Docetaxel, carboplatin and phesgo, didn’t get as farcas carboplatin before reaction!
2 Likes
Hi Maia,
I had PICC line fitted Tuesday and 1st chemo today (EC). Similar to you, I was more worried about the PICC line and any needles. I personally didn’t find the PICC line bad, there have definitely been worse procedures during this rollercoaster of a ride. One’s that stand out for me is the blue dye before surgery or the wire placement. I sobbed my heart out at that appointment (all emotions came at once). I get a little grossed out at my PICC line being moved around but it’s much better than having to have a needle everytime.
My children have helped me choose some funky designs for PICC line covers, waiting for them to arrive.
No immediate symptoms from EC yet, slight headache and a bit nauseous, but that could just be nerves/tiredness.
Tried cold capping, no pain, if anything it didn’t feel cold enough or tight enough. I kept mentioning it to the nurses but they said it was perfect. I’ve read so many stores of people finding the cold painful or unbearable, so I’m not holding out much hope for it working because it didn’t feel intense enough. I haven’t ordered any wigs or hats yet, so best get shopping!
2 Likes
Hi @stafford22
How are you feeling now you’ve had your last EC?
What were your worse days on EC? Or should I ask what were your best days in the cycle? Just trying to get an idea of what the next few days/week will be like. First EC today.
I really want to take some paracetamol for my headache, but I’m worried about masking any signs of infection or pain around the PICC line. I don’t generally like taking medication anyway.
1 Like
hi Stephy1, I had exactly the same treatment, but started in September and finished in January - so not on this thread but thought I’d pop in just to say take it one day at a time and eventually it will be over! It’s a tough regime, though of course as we all get told about a thousand times a week, “everyone responds differently.” Your description of how you’re feeling emotionally felt pretty familiar too. These ‘chemo starters’ forums are a great source of support, and there is also a HER2+ thread. Take it one day at a time, don’t hold back from calling the helpline about any side effects, and stay open with your medical team about how you’re responding - and you’ll get through it! PS I had a really bad reaction to the cold cap so gave up on it after two sessions and lost my hair. It’s definitely not something I would have chosen, but for me it hasn’t been as bad emotionally as I might have imagined.
1 Like
I have had 4 of 6 of the same treatment as you. Mine started at the end of February and I have had an MRI after each 3 chemos. So half way the lump has shrunk from 41mm to 28mm. So it’s working! I will be having surgery last.
I decided to do a charity head shave after my hair started falling out after the 2nd chemo. Strangely, I didn’t find it that upsetting considering the grand scheme of things and I’ve raised loads of money for CRUK.
3 Likes
Hey hope it went well.
This was my pattern
Days 1-3 bad hangover feeling
Day 4-5 felt low and upset and weak
Day 6 -10 felt v weak (especially days 6-7)
Day 10 onwards each day got a bit stronger
Day 14 back to normal but felt tired
4 Likes
Hey Stafford,
Thanks for the words of wisdom.
Had the PICC line in yesterday, can’t say it was a pleasant process - they hit a nerve (literally) and had to have a few goes at it. I think it was more complicated because I had to have it on my left hand side? Anyway, done now and no more needles for the next six months 
How have you found the EC? Hope you managed to avoid the worst of it - those info packs they give you for the consent paint a pretty bleak picture.
I’ve ordered a couple of soft hats but finding wig shopping a bit overwhelming, did you get yours online or in person?
Will let you know how the first paclitaxel goes next week! xx
1 Like
Hi there
Well done with your picc line, it’ll take a week or two to settle then it’ll be fine.
I found EC v hard. It floored me for the first 10 days after each cycle and my body was v weak, like I had a job to walk to the bathroom
But after 10 days my strength came back and I had a week of feeling normal before it started again. Lots of people find EC ok but it is a v strong chemo and I found it hard x
Hey Sammy,
Got the PICC in yesterday, can’t say it was much fun but all done now and I’ll absolutely take 30 mins of discomfort for six months of no needles! God yeah, the wire placement was horrid, I had to have a load more biopsies at that appointment too so I felt like a bloody pin cushion, I was shaking like a leaf when I left.
I’ve ordered a couple of PICC covers and some soft hats but not braved the wigs yet.
Fingers crossed for you with the cold cap, I hope it works for you! I don’t think I’m going to bother, I have weekly treatments for the first 3 months and it seems like a lot of faff so I’m going to donate my hair after a couple of weeks. Always wondered what I’d look like with short hair so I guess I’ll find out.
Can’t imagine what it’s like going through all of this with kids, must be a whole other level of stress and anxiety. I’m worried about having the energy to walk the dog, let alone having to take care of little humans! Hope you have all the support you need. X
2 Likes
Oooft, yikes! I bet you’re relieved to see the back of it. Hope the paclitaxel is kinder to you, I think the lower weekly doses are really meant to help with the worst of the symptoms. X
1 Like
Yes I really am glad EC is over. Weekly pac is meant to be more manageable. Well I hope it is!
Plus remember on all of these treatments they can alter the dose x
1 Like
Hi all, I’m Sim and I’m starting chemo on 16th may. 4 rounds of ec every 3 weeks and the paxclitaxel every week for 12 weeks.
I’ll also be giving scalp cooling a go.
Port fitting is on Monday.
For those in a similar situation who scalp cooled. How did you find it, is it keeping your hair on?
Any advice on what to wear on day 1? I was thinking yoga pants, a warm jumper and and electric blanket?
2 Likes
Hey you’re on a v similar plan as me.
I’ve just completed 3 ecs and now moving onto weekly paclitaxel
I tried cold capping but I stopped after 2 cycles as I was losing a lot of hair
I would wear leggings, short sleeved tshirt and a zip thru hoody. Lots of hospitals won’t allow electric blankets as they’re not pac tested by then. I never felt cold even when I cold capped. With EC the nurse is sat next to you the whole time so they’ll be chatting to you. If cold capping take 2 paracetamols beforehand. The first 10 mins is the hardest. The nurses are lovely and will look after you x
1 Like
You may have a completely different experience on EC. Keep a diary as more than likely you’ll follow same routine on each cycle x
1 Like
Hi Ake, Thank you so much for your kind words and encouragement, it really means a lot. I just started my Zarzio injections (that’s the white blood cell booster… I blanked on the name earlier, haha!) Glad u mentioned the helpline, I actually held back from calling them yesterday because I wasn’t sure if it was “serious enough” to ask whether I should take paracetamol before the Zarzio jab. Your message reminded me that the helpline is there for all concerns, big or small. I’ll definitely call next time if I’m unsure. 
Wishing you continued strength and comfort through your treatment, one day, one step at a time. 
1 Like
Hi @rayasnan
, thanks so much for your kind reply. I had a mastectomy first, so I can’t really “see” if the treatment is working, but I’m hoping it’s doing its job and helping to reduce the risk of recurrence! My case is a bit complex, so I had additional scans including an MRI before starting chemo. The doctors wanted to rule out anything else, and they did spot something unusual around my ovaries, but I’m taking things one step at a time.
I’m really impressed that you raised so much for CRUK, that’s amazing. I had hoped to donate my hair too, but it was too short, unfortunately. You’re already more than halfway through chemo, brilliant work! Keep going, sending you lots of love and strength 
1 Like
Hi everyone, hope you are all doing ok. I know the anxiety of waiting is so hard and the unknown is horrible. I had my first round of EC yesterday. It has been a long 12 week wait since surgery and my mental strength has definitely deteriorated over this time. I am unable to cold cap as there isn’t capacity, but I guess it’s one less thing to worry about. I did manage to get a wig last week and have brought some head scarves. I haven’t been given the option of anything other than a cannula but going with it and see how it goes. The nurses were wonderful yesterday and I felt so cared for, I have to say the anxiety was worse than the process itself. So symptoms are ok at the minute, I started to feel sick about 4 hours after I got home and this got worse through the night. I’ve had a sickness tablet this morning and it seems to have eased and had some toast and rich tea biscuits which have gone down well. Also my legs are a bit achy but nothing to write home about. Lesson learnt though to make sure I do take those tablets as soon as I start feeling sick. I will keep you all posted and eagerly reading all our journeys. My son starts his GSCEs on Monday too so it’s a very stressed household at the minute 
. You are all truly amazing! Sending well wishes to you all.
3 Likes
Hi sunflower
Def take the sickness tablets at fixed times throughout the day don’t wait until you feel sick as it’s harder to get on top of x
4 Likes
Hi all, i never post on anything even facebook but here goes.
I had my first EC on Tuesday and just thought I’d give a run down on how I’ve been since as I read lots of other posts to try and get an idea on how I would feel/suffer 
.
Chemo day- chemo took about 45 mins through my port I was there a total of 3 hours as I am cold capping. I was worried about the cold but tbh didn’t bother me, in fact I got a bit warm in the end
Day 2 - took the anti sickness religiously and steroids and just chilled on the sofa then got bored and batched cooked and did some washing. Felt ok. Took the white blood cell jab and waited for the bone pain but that didn’t come so all good.
Day3 - I logged onto work and again felt fine taking anti sickness tablets
Day 4- same as day 3
Day 5 - I was worried I would crash as I took my last steroids yesterday but I didn’t. My friend popped round for a coffee and in the afternoon I had a small glass of wine in the pub garden and went for dinner in the evening with my family.
I know things may not stay the same but I’m feeling positive at the moment, I’m eating well and getting out walking, I was expecting to be laid up in bed for days on end so I hope it helps some people feel less nervous.
12 Likes
Its really good to hear that your experience so far has been positive. I’m due to start chemo on Friday with PICC insertion beforehand. Going from periods of forgetting that I even need treatment to sheer panic and feeling really sad. I’ll just be glad to start tbh. I’m going to try the cold cap and hope that it works but will be getting a wig just in case. I’m so glad I’ve found this forum - just reading through what you lovely ladies’ have experienced and your recommendations is so helpful, so thank you 
8 Likes