Hi Daisy

That's great news that your scan was positive! that must feel good. I was in oncology on Tuesday with a lady who had just had her last EC and I was able to assure her that weekly paclitaxel is way more bearable. She has been suffering badly with nausea. 

So yes well remembered, I had phesgo and paxlitaxel on Tuesday and it's no different than just having the chemo. I have been suffering from very gurgly guts and a sudden need to use the loo, but imodium sorts me out. I'm resigned to the fact it will be like this until treatment finishes and I can handle that. I've used cold gloves and slippers each treatment and so far so good with no issues for hands or feet. I've 9 left to go now. 

My iron was low last Tuesday and my neutrophils were barely above 1, so it's true that it knocks your levels. Hoping that I'm still OK for Tuesday.  

Good luck for when you have your final EC and let me know how you get on and qhen you start paclitaxel.Xx

Hi, I was diagnosed with triple positive her2 breast cancer in July 2020 age 27 after finding a lump in my breast. Like yourself I had a young daughter to take care of and didn't know what to expect at all. I don't think any cancer diagnosis is easy to accept even now I look back and find it hard to accept what I had been through. Everyone's cancer journey is different, everyone's treatment plan is different and everyone's side effects can be different so there's no real advice one can give other than your given a battle which you will fight ! I remember coming into this chat group just like you and not even knowing what to ask or what to write it was a cry for help because I felt helpless and scared. Chemo isn't nice no but it's doable and there are so many treatments for breast cancer now hold onto that. If you would like to talk more don't hesitate to message me

Hi Vicki,

I was just wondering by how you're getting on? You must be down to the final 4/5 rounds of weekly now? So nearly there!

I'll be in next week (hopefully) for my first round of weekly taxol and Herceptin and Perjeta. Apparently I've got to have infusions while I'm having the chemo which is a shame as it'll take longer.

The last round of EC really wiped me out and I've had so many niggly issues since then - very sore teeth, overactive bladder and now a stye on my inner eyelid! Really pleased to have them all behind me now.

How are you coping with the weekly Taxol, is the tiredness building now or are you still ok? I can't wait until I only have a handful left and I know it'll come round soon enough.

Hope you're doing ok xx

Hi Daisy

I've been thinking of you on and off and wondered if you'd started weekly stuff. 

Well done for getting through EC!! that's a big deal. Did you have an MRI scan after you finished? 

So I would have been due number 8 on Tuesday, but I've been delayed for two weeks running due to my neutrophils being on the floor so I've still only had 5. Had 3 phesgos though as well. 

I'm currently injecting myself with filgrastim on a daily basis to boost my levels. Its all been way better than EC. I got really fatigued one week, but that's because I just did too much. Travelled to Manchester and back from London, in a day, just for lunch with friends, then was in Central London and back next day, then dentist then kids party. I was on the floor. So have had to stop doing as many things for now. Dodgy guts and immediate need for the loo are my only real issues but nothing imodium can't fix!

I cannot recommend ice gloves and slippers enough. I've not had any issues with fingers or toes but know a few who have had issues. Try it if you can. It's only an hour whilst your taxol drips through. It's freezing, but gets better after 20 minutes. 

Xx

Hey Vicki,

Sorry to hear that your last couple of treatments have been delayed. Will keep everything crossed that you get the go ahead tomorrow (think it's Tuesday that you usually have your treatments).

I'm due to have my bloods done tomorrow for treatment on Wednesday but have already been warned that I might not get the go ahead. I've had so many little niggles since the 4th EC, the latest of which looks like an eye infection! I'm hoping that the eye drops clear it up in time but the nurse didn't sound overly hopeful today.

Is it just the Phesgo giving you tummy troubles or the taxol too? If that's the worst side effect that I guess it's not too bad?!

Will let you know how I get on if I get there on Wednesday. For some reason I have to have Herceptin and Perjeta as infusions so will be there for hours - 6 apparently! Hoping that's just for the first one.

Anyway, fingers crossed for you this week xx

Hi Daisy

Sorry for delayed reply. I've not had a minute and yes, yesterday I was at the hospital and yes I had treatment. Can officially say I'm half way through paclitaxel now. Hurray! The filgrastim shots had moved my wbc to 10.66 and my neutrophils from 0.87 to 7.44!! Amazing stuff. 

Did you have your bloods taken yesterday? Are you OK for treatment today? I'm so sorry you've had so many issues and an eye infection also. Poor you. Hope all gets easier with taxol.

Ive had tummy trouble with phesgo and taxol and also with filgrastim so I never escaped it even with a two week taxol break! I'm so used to it though. I just take imodium and if I know I'll be out and about I'll take it as a prevention so it slows my guts down. Works well doing it like that. 

Do let me know how you get on today. Sending positive sunny vibes to you xxx

Hi Vicki,

Hope you're having a lovely weekend. Congrats on being half way through Taxol! All being well in just over a month you'll be done, how good does that sound!

My first round went ahead on Wednesday thankfully. They seemed happy that my eye had cleared up enough and my bloods were surprisingly good - must be all the nuts that I've been eating!

I've had terrible tummy trouble over the last few days but hopefully will know what to do with the second round on Friday, all being well. I've also been really achy in my lower back and pelvis but am hoping that'll clear and won't happen each round. No idea whether that was from the Taxol or the Herceptin/Perjeta?! Anyway, good to have the first one ticked off.

I didn't have an MRI before I started Taxol but have an ultrasound after the fourth round so will keep everything crossed that it shows some more shrinkage. I'm trying hard to take one day at a time but it's so hard!

Anyway, keep me posted on how you get on this week. Guessing it might be a Phesgo week so hope you get on ok.

Take care xx

Hi Daisy

Glad your treatment went ahead and sorry you've had aches pains and tummy troubles. Aches and pains are something I've read you can get with paclitaxel I think. But at least you've got number 1 under your belt! 

I had an appointment with my consultant on Saturday and am now booked in for my MRI/mammogram and ultrasound for the post chemo check. Will be v interested to see what the effects of paclitaxel have been. Then hopefully I'll know what surgery they plan before I go on my hols for 10 days. 

Back in tomorrow for treatment and yes a phesgo injection. The double whammy. God help my loo.. !! 

Good luck for your next treatment and speak soon! Xx

Hi Vicki,

Good to hear from you! You're so nearly through your treatment, not long to go at all, brilliant.

I had my 3rd treatment today so my feeling a touch tired but that's probably because I walked to watch my son play cricket this evening! On the whole, Taxol is just so much easier than the dreaded EC. Are you finding that it's getting tougher now you're three quarters of the way through?

I had an appointment with my oncologist this week and he seemed doubtful that I'd make it to 12, thinking I'd be more likely to have to stop at 9. I'm not icing hands or feet so I think he's thinking about the neuropathy. I really want to go to 12 though to give me the best chance of a cpr as I can't face up to a year of Kadcyla after surgery!

Have you had your scans yet? The oncologist estimated shrinkage of 60% so I still have some way to go

Anyway, thanks for the message and enjoy the lovely weather this weekend xx