie a baby shampoo) and a very wide tooth comb to save pressure brushing it.
Do not wash it on the day of chemo but the day after.
Hope that helps a little xx
Hi thanks for sharing your experience with me, it means a lot. I will do the cold cap thing as I want to try and keep my hair if I can. I will be quite pleased if I lose body hair so I won't have to shave my legs at least! (Every cloud!) Good to know about down there too lol xx
Hi yes the cold cap does sound good, I will be doing that. Thank you for letting me know about your experience it means a lot to me x
so sorry that you find yourself on the forums but welcome to the space where people totally get it xx
If you look on chemo monthly threads under going through treatment in the menu there will be a January one starting very soon, but in answer to your question it totally depends on what you feel will be best for you.
the thought of losing your hair at the point where your at is awful. The dread and pure anxiety of it all before it happens is honestly worse than when it’s gone.
I was told that because my hair is /was fine then the probability of it going was very high. So I did what you’re thinking of, but I got my hair cut into a short pixie cut, then it got shorter and shorter until I eventually had a buzz cut, which I loved!!
there is the cold cap option, I didn’t fancy trying it but lots of people do, and successfully manage to retain most or even all of their hair.
My hair started fully shedding after my second chemo. After a while you just get used to it… I have lots of bobble hats snd bandanas and even a wig which I never thought I’d use but I do… it helps to feel normal xxx
You can do this … and there are advantages to having no hair … literally I’ve never had smoother legs or arm pits! And yes … there too!
I have been cold capping and after 2 rounds still have a full head of hair. the chemo I am on is docetaxol (mine is secondaries). I think it depends what chemo you are on will depend on hair loss.
i haven’t found the cold cap too bad but maybe worth asking at the chemo suite x
I've been through a mastectomy and reconstruction, (all gone well so far) and I found out today I need six rounds of chemo starting in January. This is the thing I have been scared of the most (more than surgery) and I'm worried about hair loss. My hair is quite long, and I am thinking of getting it cut to shoulder length so any loss is less noticeable. Can anyone advise me on this? Sending love and hugs to all xxx