@donna_51 I’m thinking the same - I can’t take the risk that something may be left behind. I felt like the research person was trying to hard sell it to me but I just can’t take the risk. Good luck today - I’m due to start pax next week aswell after finishing EC last week so would be great to hear how you find it. Hope it all goes well xx
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Regarding crafts, has anyone tried felting? I was given a kit to make a felt cat at Christmas . I think the stabby action might be quite therapeutic… 
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@kaydee82 Hi there. I have had a go at needlefelting and found it quite fun! It is quite high risk in that it is very easy to stab yourself with the incredibly sharp needle, 
but it is also good for relieving tension and annoyances!! 
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@wjs My experience of paclitaxel too re hair and scalp cooling. Keep the faith - you might end with an inch or two of new growth 
Anyone who did scalpcooling for AC/EC x 4? DId the shedding start again after #3 and what should I expect. I had what I have left cut at the weekend and it looks like I have age related hair loss so I can still get away with a non cancer look for now. Thoughts? You were all spot on re what to expect this time around. Thank you 
Eyebrows - my experience and also what I have heard from friends and nurses… they thin during the first three months and then tend to disappear as they are on different growth cycles. On AC they are growing back but I imagine they will go again before the end. Same for my eyelashes. I have lots of bumps (slightly inflamed hair follicles
x
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@jbb I am in my third week after EC and have had barely any shedding since 2 weeks after the second EC treatment. 17/18days tomorrow which was when it started shedding after the first one 
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Hey All
Sorry I’ve been quiet for a few days as have been dreading 15/16 and really fed up with cancer dominating my life so needed to switch off for a couple of days. Just catching up on all your lovely posts and the crafting 
to all the Olympian crafters we have in our team 
@alig1961 so sorry to hear you’re having such a 
time. Sending a massive hug over to you 
and hoping the days are getting better for you
For me last week on about day 10 the fog cleared and felt almost normal. Carb cravings eased up a bit but have done their damage - I’ll just have to lose any gain post AC and pre op. We have to be kind to ourselves and that means doing what we have to get through this.
Hope those going on to paclitaxel notice a huge reduction in nausea/tummy issues and energy. Can’t believe I am saying this but it seems a much kinder drug, more female and understanding of its impact . AC/EC seems more male - sledge hammer to crack a nut and takes no hostages. Suck it up 
15/16 done today so I’ll head back into my little cave. There’s light at the end of the cave… so close. Also worried the cave might be full of cake, crumpets and chips.
And I am so done with this heatwave - enough already. Even the cave is hot 
Sending good vibes to everyone this week. We’re getting there 
x
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Indeed let’s see what this week brings. I think I am on day 29 of the whole course. My scalp hurt so much from day 21 to day 26 when I washed it and the pain started to ease up as though all the dead hair had gone for now
Hi everyone. Just a quick message before I go to bed. I just want to say a massive thank you to all of you. This forum is amazing. The lovely comments you’ve sent to me when you recognised that I’d gone quiet and was struggling was truly awesome. You are truly inspirational ladies. Im pleased to say that I feel like I’m getting to the other side of this cycle now and I’m hoping for some sleep tonight. 4 hours of sleep in 48 hours is cruel. I think I’ve had every side effect going this time.
Thank you for sharing your laughs, crafts, encouragement and kindness.
@donna_51 i hope today went well. I have my fingers crossed that side effects are minimal. Love the tmi post!!
Sleep well everyone.
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@alig1961 really pleased that you are emerging from the yukkiness of the last week or so. Onwards and upwards!!! 
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@alig1961 welcome back …. Fingers crossed you had a good nights sleep although as @jbb says it is hot hot hot in them there caves! Take care as you come through last round of treatment… slowly does it.
Good luck @donna_51 hope the after affects are kind after yesterday.
@pat loved “mole” super cute although the stabbing worries me 
- I count down how many needles I have over the course of treatment 
@jbb welcome back after the fog - hope the cave brings some solace after 15/16 - nearly there!
Take care all.
@pat … loved your felting, so cute and looking forward to Booby @collywobbles !!!
I had my first pax yesterday… I wasn’t brave and cried all the way there and for the first hour but apart from it being loooongggg (3 hours for the actual chemo + pre and post gubbins, argghh) … so far it seems ok. I dozed off whilst there and had strange, almost psychedelic, dreams, bloody steriods I think!
I felt a bit sick when it finished but that might be to do with the flush part in my picc line as that tastes awful and I now associate the hospital with feeling sick… I went home and slept for 3 hours as I felt rough but then woke up feeling ok. I couldn’t sleep last night due to horrible restless legs (damn steroids again maybe?) but woke up this morning and feel remarkable okayish. I feel like I can get up and move around a bit, unlike on EC when my head was on the pillow with my laptop on it’s side so I could watch Netflix. I don’t feel nausea at all so far and am hungry, again, unlike on EC when I had to force myself to eat stuf for 2/3 days. I am waiting for something more to happen as they did say yesterday that a reaction could come later… fingers crossed it continues being ok. However, I am not going to get out of bed as I can hear my family downstairs talking about stuff to do so I’m staying well out of it for a few days!!!
I have some polypalm here as I know pax can affect your fingernails - anyone used this? How many times a day?
I love your description @jbb it does feel more female… AC was a male smashing us to bits. And I like the idea of a cave filled with carbs and cakes, almost as much as that posh hotel in the mountains!!! Keep going girl… you’re so near.
Hope everyone else doing ok this week… it’s getting cooler and soon it will be Autumn and it will be cold and hat wearing weather… bah summer humbug! xx
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I think we may be Team Summer Grinch and I love it! Who needs summer when you can have crunchy leaf walks and wooly hats (and wigs that don’t stick to our faces). Thank you all for your words of encouragement
@donna_51 the nausea is far less on Pax. It’s the steroids that make you feel like a Duracell bunny, but they do keep the nausea at bay too. When they cut mine in half after for round 3 (I was on weekly) I actually managed to sleep and I had maybe half a day of feeling a bit sick and out of sorts and that was about day 3 or 4. Careful not to over do it because you’re not used to feeling almost normal again. Your body still needs to recover. Also if you’re on biweekly you will be on double dose so it might be different.
Also I had no cravings on Pax but I went off anything connected with chemo. It’s been even worse on AC. My latest aversion is grapes and cheese cos that’s a chemo suite snack.
Good news - just had the nurse round to do my my last filgrastim - feel like 
Sure that has made the nausea worse plus awful bone ache. Neutrophils at 9 so must have worked! Been told I don’t need it on 16/16 woohoo. I know I’m not the only one here who hates it.
@alig1961 good to see you back. Keep looking after yourself and sending you more x
Onwards and upwards team 
xxx
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@donna_51 I have used polybalm throughout the five months. I bought four pumps and still going strong.
I also use the Jenny Flowers nail balm at night. I use the polybalm morning and night but there have been occasions where I forgot either the morning or night. I run any surplus into my feet and hands.
My nails are the strongest they have ever been and are growing well. Not sure if that’s due to the concoction or I could have used a nail oil and had the same result
As for neuropathy I have no idea. I have hands that have been abused by years of blackberry and mobile use and emails and were already feeling stiff. I did get very itchy soles of my feet towards the end of treatment which did impact how long I could walk for but I was trying to average about 8k steps per day.
x
Thanks @jbb … I have sort of overdone it today as I felt so positive about feeling ‘better’ … need to get on the sofa with Netflix for the arvo!
Yay to no more injections… I hate them and get my hubby to do them for me, ughhh.
So next week is your last one? Are you then done!!! xx
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@donna_51 next one (16/16) is week after the bank holiday.
Then a break before lumpectomy. Mine was neo adjuvant. Scans week of the 9th Sept to see if AC has done any damage to the tumour and the MRI ready for surgery. Pax got rid of most of it and destroyed the cancer in the internal mammary nodes. I think why I feel positive about pax. And was also kind to my hair.
Completely understood your tears swapping over treatments. I cried when I got to the chemo chair for AC before found I had a blocked port and needed an X-ray to be able to use it. Had to have a minor op the following week to clear it. Was in the top 10 of low days since this all kicked off in March. I think it’s the unknown and also here we go again when you just want it over.
There’s a lot more pre meds with Pax too. However for us on cold capping it’s longer on AC so I didn’t think about how it would impact those not on it.
Wondering what will make it to my top ten worse days over the next few months. Might have to increase it to 20
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Hi everyone … missed a few good posts again … but really interesting (and pleased) to read that most (If not all) your experiences with paclitaxel has been positive … mine was the opposite!! 
So now I am absolutely dreading starting EC after reading the side effects some of you have experienced 
But going with the mantra we all react different so desperately try to keep a positive mindset!!
All you crafty gals … fabulous 
I have zero patience for anything like that but definitely admire those that do!!
Had some positive news today … finally 
… tumour has shrunk back to it’s original size so a 19mm reduction, the lymph node in breast and lung nodule also reduced slightly … although they still can’t tell me exactly what it is in my lung but I will take those positives 
So all systems go for next treatment on Wednesday… EC and Immunotherapy for two rounds then another scan … but definitely feel happier today 
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@charlie22 this is positive news. And yes we are all different. You will now sail through EC and wonder what we were on about (today Day 2 I am actually feeling Ok but I guess it won’t last).
I think I got on OK with Pax because I felt it was doing some good (shrunk the main tumour and appears to have killed off the lung (internal mammary nodes) plus the one breast node they found on petscan but didn’t show up on any other scans). My surgeon said highly likely that they were all the same type of cancer so if the chemo worked on the tumour was likely to have had the same effect on the nodes) I was also told they never biopsy the lung nodes as too dangerous and expect them to be “zapped” (my term) by chemo or radiotherapy. Not sure if this helps as my personal experience but the taxols seem to be quite good at shrinking tumours even ER+ve which are quite resistant.
You’re getting so close to the end x
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Thanks @jbb that is reassuring … so we sound like we have similar issues … tumour in breast etc.
One thing I’m really confused by and can’t seem to get a straight answer from my BC nurse is I was under the impression if they found something in your lung or lymph node (in my case shown up after my intial diagnosis) this wasn’t good and good be an indicator that the cancer has metastasised… which from my understanding is not good at all! So how will they know if all they do is scans? I really don’t understand … Google as we all know is just the voice of doom so avoiding that now for answers!
I know I have to trust the process and obviously the professionals but I can’t help but wonder about this!!
Took me a while to catch up, but I must say that the posts since I last posted have given me some laughter-thanks ladies!
Glad most of you seem to have positive updates!
@donna_51 i feel like I’m already working myself up for next Tuesday and starting on P, so wouldn’t be surprised if I too cry myself there. Pleased to hear you’ve survived better so far!
@charlie22 my experience on fortnightly EC hasn’t been as bad as others, so I hope you do ok on it. I’ve had to give myself one injection after each treatment and it’s been that which seems to have caused the worst side effects for me-aches and painful skin. Yes I’ve been tired, but I’ve been working and able to join in with life at home with a toddler most of the time.
I keep thinking that it’ll be sods law I’ve done ok on EC and so I’ll suffer on weekly P…but having read what you’ve all said does give me hope!
Stay strong and keep up the excellent banter, such a fab group to be a part of! X
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