Struggling through Chemo

Rona

Good news Katie, I felt less weird too but slept all the way home and during the infusion 😂.
GorgyS, you sound like you’re doing great on the AC. My Oncologist told me the opposite…… as in the side effects get easier, so far for me, this is true. 

Coastiejas, that AC is not fun! From the bad taste, nausea (24/7), cravings, peeling hands and feet, no energy and all round yukniss! 

For me the Paclitaxel has been very kind and I’m having double dose fortnightly infusions (5 hours). I almost feel normal! 

Let us know how you go and try not to worry. 

I’m off for my second infusion tomorrow and I’m not worried one bit, I’m actually looking forward to having a good sleep with the antihistamines they give me 😂.

Coastiejas

Thanks @Rona!
I had good news from my lymphoedema lady today..... best reading yet after a week of compression bra, sleeve and glove (I've had an auxiliary clearance with 12 nodes removed). The take home is persist with the compression garments even if they are uncomfortable and hot in this weather! 

Rona

Good morning girls 😊. I was supposed to have my second Paclitaxel infusion yesterday. After driving and hour and a half to get there, I was told I needed another blood test as my liver count was not good. After waiting 2 hours and all hooked up ready to go I was told they couldn’t go ahead (devastated). Also the lady beside had a reaction to Paclitaxel 😩, it was her second infusion. The nurses responded quickly and gave her an immune suppressant and the doc was called. I overheard the whole conversation and apparently the 2nd infusion is when you are likely to get the reaction 😳. After 30 minutes they restarted her chemo and she was fine. Also this lady (like me) is having dense dose infusions. I don’t want to scare anyone (I’m in the same boat) just be reassured every thing went ok. If this happens to me, I actually will feel better knowing how quickly it was got under control. Her reactions were pain in her back….. nothing else. 

I have a weeks reprieve now so it’s into the veggie patch to weed today 😊
Hope you are all doing ok. 

Katie46

Oh no Rona! Hopefully you'll get going again next week. I feel so lucky to only be a 20 minute drive from the Alan Walker Centre in Darwin. So far I'm ok on my first dose of paclitaxel, I feel much better than on the AC. I had hot almost burning palms in the middle of the night which subsided quickly once I started wiggling my fingers. Other than that not much to report, I even went out for a walk this morning. The nurse mentioned to me that I might get a reaction on my 2nd dose, and that they would keep a close eye on me, and they can deal with it quickly and carry on at a lower rate. They sat me close to the Nurses Station for the first dose, and my nurse pretty much stayed beside me for the first 15 minutes or so, and to let them know immediately if I felt anything unusual at all. Enjoy the veggie patch! 

Coastiejas

Hi Ladies
@Rona that is disappointing.... I had some of my AC treatments delayed a week so I know how it feels... but it's for the greater good!
I have my first paclitaxel tomorrow so fingers crossed 🤞 

Rona

Hey Coastiejas, yes disappointing. I have to have a scan of my liver tomorrow to see what’s going on and another blood test Saturday. 

Good luck for tomorrow, not that you need it. I have been feeling great on Paclitaxel……. Could have done with a break from the AC!!
Are you having weekly infusions? I seem to be the only one on a dense dose (fortnightly infusions). 

Let us know how you go. 

I wanted to let you all know that I started a probiotic, doc said it was fine, and it had helped me so much with the taste in my mouth and my overall gut health, just in case you have these symptoms and need help with them 😊. 

Coastiejas

Hi @Rona
Good luck with your scan tomorrow.
I'm having weekly infusions. I had dense dose AC though!
Thanks for the tip on the probiotics..... I know what you mean about the mouth taste....mine goes from salty to just weird... incidentally I  bought some probiotic yoghurt today so will see how it goes!!

Coastiejas

Hi Ladies 
I've had my first paclitaxel today.  So far so good other than a bit drowsy from the antihistamines which always happens to me anyway.... but generally OK.

Rona

That’s grea news Coastiejas! I felt the same way with the antihistamines but otherwise pretty good. Slight set back with the injection (more pain than usual), otherwise yes, so much easier than AC. 

I’m just waiting to have my liver scanned 😩. Hopefully all good and I can continue my treatment. 

Katie46

Great to hear you are feeling ok @Coastiejas, and good luck with your scan @Rona. I'm still feeling much better than on the AC, a few mild muscle aches, but I can take panadol for that if I want to. My sense of taste is the same as on AC, diminished a bit, but still hanging on in there. No metalic taste or anything like that yet.

Katie46

2nd round paclitaxel done, no reactions during treatment 🥳 still finding this easier, mild muscle aches which panadol sorted, more noticeable at night, the usual insomnia which improved as the week went on and some hot flushes 🥵 all manageable. I have more energy, and much less fatigue, only one tired day, but only a bit tired, not the severe fatigue like AC, I could still potter about and do things. Long may it last.

Rona

Hey Katie, that is great news! I too have had more aches with the Paclitaxel but still prefer it way over AC! I’m still working full time but have to say the fatigue is far greater but I am having a dense dose. 

My liver scan was all normal so have my second infusion today. Im still a bit scared after the lady beside me having a reaction. I’m having a lower dose today as my liver function bloods are still not right (probably because I haven’t had a drink in 3 months 😂).
It’s really great to read you are coping well. I hope other ladies read our thread and get hope after AC treatments, it’s just so much easier.
Hopefully I can report in after today with good news too. 

Katie46

Good luck today Rona, the nurse assured me if I had a reaction they'd be on to it quickly, and generally resume the treatment at a lower speed if they can. I'm going to go back to work for a few days a week while I'm feeling ok. I can work from home, but would quite like to go into the office, I'm only a 5 minute drive so no public transport needed, my husband can drop me in. Too hot to walk at the moment. Do you just wear a mask? I'm concerned about covid more than anything else, there is only 3 of us there most days so I think the risk is minimal. 

Rona

That’s great you are feeling up to work Katie, it’s great to get some sort of normality back.
I work in aged care so masks are still mandatory where I am, I have to rat every 3 days too.
Just look after yourself and do what feels right.
I work with about 200 people, we have Residents with Covid atm and I haven’t so much as sneezed.
I train people for infection control and washing/sanitising your hands often is the key 😊.
Ive just walked a flight of stairs to get to my treatment (after an hour and a half of driving 😩) and it really took it out of me, I have very little energy compared to AC but it beats the nausea!

Katie46

It's so strange how differently chemo affects people, I have more energy than AC, but maybe that's because of the lower dose.