@emammi welcome! I’m cold capping - have done 3 sessions up to now. I take paracetamol and ibuprofen beforehand as I do find it incredibly cold for first 15 minutes. I have mittens with warm packs in which I put on my cheeks for those 15 minutes and I also sip hot ribena. I wear compression socks to protect my feet. Currently I’ve had minor shedding. Have had 3 sessions of EC xx
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@hc1973 delighted you’ve completed your EC and are home. Go easy on yourself and take it easy. the 1st week of those fuzzy headaches are a nuisance, happy shopping x
@swk1981 hope you’re feeling better and things are starting to level out.Hope you get a good nights sleep and rest xxx
I had my radiotherapy planning today. It was at our regional cancer centre and they are amazing. I think I got more information in the few hours than what I’ve had in 6 months.
Hopefully I’ll be startlingly radiotherapy around the 1st week in July as long as my last chemo goes ok. I’ll be getting a one-week course of radiotherapy in fewer but larger daily doses as they said this was found ( new research) to be as safe and effective as standard three-week dose. I’ll then get 4 days of booster to the tumour sight as I had SLE surgery and this is what they call belts and braces.
I’m back on Monday for an MRI and 3 small tattoos for markers for radiotherapy. I thought I’d share this for anyone who has to have radiotherapy , the oncologist said yes you could be extremely fatigued and maybe some discomfort around the boob but it’s nothing compared to chemotherapy.
I hope everyone is keeping well and side effects are under control or at least bare able.
Sorry if I’ve missed anyone and for the horrendous spelling mistakes, brian is a bit mush tonight 
pauline
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@hc1973 fab news EC done 
a step nearer the end. Hope you sleep a bit and have minimal side effects. Laura xx
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@pollyanna1 god you made me chuckle writing that your ‘Brian’ is mush 
Neutrophils have bounced a little bit platelets low and my liver is having a hissy fit with my Alkaline Phosphatase over 100 and my Bilirubin above normal. Probably caused by the antibiotics.
I’ve had luminous green diarrhoea all day but decided to just eat my way through it and have some energy.
They let Matt come tonight and I made him get Nando’s so I had plain rice and grilled chicken which is what we give dogs for diarrhoea so I figured I’d try it and get some protein in me. If I’m having diarrhoea then I may as well have some food as 4 days is so long without anything.
Have another recommendation for anyone with diarrhoea too. Clinell Contiplan wipes. They are antibacterial and cream based. Toileting 20 times a day gets quite painful but they gave me some and my bottom doesn’t hurt at all now. They’re £4 for 25 wipes and I just use one at the end and it puts the moisture back and disinfects and soothes me. It’s been a lifesaver for diarrhoea.
@elle16 Matt has done amazingly given I left him with my Dad visiting and a horse with a hoof abcess (he’s not horsey!). My friend has stepped in and is helping my girls with the horses and bandaging Fred’s hoof and the farrier round the corner has saved the day popping by to check on him. Bullied my son into doing Chemistry GCSE revision over the phone today and he’s doing well at self motivating for the first time in his life. All three kids walked to a golf course this evening and stole some balls from the driving range course and went into one of our fields and my son taught the girls how to hit golf balls and he proudly told me that they only used one ball each and retrieved it so that we don’t end up with golf balls in our hay! Probably the most sensible thing Ollie has ever done in his whole life. Maybe there is hope for him after all. They never hang out as a three so it sounds like they’re needing each other a bit.
Was hoping to be home to do a sweepstake for the Epsom Derby but it’s not looking likely and they’re talking about me getting home after the weekend.
Still super sore with joint pain and it’s not helped by being bedridden for 4 days now.
Oh and to add insult to injury, my hair had regrown on EC and was 1cm long. It’s falling out all over again now and doing that splinters in your head thing. They weighed me today and I’ve lost 5.5kg since chemo a week ago so my kids are going to be shocked at tiny Mummy with a shiny head by the time I get out of here.
My Oncology Lead from my hospital rang me to see how I was today and she said she wonders if this was coming anyway since my bloods didn’t bounce as hard last time. They’ll reduce my dosage for the next one which kills me as I wanted belts and braces but I can’t risk this happening again. Although I’ve lost 10% of my body weight so actually the dosage correction may not actually be that significant and, as my husband said, overdose isn’t good so let’s just look at it that the original dose was too high rather than the lower dose is too low. Smarty pants.
My husband has booked one of the contract cleaners we use at work to come and deep clean our house tomorrow. I didn’t want to point out that by the time I get home, the kids will have killed it
It was nice to be able to see Matt and he commented that it took neutropenic sepsis for us to be able to have a date night with Nando’s and for the kids to leave us be.
@hc1973 so chuffed today went well and how challenging it must be to manage insulin and all this!!!
@belle1 did your bloods come back over 1 in the end?
Here’s to a good night for everyone! Anyone with sore mouth, ask them for the GELCLAIR as it’s been the greatest gift. That and my husband bringing me 8 bottles of frozen water. The greatest gift anyone could bring as I think I’m a bit weird and won’t drink tap water (we have a bore hole at home and hospital tap water smells funny!).
Sleep well everyone x
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Congratulations on that EC milestone @hc1973 , hope you get to enjoy the time in between before starting your next block 
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Sounds like things are picking up☺️ I never got a call so I’m taking no new as good news and turning up this morning. Hoping it’ll go ahead as this is my last EC too and just want the first half over with!
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Good luck today @belle1! I hope it goes well. Such a great milestone to get over and done with! X
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Fabulous message @swk1981 , glad you are starting to feel a bit better and sounds like your family have done you proud whilst your not there, congratulations on the Nando’s date hope it did the trick like it goes with the dogs 
hope you have a speedy recovery from now x
I’ve actually lost 3lb since Friday without the dreaded diarrhoea, I just can’t snack like I normally do, I felt lots better yesterday but feel crap again today, my face and head hurts like pressure and my feet, fingers and back are sore, I’m really hoping to feel better after the weekend 
I’m still better than I was though so I’m not overly concerned,
@belle1 good luck today and congratulations on this next mile stone x
@pollyanna1 thanks got all the information regarding radiotherapy , how long after chemo finishes does radio start? Xx
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I’m feeling like you, appetite not great and im day 10. I’m still taking anti sickness although vomiting & diarrhoea has stopped still feel nauseous, I can live with that.
I was speaking to an amazing nurse specialist yesterday at our regional cancer centre and she told me to stay on anti sickness until chemo is finished. I’ve 1 to go. She also said when 1 stops working let them know and they’ll change it. She also told me it’s common with doxorubicin to have sickness as time goes on. I know it’s not ideal but at least I know it’s normal.
Radiotherapy starts 3 weeks after chemo finishes as they like to give your body this time to repair.
Anyone needing radiotherapy will go for their planning appointment just before last chemotherapy.
When is your chemo due to finish?
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there has been lots of us over the years had a reduced dosage of chemo after getting floor and having a casa nhs stay as you are just wanted to let you know 
Shi xx
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Thank you! This is so useful. Such a minefield trying to prepare. Well done for completing 3 sessions with the cold cap and good luck with the rest xx
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@pollyanna1 i haven’t took any anti sickness with Docetaxel, I don’t really feel sick just generally unwell, my last chemo should be 4th July , they did say officially finished 26th so that makes sense with the three weeks you mentioned,
Welcome @emammi good luck with your first treatment snd cold capping
Firstly welcome,
I’ve just hit my half way point yesterday, Ive done 4 cycles off EC aka red devil & am also cold capping.
I was told yesterday that am the 1st person my nurse Vicki has seen in ages who was this far on in treatment & still had alot off hair. Don’t get me wrong Ive got thin hair anyway but lots off it, am shedding like mad & the top of my head is thinner, as are the sides & I have a small bald bit just above my right ear, but I know am 1 off the luckier ones.
I take 2 paracetamol whilst at hospital when am given my pre meds & am down to only washing my hair twice a week (I used to be a daily/every 2 day girl) so managing this new routine is a massive step for me.
Am moving onto Paclitaxel next every 2 weeks for 4 cycles, radiotherapy for 7 sessions & hormone tablets & injections for 10 years, however today am super pleased that am now half way through my chemo journey 
Good luck, you will be amazing & please use here as a reach out, no questions or rants are judged cause we’ve all been there or going through the same, oh & no topics are off the radar either (its actually “refreshing” to hear others are in similar situations, no matter what they are. L xx
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@emammi I’m just home from my 4th EC and like @ivegotthis01 i still have a head of hair cold capping. I’d echo the paracetamol beforehand and I also like to have a hot drink to sip for the first 10-15 mins as it takes away the shock of the coldness. I also use a heat pad that the hospital give me… I have it on my forearm during chemo but then once that’s done I put it on my legs for a bit of a heat for the last 90 mins.
I’d also say to expect a ‘big shed’ at some point so you’re prepared. I have super thick hair but have maybe lost about 30% mostly from 1 big shed which freaked me out as I don’t think I realised just how much hair would come out. It did come out fairly evenly for me so no bald patches. It can be from days 10-14 shedding can start and I started getting a little at day 22 but it was day 26 when i was washing my hair that it happened. Since then it continued to shed noticeably more than usual a few days but has slowed down again so although I’m shedding it’s not a ridiculous amount each day. Good luck!!
P.S. I’m also officially halfway there now with chemo woohoooooo!!!
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Can I just add, depending upon your treatment can depend upon how much you may shed. I got told to expect a 30/40% hair loss, but mine is always a bigger shed after hair wash days, hence me trying to go longer without washing it 
but its working for me so far
@belle1 congrates on half way point 
, its amazing how the mindset changes, or at least mine has. I needed a big kick up the arse yesteday before my treatment, its been a hard few weeks with side effects, it was my mums 85th birthday yesterday (she’s in a carehome & has dementia, so I’ve been trying to be super protective off me & her & I’ve not seen her since the day before my 1st treatment) my big sister looks similar to me & has been amazing by doing all the visits, I just cant put mum through this as she will know straight away somethings wrong with me & she worrys when I go on holiday let alone this, so this time its a I know best & mums not getting put through this crap.
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@ivegotthis01 sorry to hear about your mum. Not the same but I’ve got an uncle with dementia in a home too who I usually visit and I don’t want to visit either for the same reasons so I’m avoiding him the now too as he’s able enough to notice something isn’t right. If he fixates on something stressful he continually asks everyone about it too so not wanting to do that to him. It’s good your sister is doing all the visits!
Yeah I feel quite fed up today even though I’m also happy about the halfway point. I woke up and my phlebitis was worse and part of my arm swollen and red so when I went in for chemo I told them about the change. Had to get an ultrasound of it after chemo and confirmed 15cm of my arm affected by blood clot(s) so have been put on blood thinners now for a few weeks to try settle it and prevent it getting worse. Not sure why I feel in a funk today …. When I have to get bloods redone then no one phones to tell me if they’re ok it seems to knock me off kilter a bit too as it’s the uncertainty that chemo will actually go ahead so might be partly that. I’m sure I’ll come out of it by tomorrow! They also upped my fluconazole and gave me back up Nystan again for the oral thrush so if I can avoid it this time I’ll be delighted!!
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Omg hopefully the thinners work ok, god your having a time of it.
Nah definitely same thing, its so hard not seeing mum & this did not help me yesterday for sure.
But you get days off being ok & then days of wtf-ness & anything can & does set you off, tomorrow is a different day & am sure it will be better for you.
Today am wired too the moon with the steroids, hardly slept last night so hoping for a sleep tonight (I’ve not even had my normal disco nap)
Take care xx
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@ivegotthis01 @belle1 @gromit12 - Pleased to hear that you have all successfully cold capped! Been too caught up in myself and hadn’t realised how successful it’s been for you - well done on the half way points too 
Heading for the homeward strait now!
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