68.6K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Beginning Chemo tips

39 REPLIES 39
Jules3005
Member

Re: Beginning Chemo tips

Thanks everyone for all the advice, feeling a bit better today. Been out with my hubby today to Skipton, it was lovely day and now just chilling. Hugs everyone xxx

 

Momo
Member

Re: Beginning Chemo tips

Weight gain is a pain for me especially that I feel it's a bit unfair that I'm eating just the same amounts. I've always been prine to gaining weight simply by looking at food. This is a problem with my entire family. I don't know what I can do with this problem. I know that a big part of it is water retention. I weigh myself when my wedding ring gets stuck I. My finger and find that I have suddenly gained a coup,e of pounds which disappear as soon as my wedding ring gets loose again. 

Carolyn52
Member

Re: Beginning Chemo tips

Jules
Sorry you are having a bit of an off day but you are allowed as you have lots going on ..it's good you have a good support team around to brighten you too.
When I was having chemo ..my sis came over everyday with a focus to do something which was mostly shopping but I used to get so hungry that she called me a gremlin. It's a sort of hunger that won't go away and is desperate! I didn't put on any weight as it was gremlin for two weeks and one week just water and toast and it levelled out over the cycle.
Hope u have a better happier day tomorrow.
Carolyn xxx
Moijan
Member

Re: Beginning Chemo tips

Jules, sorry you feel low. I fnd. Eribuln makes me feel down. I used to like my hair the way it was before...too.

 

i got very angry with a teenage boy outside sainsburys today because a group of them were larking around and he came barrelling backwards towards me and nearly knocked me over. I shouted 'Hey, Be Careful' at him, which isnt like me at all...and I had my scarf on...he said nothing...I expected An f or two, but he didnt...I guess we are invisible, Carolynx

 

anyway Jules, make sure you push your fluids, I find that helps my mood, there is evidence the brain shrinks when we are dehydrated so, that might also p**s us off! I also need a good nights sleep.

 

love to everyone

 

Moijanxx

Moijan
Member

Re: Beginning Chemo tips

Yes Carolyn is very wise, and you can always tuck the chocy up under the wig, so its handy!

 

i agree with Carolyn about the scarves, but have bern wearing some in between wig wearing, it gives me a bit of relief. I have not shavedmy hair, as i like having some peekkingout of the side behind my ears and a fringe.

 

when I wear my wig, ive just discovered that a stocking wig cap( bought) under it stops theitching and makes it

more secure! I tuck up my remaining hair under it and then shove on the wig! Dont get the ones like srtri g vests tho, they do t work as well as the solid ones.

best of luck

 

Moijanxx

 

oh and im not trying to lose weight but should do more excercise and that's a good way for me to trim up, rather than dieting as the endorphins buck you up! 

Jules3005
Member

Re: Beginning Chemo tips

 Thanks Carolyn, I've had a bit of a low day today so I will take your advice. I thought I was prepared for my hair going as it was so gradual at first but it didn't hit me until it was gone last night. My lovely daughter took me for for a full english breakfast this morning and my sister has just dropped round with a huge cuddly Koala bear, he's lovely. xxx

Carolyn52
Member

Re: Beginning Chemo tips

Jules
Once u wear the wig a couple of times ..it gets easier and u get yr confidence back.
Have a McDonalds and a large bar of choc for medicinal purposes !!
You can always buy a bigger size Jean for the time being !!
My advice though so not to be taken that serious !!!
Carolyn xxx
Jules3005
Member

Re: Beginning Chemo tips

Thanks Carolyn, I've worn my wig twice now and saw my neighbour yesterday who I hadn't told about my condition. She said my hair looked lovely shorter than I normally have it and didn't seem to know it was a wig so that did give me a bit more confidence. Mick, my hubby, has just shaved off my remaining hair tonight, which was much harder than I thought. Had decided to try to be good today but needed chocolate after  that Heart

Carolyn52
Member

Re: Beginning Chemo tips

Hello Jules
Phew ..weight gain and hair loss the two things we ladies dread.
As far as the wig thing is concerned ..only my opinion not advice but if u go out wearing a headscarf or turban .. people know u have cancer/ chemo and start patronising you etc ..a good wig just makes u feel a bit more part of normal. I found a short wig the better option with a sort of false scalp that looks natural (ish)
I wouldn't worry too much about the weight ..just concentrate on keeping well and coping with the chemo at the moment ..your body probably needs the extra calories to deal with toxic shock!!
This is only just my thoughts and not serious advice though.
Carolyn xxxxx
Jules3005
Member

Re: Beginning Chemo tips

Thanks Ellie, yes I was a keen runner, but now I have fluid in my lung and so I'm breathlesss walking now, plus my job was fourty hours a week on my feet so its like a double wammy. I did mention to the chemo nurse about my weight gain and she did say that the steroids stimulated your stomach which makes you eat more so I've just been trying to drink more instead.

Yes I may look at headscarfes, I've bought a couple but they're quite flimsy. I've also bought some eyebrow stencils and makeup but hadn't thought to draw them in already, so thanks, will try that. My hubby said I look hot lol, which I really don't but we just try to get through things by laughing about it. Smiley Very Happy

 Thanks for advice Smiley Very Happy

 

EJ81
Member

Re: Beginning Chemo tips

Jules I put loads of weight on with my earlier chemos. I blame the steroids, they just made me crave carbs so I've done fat and bald! (Also some treatments can cause fluid retention so blame that too - it made me feel better!). Also swimming was always my go to exercise and I couldn't do it with a picc line. Don't beat yourself up about it too much but have a word with someone at your hospital if its bothering you. I didn't mind at first but it really got to me after a while as it was just another thing that stopped me from feeling like myself. Still can't resist tea and cake though!

I never felt happy with my wig but I found loads of lovely headscarf ideas on Pinterest. I got quite good at tying a turban in the end which was nice as it framed the face a bit more. I bought loads of cheap scarves so I had something in most colours to go with most outfits - primark does some lovely big ones that aren't too bulky but I also found lots online.

Also can't remember if someone has mentioned this already but it's worth starting to draw your eyebrows in as they start to thin (if they do) so you know where they are!!

 

Best of luck

 

Ellie xxx

Jules3005
Member

Re: Beginning Chemo tips

Oh Moijan, wish I could forget to eat ha ha, but I'm a proper foodie. But will definitely have to try to cut back now. I'm partly blaming my hubby and daughter, they think its better to be putting weight on rather than losing it, but I'm looky a little tubby now. Yes not sure about my wig, need to shave remaining hair now as its driving me mad. Me and my cat are competeing to see who can leave most hair/fur around lol, I'm winning. 😄

Moijan
Member

Re: Beginning Chemo tips

I have lost most of my hair too...but the wigs are so itchy arent they! Im wearing elasticated headscarves

much of the time

 

moijanxx

Moijan
Member

Re: Beginning Chemo tips

Hi, I have lost weight on my chemo. I think its because i sometimes forget to eat!

 

Well often have a late breakfast and a supper. However, i find i feel less hungry and have to force myself, which i quite enjoy!

Moijanxx

Jules3005
Member

Re: Beginning Chemo tips

Hi everyone, just wondered if anyone put weight on with chemo, I've just had my second one yesterday. But after the first one I was nibbling sweet stuff whenever I felt sick and have piled a load of weight on. I was doing so well lol, but now I just want to eat all the time. But its more like cravings for some things and not being able to stand the thought/smell of others. Help, I'm going to be fat and bald  😞  (hair nearly gone now). Just been out for the first time with my wig on. It felt so strange and I was very self conscious, my hair is so fine but all the wigs I tried are much thicker, ah well I'll get used to it. Hope everything is going well for everyone 😄

Jules3005
Member

Re: Beginning Chemo tips

Thanks everyone, I've just been for chemo chat and finally got appointments for picc line and chemo to start 24th August, was hoping for next week but my Em is off two days next week for her A level results so will get to have a couple of mum/em days before it all starts so it's all good. Hugs xxx

EJ81
Member

Re: Beginning Chemo tips

Hi Jules. Picc line does make it easier. They didn't even give me the option as my veins are non-existant just sent me for a picc. I used to get mine flushed on the same day as having bloods done to save a trip but then I had mine done at the GP's as there were several nurses who could do it.
Debs hope you're doing ok and it doesn't take too long. They do seem to vary xxx
Carolyn52
Member

Re: Beginning Chemo tips

Hello debs
Just think of that toxic stuff being shot through the veins as a loaded gun shooting the little uggers that have squatted in your body without permission.
Hugs xx❤❤❤
DebHummingbird
Member

Re: Beginning Chemo tips

How are you doing? I'm sitting in chemo x
Carolyn52
Member

Re: Beginning Chemo tips

Jules ..
You are not a wimp ! Some of the things we face would put the fear up the doctors / nurses if they had to go through it.
My nurse that does my blood monthly ..has to be sedated before she can face it herself!
It will b fine especially with good support You have around you

Stay with us ..we are always here.
Xxx
Jules3005
Member

Re: Beginning Chemo tips

Thanks Carolyn, yes that does help . There's so many things that I've never experienced before and being a bit of a wimp, I know now is the time to man up!! I've also got to inject anti sickness meds daily, think I'm going to be like a pin cushion 😄  But I've got the best hubby and my girl is my shining light and they'll help me through everything, they're worth fighting for. xxx

 

Carolyn52
Member

Re: Beginning Chemo tips

Hiya Jules
Once you get the first chemo under your belt you will feel better and be able to work a timetable with good and bad days.
The picc line will b a godsend to avoid hint the vein ..I had mine in 2004 but I think they position them better now so you don't feel them so much ..they have to b flushed regularly .I had mine in for six months.
Hope this helps
Jules3005
Member

Re: Beginning Chemo tips

Hi, I finally feel like things are moving along now. I met my oncologist on Tuesday, what a lovely man who made me feel positive, I'm going for pre chemo chat today, then hopefully will get date to start chemo. It's funny, I've been wanting to just get started but now the time is nearly here,  it's scary. I'm going to have picc line, wondering will I feel it there all the time? Been reading all your tips and trying to take it all in this morning (stayed away from forum this past week). Hope your first treatment went OK DebHummingbird. Hugs everyone xxx 😄

andrea_carts
Member

Re: Beginning Chemo tips

Hi Deb, I had my chemo in early 2015, it was for primary (not having it for secondary as they only found one bone met and took it out).

You've got some good advise already, I'd particularly remember the drinking water, especially after as it gets rid of it quicker. And ginger! my taste buds gave up and the only thing I could taste was ginger (ginger dark chocolate. Yum)!

My silver lining was not having to shave my legs or underarms for ages ! I have a nice collection of hats which I used and hair started coming back after 2nd treatment, I know it varies but mines now back to normal!

It's not fun but you'll be amazed how quickly it goes by

Let's us know how it goes

A X
Spudgirl
Member

Re: Beginning Chemo tips

Hi Deb

 

i am due to start on Docetaxel a week on Monday.  I say "due to" because it has been postponed once already because Christies phoned me about a trial.  For a few reasons the trial thing didn't work out so back at Plan A.

 

anyhoooo, when I had my last primary in 2014 I was on FEC.  

 

I know Docetaxel has some different side effects but a lot are similar,   FEC completely floored me for a week after, every time, but the chemo  nurse I saw for my pre-chemo assessment this time said it should not have been that bad and it could have been the dose was too strong for me (fat lot of good that did!) I was in Belgium when I had the treatment so maybe the language barrier meant I couldn't articulate exactly how it was affecting me, and to be honest I just assumed it was normal.  

 

So, a few of my tips .... Don't overdo it, even if you feel fine a few days after.  Try and eat.  I ate very little in "chemo week " which I don't think helped.   Be careful what you eat,  as you might go off it forever!   the first chemo I had, they gave me pasta in a tomato sauce and after that it took me about 2 years before I could even look at pasta again - just the association I suppose!  I was wondering if I could do it with chocolate this time round, see if it makes me cut down on the chocolate habit 😉 

 

I went off tea almost immediately, fruit teas were okay for a while until I went off them too.  I've bought some PLJ (the lemon stuff) to see if that helps, to out in water - as water started to taste disgusting too.   

 

Hair and eyebrows - I didn't care about my hair, I just wore hats and lovely scarfs tied around them at the side to give them a bit of body,  it was nice not having to blow dry my hair every day ;-).

 

My eyebrows mostly disappeared which was the thing I really didn't like.  I thought I had drawn them in well but looking back at photos, I now think it didn't do them dark enough,  this time I am taking a "before" photo of my eyebrows so I have a guide for how they should look 🙂 

 

xxx

 

EJ81
Member

Re: Beginning Chemo tips

Oh and I'm another Devonshire dumpling sorry! If you post in meet ups make sure you put Leicester in the title or you won't get many responses - it is a bit quiet on there anyway I'm afraid xxx
EJ81
Member

Re: Beginning Chemo tips

Hi Debs. I've had 4 different iv chemos so far! I two have liver mets. All of them affect you slightly differently. You have been given lots of good advice on here already. I would definitely echo the bit about the eyebrows! I went to a look good feel better afternoon where they taught us to do them which was good as I've never worn at lot of make-up. I still draw them on now. If you are likely to lose your hair - sorry can't remember which one you said you were on - then if you want a wig get it done before your hair goes.
Definitely take sweets and cold drinks as your mouth can feel funny. I used to keep some ice lollies in the freezer. One lady I met used to bring them in a thermos but I was never that organised.
Definitely drink plenty both before and after. I also used to bring cough sweets as one them made my throat tickle.
My main advice though would be to take it easy on the first cycle. I had a couple of ropey days on my first chemo then felt normal so walked loads, had days out, totally overdid it and then was totally flattened by the time next dose! It's frustrating (and I am rubbish at taking my own advice) but it does pay to pass yourself.
Good luck
Carolyn52
Member

Re: Beginning Chemo tips

Hiya debs
No my primary was 2004 and I had 11 clear healthy years ....I was devasted 2015 to get secondaries after so long ..I had forgotten all about bc by then and was looking forward to retirement and travelling ....not to be.
Sorry I live in Devon ...
Hugs xxx
DebHummingbird
Member

Re: Beginning Chemo tips

Do any ladies live in Leicester ?x
DebHummingbird
Member

Re: Beginning Chemo tips

Hello Caroline was yours secondary in 2004?
Carolyn52
Member

Re: Beginning Chemo tips

Hiya ladies
I think we are all different and have to rely on our oncologist to prescribe the best treatment for our own situation.
I have bone Mets to spine hips pelvis and my mobility is poor ..I use a stick and can't do more than a few aisles of Sainsburys . Some ladies here ..are swimming and walking dogs etc with the same dx.
I don't really take any pain relief ( apart from a hot water bottle !!) Some ladies take a lot so we are all different.
Chemo is the same ..had mine in 2004 age 52 and sailed through it ..although the hair loss was the worst bit ..some ladies have a lot more niggles .
But ..these threads will always be a good source of kindness and support through the dark times.
Hugs xxx
Moijan
Member

Re: Beginning Chemo tips

Hi Debs,

i had pre op chemo in 2001, plus post op chemo that year by choice as most of my L/N were affected.
my cancer is strongly oestrogen positive. And so after that I was put on letrozole, but at that time, I didnt have Liver mets.

 

after quite a few years on letrozole, my cons told me that I could stop as it was a new drug and they had no way of knowing what long term effects on the brain would be. So I stopped and the cancer came back....into my Liver and spine.

 

Now looking at yourself..from what you have shared, you have liver mets. My guess is that you are starting chemo because 'they' are keen to halt the bu**er in its tracks before it spreads further.
like these ladies, I went onto chemo after it went to my liver...

 

after the capecitabine failed, i asked to try Letrozole again- they let me, but it didnt work. i went onto Vinoralbine and that didnt work either.

 

chemo is stronger and hopefully this will stop further spread for you and reduce any current lesions.

I was 52 when diagnosed and am now 67...... And am just about to start my second cycle of Eribulin (chemo) because they say that is the next drug I am currently eligible for.

 

We are all different and the best thing you can do is to write all your questions down( I just hand over my ipad!) and ask them to elaborate/explain.....if that is what you want to do. lots of ladies dont want to know, but you sound as if you do.

 

i am having to re-explore my tips for myself. I can list some things here for you, but depending on the chemo, you may not need them all.

 

I used to take a flask of chopped fruit to work ( when I was working through my first chemo's) so I could nibble when hungry. Eat small frequent meals.

i carry anti sickness and anti diarhoea tabs, paracetamol, and canesten cream, .e45, femfresh wipes and spare knickers arounvd with me if im out /away from home for any length of time and im not sure yet about how I will be feeling on this chemo, so I got a friend to drive me last time to/from the hospital.

I still have my old wigs, but am seeing the appliances lady to get a new one, asap.

 

 I have bad veins so drink 1.5 litres prior to blood tests and Treatment.( I only have one avail arm as have lymphoedema) the other ladies may be able to point you towards a thread where a lovely chemo shopping list is helpfully set out...I just looked for it for you but cant find it....I noted down a few things from it tho;

like finding small handy packets of tasty foods, such as cottage cheese, dry Crackers, boiled sweets( I found some sugar free in Tesco, sweetened with Steviol) eg not large quantites as they fould get wasted.

 

also, for cracked red fingers, I dicovered 'Udderley Smooth' cream, very good but expensive and hard to source. I carry plasters around too. My nails have split and are a source of infection, so im trying to keep them short as poss.

 

i hope things go well for you, do keep us posted. I, like Carolyn said, feel I dont want to go through it again and im pretty scared as im now older...but I also feel priviledged as I am( currently) still here and some others arent...so  I  feel I owe it to them to make the best of what I have......

 

we are living in an interesting time period, hopefully al, will be revealed soon as they are making inroads into cancer.

 

love and hugs, Moijan

Waffles
Member

Re: Beginning Chemo tips

Hi Deb,
I was diagnosed with secondaries in bone a year ago and then in liver in December. I was on letrazole at time of secondary diagnosis having previously been tamoxifen before that.. Was switched to aromasin (and zometa) another hormonal treatment but it became obvious in December it had failed totally when liver mets found. Switched to Capecitabine an oral chemo and also denosomab for my bones in December which seem to be holding everything at bay. Also on long acting morphine and gabapentin for pain and adcal as calcium supplement.
Best wishes xxx
DebHummingbird
Member

Re: Beginning Chemo tips

Now I am wondering why I wasn't put on hormone treatment first instead of chemo?? I'm episode and her pod??
Carolyn52
Member

Re: Beginning Chemo tips

Hiya debs
I take hormonal pill letrozole , denosumab injection for bones and Adcal calcium.
As long as hormonal works ..chemo is not on cards again. Im nearly 64 and to b honest don't think I could cope with some of the strong iv stuff ... but I'm a wimp not like the other ladies here.
Hugs xxx
DebHummingbird
Member

Re: Beginning Chemo tips

Thanks loads but if you and waffles had chemi years ago what are you both having as treatment? Xx
Carolyn52
Member

Re: Beginning Chemo tips

Hiya debs
My chemo was twelve years ago but the thing I did was keep a daily diary of how I felt. As you usually have six or more over several months ..it helps to know your bad days during the cycles so you can keep a normal routine around it and plan things.
Loads of ice lollies will help too.
Hugs xx
DebHummingbird
Member

Re: Beginning Chemo tips

Thanks for that help mine are already thin lol I will ask when I go out xx
Waffles
Member

Re: Beginning Chemo tips

Hi Deb,

I had IV chemo 10 tears ago and the one thing I would have liked to have done was to go to a beautician to get shown how to draw eyebrows on properly. I know it sounds a bit vain, but I hated not having eyebrows. I had a great wig but I felt I looked odd without my eyebrows which fell out towards the end of my chemo. xxx

DebHummingbird
Member

Beginning Chemo tips

Hello ladies! I begin my treatment next thurs at Leicester Royal for multiple target lesions on my liver.I just wanted to ask you chemo warriors for helpful tips that you have found to help thank you xx