Hello

Hi, I’m quite new here too, only posted on a couple of threads.  I was diagnosed in Feb too, right side, two tumours, one grade 1 and one grade3.  I had mastectomy and DIEP flap reconstruction 1 April.  I need chemotherapy but still have a wound that hasn’t healed.  I’m booked for my first chemo on June 20th but I think it’s going to be delayed as I can’t see this wound healing by then.  Can I ask what chemo you are having?  I’m due for EC-T, 6 sessions in total, 3 EC and 3 docetaxel. How are you feeling with it? And are you cold capping? Hope you feel better again soon. 

Hi Jen, 

I'm having four infusions of docetaxel / cyclophosphamide over a 12 week period.  My second session is on 20th June.  I am using a cold cap, I tolerated it the first time around and am hopeful that I'll continue to be able to manage it, I didn't find it too bad so it should be ok 

Today, having read a blog on here, I started taking the emergency anti sickness pills, I think I will continue to take these.  I didn't really feel I could justify talking them to start with as the nausea wasn't too bad, but despite not being bad, it was always there.  I think thanks to these pills, I did have a short spell today when I felt myself again, then I had to have a lie down 

Thank you for sharing your experience, and well done on getting the first one done!  I am worried about the chemo - probably more than I worried about the surgery, so I appreciate reading this!

I’m really hoping to tolerate the cold capping. I’ve tried my husband’s frozen migraine cap, although I think the chemo cap is colder.  I have read on here somewhere that it’s worth taking the anti-sickness pills from the start as well. I’m glad to hear that you’ve been prescribed something for the rash - I hope it helps calm it down.  The wide range of possible side effects can be a bit scary, though my nurse said you won’t get all of them!  

I’m currently still off work sick, if it had just been surgery I would be going back now I think.  As I am about to start chemo and still going back to the dressings clinic three times a week I will stay off and see how it goes.  After this I need radiotherapy but I don’t know how much - I don’t really want to know yet!  1 hurdle at a time, 1 day at a time really.   I hope you have some good luck with the antihistamines and anti sickness meds, and have a bit more energy today.  (And if not, I hope you can have a good Power Nap!). 

I took two paracetamol about 15 mins before the cold cap was fitted, they may have made the difference for me and I'll definitely do the same next time.  Bizarrely, while I wore the cap, the rest of my body was not cold and I went prepared with an extra blanket and layers.   

In some ways the chemo was worse than I was expecting but at the same time not intolerable at all.  We're all different and get a different cocktail but I think they know what they are doing.  I wish you all the very best and if you have any questions that I may be able to answer, just ask x 

Hi Rachel, I too had my first treatment on 30th May and will be every 3 weeks for 6 cycles.  I'm having my surgery after chemo due to the size of 'Larry the Lump'. I felt not too bad on the Saturday and Sunday but from Monday it all went downhill. I had the worst ever (so far) heartburn/indigestion which stopped me eating and really affected my sleep.  On Wednesday my hubby collected some tablets for me which thankfully have stopped that bit. Then the 'other end' started and that really wiped me out. Loperamide taken, I managed to eat a bit on Thursday although Friday wasn't great. Saturday (yesterday) I got up feeling like a fog had been lifted, ate bits when I felt like it and was fine until I ate some watermelon (which was so soothing on my sore mouth) and within 10 minutes I was back in the bathroom.  That wiped me out for the rest of the day. It's really not very fun but all I'm doing is taking things a day at a time and hoping at some point the better days will outnumber the bad days.

My next treatment is 20th June and I'm booked to have a PICC line put in the day before. 

Take care everyone ️ x

Hi bumble14,

Freeze some pineapple juice in your ice cube tray. Then made it up when frozen and sook on it. There are enzymes in the pineapple that helps your mouth. My nurse told me to do it. I did and it worked 

Good luck xx

Hi Bumble, 

I hope you were feeling better before your treatment today and the PICC line went in ok.  I've been taking omeprazole throughout so I think that's why I haven't had indigestion, it's horrible on top of everything else.  When my rash cleared up I felt much better and my energy levels increased. So far I haven't had any oral issues and my bowel movements not too disturbing, but not entirely normal.. I've just got home having had the second infusion and am hoping that I'll have a similar high over the weekend that happened after the first. I'm also hoping that maybe I'll be more prepared for the deterioration that will follow but that it won't knock me out as much as it did last time... I must be an optimistic! I hope you have a better time and that you have meds to help you through.  

One thing on the PICC, my partner changed my dressing and flushed it for the first time last week.  We didn't close the clasp by the bung fast enough and I ended up with blood in the line.  At first I want sure if I was imagining it but by Monday it was clear it was blood.  I was going to the hospital for an appointment so got it checked out and they changed the dressing, got rid of the blood and flushed the line.  The online video we watched didn't reflect the kit we were given so it was a bit confusing.  So good luck when you come to do it and make sure to close the clasp quickly or immediately before you remove the syringe.  We were shown by two different nurses this morning and one closed it before disconnecting and the other after... 

All the best, 

Rachel x

Hi Jen, 

Have you had your first infusion today? How did you get on? Did you manage to tolerate the cold cap?  I'm finding that as of week two, I've been losing lots of hair.  I'm going to get it cut short as it's quite patchy and I think it'll be easier wearing scarfs and my new wig if it's short...  But I'll continue with the cold cap as it's supposed to help regrowth.

Hope all's going well. 

All the best, 

Rachel x