Hi there 

sorry to but in but I've just sat and enjoyed your messages to each other.

i too have grade 3 ductal triple negative.  Unfortunately I got diagnosed over in Spain which was awful but drove back to England to be treated. It was in April in the middle of full lockdown, so when the oncologist discussed my treatment I was told no new chemotherapy is to start yet so I had to have it removed first.  It was a relief for it to come out but now I have no marker to see if the treatment is working.

I am on 3, 3 weekly EC then 9 paclitaxel. 
I have just had my third EC 2 days ago.  
I too have had a gene test and will hopefully get the results before my radiotherapy ( I won't need it if I opt for a double mastectomy).

I tried the cold cap twice but it's so cold and makes treatment so much longer and leaves you with a headache too so I braved the shave. It's lovely not having blooming hair all over the house. Also once you get used to it the weird sore tingling sensation eases.

i would love to stay in touch with you ladies if I could.  It's always nice to talk to someone who is going through a similar situation.  Stay strong x

oh also my friend had the same triple negative and she had exactly the same treatment as you nearly 2 years ago.  By the time she had her first scan half way through treatment her 5cm lump had shrunk by half and when it came to her operation there was nothing.  Just thought I'd let you know. X

Hi Sharon 

really nice to hear from you. Sorry your going through this rubbish thing Aswell. 
 

How are you going with the EC? Do you have many side effects from it? I heard the cold cap isn't great, I think I probably would of given it a go if it was option but it's understandable that it's not available and by the sounds of it it's probably for the best lol. My husband cut my hair on Friday so at the moment I've got a short back and side ha ha I think he's gonna shave it tomorrow though as although it's stopped falling everywhere it's not all over the top of my clothes and pillow when I wake up... I feel much better for having it cut though so I can imagine the next step will feel even better. 
 

Did they say how long you would wait for the result of your gene test? They told me 6 months but could be sooner. 
 

They've not mentioned to me about any halfway checks just a scan after treatment as there was a query on an internal lymph node that might be affected so the oncologist just said we'll do a scan after treatment to check on it and do some targeted Radiotherapy if it's still there. That's so good to hear about your friend. 
 

Hope your ok and having a nice Sunday :happy:

xx 

Good morning 

I think once you get over the initial shock you just get on with it. It's the not knowing and waiting for results that's the hardest bit.

anyway ive found the EC not too bad. Most of my hair all over my body has gone.  My armpit hair was gone in the first two weeks which is good coz I dont like shaving under my post op arm pit coz it's a bit numb. I've had no sickness or anything but I've had to eat smaller portions. I suffer with IBS anyway so I've been really bad with my stomach that's been the hardest part. I've had bad acid reflux but I'm on tablets for that now and oral thrush and there's a mouth wash for that.  So whatever side effect you do get just let the dr know and they'll give you something for it. 
You will take an anti sickness tablet an hour before your first cycle, try to take this with food high in fiber because it will constipate you a bit.  Also there will be 3 days of steroids to take on a morning. (Are you taking anything with the paclitaxel)?

so all in all it's not bad at all.  Another friend of mine carried on working when she was on EC. 
I suspect each cycle just gets a little bit harder regardless what it is.

all I know about the gene testing is that we should have them back before any radiotherapy because there is no point having that if the breasts are coming off.

im a bit worried about that result as I have kids.  I have a girl and three boys.  My daughter has also just had a daughter.  I'd rather have a life time of radiotherapy than have to tell her she needs testing . I'm 46.

My friend did it on a clinical trial for triple negative cancers.  It was tested all over the country and was a massive success, so you know you're definitely having the best treatment.  Anyway maybe that's why they scanned half way through for there results?  I dunno?

lovely to speak to you.  Keep in touch and if there's anything else you need to know let me know.  Also let me know how your treatment is going.  X

Aah yeah I can imagine it's hard with having kids and the gene.. hopefully you won't have it but if you do at least you will know and know they will be cautious because of it. 
 

it is definiteltly the initial shock and the not knowing that gets you. I was an absolute wreck the week between having the biopsy and finding out but then once I knew what it was I seemed to calm down. 
 

I get steroids through the PICC before each weekly treatment and then I get 3 days tablets to take home every 3 weeks when I have the Carboplaitin added in with the Paclitaxel. 
 

That sounds good your friend being on the trial and it working so well. Definitely nice to hear such a positive :) 

good to hear you feel well off the EC l. my nurse last week told me it's pretty brutal so sounds like your doing amazing! I definitely think positivity plays a massive part in it. I've tried to carry on as normal as much as possible and feel pretty ok up to now apart from the first week but I'm thinking that may have been due to the double treatment. Other than that if it wasn't for my hair falling out I think I'd be wondering if it was going into me properly lol. I do get the odd other symptom don't get me wrong but nothing major.. I pray it stays that way! 
 

what day do you have your treatment.. mine is Tuesdays 

xx

Hi Sarah,

How are you doing? How far are you into your treatment?  I would expect when you have your double one that would wipe you out a bit more than usual and for a bit longer. How's the hair?  Have you shaved it yet?

i have my treatment on a Friday.  I generally leave the hospital and go have a pint before the side effects kick in haha!

im having my picc line fitted in the next week ready to start my weekly paclitaxel.  I'm keeping my fingers crossed I'm as good as you on it!

 
oh and my fingernails seem to look bruised!  Just thought I'd share haha

speak soon, take care xx

Hey, sorry for the late reply I've not been on here much 

how are you doing? Have you started your treatment? How did the PICC go? It's not so bad is it :) 

That made a laugh!! A pint before the side effects kick in :laugh:

I've just done treatment 7 today :happy: this was a double aswell so bracing myself lol one more double to go and 5 more singles then onto the next 

hope your doing ok xxxx

Hi Sarah,

how you feeling after your double? I hope you're not too bad.

 I'm had my picc lone fitted and was really interesting.  I watched everything they did and on the X-ray too.  I was amazing.  It's been over a week now it's still a bit uncomfortable every now and then but nothing bad.

my chemo was delayed again because my white cell count was too low.  I'm actually going for my first cycle of paclitaxel this afternoon.  So fingers crossed I have no  allergic reaction.

I also got my gene test results and I have a mutated BRAC2 gene so I won't be having radiotherapy but I will need a mastectomy and then eventually when this covid is sorted I'll have the other boob off and reconstruction. Oh and overies out too.  I've told the family and they're on with getting tested too.

anyway how's your side effects? You still ok? Also how's your hair?

ive bought some awesome wigs and some crap ones haha!  I'm enjoying the wig shopping so much I think I may be an addict .

well speak soon. Take care 

Sharon x

Hi Sharon, how are you doing? I'm hoping that your bloods were all good and you've started the Paclitaxel. 

how are you feeling? Hope no side effects! 

sorry to hear about your gene test.. one thing though your family can be tested as you say and can be on top of it and will be screened earlier. 

I'm good thank you. Odd side effect but nothing major. My hair is now the shaved look as it's growing pretty quick so now I either wear a head dress or go bare... getting slightly cold for that too lol. Sounds like you've been having fun with the wig shopping :happy: I did the race for life on Saturday( I only walked it.. no running lol) and a few of us wore bright pink wigs and even though it was meant to be a joke I really liked it ha ha

Hope your ok 

Sarah xxxx

Hi Sarah,

well firstly I thought I'd already replied

how are you? Are you on the EC now? How you managing?  How's the hair?

im on paclitaxel now.  The side effects are minimal it only 2 days out of the week I feel a bit groggy. My hair is starting to grow back whoop whoop. 
ive seen my plastic surgeon and as long as the covid situation behaves I'll be having a double mastectomy and reconstruction in one opp in December. YESS!

my last chemo is 6 November,  4 more to go whoop whoop!! 
I also did the race for life and raised nearly 1500 pounds.  It was a brilliant day.

antwat I hope your ok.  Speak soon 

sharon xx

Hi, how are You? 
 

So good to hear you are doing so well :) I've finished my Pacliataxel and have had my first round of EC...all I can say is what strong s**t .. I had it Tuesday and came home thinking.. "yes I feel great" don't know what everyones talking about!.. had a little nap... woke up .. and then it hit me! I felt the roughest I've felt so far .. but having said that i'll

still take it if it gets rid of these little buggers! 

I did the race fir life too (only walked it mind you) lol but it was so good a few friends got together and we just did it socially distanced round the park :) you raised such a lot of money! Well done and for an amazing course! 
 

I see the surgeon in a few weeks too to discuss surgery. My treatment should finish beginning of December and then surgery some time afte that.

How are you coping with all this lockdown stuff? I know its for the best but I'm fed up bow not being able to do stuff! 
 

hope your ok and it's all still treating you well :) 

xx