Starting chemotherapy soon

[Santa01]

Just that, having 4 cycles over 12 weeks, just wondering if anyone has any tips on how to deal with it, using the cold cap as have been advised too by nurse...

Bit lost tho as don't know if I'll need to prepare in a non medical way, eg moisture creams, foods or vitamins to get,

Also has anyone heard of fasting during it as to maximize the effects..

Thanks 🙂

I have no personal experience sorry but I didn't want to read and run. My DS went through many rounds of intensive chemo as an infant. He was unable to vocalise what he needed and how he felt but I would be prepared for extremes food taste changes. Sickness was hard and he got a lot of mouth ulcers so maybe a supply of soft foods yoghurts/iced treats. From my experiences of adults vs children with cancer treatment is that the children have much more of a positive mental attitude and it definitely makes a huge difference. Try and not expect anything at all and take every single day as it comes. I wish you all the best x

I have gone through cheme, although 6 years ago now.
I have heard of fasting and that it benefits and negates side effects; if I had to go through chemo again, I definitely would do that. I think it was fasting day before and day of chemo and benefits then after. I think it benefits in lessening the side effects, not necessarily enhancing the benefits of the chemo; I haven't read up on it for a while so might be wrong. Either way, anything that lessens side effects of chemo is a good thing!

As for preparing:

• Don't forget to drink! I didn't drink during my initial chemo day and got very dehydrated; it made the side effects much worse!!! You can go without eating, but definitely drink little and often to flush out your system and keep hydrated. Its difficult going to the loo with a drip in your arm, but definitely better than the alternative of dehydration I found.
• I wore lots of long cardigans and hats; your head will get VERY cold particularly with a cold cap, so long flowing cardigans I could curl up in were good. I basically curled up and hid from the world during my actual chemo (drip in etc) with headphones on and music. Couldn't concentrate even to read so just listened to music and slept
• I had an anti anxiety pill before each chemo as they always struggled to get my line in so ended up with them giving me the pill which helped them and me - and meant I slept through most doses (7-8hrs on a drip for mine, which was unusual, yours is probably less). If you struggle with the whole thing, ask them for this as it does help
• Hair; you may lose your hair, or not if cold cap works. I had my hair cut short before chemo to lessen the loss. I wasn't eligibly for cold cap due to length of my chemo sessions so lost my hair - excuse for lots of lovely cotton caps and scarfs! Bizarrely losing your hair does hurt/ tingle which I wasn't expecting.
• I suffered badly from side effects and basically was bed ridden day 3-7 after every chemo cycle (again, very high dose and length of chemo - you probably won't be like this); my DH started to track my cycle and he would remind me each time ''its day 5, you start to feel better tomorrow and then up and normal the day after..' - it really helped as when I was 'down' it was hard to see a way up. Just remember, its a cycle and you will always come right again.
• I had Reiki between cycles that really helped. Probably placebo and relaxing, but lovely. During Covid thats hard, so perhaps some nice creams to keep your skin hydrated, calming oils etc

Thats all I can think of right now; wish you the best of luck.

No tips sorry but just wanted to say - good luck

wanted to say good luck too. my dad had chemo earlier in year and a friend made a parcel from her experience which included-

• flavoured tea, strong flavours like ginger
• boiled sweets, strong flavours like aniseed, lemon etc
• a pillow to take to hospital to rest arm on as felt cleaner to take own
• difflam to help with ulcers and lip

balm

• squirty squashes to take to hospital to make water better.
• hand warmers (microwave ones) to keep hands warm as hand and feet cold. also thick insulated socks, along with a fleece blanket

dad had cycles too so he knew he would feel ill on day 7-10 and then better.

he also took his temperature daily (and logged it) so he knew what was normal for him so if he did spike a temp, he could be sure:

Hi,

Thanks for the lovely wishes and @chilver for the advice, I think I will layer up for the cold cap, I've heard it's not great for the first ten minutes then it's bearable.. and I'll bring plenty of water with me. Meeting the nurses tomorrow for a pre assessment so I'll mention to them about fasting, was afraid to incase it was some mad idea and they would tell me not to be daft...

I did it, with 4 young kids, it was very hard but I survived it and it’s for the greater good. I did do cold cap, nurses were quite negative and said it wouldn’t work but it did and I still had my long hair after 6 months (albeit much thinner but no one could tell). It made a world of difference to me as I felt that I did not look like victim or a cancer patient, which really helped my self esteem and made it less scary for my children. I took paracetamol about half an hour before it was due to start, layered my hair with Aussie intensive conditioner, and after treatment didn’t wash my hair for about 3 days and never brushed it (just ran my fingers though it to untangle knot or used a very wide tooth comb and held the hair on my scalp firm when I brushed.
Also:
Take hard boiled sweets to suck hard when cold cap starts. It’s unbearable for 10 mins but then is fine. It was so worth it if you can just survive those first 5 mins
Ask the ward doctor for strong sleeping tablets after treatment as the steroids keep you awake all night if not
The first few chemo sessions seemed worse than at the end of the the course
Picc line into the arm was a godsend and meant I didn’t have to have injections each session for the chemo
Portable DVD player or laptop to watch film during treatment helped, cold cap meant I could concentrate on reading
Don’t wear any of your favourite clothes to treatment, everything will bring back memories in the future and I had to send the clothes I had worn to the charity shop.
Hope it goes okay for you xx

Ps. I would think fasting would be a really bad idea. You feel sick a couple of days after treatment and don’t feel eating much anyway but then you feel better and my God your body needs energy to get through it, and heal and mend. I felt weak enough without depriving my body of food. I did put on about a stone but lost it at end of the treatment xx

Good luck OP.
No personal experience but take something that comforts you and something to distract you.
I've heard it that it affects people quite differently.
Wishing you all the very best with your treatment.

What drugs are you having OP, as the side effects can be very different for all of them.

My main advice is don't expect too much from yourself, especially in the days immediately after chemo. Eat all the carbs and beige food if that's what you need to do to get through - I don't have the best willpower tbf, but there is no way I could have thought about fasting during chemo (!) although I know some people do. Sleep when you want to. Drink tonnes of water. Head down, you will get through it

Also buy a good electronic thermometer as you will be asked to monitor your temp on a daily basis cx

Im not a doctor, or chemotherapy specialist, but I do work in oncology. One of the biggest issues some of our patients have is weight loss during treatment as nausea, constipation, changes in taste etc can massively effect appetite. Please don't fast without a serious conversation with your oncologist or dietitian, it could cause much bigger issues than improvements if not carefully managed.

HI, I finished my chemo in October, for breast cancer.
I wouldn't fast , I'd eat whatever you fancy, you need to be healthy and with good nutrition, your taste buds change so you may want to eat different things to usual.Take sweets to suck during the infusion, you can get afunny taste in your mouth.Drink plenty!
I chose to have a picc line in to save having a cannula each time and prevent vein damage, it was great though you have to keep the area dry when showering/bathing
get some laxatives in, I alternated between constipation and diarrhoea.
nausea was pretty awful, but after a couple of days it settled with the meds they give you
there is a medicine for every side effect, so just keep in contact wit either the chemo team or your specialist nurse.
I didn't cold cap, my hair is just starting to reappear as a soft fuzz.
I had 2 sorts of chemo every 3 weeks for 3 cycles then a different one every 3weeks for 3 cycles. the 2nd lot gave me bone pain for a few days but again, you get painkillers-just don't suffer in silence !!
I was and still am exhausted a lot , finished radiotherapy last week.
I found a facebook group for my type of cancer=this was the best thing i did, learnt loads of tips, got lots of support ec, highly recommend you try that too. happy to answer any more questions you have , good luck, it's tough, i won't lie, but totally doable .

oh- sore mouth- I got thrush, got nystatin from GP which sorted it, and difflam mouthwash if your mouth gets sore.
I was never bed ridden with the first lot but felt rough for 4-5 days. By end of week 2 I was wishing I could have the next dose!
with the 2nd lot I was in bed a day or so because of the bone pain.
Depends on the sort of chemo you have, there are lots of different ones. If i can think of anything else I'll post again- memory problems are common after chemo, but its not permanent! :)
Some people have trouble with their nails falling off and painting your nails black is recommended- I tried and gave up after 3 weeks as they chipped and looked awful( you can't use gel gels) I just used avocado oil to rub in twice daily-my nails are lovely.Apparantly UV rays mixed with chemo is what damages nails.Guess I was just lucky.
I take a supplement- Boots own "hair,skin,nails" capsule, so maybe they helped too.

Hi all, thanks so much for the kind messages and advice, lots to go on, I'll be picking up some of what you have suggested in the shops this week. And I'll speak to my team before I start any fasting, I wouldn't go down that route without letting them know first. Am having taxotere and cyclophosphamide, the nurse did say they were quite tolerable and did say not to go out and buy a wig or anything just yet.

Feeling pretty nervous about the whole thing, but seeing that other people have go thru it and still saying gives me lots of reassurance 🙂 will update you as to how I'm getting on, hopefully this thread will help others also

More than anything, don't listen to people telling you that it's going to be awful! There are so many different drug protocols and they're all very different from each other. Doubtless you'll have been told or researched the specific side effects of your own 'cocktail' which may well be very manageable.

I was gobsmacked by how negative people were (quite openly) to my husband when he was about to start his chemo. It's almost as if people want to put the fear of God into chemo patients! Then of course the same people were the ones who later kept saying he should 'keep positive'!

His protocol really wasn't bad at all, so I hope you find the same. Good luck!

Haven’t had time to read full thread so apologies if already mentioned - I used a cold cap over 16 rounds of chemo in total and still have a good head of hair. A stretchy hairband that you can get in Primark Poundland etc for under £1 - put this across your forehead before they put the cap on it makes a massive difference to the initial brain freeze that you feel when the machine goes on - distract yourself for the first 15 minutes or so and if possible have a hot drink at this time - after this you become used to it and it feels more normal - if your unit don’t provide blankets take one as if you stay warm it helps - good luck - welcome to message me if you have an specific questions

I had chemo for 6 months, well 7 really, as I had neutropenia and was admitted for one cycle.

I didn't coldcap and had it cut short prior to starting then shaved it all off when I got peed off with eating my hair at dinner timeI used to polish my head with hair wax

It wasn't awful, but it wasn't fun. First few days after each session were dedicated to sleeping. I'd get the kids off to school and sleep until it was time to get them. Diet for them went out the window as I couldn't face anything more strenuous than fish fingers and smiley faces. As the week went by, I'd get more energy back until the next time.

I had a Hickman line put in my chest as my veins collapsed and it made it a lot easier to take blood from it and put drugs in. Had oramorph for the sore bones and feet and mouthwash for ulcers. Didn't get sick as had plenty of anti-nausea meds before they started the drip.

I didn't fast as I lost my sense of taste and everything tasted wrong, so just treated myself to things I could taste : chocolate, green teas and lots of toast. Remember to avoid grapefruit, if they haven't already told you this.

Wishing you good luck.

I did cold cap. It was colder than I imagined. Painfully cold. Take a towel for around your shoulders to stop icy drips rolling down your neck.

You’re probably better off using a Buff or similar afterwards rather than your wig to give hair time to dry.
Don’t let inexperienced ‘kind’ nurses overpaid the edges of the helmet as that stops parts of it working.
Go to the loo beforehand. It’s a huge faff going with drip and helmet leads.
Be prepared for a much longer time on the unit with a cold cap. It has to have time to cool the scalp so you sit in it for a good while before chemo.
I don’t regret the extra faff. It wasn’t a miracle cure to stop hair loss but allowed me to retain enough to get rid of my wig much quicker.
It is more effective on short hair. Have your hair cut short beforehand.
Ignore the many people who pressure you not to use it, who tell you bald is brave, who say there’s some lovely scarves out there.
I found looking normal allowed me to be treated and feel more normal and meant apart from a couple of days each cycle I could carry on with life.

I had my hair died and cut to exactly the same colour and style as my wig to allow smooth transition without many people noticing. The only problem was people admiring the brighter colour and trying to touch it.

Beer is better than wine. Chemo can make things taste metallic.
If you use sense of taste it’s chemo not coronavirus. The drugs damage taste buds. Strong flavours and very sweet or salty things get through the damage. Things that still tasted good were curry, McDonalds milkshake (never before or since), iced pineapple.
Don’t fast.
Far from losing weight everyone I went through chemo with gained weight. It’s the steroids. Not only do you hoover at 3am and talk more you get fantastically hungry. My husband had to drive out for milkshakes at midnight when I got the munchies. Don’t make any major decisions under the influence of high dose steroids.

It’s entirely doable. It’s not as bad as you imagine. You get very well looked after. People get terribly sickly and need to be told to stop with the head on the side stuff. It teaches you much about yourself, what’s important and how resilient you are. It was good for me not only in curing the cancer but in self awareness and reaffirming y capabilities.

Good luck, it will pass quickly.

@Santa01

www.mumsnet.com/Talk/general_health/4052942-Cancer-support-thread-76-newbies-welcome

I had chemotherapy from November to February and found this thread supremely helpful and inclusive .
If you head on over there you will find lots of information and support .
I don’t post much on there now as have the all clear and just have two more cycles of Herceptin to go.
But ,in all honesty , I found a huge community there.

Thanks again guys, some great information here, @ whydoihavetodoeverything , I must get that Aussie conditioner, when did you apply it? Was it before you left the house in the morning or when you got to the hospital? Thanks again everyone, making a list now 🙂

I applied it in the bathroom on the ward just before having the cold cap put on. Google cold cap tips as there were many. Go for a cap a bit smaller than the nurse will suggest, tighter the better, you shouldn’t have any gap between scalp and cap. Have never been able to use Aussie conditioner since though as smell reminds me!! Like everyone else said, it’s doable and although unpleasant it’s probably not as bad as people will suggest. I was never physically sick, I kept my hair, I felt awful after the first session (like a really bad hangover) but had to get children up and out to school so probably didn’t help and lasted about 3days. Between then and next treatment I actually felt quite energetic, went for daily walks, took kids to school and decorated the house, wanted to make the most of having energy til the next session. I was very careful about picking up bugs so didn’t go to school events, like assemblies, but they are all cancelled now anyway! Good luck my dear xx

Ps I did get a wig just before treatment started just as a back up, it was free on the nhs and excellent, ordered from the states! X

I had chemo (6 rounds) and did fast (for all but first cycle)

Important points

• do research (Valter Longo is good starting point)
• discuss with oncologist (mine took the approach that it wouldn't harm me)
• drink plenty, then drink some more

My chemo was on Thursday mornings. I had last meal on Sunday eve then fasted through til Friday lunchtime then would head to a nice restaurant and treat myself. All the weight I lost during fasting I would generally pile back on in the following few days (around 3kg) although with each cycle my weight dropped around 1lb overall.

Need to go to sleep now but happy to answer questions.

I had hypnotherapy to teach me how to put myself into a very relaxed state which helped a lot with cold cap. Basically relaxed and imagined I was on a beach. Also take iPad with crap tv on it as very difficult to even read x💐

All chemo is different what type are you having.