HI, yes I have all the same feelings and mixed emotions. I am having my first chemo session today and am terrified. I was supposed to be going in at 8.30am but I got a call yesterday putting my appointment back to 11.30am as they haven't got approval yet even though I have already signed the consent form. I am praying that my chemo doesn't get delayed. 

It is really hard to stay positive but I am really trying. Good luck with everything, have you got a start date for your treatment? I found that the hardest bit, waiting for my appointment and praying nothing gets any worse whilst waiting. 

Hi SueBea

Urgh I'm not very clever I've just typed a message to you and did something wrong when sending and lost it, doh! I'll blame movement of the train! 

Thanks for your reply a d good to know we all have these mixed emotions. At the moment it feels like it's not me a d was someone else they were talking about. As I don't feel ill and haven't had any letters etc. I was diagnosed on Tuesday so early days still. Think they said chemo in about 4 weeks. 

Aww sorry your appointment has been moved, I hope they don't keep you waiting too long. Good luck for today, I'll be there soon needing some encouragement.

Mich x

Welcome Claire! 

So sorry to hear your diagnosis and I hope you’re doing OK with the treatment. Thanks so much for sharing about your two friends, it’s great to hear these positive stories xx

Hi Ladies,

Sorry that you have to join our club Claire but hopefully we can support you.

These positive stories are really great to hear as people seem to forget to post once they get the all clear but it's the boost most of us need. Wow Roz, that's amazing news about your cousin. 

My cancer nurse told me that there was nothing I could have done differently to stop getting TN cancer. Obvoiusly a healthy diet and healthy lifestyle is recommened but we would have got the illness anyway. I will find it hard to cut out sugar as all I crave is chocolate and most other food makes me feel sick. 

Keep positive Ladies, easier said than done I know!!!

Sue xxx

Thanks ladies.  

So far I'm not doing badly on the chemo but it's early days.  Bit of nausea on double dose weeks but kept under control with tablets.  My hair started coming out by the handful so my boyfriend (a hairdresser) shaved my head and I'm going the bandana route.

I'm having paclitaxel every week for 12 weeks, every 3 weeks I have an additional dose of carboplatin.  After that I go onto cyclophosphamide once a fortnight for 8 weeks - I understand that one is a bit harder on the immune system.

My tumour has shrunk from 2.5cm to 1.5cm and I'm told that means I can have a lumpectomy instead of a mastectomy.  To be honest, right now, I just want a double mastecomy but the doctor says there's very little difference in survival rates.  

I know what you mean Sue because I got addicted to haribo when feeling nauseous! You will be pleased to know that chocolate doesn’t quickly increase the sugar level. The fat content in it slowly releases the sugar in you rather than quickly spiking it...it was the spiking my dietician suggested to limit. So don’t worry about chocolate :) 

Hey Ladies,

Welcome Claire :) 

Thanks Rozza for the positive stories and the food advice.  It does make sense about limiting the sugar around treatment so I'll give that a go.  A friend of mine is going through it in France, also TN and she has just said that she fasts the day before, during and after as it could help the drugs be more effective for the cancer cells.  As the little buggers lap it all up to grow lol!  So just need to find whats right for me, at the moment just hope I'll keep food and err water in me next time!

My one tumour feels different already, the big *** 53mm so hope it is getting the ***. I've been told I'll prob have a masectomy as only a small cup but they will assess later. I guess that will also depend on the gene test.

Which week are you on now Claire?

xx

Hey Ladies,

Hope you all have a lovely weekend :)

Big hugs

xx

Have just read your post and you had the same as me ... 4 epurubicin then 4 Paclitaxell or whatever it’s called! I’m nearly 4 years ok! Keep positive an I wish you all the best xx

Hi Jojo,

Thank you for your post, it gives me hope. How were the side effects on Pacllitaxel? I am so happy you are 4 years clear, it is the news I am praying I hear. Most days I am up-beat but every now and then I have a total meltdown, they always come out of the blue. 

Have a wonderful weekend,

Sue

Hi Ladies,

Mich, how are you doing now? I hope the neausea has gone. Have you managed to keep hold of your hair? I still have a lot left but my crown is thinning fast but still only need a hair band.

Roz, I hope you have settled back into a normal life now the endless hospital appointments have finished. 

Claire, it's brilliant news that your tumour has shrunk, I haven't had mine measured since treatment started which is a worry!

Have a wonderful weekend Ladies, if you can in the rain!!!

best wishes to you all,

Sue

Thanks for the welcome ladies.

Mich8, this week was week 5.  I've just realised that when I move on to cyclophosphamide it's going to be given in conjunction with adriamycin so I think the second part of my chemo treatment is definitely going to be worse than the first but hey ho.  That's great that your tumour feels different - I find myself prodding mine quite often!  Interesting what your friend in France said about fasting, someone else has mentioned fasting around chemo to me but I don't know the details.

Thanks SueBea, knowing it's shrunk definitely helps with mindset.  Will you get measured at all?  I'm finding I get practically no side effects with paclitaxel, I've had 5 weeks of it and I think when you're having it weekly then 3 weeks count as one round.  I have lost my hair, as mentioned, but I only get nausea when I have the carboplatin as well.

Hope you're having a good weekend ladies.

Claire

Thanks for the welcome ladies.

Mich8, this week was week 5.  I've just realised that when I move on to cyclophosphamide it's going to be given in conjunction with adriamycin so I think the second part of my chemo treatment is definitely going to be worse than the first but hey ho.  That's great that your tumour feels different - I find myself prodding mine quite often!  Interesting what your friend in France said about fasting, someone else has mentioned fasting around chemo to me but I don't know the details.

Thanks SueBea, knowing it's shrunk definitely helps with mindset.  Will you get measured at all?  I'm finding I get practically no side effects with paclitaxel, I've had 5 weeks of it and I think when you're having it weekly then 3 weeks count as one round.  I have lost my hair, as mentioned, but I only get nausea when I have the carboplatin as well.

Hope you're having a good weekend ladies.

Claire

Hi Ladies,

[@jojo1968]‍  That's great to hear, thanks for joining us :)  Its going to be a long road but we'll get there!

Thanks ladies, feeling so much better no nausea.  I have my pre-assessment on Friday then ready for round two on 08th Oct.  Still haven't heard about my port.  I've chased so they will get back to me today, think they lost my referral lol!

Yeah i'm on th EC drug then switch over to Paclitaxel every week then mixed with carboplatin every 3rd week.  I still have my hair but then I have only been zapped once! Think it will start from the second dose?

I went wig shopping on Saturday, wasn't as daunting as i thought and the lady was really lovely.  She has ordered a blond bob, very similar to my hair now.  My friends say the shorter style actually suits me which is nice to know.

Did you guys have the neutrafil injections?  I had terrible pack pain with them, thought i had pinched a nerve but the oncologist it is a side affect of them and will go with pain killers, which it did thank goodness.

How was everyones weekend?  Hopefully enjoying it inbetween the showers ;)  No doubt its humid for you Claire.

Hugs all around

xx

Hi Mich, 

Yeah I had the GCSF jab with EC. My boyfriend did the injection for me as he's diabetic and used to needles! I had a very robust response to the first one and made loads of neutrophils which made my bones really hurt - So my doctor split the jab in half on two different days and that worked a treat. 

The weather has really turned! Autumn is definitely here!

hope everyone is good xx

Hi Rozza

Ha ha that's handy he's used to needles! I never thought I could but hey you get the courage from somewhere eh. I hope my neutrophils are good, was damn sore, back was so sore in the night I could hardly breathe or move but luckily pain killers helped.

Yeah sure is autumnal! Went out for dinner tonight walking in between the rain showers. It will be pretty when the sun is out and leaves fallen esp in the lon parks

Hope work is treating you well. 

Xx

Hi ladies,

I'm having my chemo as I type this, it's going ok so far. The nurse has upset me saying that EC is the worsed for hair loss so not really worth cold capping but I'm persevering anyway. I've no idea when I'm getting my lump measured so I don't know if the treatment is working.

I hope you ladies are all feeling well, I'm hating this weather. I should have gone to Spain last Sunday but hey ho! 

Stay warm, love to you all

Sue

Hey Sue, 

Oh my what a bundle of joy that nurse is! Ignore her and persavere, Rozza is proof that it is worth it!

How you doing otherwise? I'm not sure when I'm having another scan, I know they said I'll have a few throughout treatment. Maybe after the EC is finished. 

Sure is windy today! Gorgeous sunshine, I've just walked to Broadstairs now treating myself to cream tea nom nom! 

Hope you feel OK later today. 

Xx

Hi Mich

You said you went for a walk in Broadstairs, do you live in Kent? I'm in Essex which isn't a million miles away. 

Have you managed to keep your hair? I'll be thinking of you next week, let me know how you get on. I'm sure it will be better than last time.

Take care

Sue x

Hey Sue

Yeah I'm in Ramsgate so just down the coast further from you. Do love loving here esp in the summer. Today err not so warm!

My hair started to fall out last night, not in clumps though just a lot more when brushing it. Today my scalp is so sensitive and tingling. 

I've finally got my appointment for the port fitting on 21 Oct, so just in time for the following one. Rozza is your port out now? 

The pre assessment went OK and bloods fine. I need to get there half an hour earlier to take new bus anti sickness meds, so fingers crossed. 

How u feeling now after Monday? Any new side effects? 

Xx

Hiya Mich,

I'm a lot better this time, not so nauseous. Just some advice, don't keep brushing your hair. When your head starts to tingles that's when you have most hair loss. I've been using dry shampoo and patting it out of my hair. It seems to be working as after 3 sessions I still only need a wide headband when I go out. 

Sending positive thoughts your way xx

Hi Mich,

No it's not out yet, but they did say they would do it from end of September so I'm expecting a date soon. My port is quite prominent looking as I'm slim, so I'll be glad when it's gone, although it has been really beneficial for the treatments. Are they going to do yours on local or general anaesthetic? I had mine on general but everywhere seems to differ. 

I'm so tired this week! I think the effects of the steroids and the high from finishing have gone and now I'm now wiped from 'normal life' and 2 days in work! 

Sue I'm so glad the hair loss is stabilising x

Hey Ladies,

Ah thanks for the advice Sue, I have dry shampoo so will give that a go.  Glad to hear you are feeling better this time around. Hopefully that will be me next week :)

Hope they dont keep you waiting too long Rozza.  I was told it will be under sedation, but will wait and see when i get the letter confirming.

Aww sorry to hear its been a tough week Rozza, hope you have a relaxing weekend planned.  It sure has turned nippy now!

Have a good one ladies

xx