Anyone else here on weekly Paclitaxel and 3 weekly trstuzumab?

Hi Lizb6

I hope you’ve had an ok weekend after starting your treatments at the end of last week. I had 12 weekly sessions of Paclitaxel starting Feb 2020 and have just had my last Trastuzumab injection so I’m all done now. So sadly I can’t go through it with you but I know what you’re going through and very happy to help with any questions you have. 
Loffie x

Hi

I start on the 11th so will be a few weeks behind you but exactly the same treatment 12 x paclitaxel and 9 x Trastuzumab. Would love to link up with others to hear their journeys too. 

I have my picc line inserted on Monday and I'm going to try the cold cap.

How has it gone so far and we're there any things that suprised you? Good or bad

D

Hi Dannielle.  All a bit of a mystery trip really.  I hadn't expected the injection to come up like a big lump on my leg, which was really tender for a while.  Apparently it is like a gel that sits under the skin.   The big thing was just the unrelenting noise in the chemo suite, drip alarms all the time.  Noise cancelling headphones now purchased!!!!   Red face from steroids for a few days, and energy levels up and down like a yoyo.   Otherwise not too bad.   Be interesting to find out how you get on.   Really glad about the PICC line, mines been in for a week now and so much easier than being cannulated each time.   I was told that cold caps were not allowed at my hospital for Paclitaxel, so just waiting for the inevitable to happen now.   

Hi Lizb6,

I am on 12 weekly paclitaxel and 18 trastuzumab over 12 months.

My chemo day is Friday and I have done the first 4 sessions paclitaxel  (2 trastuzumab). I have a PICC line so both drugs are put in through that. So far, I have managed quite well - it’s not easy but not as bad as my terrified mind was expecting!

I’m usually very tired after treatment and head to bed early, then Saturday usually not too bad with Sunday and Monday being my worse days - but I can still potter about, make a sandwich, have a shower - but lots of rest too! I have to inject myself for 3 days after chemo to boost white blood cells and they make my legs ache! I’ve had some sore mouth / throat, odd nosebleed, upset tummy, skin break out after 2nd round and have now shaved my hair as it was starting to shed and was so itchy - relief to be honest! Energy is an issue as treatment progresses but I still work from home a couple of days a week and go for a walk on the good days.

Hope this helps and that your treatment is manageable too - would be great to share stories as support to get through this is a big help.

Take care, sending positive thoughts your way xx

Thank you Joesdog, that is really helpful.   Energy levels were definitely down on Saturday afternoon and Sunday, but then picked up.    So difficult figuring out what is in your head and what is real!!   Time will tell I guess,  Just really frustrated as they are going to switch my chemo days from Fridays to Wednesdays which means the potential tired days will be when I am working :(

Its really good to hear from those in a similar place, and as someone just about to start chemo its so reassuring to hear that you guys are managing and working which i hope to do too. In whatever that capacity may be. 

My headphones will absolutely be going in the handbag and i had no idea the jab was a gel. 

Ill let you know how i get on with the cold cap but i am fully prepared that i will probably lose my locks. Has anyone bought any head wear?

Im knitting like crazy!!!!!

I have bought a few ‘beanie’ style hats, easy to wear although a bit hot! Around the house I don’t tend to bother - have to remember to pull a hat on before answering the door, so as not to scare delivery drivers
I’ve also ordered a few wigs to try on at home - it’s difficult not being able to visit shops and try them on!

On the plus side, it’s very quick to get ready in the morning!!

So I am now 5 weeks down and 7 to go - almost half way.    Its been OK, but not what I had expected.   When people talk of fatigue, I expected that feeling of when you have done a long walk, or spent a hard day skiing.   What I didn't expect was the sheer mental grind as everything just slowed down and took 3 or 4 times as long.    I hadn't expected the inability to get on with mental tasks.   I hadn't expected the grind of minor irritations such as the sore nose (not nose bleeds, but bleeding nose!), the odd feeling of gastric reflux rather than nausea.   That said , I am grateful for the fact that I am still walking around 5 miles a day, but on some days it is la case of one foot in front of the other.   I think I am now well into a routine of Wednesday - chemo day, Saturday  - real low energy day, Monday - blood test and just taking it one day at a time

Lizb6

I totally agree with you there, having one of those days today. My nose is doing exactly the same i thought i was going crazy tbh. I have just had week 3, will be 4 on thursday. Still have my hair just starting to thin a little and my scalp is now quite sore for a few days after chemo but its hanging in there for now. 

I am interested to know if anyone is managing to work full time, or how they are managing the work/chemo balance i am currently working 4 longer days but i think its getting a little too much now.