Thanks for the tips. I start my chemo this Thursday. I am making a shopping list from the items you mentioned.
Strangely, I never thought of the sore or cold scalp, deffinately going to get the sleep cap.
have any of you any tips to help stop the burning in my throat ?- it so unpleasant. I had heartburn when I was pregant but this is a bit different... just pure burning pain moving up into the bottom of my throat. It made swallowing very hard and I know that I didn't drink as much as I should have the first week coz it was so unpleasant.
It was worse with my 2nd epiribican session ... and into day 10 is easing off a lot... but is there anything I can do to ward it off for my next chemo - I still have 2 more epi to go.....
I got one at the start of my chemo from Poundland, and its still going strong 6 months on, Real Bargain!
Thanks for all the tips, I found this useful, being one who loves a bargain, I will share this with you all.
I followed Kelly's tips about thermometer and wrist bands, from Boots, I then went into Poundland after making above purchase and yes you have guessed it they had them for a Â£1, I cannot see that they looked any different, so thought I would share this with those of you who like a bargain.
Hi to everyone. I am on my first round of CMF following 4 EPI's. I have ulcerative collitis which has been really bad during the EPI and onc worried that I will have a bowel prolapse if it continues but we decided to try the CMF and hope I will be able to continue. I don't want to stop now that I am half way there and gone through so much. Seems CMF causes either constipation or the other so it's good to know that there are tips on here for both events. At present I am constipated and taking small doses of lactulose, fruit and veg in the hope of regulating things and hoping for the best there will be no collitis. I am on my own at the mo as my poor hubby went into hospital last Monday with a perforated bowel following a colonoscopy aaaaaargh!
I am thinking this is good practice for my dotage - having no money because my sick pay has run out - worrying about the heating bills because I have the heat and the fire on to keep out the chills - feeling like I am living in a bubble on a parellel universe - no hair and feeling pretty frail - but worst of all thinking and talking about bowels and how they are going to react LOL WE WILL COME THROUGH THIS
Best regards to everyone - great to know you are all out there extending your care
Hi Anabelle & all,
I suffered terribly with stomach cramps and diarrhoea on E-CMF (well, the CMF) to start with. I used to eat a lot of fruit and a high fibre diet but obviously this only aggravated the situation. So, for the first few days after each CMF dose I ate a very low fibre diet and had no fruit or anything. I know this isn't ideal but it was only for a few days and it worked a treat. I never suffered again!
Just keeping this one going as the tips are very useful as a referral as we are going through different treatments and side effects. I have recently had my second dose of the second cycle of CMF - only 2 more cycles to go - hooray!! Well, as Mrs smug I was coping very well until last weekend when the diarrhoea caused by the chemo kicked in and I was on the immodium for 2 days and didnt make any difference at all. Then the cramps started and I found them very painful until I called the doctor in yesterday and he prescribed some codeine tablets. They immediately stopped the runs and cramps and I had a lovely nights sleep. He did say that I wasnt to take them for too long as they can cause constipation, but does any one know how long I should take them for? They definitely relax me and I feel nicely chilled although I read they can be addictive so I will be extra careful. I was wondering how to prevent this happening next time i have my chemo.
Any advice would be helpful, thanks
A very chilled, Annabelle xxx
I went to see my GP when I was feeling low and miserable and got a referral to my leisure centre for cheaper use of the fitness suite and swimming pool. It is great to get out of the house and do some gentle exercise. It is supposed to be for 9 weeks but as every 3rd week I can't get in they will add it on to the end of my session.
Might be worth asking at your surgery in case there are similar schemes in your area (I live in West Dorset).
This is a great idea, thought I would add a few things now I have just had chemo no 5 which passed by OK compared to no 1;
I bought myself a V pillow after no 1, I had 4 days in bed and couldn't get comfortably propped up, its made a big difference to subsequent ones.
I used cold cap for 1-3 but couldn't cope with it anymore [felt sick thinking about it, and also gets colder as your hair thins]. I was all ready to shave it all off but as its already short I seem to be managing the hair loss by not washing very often, and wearing a buff/hat in the daytime, but I feel less self conscious by having a fringe and bits poking out the side. I don't feel I need to wear a wig yet [ my wig looks very wig like on my head!]. I know that I will have another major loss just before no 6, but then it will only be another month or so before it starts growing back for good. Somehow this seems more manageable than facing 4 months with no hair.
One more personal thing which has helped - I have a greyhound who is undemanding but always willing to go for a walk, short or long, and keeps me company when I am too ill to go out. After each chemo I feel like my aim is to get out in the fresh air, and build up my stamina again. When I see her running it never fails to bring a smile to my face. I know this is not for everyone, but I put it here as its about finding ways to pull yourself back after each treatment and try to increase energy levels, and feel yourself again.
Good luck and take care,
Have only registered today. Its good to know there are others out there to speak to. I am going to try some of the tips especially for sickness. I have just had my 3rd cycle of E-CMF. Have really suffered from nausea have to take anti sickness tablets until the end of week 2. Am now on my third different type as the others didnt work. Even though i drink lots of water and fruit juice i always have a very dry mouth which also makes me feel sick.(This is a commom side effect form the anti sickness drugs, so i am told) Its a vicious circle though. Any more tips ?. I have just text my daughter to get me the travel band from Boots as anything is worth a try. I am very often sick before i get the chance to take a tablet and struggle to brush my teeth and use mouth wash as this starts me off too.
Sorry to sound like a right moaner but no one else i have spoken to has had the nausea as bad or last so long. I am not a hypochondriac honestly !
I was in a similar position-had a wide local exicision and then removal of lymph nodes because sentinal node biopsy said there was involvement-luckily other lymph nodes were ok but I was expecting radiotherapy for next treatmnet so was thrown in to confusion when oncologist offered me chemo-said it was my choice.Didn't hesitate initially because felt I should take everything available .offered.So far I'm doing ok-have to keep reminding myself that all the aches/sickness etc are about the medication.Just on a week off from capcitebine and only 3 more lots to go.There are so many people in the same position it helps to remember this.
This is what I have been looking for
have had 3 ops over the last 2 months, started with lumpoptomy with lympth node clearance,then WLI and finaly bye bye boob. am glad that they tried to keep my boob it has made it easier to accept it going.
I now have to decide if I have chemo.am 90% certain I will. it was easier when I was told by bs that I would be having it, the onc said it's up to me. have till 15 nov to decide.
ohhh its realy weird putting this in writing.
These pages have been realy helpful,its good to know I am not alone and many of you are going through this too .
I think the hardest thing was telling my mum & was glad 1 of her sisters was staying with her (she had had masectomy years ago)
thank to you all
the stupid comments are great realy made me giggle
ps escuse spelling the spellchek wont work
I've jusy completed 4th session of epi and am now on oral capecetabine(on tact 2 trial) but like you was very sick after my first chemo-but do tell them-I had a super anti sickness drug prescribed for me to take1 hour before treatment and then for the 2 days following which cured all the sicky feelings.I also did the cold cap and have managed to keep my hair-although thinned but everyone assures me its ok.The only disadvantage with the cold cap is you have to have it on a good hour before treatment and two hours after so it does prolong thing-but worth it I felt.
Another tip for anyone using the cold cap-use the migraine patches you can buy at chemists on your brow -it does tend to alleviate the initial discomfort of the "freeze"
thanks for the info. had my first EC on thursday, being good and doing what I am told for a change, lol, how ever was sick as a dog yesterday. Was real disappointed side effects kicked in so fast, was told it would be 48-72 hours.
I have 3 more EC to have and then 4 taxatere (?spelling)
Your tips are brillant, I will try to remember them.
Keep them coming, anything that helps us deal with this treatment is nothing but a bonus.
Nothing much to add, but just to tell you that I prepared by making myself a 'chemo caddy'. Just a basket with a handle which had been delivered with some little pot plants in. I put in all the things i thought I'd need, so i could have it by the bed upstairs, or carry the whole lot downstairs to crash in front of the tv. I put in edibles (ginger bics, minty chewing gum, root ginger to nibble), treats (nice hand cream, chocolate, an octopus-shaped back massager, nail cream and buffer) , essentials (tissues, glasses, lipsalve, bottle of water), a straw (in case i couldn't lift my head up from the pillow) and a little bell (to summon the family if i wanted something fetching or a cup of tea!). It might sound a bit over the top, but it helped me feel more prepared and it felt a bit of a treat.
Good luck with the chemo everyone
Thanks Kelly for these tips, i have printed them off for future reference as i start my EC chemo next Thurs.
onward and upward ladies/gents 🙂
Thanks they are really helpful tips.Thanks for taking the time to send them to us.
I haven't anything extra to add.
Just had number 3 FEC this afternoon and I think it was really helpful to eat before hand. My next is at 8-30am not looking forward to that.
The best think I have done is to talk to ONC about side effects of drugs and have them changed top more suitable ones. Also call out out of hours service if required ASAP don't let yourself suffer if you don't need to.
thank you everyone. I've printed all this out and it's now in my macmillian book ready for the big day. Will get my results from hopefully final surgerywise next Thursday. Next stage please!!
I am finding I love my Buff headwear for days and nights since losing hair.... so comfortable and no seams! Just google them and you can find them if interested.
i did the cold cap but no luck for me - looking like i've had a very bad head shave possibly due to the presence of lice. onwards though, i'm off to get a wig this morning and have got come bandanas and hats which don't look too bad i think. why not try the cold cap though - it does work for some....
Ive had coldcap, just had number two and it hasnt been that succesful to me unfortunaltey but it does work for some ladies as you can see above.
Its worth a try.
I did 3 x FEC with cold cap - still have almost all my hair (v.v. small bald patch on top) - starting Taxotere this week, so unsure what delights that will bring...but I think if you are worried about losing your hair, then you should give the cold cap a try. All I can say is try and make sure it fits tightly and touches as much of your scalp as possible - that does make a difference.
I have had only 1 dose of Epi so far, and 3 more to go, followed by 4 lots of CMF. I felt nauseous for the first few days after, even with the domperidone for sickness, although I wasnt actually sick anyway. After that it has subsided and my appetite is definitely back! I found the ginger biscuits worked for me and this week mymouth is a little sore so I am rinsing with Oraldene they gave me at the hospital and it is working, as well as fresh pineapple and I have found out some old ice lolly moulds from the bottom of the cupboard and made some pineapple juice lollies. I will probably have one tomorrow to keep my mouth fresh. It tastes of old socks at the moment, but that could be the afteraste of my lemon meringue pie! I think if you eat smaller more regular meals, it helps keep the nausea at bay. My scalp has been sore this weekend, although I did have the cold cap and will use it again when I have my second dose a week on Tuesday, I have had a wig courtesy of my hospital which arrived on Thursday, so at least I can wear that if my hair falls out anyway and even wear a hat ontop if I feel conscious of it. At least I am partly prepared, I think.
Goodluck there Lenise
Apologies for the late reply, I didn't keep up with this thread very well.
Yes, I did lose my hair 2 weeks after first FEC. Cold Cap used, it can work to freeze hair follicles (I think that's how it works) and some people can retain their hair. The E bit of FEC (Epirubicin) is the thing that causes hair loss I hear.
the 'cold cap' helps to prevent hair loss/thinning. The Epi you will be having as part of your FEC chemo is the one that causes hair loss. It usually comes out a couple of weeks after the first dose, mine actually came out 2 days after the second dose though.
Anyhoo, personally I chose not to opt for the cold cap as generally you have to keep it on your head for quite a while before and after and I like to get in and out as quick as poss!
I know there are loads of fellow forum users that have tried the cold cap so I'm sure they will give you loaad of advice. I know it deosn't work for everyone but if you fancy it then its defo worth a try,
This thread is great. I had 3 FEC and have now had 9 taxol with 3 to go (weekly fun....!)
I would agree with everything Kelly has put above, especially about the mouth and eating before chemo. I had a very alarming night of crazy dreams on the steroids when I took them too late so defo early better.
On FEC I felt pretty sick. A top tip for me would be don't think you have to and suffer in silence. I threw up for 24 hours after my 2nd, and they took me in and gave me anti sickness through IV which worked a treat and told me I should have come back much earlier. They can sort your drugs to sort your sickness so please don't sit and home being poorly and not call them up for help.
Taxol is making my hands and feet odd - rashes and a bit sore so lots of v lovely gentle moisturiser is v good.
Also, defo agree with Kelly about the constipation (oh the things we share on here!!) I have nice cereal and juice too and stacks of water.
On taxol about 2 days after I get spots like I'm 13 again. Yuck. But as skin is sensitive have found is just better to live with them then try and put anything on to get rid as it made skin v dry and red. Drinking juice and lots of water helps.
Thanks for the tips, I don't have a date for chemo yet as next week I have a bone scan and a PET scan before starting treatment but I will make sure I try your tips.
As a new to chemo girl thank you so much for your thread.
I can only add that I was advised to take aloa juice to help boost immune system but have only had one chemo so far EC with no side effects yet as it was only 2 weeks ago.
Still have my hair but scalp soreness starting so was told nioxin shampoo might help and it has. I use a childs first toothbrush because we had a new one in the house and it seems to be doing the trick plus loads of hand washing and moisturiser after.
only 3 more EC to go the 4 Tax, so will let you know how I get on with that.
Take care everyone
What does a cold cap do?
Cecelia did you lose your hair with FEC? I haven't got round to asking yet - when you go in to see them you can only ask so many questions at one time and take in the info they are giving you.
Love Lenise XXX
Hi Lenise & Jewjew
Kelly's right, I'm on FEC and the combination is as she says. But without her M!
Wow Kelly you've come up with some really helpfull tips,
can't think of much to add!: possibly
keep out of direct sunlight as it seems to make one feel more queasy
keep off booze for the two or three days following chemo - it definatly makes the nausea worse
stick to a sort of pregnancy type diet - ie no unpasturised dairy stuff, wash all veggies well and make sure meat is well cooked
use the thermomiter - helps to distinguish between a hot flush and an infection
try the cold cap - dosn't work for everyone but I was really very pleased it did for me
I don't have much to add - I think I used most of Kelly's tips though!!!
I found fizzy water or tonic water was really good for the nausea. I also kept the ginger biscuits near my bed and nibbled a bit before getting up in the morning otherwise I felt sick when I stood up.