To ask if anyone has any advice/experience of chemotherapy?

[Boaby]

I'm really sorry if this is a sensitive subject, I just don't know where to look for 'first hand' help. Please feel free to ignore if it's a subject people would prefer not to discuss.

My lovely lovely mum is starting chemo for breast cancer really soon & of course I'll be with her all the way. However, & this is probably going to seem ridiculous but I have no idea what to expect. My dad died of cancer when we were really young & I can't remember much about it. I know she'll be quite sick and tired but what else? Will she be able to eat? Is there anything I can get her to help? Any recommendations or advice will be gratefully received.

Thank you.

Sorry to hear your news OP, if you go to the tamoxifen thread on general health you will get lots of hand holding and advice,
My father has recently been diagnosed with vocal cord cancer and needs radiotherapy, I was given lots of help on the tamoxifen thread and continue to lurk on there

Contact Macmillan, they offer great advice and support.

m.macmillan.org.uk/home

I will also second contacting Macmillan, they are fab, dad has a lovely nurse who I can call on at any time,
But the people on the tamoxifen thread have been through chemo so can give you first hand experience

I saw my mum go through the same. I'm sorry you find yourself here.

The chemo did make my mum pretty unwell, although we discovered right near the end of her treatment that some of the worst symptoms were due to the anti-sickness meds rather than the chemo drugs and if that had been realised earlier she could have stopped them or tried an alternative. She didn't want to eat much and we had to coax her to eat. She spent a lot of time in bed napping. It was quite hard to see, but she is with us 15+ years on so you'd have to say it was worth it.

If your mum is concerned about losing her hair (mine was) ask about a cool cap. It's like a swimming cap filled with ice that you wear while the chemo is being administered. It stops the blood vessels carrying the drugs to the scalp. It worked well for my mum - her hair thinned but she didn't go bald. It meant an awful lot to her to still look like her. Hospitals don't seem to advertise/offer it commonly though (I think because it is an extra bit of faff for them to deal with, but really worth it for patient well-being). I really not everyone cares about this, but I thought it was worth mentioning.

My dad liked-

Ice cream
Milk shakes
Cheesy pasta
Fizzy water helped him burp which he had a desire to do often!

He did lose his appetite, so when he did eat we tried to make sure some of what went in was super food. He would have a fresh made super juice from the machine every other day. Chicken and broccoli soup which again was home made.

Sorry your mum is going through this, cancer is tough.

Oh thank you all so much for your replies. I'll have a look at the tamoxifen thread & go to the Macmillan website (I didn't think of that! Although my heads mince just now & I can't think straight) Eurochick I absolutely will ask about a cool cap my mum is very upset at the thought of losing her hair - she just wants to look as 'normal' as possible throughout this whole thing.

Thank you again

So sorry to hear this, I lost my dad to cancer when I was 14, it's crap!
What I would suggest is to keep her away from anyone who is ill (obviously I know this isn't going to work well in a hospital but you get me.) Obviously chemotherapy reduces white blood cell count which can cause little illnesses to turn into big deals.
Another, is to question everything that seems amiss! The doctors told us that my dad had put on 8lb in one night. Now we realise that he had actually put on 8lbs of fluid on the lungs and essentially drowned in his own body.
I don't know much about whether she can eat as my dad had oesophageal cancer so he couldn't eat anyway. Same with the hair loss - he didn't have much to begin with.
I do hope that your mum gets better, I know it's shit. Sending super good thoughts and x

I've recently had chemo for breast cancer and post on the tamoxifen thread, you'd be very welcome if you want it post there too
Everyone reacts differently I wasn't sick at all but others have suffered badly with that. If she gets travel sick or had morning sickness she's more likely to get it. Ginger things help, biscuits, ginger beer etc.
She will probably be tired so you could help with cleaning etc when she doesn't feel up to it. If she's having it every 3 weeks then the 2nd week will probably be her worst and in the 3rd week she should feel ok so it's nice to plan things to do to look forward to in that week

Nilbyname that's great thank you, I'll fill her freezer with various ice creams & ice poles & instruct my auntie to be on hand with soup - hers is better than mine! & I have a juicer somewhere in this kitchen.

You're right cancer is tough

My H suffered with a metallic taste so lots of mints, sweets. It can also affect ability to regulate temperature, he was always cold, so jumpers / hot water bottles. He couldnt tolerate caffeine, so decaf everything. You sound lovely, just be there for her and be prepared for mood swings too! Good luck to her.

DH had 9 months of aggressive chemo & says the things he learned from it are:

Don't let the water /saline run out, or go for lower water ratios, it burns A LOT. Sorry, horrible one to start with but he is convinced that had he not been talked into 'manning up' and using less water to make the sessions shorter, it would have been a less traumatic experience.

If you can go private or sit in a small room (rather than a large room full of people who sadly were sometimes clearly not going to make it) then do it, whatever the cost. We have PMI but he went NHS as he reasoned the treatment is the same & was bullied by an anti-private consultant. The psychological impact of seeing some people not turn up for their sessions was awful.

You will feel weak and queasy for a day or so after, so well-meaning 'cushion plumping' visitors the same day or the one after are not a good idea. Grandchildren cut through the crap so are to be encouraged!

Don't bother with the cold cap or trying to style thinning hair, just cut your hair short straight away, the psychological damage of longer or more fixable hair on the pillows is not good.

Don't EVER talk about 'fighting' cancer, it implies that people who don't make it are weak.

All 4 surviving cancer family members thought Macmillan were crap - well meaning, but crap.

Sorry these aren't uplifting points, but they are real experiences that can make your mum's ordeal marginally better.

Lots of love & very best wishes to you both xxxx

I would like to say the my experience of Macmillan was very good, especially for me to ask for help. Less so for my dad, he couldn't be arsed with them!

I think the cool cap is a good idea personally, it can't hurt? Also it might be worth investing in a silk pillow case to sleep on as this is good for preventing stress and breakages on hair.

Also, one if the big symptoms of cancer is fatigue. Fatigue is not exactly treatable, and taught me to be really patient with my dad who at times could not do anything. Lots of humility.

I've cared for my DM through cancer and lost my ddad.
My first thought would be lovely, soft pajamas. With short sleeves for easy access for bloods/canulas and button front if they put in a Hickman line.

It's a long journey. Remember to be good to yourself. And food, like the other posters have mentioned. Great advice here already.

Sorry to hear about your mum. My MIL has just completed her chemo (2nd time) for breast cancer. Of course it goes without saying that it is emotionally and physically very difficult. But this is what we found:

Three week cycle- first few days fine as steroids kick in but when they wear off, MIL would then start getting very tired. So week two def the hardest. Week 3 would all be about building up and preparing for next round.

Mouth ulcers this time so lots of soft, creamy food : yoghurts, macaroni cheese, rice pudding etc

Travel sickness meds worked really well this time.

Losing hair is really, really hard. If your mum has a regular hairdresser, it could be worth having a chat to her about this. My MIL's hairdresser now visits her at home. She has helped with wig and scarf fitting. And was really helpful last time when her hair grew back very different.

Take it one day at a time and try really hard not to let it rule your lives. Go for lunch in good weeks and don't talk about it. Talk about ordinary things, events to look forward to. Easter, birthdays, the summer holidays.

I wish you and your mum all the very best

Just saw my first sentence. Should explain that my ddad had a rare, inoperable brain cancer. It was a long time ago. No reflection on what will happen to your DM.

Hugs to you.

Chemotherapy works by interfering with cell growth, thus attempting to halt the growth of cancerous cells. Unfortunately the side effects are that rapidly dividing healthy cells such as hair follicles/ the lining of the mouth and bone marrow cells are also affected. So patients often get prone to infections about a week after chemo, may get a sore mouth and hair loss, tiredness etc. However any side effects will depend on which chemo crugs are used some have more severe side effects and some are relatively mild. Without knowing exactly what combination of drugs your mum is having , it's hard to say how she will be affected. before she starts the course, she should be given a chat explaining what to expect and any side effects. make sure you ask any questions, it may help to make a list.

Hi Sorry to hear you Mum has to undergo treatment.

The treatment will probably be in cycles. so there will be some weeks when she feels Ok and other weeks when she feels very weak. Try not to worry too much when she is in an unwell week - she will get better again. It's the way the treatment is designed to work.

You could buy a really good in the ear electronic thermometer, because she'll need to be very careful about possible infections and will need to be able to monitor her temperature if she feels feverish. If you have a cat litter box, she shouldn't clean it out.

Other than that, just do as much as you can around the house, washing, cleaning, shopping etc. One of the worst things for me was lying there looking at all the things that had to be done and not having the ebery to actually do them.

Hope all goes well. Best wishes.

DDad is on a 3 week chemo cycle for stage 4 prostate that has metastasised everywhere - bones, kidneys, lymph nodes...

Anyhoo, week 2 is hardest for him too. First couple of days he is ok, then the negative effects kick in and he is pretty awful (read bedridden) for a week, then in week 3 he dashes around like a mad thing, ignoring all the pain and trying to squish in as much living as possible into that week.

They are in Canada so no experience of Macmillan etc, sorry.

Oh and he has been bald since the age of 25 so no worries there - I do think hair loss must be a tough one for a lot of people.

Go with her and help choose a wig they're great these days, a lot of people didn't realise I was wearing one. I used the cold cap so didn't lose all of my hair and it grew back quite quickly

The thought of chemo and the fear of it is worse than the reality, we've all found it hard but doable and that's with looking after homes and children at the same time

Babyroobs what a helpful summary, thanks.

I had epi-CMF chemo for breast cancer. There are different chemo regimes for different types and stages of breast cancer and no person's experience is ever the same, even if they're on the same drugs.

Macmillan website is beyond brilliant. It was my go-to site for when I'd not quite taken some information in, or wanted to know more.

I would say:

Make sure your mum takes the steroids and the anti-sickness medication she'll be given after each infusion. It's important to finish the course to control any sickness and nausea.

If the anti-sickness medication isn't working, talk to the chemo nurses. There are plenty of different types and one will work. Being on chemotherapy doesn't have to mean feeling or being sick these days.

What are your mum's veins like? Talk to your mum, doctors and nurses about the possibility of having chemo through a PICC line or a port. Chemotherapy is very, very hard on veins and they can harden, painfully, sometimes resulting in a condition called cording where you feel like you literally have tight cords pulling all the way through your arm. Heat packs applied during the infusion and for a while after help so much with this, but if your mum is willing to have a line or a port, then any vein issues and pain are instantly removed. They can be a pain for some people because you have to attend the hospital every week to have them flushed and the dressings changed.

Bpiled sweets or mints. Sucking on one during an infusion really helped me.

Take everything one step at a time. Focus on the next infusion, then the next appointment and the plans for next week. Don't try and take in too much information because it won't go in. You've had lots of excellent advice here, but it's still bound to be too much.

Just recently finished chemo - the 'FEC-T' regime which apparently is aggressive treatment. What I've found is that when you read the breast cancer forums you are reading the worst case scenarios. So I started off dreading what was to happen. The reality was nowhere near as bad as I thought it would be. For a start it doesn't take that long once you're in hospital - maybe couple of hours. The first time I was sick about 19 times within 48 hours and couldn't keep down the anti sickness tablets but that was dealt with by giving me a battery operated constant syringe the next time.
My hair was gone within 3 weeks. Didn't want the cold cap as oncologist said that the hair stays because the chemo doesn't reach the cells on your scalp.
My husband took time off to look after me and watch the kids after each session but apart from the first one he wasn't really needed.
There are small niggly things such as achy nail beds, sore veins in hand and arm, complexion turns a bit grey, drawing on eyebrows (!) but the most annoying was taste buds going - but came back again

Btw there is an underground wig industry that you would not believe and many amazing wigs! On a positive I've saved a fortune on shampoo and have loads of time on my hands not needing to dry and straighten hair just now

If you have any questions just shout

My mum had chemo for breast cancer,she requested the cold cap but says now she wishes she hadn't have bothered,she still lost a lot of hair anyway.I suppose everyones different though.
Also comfy clothes.Invest in some good quality,luxurious pj's.My mum bought her first pair of jogging bottoms for her chemo sessions because she wanted to be comfortable and pj's for at home.
Her favourite juice or pop to drink during treatment and some magazines or a good book to try to pass the time.
My mum made some good friends while she was having treatment,a lady the same age as her and a young lad who she still stays in touch with,thankfully they recovered too.She felt uncomfortable at first with everyone,she's very shy, but by the second session she felt abit better about it.
All the best to you and your mum x

Also a good book to read while she's getting chemo - it really is very boring!

Ah jeez sorry for the delay in replying to all you kind & lovely people I got myself all upset & went away for a wee cry.

Thank you so much for the helpful advice & for sharing your experiences I'm going to print this off & show it to her & write down some questions for the doctor/nurses. They must already hate me because I have questions about everything!

Cancers a right shitebag . Thank you again you fab bunch of ladies xxx