Oh no @Kara so sorry to hear you ended up in hospital, but glad you are being looked after and infection/ side effects can be dealt with effectively. As you say, in some ways better than worrying over things on your own. And all credit to you for being able to see all the positives and acts of human kindness around you while you’re in the middle of a horrible situation. Wishing you all the very best and do let us know how you’re getting on on xxx
Sorry I tend to disappear when I’m struggling, just wanted to quickly say about the Suzzipads for the T cycles: there’s more information on Reddit r/breastcancer and hand / foot cooling seems to be more popular in some places than others. I was very very frightened of losing finger and toenails so I wanted to make the cooling as effective as possible. I got two sets of Suzzipads, already had a picnic cool bag and bought some ice packs for it. I freeze the packs and the pads overnight before each infusion then take XS size surgical gloves, woolly gloves, two pairs of thermal socks, pram mittens and polybalm to the infusion appointment. The aim is for hands and feet to be cool (google hilotherapy) not painfully cold so I put gloves and socks under the Suzzipads and also over - this insulation limits thawing but each set only lasts about half an hour or so, I found I could use fewer of their cold packs inside the gloves and socks and then keep changing them as needed. The cool bag with ice packs keeps them frozen though and I’m over an hour away from the hospital.
I also always wore black bottoms, took a change of clothes and wet wipes and wore the most absorbent type of Tena pants as I’ve seen a few ladies in their 30s without kids say that the paclitaxel immediately made them wet themselves (it didn’t me but I didn’t want to take chances), I’ve also only worn open toed sandals or the slippers that look like snow boots as apparently it’s the pressure from shoes that causes toenail damage. My nails got slightly darker but it’s about 70-80% grown out now. For fingernails UV is damaging so I’ve worn cotton gloves throughout when outdoors.
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@Kara really sorry you’re having such a horrible time, glad you’ve got the fever down and hope you’re better soon x
Still in hospital, was going to be discharged today but three bouts of diarrhoea this morning changed the doctor’s mind 
hardly any sleep last night as the nights get noisy on this unit. So with the triple squirtage (!) I confess I collapsed sobbing while a kind but shy male nurse awkwardly patted my shoulder.
I have told myself I can’t cry any more as I am nearly out of tissues until my other half brings thm later 
the loo roll here is so rough on my schnozzle.
So IV fluids today, stool sample, more sitting on hospital bed… at least the unit is reasonably quiet in the day. Though can’t really sleep much between all the routine checks.
Trying to recharge my sense of humour to get me through the idea of another night!!
At least the doctor made sense this morning. The one I saw yesterday looked at my rash and said very unlikely caused by Docetaxel. Which was the only new factor, and the rash appeared at the same time all the other side effects hit. I found it weird. He had the kind of smiling but vaguely patronising manner that some have…
Today’s oncologist I asked directly ‘waas the rash a reaction to Docetaxel ‘ and he said yes, which was the polar opposite of what his colleague said but seemed far more commonsense to me!
Oh well. Burnng pain in fingers isn’t quite so bad, the sensation is still sore and stiff but less overpowering. The rash(on hands) is in the drying out stage …
Gives me hope these things are temporary.
I did have slightly elevated CRP in bloods so there may have been a small infection body was fighting.
Just wrecked after hardly any sleep…..
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I’m so sorry this is happening! I hope you feel better and get to go home soon x
Hello @Kara - so sorry to read this. I also had multiple rashes whilst on docetaxol & received similar / mixed information as you have done. Really hope you feel better soon. X
I hate it when you get doctors tell you different things. What calibre of doctor did you have yesterday? Todays one sounds more experienced,/ sensible.
How miserable having to limit your tears, that’s not right.. wish I could bring you so e lovely Kleenex balsam tissues, they’re the best. Hope OH gets there soon.
Glad finger pain is easing a bit, good sign that such things are only temporary, and maybe you also might get a reduction in dose next time? Wishing you all the best, and hope you get home soon xx
Just had last EC today, so half way through treatments feels like a positive milestone!!!
On the negative side, I crashed out of the damn cold capping. I had another attack of shivering, faint, nauseous, blood pressure spiked, and I just asked them to turn it off.
Right or not, it’s the decision I’ve made, so now I have to believe it’s the right decision for me. I felt soo relieved when it came off, made the treatment so much easier and quicker, and I’ll deal with whatever happens with hair.
Next Docetaxel , worried obviously but not up to thinking about it just now.
Hope everyone else is ok, or as ok as possible.
How are you @Kara , have you escaped hospital yet?
How are you @zebramoon , you said you were struggling?
Sending positive thoughts to all xxx
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Congrats on your final EC!
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Congratulations on your last EC! Such a milestone! I’m a lot better thanks, my elderly cat sadly had to be out to sleep after a long illness. We’d already made the difficult decision but then he became agitated over night and I called the vet out as an emergency. On top of the upset it was also just as the steroids were wearing off so missing a night’s sleep left me feeling physically quite yucky and when my cousin came to help with the burial he’d just been referred for suspected aggressive soft tissue cancer (now thought to be a cyst but awaiting biopsy result). This was last week and I’m loads better now but poor dad had a horrible day of vomiting and I ended up calling an ambulance so we were in hospital all Sunday night and got home around 3pm Monday…. Dad felt better yesterday but feels dodgy again today so taking him to the GP his afternoon… yesterday my dressing change showed that my picc line is longer (hasn’t been measured carefully for ages but definitely 8cm longer that at insertion and that’s beyond the tolerance if 5cm!)… have appointment for the picc to be replaced next Tuesday so that I can receive my final EC on Friday 23rd. I am truly grateful to be feeling so miraculously well now and that dad’s illness didn’t correspond with me having a couple of days feeling yucky. Hope everyone else is managing as well as can be expected too xx
@nib32 sorry to hear about your hair, I couldn’t even face trying the cold cap on top of the long journey to the appointments and oddly my hair has just started to grow back during the EC cycles (apparently it’s of no medical significance either way) so hopefully yours will be back in a few short weeks / months. I went from shiny pink bald to GI Jane stubble then 5mm growth really suddenly and suddenly have eyelashes! Brows are a bit of a weird 5 o’clock shadow but I assume it’ll sort itself out eventually.
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Congratulations on the final EC. I too had my final one on Tuesday. I gave up the cold cap during my second session as it made me so poorly. I have recovered much quicker from this treatment and wonder if it is down to not having the cap.
My hair was shedding a lot so I shaved my head before Christmas. It’s actually grown back a lot but Im expecting it go again now I’ve had the third EC. Im half way through treatment, I move onto Paclitaxel on the 3rd Feb for 9 weeks, the end is in sight now. Good luck with your next step x
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Congratulations on finishing your EC, I found the other cycles a lot easier so hopefully you will too. Roll on ending! Xx
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hi @zebramoon Sounds like there’s been a lot going on for you lately . So sorry to hear about your cat, home will feel so empty without him. But I know in time you will have lovely memories . Glad you’re feeling a bit better now , and managing to be there for your dad too. Sods law that you need to get PICC line replaced with only one infusion to go. Hope that is reasonably straightforward, and amazing that you’re nearly there at the chemo finish line!!.
Hi @cornwall1234 Congrats to you too!! Yes I think we are certainly not the only ones who don’t make it through the cold capping. My new regime starts on 3rd Feb too , I’m on Docetaxel 3x 3 weekly. Yes , thanks for reminding me that the end is in sight!!!
Last few days have been really tough here , side effects of my 3rd EC ,combined with first of the Zolendronic acid ( bisphosphonates) , so very much worse than last 2. I’ve barely left my bed!! But I think finally starting to improve a bit now though…
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Hey Kara . I’m across the world from you reading about your story. My heart aches for you but I know in my heart you will be fine . Your spirit is strong .’you have been through a lot! Praying for you and everyone I’ve read about ! I care❤️
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Hi, hope you’re all doing ok?
Can I ask about hairloss? I cold capped for the first EC, shed lots and took the cap off during second EC due to being unwell with it. Due to the shedding I shaved my head (grade 1) on Christmas Eve. I then had a delay of a week and had my final EC last Tuesday so there was 4 weeks between treatments and I have some growth. I am now due to start weekly paclitaxel for 9 weeks on the 3rd Feb.
In your experiences, am I likely to lose what has grown back? This is what I’m currently working with……
Difficult to say but I’ve read about people losing all their hair with the EC cycles and then it growing back with the taxane cycles so could go either way. Most of mine fell out during the taxane cycles then EC got the rest and I was shiny bald but after the second EC it started growing back and third EC didn’t seem to affect it - apparently the body can adapt!
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Thanks, I’m quite worried about the picc as the DVT sounds quite extensive so I’m not sure if they can remove the existing line safely or use that arm again for a new one… but using the other side isn’t ideal in terms of having lymph nodes removed. I really don’t want to revive treatment via a cannula knowing I’ve had problems with extravasation of the MRI contrast but not sure under what circumstances they’d put the picc in my neck. Theoretically it’s only for a few days or if they’re willing to be flexible they could insert the line, give the treatment and then remove it. I’ve just been trying not to think about it too much and praying that they have a plan and haven’t forgotten the DVT. Thanks for the kind words about losing my cat, one of the others seems to have a sore foot so I probably need to take him to the vets tomorrow.
How are you doing now? Sounded like you were having a hard time, hope things are going better x
Oh, I didn’t know about the DVT, added complication.. But I’m sure they have a plan, as you say do try ( easier said that done obviously) not to think about it, and trust they have dealt with situations like this before. Wishing you all the best for Tuesday and for Friday!!!
I’m ok, feeling a wee bit better, and trying not to think about what comes with next one!
As @zebramoon says , it’s so hard to say, and everyone is different. Given that’s it’s been growing back well though, that’s a good sign that if it does fall out, it will come back. I can’t compare as haven’t shaved yet. Mine was cut to pixie before treatment, and around back and sides it’s grown, but I have a n increasing bald patch on top which is horrid. Before and now pics:
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