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1st chemotherapy with cold cap

TrishLamb profile image
16 Replies

Had my 1st chemotherapy today, tried the cold cap, wasn’t to bad, first 20 were uncomfortable but tolerable after that it was fine, until they took it off I had an ice cream headache for about 5-10 minutes.

I have 3 cycles of EC then 3 cycles of Docetaxel followed by 15 rounds of radiotherapy. I’m home now and waiting for the side effects... I have no idea when they will kick in and any advice would be great!

The chemotherapy went fine apart from me having an anxiety attack just as they started but I soon settled down, when I was reminded to breath....

Hope your all doing well on your journey and I appreciate any advice x

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TrishLamb
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16 Replies

Hello Lovely Lady 💕

How are you feeling tonight? Better than you thought? It’s a very strange day & just think you’re on your way now! 1/6

It’s surprising how fast the weeks go, same routine back n too to the Hospital, Bloods etc.

Did you ask about being in contact with a baby?

Shout if you have any questions & keep away from anyone who’s sick or sniffly as your white blood cells will be knocked out in a couple of days!

Drink lots of water, take a bottle to bed so you can just take a drink if you wake up.

Take Care

You Can Do This 🎀

Angela 🌸

TrishLamb profile image
TrishLamb in reply to

Hi

Had an ice cream headache since getting back, and felt nauseous since traveling home in the car.

The ice cream headache is just going, but the nausea is still with me, I’ve taken all my anti sickness but only thing that helped.... slightly... rich tea biscuits.

I forgot to ask about contact

Wasn’t expecting to feel sick so soon, and wondering if the headache is worth it but not going to made any decisions about cold cap until next appointment.

Been drinking lots of water, I feel watered out....

going to see how I get in tonight with nausea tablets, might ring nurse tomorrow.

I’m just concerned about how I’m going to cope when the ‘side effects’ do kick in! If this is anything to go by x

in reply toTrishLamb

Yes definitely ring the Nurses tomorrow, l used to have a bowl in the car just in case but l never was sick!

A dry biscuit is a good idea but the Chemo is coursing through your veins, have you had Pink Wee? Courtesy of the Epirubicin! 🌸

Try & get some sleep, don’t worry what might be, just take it in your stride, you can do it, honestly 🍀

Speak Tomorrow

Sleep Well

Angela xx

TrishLamb profile image
TrishLamb

Hahaha is was very red then pink now it’s orange like tango, I wee more when I’m nervous so I’m hoping that the amount I’ve wee’d and water I e drank that I’m getting it out of me ASAP

Taking some codine tonight to help me sleep, but I’ve had a high dose of steroids so will have to wait and see

Chick44nzrn profile image
Chick44nzrn

Hi Tricia ! You’ve done so well and with that kick start you will probably be able to sustain the cold cap as I have . 18 weeks and 5 more to go . Although having had very thick hair and now lost over half I haven’t had to use my wig ! Headaches yes , so I take a couple of paracetamol before freezing and after first 20 mins it’s not too uncomfortable

If I can upload a recent photo I’ll try to send you one !

Steroids are my lifeline and the four days after with anti sickness anti neutrofils

Attack , it’s manageable though these last few weeks are getting a bit tougher ,; I guess as the Taxol accumulates !

Side effects come and go , but are bearable! I won’t list them they are all on the net !

You can do this !!!

Best of luck and keep in touch

Denise x

TrishLamb profile image
TrishLamb in reply toChick44nzrn

Thank you Denise x really appreciate your advice and support x

carolinenailsea profile image
carolinenailsea

good luck to, you kind of get into a treatment regime, i remember the pink wee and my objective was to drink and drink to get rid of the poison from my body asap. Keep taking the tablets they give you and dont be shy about letting them know how you are feeling - they have lots of different tabs that can help. I didnt have much appetite but managed things like melon. We are all different but my worst side effects were my skin and mouth so my advise would be masses of moistureriser and heavy mouth hygiene. You will get through it. best wishes xxx Caroline

MrsPardaeva profile image
MrsPardaeva

1 down..well done. Your treatment is exactly what I had.

I really struggled with nausea on my first EC and turned out I was having a reaction to anti sickness so they gave me something different, ondansetron, and it worked a treat. Make sure you let your team know you felt sick, it can be prevented with the right tablets. It is possible to minimise a lot of the side effects if they know how you're feeling.

I also can't stress enough about how much water to drink. I got a 750ml carry around water bottle and would have it by my side at all times and make sure I drank 3 a day. It flushes the toxins out quicker.

I didn't manage cooling after the 1st try as I'm prone to migraine and it caused a week of that but if you can cope then keep going.

The steroids might keep you awake, if they do ask for some light sleeping tablets like zoladex, they were such a god send on those nights where I was exhausted but couldn't sleep.

I also found the day after chemo I felt good, probably due to the steroids, so would make sure I got out and about for a few hours if possible then rested more on day 2 but do try to walk every day, even just for 5 mins.. It really does help to be outdoors.

Lastly, be kind to yourself and listen to your body. Let as much as you can manage each day be enough. it's tough but you are stronger than you ever imagined. it will pass and you will get through it xxxx

Birthday2018 profile image
Birthday2018

Well done on getting through the 1st one. I had 3 of these. I tried the cold cap but it was hard on the second one and then my hair (majority of it) fell out so I gave up as couldn't face it on a nearly bald head. Hope you get on better. I didn't really have any sickness and it's true you do usually feel better whilst on the steroids then may get a few side effects. Like an earlier lady said keep your mouth fresh and clean and use any mouthwashes they give you for sore mouth. I think I did okay throughout this chemo but, got worse when moved to docetaxol, pertuzumab and trastuzumab as I was er+,pr+ and her2+ so had treatment before my surgery. Will be thinking of you and please don't be hard on yourself if you are feeling under the weather as I am sure you will pick up again and can continue doing things you want to do. Take care and lots of love to you Serena, x

Decomtamination profile image
Decomtamination

Hi hope your doing ok, I had the same treatment as you but did not do the cold cap well done you. I started to feel unwell 3days after chemo then pick back up after about 3days it does take longer each time but you will deal with it. Be strong and good luck. When it comes to your Radiotherapy I used aloe Vera gel on scar site it worked really well , I wasn’t sore at all . My thoughts are with you Good Luck 👍

jackearls1000 profile image
jackearls1000

Good Morning ...I hope you night was ok ....and you had a good sleep ...I had the cold cap with 6 cycles of fec ....the headaches ... took a paracetamol before ...and got the headache stick ...its a menthol stick but worked great ..you can get it in superdrug ....ginger and lemon tea helped as well to help with the nausea ...thats one down and it will go quickly ....ave a lovely day ..always here ...lots of love Jane xxxx

TrishLamb profile image
TrishLamb in reply tojackearls1000

Thank you x I will get some in, but I really don’t know if I can cope with the headaches again

jackearls1000 profile image
jackearls1000 in reply toTrishLamb

Keep going my lovely ..i did and although i lost 75 % of my hair ...after treatment i was able to do marvellous things with it ...I found a vegan dye so was able to get it back to black ...( I went white) and then just 3 months after radiotherapy i had weaves put in ....Its been my saviour I have been able to go everywhere without any concern ...I did like the wig ...but weaves allow you to wash and blow dry your hair, whilst your real hair grows ....Im a year after treatment now and still have weaves, as my hair was really long and all one length ...but am looking forward to be weave less in the near future ...no one guessed and even now i get no worries ....Im so glad i persevered...just make sure you wet your hair thoroughly as i would have saved more if the nurses could be more bothered ....the menthol headache stick is brills and a couple of paracetamol before works ....2 x 500 mg ...also I highly recommend a a child's toothbrush ...its great ...for teeth that is ,not your hair ....and look ...I was petrified of losing my hair ...and I coped really well ....I wish I could post a photo so you can see ...its crap at the mo ....but the count down has begun and the end of the tunnel will be fast approaching ....always here for you Jane xxx

Chick44nzrn profile image
Chick44nzrn

Hi again Tricia re headaches . Suggest try 2 paracetamol 15/20mins before freezing ? Worth s try as made a big difference for me

X Denise

Jane-deborah profile image
Jane-deborah

I completed chemo 2 years ago. The Cold Cap worked for me. My hair was already short and did get thinner but didn’t need to cover up. As well as IV paracetamol I was given lorazepam as a relaxant which helped to tolerate the feeling of having my head ‘in the freezer’ and wasn’t left with a headache afterwards. I also found ondansetron really helped the nausea ( but I needed laxatives when taking these!).

Steroids were good but did give me mood swings, and I now wished I’d reduced the dose over a few days each cycle rather than just stopping them.

One of the chemo side effects I learnt a lot about was ‘chemo-brain’- just loss of concentration, being more forgetful than usual and less able to multi-task. I found ways to help me through this, such as using lots of post it notes with reminders on, setting myself some simple goals to achieve each day, rather than frantically trying to get lots of things done as I usually do, and starting yoga and Pilates which I’ve continued ever since. I used the facilities in a local cancer centre, and found speaking to other clients there really helpful and supportive. My sleep was rubbish but taking zopiclone throughout chemo helped me cope.

Good luck Tricia!

ikikuru profile image
ikikuru

Hi,

Wish you all the best with the treatment and cold capping, my wife is ‘hopefully’ going to accept chemo, and has been looking at cold capping! Would be great to here more about any tips you pick up! Did you consider gel gloves for your hands or feet at all? Looking at the ones on amazon!

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