Morning! How did your first infusion go and how did you find the cold cap? 

Good morning all, I’m now into week 7 of a 22 week treatment plan. I was diagnosed with triple negative 4-5cm grade 2, no lymph nodes involved. My treatment is in 2 phases with first phase lasting 12-weeks. The cycle begins with Paclitaxel/carboplatin chemo drugs and pembrolizumab immunotherapy. Week 2 and 3 of the cycle is just the paclitaxel. I’ll finish phase 1 end of October and begin phase 2 which will be Epirubicin/Cyclophosphamide and the Pembro but this will be every 3 weeks. The weekly treatment is a lower dosage than the 3 weekly treatments. So far the main side effect has been fatigue. My hair began to thin around week 3/4 and continues to fall out (I was told I couldn’t use cold cap). Nurse told me it will 100% all go when I start Epi/Cyclo as they’re higher dose (to last 3 weeks).  I get a dry, icky feeling in my mouth after each infusion. Can’t really taste anything properly. My throat was sore too but that comes and goes with each infusion. I’ve had pins and needles in my feet, less so in my hands but again, this comes and goes with each infusion. 

Two recent side effects are an itchy rash on my forearms, a little on my face, and bleeding in my nose. Apparently chemo makes blood vessels in your nose fragile and they bleed easily. I use a lot of moisturizers on my arms and keep my nostrils moistened (wet tissues). I had been taking steroids after each infusion and I honestly got the worst side effects from those compared to the chemo drugs. I had to take sleeping tablets to help me sleep as they kept me awake and wanted to eat everything in sight. Also gave me anxious, heart-palpitation feeling. Spoke with my consultant about this and they’ve reduced the steroids. I have a PICC too which I’ll request get removed when I begin 3-weekly treatment. I’ll have my mid-treatment ultrasound 3rd week in October but I already can feel tumour is smaller. Consultant said I’ll have lumpectomy after chemo and more treatment after surgery but what the treatment is depends on where we’re at by then. Could be 5 weeks of immuno +/- radiotherapy.

I was told having a positive mental attitude towards your treatment and diagnosis is like having another drug in your arsenal. Stay positive, avoid sugar and alcohol (needs to be processed by your liver, which is already doing a lot managing chemo drugs), and eat plenty of fruits and vegetables to load up on antioxidants, anti-inflammatories and vitamins, all of which help manage side effects and contribute towards boosting your immune system. 

Hi- you sound like you’re really positive about it all. My husband says I am really upbeat and brave but I just keep saying I’m just doing what I’m doing because I have to, nothing to do with bravery. I feel totally normal and fine though.I feel like I’d have the energy to work but because I work in a school, the oncologist said I can’t because it’s too full of germs. 

That’s interesting that you were told you couldn’t use the cold cap- why was that? Also great that your hair hasn’t fully fallen out after 7 weeks with no cold cap. How much do you think you still have? I still have a full head of hair using the cold cap on weekly paclitaxel (5 out of 12 done). I think if it’s going to thin, it’ll start to happen this week. 

I’ve already had surgery so after chemo finished early November, I have radiation and continued three weekly injections for a year, then daily tablets for 5 years. Must say, I’m not doing well with the sugar intake - I like a cake and a hot chocolate. But I haven’t drank any alcohol since starting treatment and won’t until chemo is done.

How are your recovery white blood cells doing weekly? Mine went down every week until this week when they dipped back up. 

It went better than expected.  The cold cap wasn't a problem for me and I found getting into a pool on holidays harder, although right now I would rather be doing that!  I did realise that reality would be better than anticipation as you have all the info you didn't have before.  I suppose no one can tell you as every centre seems different, advice seems different and protocols are different. That said, for me it was small things like how big is the picc line and to know it's just 1.2 mm wide was an instant relief, and for the chemo, somehow I was expecting some sort of post apocalypse movie scenario, where I would feel the toxic liquid infusing, but no, the anti histamine gave me a high and the the paclitaxol felt less than the saline -  I wish I could have known it before. 
These comments and responses did help though. Just knowing some people found it tolerable helped me think, well, that could be me.  No side effects this far but, hey, week 1. xx

You both sound positive. I know what you mean though, Smudge24  it doesn't feel like a choice,does it? I wonder what else they expect? Cos I'm happy to try! 

Good question about the cold cap. My oncologist did say I was  "good candidate" because I have thick hair, but I would have wanted to try anyway.  I understand that it helps it grow back quicker, even if it doesn't save the hair.
Glad to here the tumour has shrunk, Chirl  That is great news. 

I am eating whatever I want, to make sure I eat. I don't eat much sugar anyway, and I eat loads if fruit and veg so good to hear it may benefit me.  I haven't had any alcohol. My oncologist said if you fancy it or if you're out socially and want one, then have 1! Emphasis was very much on the one! I haven't felt like it anyway and I've enjoyed alcohol free beers, which made me feel like I was drinking anyway.  She also said to socialise carefully to help your mental health, but that is tricky as you have to get over that mental hurdle first.

I have my first blood test tomorrow so see what that says and the 2nd chemo on Thursday.  xx

Hiya unfortunately I never had the second one I started having blurred vision after my first and rib pain and they put the second on hold I had to get my eyes tested they are ok but they think the blurry is from chemo or steroids so I see the oncologist on Thursday to see what next 

I’ve accepted that this diagnosis was an opportunity to change a few things in my life for the better and so rather than dwell on the typical negative aspects of a cancer diagnosis, I’ve adopted quite the opposite and embraced changes that steer me towards a healthier lifestyle. I have a stressful job and lead a team. Work always came before  anything, food was something quick, but as healthy as possible. I’m now working 9-5 (although now with more rest breaks and only from home). No more working into the evenings. I’m preparing home-cooked food. Lots of fruit and vegetables. I always had time for exercise. I was 70% through training for a marathon when diagnosed and will continue that once I’m through this. Positive is the only way to go!

I’m not sure why cold-cap was not an option for me. They didn’t say why. I’d guess I’ve lost about 30-40% of my hair at present. I’ve wanted to just shave it all off as I’m fed up of it dropping out onto my shoulders. I wear it in a ponytail under a cap most of the time. My husband said it still looks good and to keep it as long as possible!

I used to have sugar and cows milk in coffee. I now don’t have any sugar and have switched to oat milk. I actually really like it. Can taste the coffee more! I do have a sweet tooth and love baking and eating cakes but have resorted to snacking on dried fruit or baking healthy granola bars loaded with nuts, seeds and dried fruits. They’re great alternatives and make me feel good about not ‘feeding’ the tumour. 

So far my blood counts have been good, although last week the nurse said my neutrophils were on the low side of acceptable. Kinda gives you a reality check to know how vulnerable we are to infections. 

I really admire you all for giving up the sugar. I've cut down but I really struggle. I like a row of a large bar of Galaxy or CDM after dinner.

I'm due to start chemo in the next 2 weeks. I had my echo this morning and blood tests yesterday. I'm just waiting for my PICC line.  

It does and I feel I have been fighting a cold this week.  Have you managed any running or have you put it on the back burner for now?  Assuming 70% into marathon training means you are a seasoned runner.
Great that you have made some positive changes.