Hey everyone, I have my 4th weekly paclitaxol today. They seem to be going much quicker than the EC. I also realised this morning I’m officially halfway through chemo, this is session 8 of 16! So that has given me a boost. I have found my main side effects to be a tickly cough that keeps me awake at night (I thought I had a cold, but it’s not) and pain in my legs which is in the bones and muscles, they feel very heavy sometimes. Any tips welcome!
@rachel60 Hey Rachel, I managed to work from home through EC. I found it hardest once I finished the steroids, my energy and mood dropped alot and I often had a couple of days off. Hopefully your employer can be as flexible as possible.
Half way mark is huge! Well done. Have you tried epsom salts for bone and muscle pain? 20 minutes in bath really helped. Also I got a heat pad from amazon. It was about £20 and really helped. Maybe when this heat wave eases!!!
Thanks for tips on working. I’ll play first one by ear and then hopefully will have a better idea how the other 3 will go. Its the unknown at the moment.
Hi Rachel60 … Did you start your EC yesterday? Hope so and hope it went well. Im thinking of you.
My update. I’m day 9 post first round of chemotherapy (EC). Every day brings a new surprise. I’m losing weight but eating like the wolf! Different aches and pains. Todays is a very painful left arm … is this normal? Yesterday my ribs hurt. Up to now these symptoms have been “for one day only” . Im still getting out and about and had a small birthday party on Monday … alcohol free for me but that’s a small price to pay.
I do hope it’s going well for you.
All the best… to you and to all.
Xxx
Hey @minty1 , glad the treatment is going well so far! I also have weird aches and pains that seem to last for a day and then go. I have had on/off pains in my left arm too (my breast cancer is on the left side) spoke to my breast care nurse about it and she said it’s likely nerve pains and wasn’t concerned. Not sure whether you have a port/picc line but if that’s in your left side just double check with your team ASAP/call the chemo number you have as they may want to check it. Hope you have a good weekend!
Hi - thanks for thinking about me! I’m finally all systems go with EC for Tuesday. Thank goodness. Much as I’m bit scared I just hate the delay. So I’ll be joining you soon.
Good idea for you to phone helpline before the weekend. I have found them really useful. Sounds like getting out and about is helping you.
Thank goodness I have a fellow EC support in you and others here who have been through it!
Hey everyone, just a quick update. Had my 4th paclitaxol yesterday and I had an allergic reaction! My throat swelled and I was coughing alot trying to catch my breath. Apparently it’s unusual on the 4th one (usually happens 1st or 2nd). They stopped the infusion and have said I won’t be able to have that drug again. They will switch me to an alternative instead. I have pleaded with them to let me have my infusion (of the new drug) next week so I don’t delay my treatment anymore, but the oncologist needs to decide. Another bump in this very bumpy road but I’m feeling so much better and actually fine (I think it’s because they pumped me full of more steroids to stop the allergic reaction). Having a family BBQ this weekend and meeting a friend I haven’t seen since before I was diagnosed so I’m looking forward to it Sending everyone positive vibes for the sunny weekend xx
Poor you Jess. It happened to me on 3rd and 4th week. I got switched by my oncologist to Abraxane and it never happened again. Abraxane is protein based so much better tolerated. And its shorter infusion time.
and you’ll help others like you already are doing, it’s a safety blanket wrapped round everyone where everyone will listen and help and share with kindness and compassion something beautiful comes out of something that try’s to harm bcn is here Shi (BCN Forum Community Champion)
EC nervous flyer here. First one done. Takes so much fear away. Managed to have minor reaction to the red one but well managed and they gave me antihistamine, a 30 minute break and we then finished the job.
Lots of tablets to keep nausea at bay as you all told me about. Bit wooly head so different to my weekly abraxane, carbo combo.
But day one is done and will see what this new experience brings me. A 3 week break feels good.
Hi Shi - here I am on day 3. Each one I wait for this new experience to kick in. Drinking fluid, bit off food but trying, resting. Nausea a bit just there in the background but not too bad at all. Will see what today brings!! Xxx
I start my Docetaxel tomorrow that will be 5/8 - so nervous!
I got very sick on my last 4/8 EC but tomorrow is the Docetaxel !!
How are you all?
Finally got my PICC line inserted today - after 4 cycles with cannula my veins got inflamed.
Strength to all
Remember - what doesn’t kill us makes us stronger!
I had my first Paclitaxel and Herceptin injection yesterday.
Been told in clinic twice that it can cause diarrhoea and take tablets at first instance rather than fourth in leaflets. On leaving clinic I was given anti sickness tablets only and queried where the anti diarrhoea tablets were. I firmly told they don’t given them for Paclitaxel. Roll on 7:30pm and it hit three times before 10:30, phoned the helpline after the first and they apologised I had not been given the tablets and have update electronic records. Husband had to make a trip out to buy Loperamide (generic Imodium) so took 3 tablets in total and no further problems.
Had a terrible nights sleep, tossing and turning, lots of trips to the loo for a wee, I suppose it was all the fluids I’d had! Mouth is tender, having some indigestion, odd feeling in big toes and lower back pain. The helpline are calling back today to check on me and will mention other symptoms.
Tried cold cap it was so painful for first 15 minutes but I preserved. The leaflet from Velindre had stated a starter kit would be given including a headband so I didn’t take anything with me. They stated they had some donated but no longer give anything out, would have Ben nice to know as Paxman website stated you get a headache if forehead not protected and I did, so asked for gauze which helped a bit. They did rush to put it on, so next time I may get mys husband to it it instead. They placed cold cap and cover on at the same time rather than separately as they have been trained to do.
Another issue is that i have to travel 70 mile round trip as it is and now they want me to possibly go to another hospital even further away, driving 20 miles past two other centres! My husband is still working on my treatment days and the extra travel is very problematic. We also have a dog and means the difference between having someone pop in at lunch to doggy daycare and having to drop him off before travelling for treatment. Not sure how they work out who goes where but I understand if you live in Cardiff you’d want to do there but why do those of us who have no treatment centre near are being sent even further. The Welsh Government policy is to send you to the nearest centre. Id already mentioned the issue in clinic.
Regarding the cold cap I was never told about a hair band but today was! I’ve been making sure I take two paracetamol before the cold cap and after treatment and that prevents any headache. However I’ll take a hair band next time (she said best like they wear in tennis). For your information I was told NOT to wash hair day after. Also, use non chemical shampoo such as Cantu - Faith in nature shampoo. Oh and another thing. With EC the cold cap is 90 mins after chemo but with Docetaxel it’s only 20 mins. Hope this helps you !
Ok so today with Docetaxel it seemed to go on forever (it’s an hour’s infusion). I was ok but impatient for it to finish as it was unpleasant especially with the cold cap. At the end I vomited twice! Once in the bathroom and once I asked for a bowl. Pretty upsetting and I had a little weep as it’s all a bit much right now. Mum has been diagnosed with dyslexia and marriage is hard.
I’m at home relaxing now and nausea has gone and I’ve just had some toast and a yoghurt.
Thanks for that. I had the cold cap with my first weekly Paclitaxel, like you the infusion is an hour with cold cap on 30 minutes before and 45 minutes after. I also had Herceptin injection and then had to wait 39 minutes before chemo pre meds. So for me I was in the day unit for 4 4 1/2 hours! Luckily the Herceptin is only 3 weekly so quicker next week.
I am already very careful with shampoo and conditioner as I have allergies. I used the scalp range by Percy and Reed, if I can’t get it I use the fragrance free Faith in Nature.
Sorry to hear about your reaction and your family issues. Please share as and when you need, we’re always here to listen.
So sorry you and @Beeza66 are having some rough times. I had to stop cold cap so I’m just bald but appreciate how upsetting and confusing it can be. And painful.
Hope things settle. My EC has left me feeling nausea but trying to rely on meds and eat little and more frequently. Not easy.
We are all strong and thank goodness we can rant here with women who are going through it too.
Hi @rachel60 . Great to hear that you are coping well with EC. I would also sit down, waiting for a symptom (one of the many I had read previously) to arrive. Thankfully most didn’t come. I finished radiotherapy today - it was a very emotional day. Seven months after diagnosis I completed my treatments in hospital - still have hormone therapy for many years.
. Im still getting out and about and had a small birthday party on Monday … alcohol free for me but that’s a small price to pay.
Sending everyone positive vibes for the sunny weekend xx
you do have lots of support rachel60 take it one treatment at a time 
