Hi suikem
I did have a go at the cold cap, but I was so emotional and it was just too cold for me. I think that was when I came to terms with loosing it all.
I have checked with Christies and indeed it’s normal for patients to have sore scalp. They have recommended low dose analgesia and no perfume or fragranced creams (e45) and a haircut short.
I think OH wants all three to happen with my hair! He doesn’t believe that hair can “hurt”. I am gutted by his response as I would be happy to get rid of it all now, as some research suggests having no hair could mean not as much pain.
Hi Stephie77,
I had my third FEC last Thursday, and just beginning to feel myself again. My follicles died about ten days after the first treatment, and the hair was sore (like it feels when you remove it from a too-tight ponytail, if that gives you any idea). I think it started to fall out at about 14 days. I did not try the cold cap as my onc is very anti (says it provides cancer cells with a safe refuge) and told me that it would not work for me as my hair was very thick and would insulate the scalp. Once the hair started falling out big time, we cut it short. It still hurt, so I used clippers without a guide. I was left with stubble, which was still uncomfortable, but have found that applying cocoa butter cream helped. Less of a problem now I’m further down the line.
Sorry to hear you’ve had so much of a problem with mouth ulcers. I was told to try fresh pineapple to help with soreness. Apparently there is an enzyme in it which helps with the soreness (also if you get nasty tastes in your mouth). My mouth problems aren’t as bad, but I found it helped keeping a glass of water handy and frequently rinsing the mouth. Water tastes foul to me at the moment, leaving a saccharine taste in the mouth. I’m drinking lots of herb tea, even though I don’t like the stuff.
i found my second week was the worst, due to digestive problems. Week three was much better, and I hope it will be for you, too. I also found that my first cycle on FEC was much worse than the second one - and so far the third has also been easier for me. Hope you have a similar experience,
please feel free to borrow my big stick (after I’ve used it on my family. Despite undergoing chemo, I still seem to be the only person capable of cleaning the loo and sink, changing the bed and wielding a Hoover. Grrrrrr)
Margaret
Hi Stephie77,
I had my third FEC last Thursday, and just beginning to feel myself again. My follicles died about ten days after the first treatment, and the hair was sore (like it feels when you remove it from a too-tight ponytail, if that gives you any idea). I think it started to fall out at about 14 days. I did not try the cold cap as my onc is very anti (says it provides cancer cells with a safe refuge) and told me that it would not work for me as my hair was very thick and would insulate the scalp. Once the hair started falling out big time, we cut it short. It still hurt, so I used clippers without a guide. I was left with stubble, which was still uncomfortable, but have found that applying cocoa butter cream helped. Less of a problem now I’m further down the line.
Sorry to hear you’ve had so much of a problem with mouth ulcers. I was told to try fresh pineapple to help with soreness. Apparently there is an enzyme in it which helps with the soreness (also if you get nasty tastes in your mouth). My mouth problems aren’t as bad, but I found it helped keeping a glass of water handy and frequently rinsing the mouth. Water tastes foul to me at the moment, leaving a saccharine taste in the mouth. I’m drinking lots of herb tea, even though I don’t like the stuff.
i found my second week was the worst, due to digestive problems. Week three was much better, and I hope it will be for you, too. I also found that my first cycle on FEC was much worse than the second one - and so far the third has also been easier for me. Hope you have a similar experience,
please feel free to borrow my big stick (after I’ve used it on my family. Despite undergoing chemo, I still seem to be the only person capable of cleaning the loo and sink, changing the bed and wielding a Hoover. Grrrrrr)
Margaret
Hi again Stephie-I’ve had 2 FEC so far. Please vent away thats exactly what we are here for!
I had a dramatic day at A and E having been admitted with a high temp and tachycardia. Thankfully bloods ok, temp went down, EEG ok and though I’ve still got a high heart rate it went down too. They are talking of reducing the FEC but I’ve asked them not to. To crown it all I have had a horrible allergic reaction to my PICC line dressing. Not the sunday I was planning but there you go.
sdfmeg-I can so relate to the loo cleaning issue and glad your chemo s/e’s are getting better
Morning September Ladies, seems like we are all having problems of some description at the moment. I have noticed that my heart seems to beat faster or I’m just more conscious of it and I feel like I’m shaking inside which when it gets bad makes my legs and hands shake visibly.
My second FEC seems to have followed a very similar pattern to the first, yesterday was awful, Lots of crampy stomach pains (constipation) which was just building up, had a nice warm bath which eased my tummy but sorry for this I then spent the next 2 hours on and off the loo and again this morning to the point of having a really upset tum again, exactly like last month, also have a headache and a sore throat this morning, I’ve increased my fibre intake, I’ve bought Flaxseed which I’ve been adding to a fruit and nut muesli, been eating granary bread and taking a senokot tablet at night but this is definately a problem for me at the moment. My tastebuds have had it at the moment, everything tastes disgusting and I’m not really eating enough fruit and veg but I just can’t, hoping things will improve in a few days but I feel pretty fed up with it all at the moment.
I shaved some of my remaining hair off yesterday, it’s not perfect but more comfortable, I put some almond oil on my scalp last night but if your scalp is irritated be careful what you use, maybe the Boots Aqueos cream might be an option.
Hoping we all improve this week, keep your chins up and love to you all, stay strong, we CAN do this. xxx
Good morning ladies, I’m doing T-FEC rather than FEC-T, so I’m learning what I might expect on chemo 4/5/6. My hair started falling out about 10 days after my first T. Luckily it didn’t hurt, it was just disgusting waking up with dead hair, bathing in dead hair soup, and finding it in everything I cooked. I did a home made crop in the bathroom mirror to cut it pretty short, about an inch all over and then when that got ratty I used the same scissors to cut it roughly to about 1/8 inch - as short as I could get it by putting the blades of the scissors against the scalp. At the end of the day it is my hair, is how I look at it. And my partner says I look really cute and have a lovely shaped head. For me I look in the mirror and feel scared and ill when I see it, so maybe that’s what your husband is going through. It is such a smack in the face - yes she is bald, yes she is really really ill. Somehow the hair loss really brings it home, makes it real. I’ve started using the second loo, with no mirror in the room. But at the same time, when we were out yesterday I took off my hat and sat there bald in the middle of a cafe. So I don’t mind other peole seeing me.
Re mouth ulcers - I ended up with bad oral thrush going all the way down my throat and was prescribed a mouthwash called antepsin. It is disgustingly slimy, but it really does work. You move it round your mouth for as long as you can and it gets diluted with saliva, then you swallow it slowly in little sips and it coats your mouth and throat. You do that an hour before eating and it really has soothed everything so it doesn’t hurt to eat - might be worth asking for it to be prescribed. The hospital pharmacist told me that there were lots of different numbing mouthwashes, but they were giving me this one because I had pain down my throat as well.
Re the chemo dose reduction - when I was in hospital with neutropenic sepsis the onc doctor told me that they were going to reduce the dose for me next time and I got really upset and begged her not to. she gave me a very interesting explanation: everyone’s liver is different and some are more efficient than others - say they want to deliver 80mg of the drug to the body - they give you 100mg because they know that the average amount available after the liver has dealt with it is 80mg. But if you have a very efficient liver then you end up with 90mg of the drug in your system, and that’s too much, so they drop the dose. The fact that I had no white blood cells and was running a temperature meant that I had had too much the first time, so by dropping the dose they were aiming at giving me the right amount for my liver to process.
Trying to make the most of my last 3 days of freedom before chemo hell starts all over again!
Sukiem, I’m sorry for your horrid day at A & E but I am glad your heart palpatations are being checked out.
Don’t panic if they reduce the FEC dose - maybe they would extend the course by one more treatment?
I am on 75% FEC over 4 doses instead of 100% over 3 doses. The same end result of treatment, but my Oncologist prefers to give it over a longer time at a lower dose so that the body can cope better.
Of course, this may be because of my other health issues, and my older age (52) but I am assured the end result of treatment will be the same.
They changed the dressing on my PICC line from the clear ones to a brownish pad. They gave me 2 to take with me for line care appointments as they said they are more expensive, so not often used and not always available. This pad has eased the irritation I was getting from the clear dressings, I hope you get some similar relief too!
Hi all
Niknak-the on call onc told me yesterday that fast heart rate is very common for people on chemo. The A & E SPR also told me that people with cancer also become hyper aware of their bodies and things that wouldn’t have noticed previously become anxiety inducing (eg heart rate)-how very true!!
Thanks for the info re: doses fiona508 as I had no idea about that but it all makes sense.
June-they aren’t sure why I was tachycardic although I was told my calcium levels were on the low side (I’ve given up diary). To be honest I think a significant factor was anxiety as my heart rate dropped to 80 shortly after I got home! With regards to my PICC they have put a loose dressing on as the skin was broken and theres a risk of infection, I’m also on anti biotics. The nurses couldn’t believe that I hadn’t noticed the allergic reaction as it was such a mess. I’ll ask about the other dressings too.
Just catching up with everyone’s posts and sorry some of you are having a hard time at the moment. I’ve actually been feeling very good. Have some vein pain but can’t say it really bothers me other than worrying they won’t be able to give me chemo 3 on Thursday. The nurse already suggested delaying it but I asked them to try to give it to me.
Hope your picc line is clearing up sukiem and also your heartrate is settled. It’s hard to know if the anxiety makes the heart rate go up, or the raised heart rate makes you feel anxious sometimes.
I had a lovely massage at The Haven today. The lady who did it used some different oils on my arms to stimulate bloodflow so hoping that will help with the veins.
Has anyone experienced aching joints and/or back pain on FEC, my right hip is killing me today and I’ve had a quite a bit of pain in my lower back.
How is everyone today? I’ve been feeling cheesed off today, fed up with my own company. All the family are at work or school and I’m sick of my own company, can’t really settle to do anything interesting I don’t have the patience at the moment, very bored. x
Know what you mean about sick of your own company - me too… Can’t concentrate on anything that requires attention, and am bored with TV rubbish. I’m feeling quite frustrated at my lack of creativity and lack of energy to even do the cleaning!
As for back ache - yes I ached a lot last session in arms and back, but I have ongoing lower back pain anyway. FEC did seem to make it worse, and my knees ached too. One night I didn’t know where to put my leg to ease the ache and ended up sleeping on the sofa with my legs raised over the arm!
Hope you feel less achey soon - try some ibuprofen. That is what was suggested to me by my Onc.
Hi I’m too a bit hacked off! Just feeling yuk all the time especially taste wise and had to go to gp as developed oral thrush everything tastes vile. Tired out and generally having a cant be bothered to do much attitude. School run comes round very quickly! And although I have had dozens of offers to do school run cant let this thing get to me…must try to keep pushing! Already looking at my calendar for chemo 3 and then ill be half way there! I am defo having a bit of a pity fest right now! Oh my OH admires my ‘lovely shaped head’ which is sweet I would rather have my long hair back! But it did remind me of how funny the thread is on thus site about well meaning people who say annoying things! Might be worth a look I’d you haven’t already…might cheer u up!! Love x
Hi everyone I hope you don’t mind me popping into this thread. I had my third Fec on 5/10. My first two weren’t too bad - I have had a sore mouth too and my chemo nurse suggested pineapple juice which has helped as well as that I gargle and rinse myy mouth with difflam mouthwash after every meal which is a pain but seems to have helped. I have been tired but managing ok up till last week. I have had really achy bones especially legs and back - feels like the kind of ache you get when you have flu. Went to the gp last Tuesday but was basically told to get on with it and take paracetamol and ibuprofen for the pain as this is perfectly normal on chemo. (I did feel like saying would you like to be in my shoes; coping with daily pain and feeling so crap you can’t get up the stairs, losing your hair, your job, your dignity, pretty much everything that makes your life normal, and having to watch your kids and your hubbie see you looking so poorly and so much like a cancer victim everyday that they cry, and then see if that is " perfectly normal" because it should 't be -but I didn’t. Just nodded and said “ok.”). Sorry rant over. Just wondered if anyone else out there having pain like this? The ibuprofen etc not really working and pain has been going on for 10 days now. I rang the oncology unit at the hospital again and they said pretty much the same thing and unless I have a temperature they don’t need to see me. Which is helpful, not! I am due to start Taxotere next Friday and I am dreading it. I have been told I will need to inject wih the Gscf injections for about 5 days post chemo (neuralsta?) to try to increase bone marrow production and reduce risk of going neutopenic. Everything I have read on the forums says that these give you bone pain so really dreading it. Has anyone been hit by the tax truck yet and how has it been for you - any tips?
I also agree with your posts about feeling low and down. I have had days like that recently. Some days I really haven’t felt great but have forced myself up and out of bed as I have to be strong for my 2 kids. I have no I interest in daytime TV at the moment -I find it too inane. I have spent a lot of time cleaning - sometimes like a crazy person just for something to do. Have lost the plot a bit. Have stopped working (used to be a registered childminder - not a good job whilst on chemo!) and this has been hard both financially and socially as pretty lonely. Just another thing cancer has done for me - the gift that keeps on giving! - well I would like to return this particular gift and no, I don’t need a refund either!
Sending you a hug Spookymoo - as it really sounds like you deserve one (((HUG)))
If you find a return to sender label for this particular ‘gift’… please pass on the address Well done for keeping going and trying to appear all is well even on the bad days. With your family to consider, it can’t be easy.
I don’t think GP’s really know what to say about chemo SE or what to do with us when we go in as directed by consultants if something else starts to hurt. My doctor admitted she didn’t know enough about my breast surgery (lumpectomy) to say if mine was healing as it should when it was still so painful and swollen, but she did spot that I had an infection!
When I asked if the Nurse at my GP surgery could do my PICC line care ( as asked to do by Oncology), it was like I had asked for brain surgery… it was so much more than they could possibly offer!!! Yet it is a simple task that could free up the Oncology nurses to do their other full chemo stuff. Some nurses do offer it, apparently mine doesn’t - but I am suggesting it to the practise manager.
Spookymoo - I meant to add… if you are taking paracetamol, make sure it isn’t bringing your temperature down to a normal reading. Try and take a temp reading before the next dose is due, just in case you do have some kind of infection and do need to visit oncology.
And I am not looking forward to T either, but the nurse told me not to predict aches and other SE’s as they might not happen with me! Hmmm, I’m trying to stay positive.
Good luck at easing the pains… try a head pad or hot water bottle perhaps?
June22
Hi June thank you for your hug. Greatfully received and reciprocated. So true re the GPs! I have a picc line too and when I asked about the procedure re “flushing it and dressing it weekl” they looked at me in horror saying “noooooowe we don’t do that for you.” eventually a district nurse miraculously appeared at my door one morning - lucky I was in - they must know once we get our big c diagnosis normal life ceases to function - we don’t go food shopping, or meet with friends or family, or go for a walk, or do school runs, or go to work - I have found trying to get a hospital appointment not at school pickup drop off time impossible some weeks. And I say to the receptionists “I have children, it’s parents evening - I can’t do that time, etc” and they look at me like I just came from Mars, saying “oh you have children…” as if that is not allowed on cancer too!
It is a pain that your local gp surgery can’t assist you with care of your picc line.The whole point of it is to make, in some small way, life a bit easier for us girls. We have enough to contend with and things should be made easier not harder so sympathise with you having to do an oncology visit every time. I am sure if it was the other way around they would be cheesed off too.
I have to say my GPs have been a complete waste of time with anything related to my situation. I think they find it more scary than us!
Hi niknak luv the fb Page. Sorry to have been ranting so much - I must sound like a right miserable old cow! I am going to blame it on (a) chemo and (b) have run out of wine! Will follow your progress on fb. Good vibes and hugs to all x
Hi Nicknak321, tried to reply on here earlier but the gremlins weren’t having it. Seem to have been sorted now. I’ve had some aches and pains but put them down to granocyte injections more than the chemo. Hips sore mainly at night and only days 5-7 seem worse. Also a random pain one side of my jaw - more at night but has happened when eating. For some reason thought bone / joint pain doesn’t bother me that much. It’s more sickness / gastro stuff that makes me feel rubbish.
spookymoo I’ve been doing granocyte at home injections even on FEC. Have them for first ten days of each cycle. OH does them because I’m not keen on needles. Although I’ve decided one of my ambitions is to be less scared of them. Feel the fear and do it anyway sort of thing. The needles are really tiny and you hardly feel anything and have to say it gives me greater confidence in my immune system knowing the stuff is boosting my white blood cells. You do get a few extra aches and pains but I haven’t needed pain killers. In fact, the only pain killers so far have been for a headache and period pain (my onc told me periods can be worse because you bleed more due to low platelets).
I think with (some) medical people they are so used to seeing people with worse things that they sort of lose sympathy with pain and discomfort that doesn’t involve writhing around on the floor. Some really could use a little more bedside manner. It’s amazing how far a little bit of empathy goes.
Sorry you are having a bad time at the moment. Hope it gets better soon.
Nicola x
Hi Spookymoo and welcome, sorry you’re having a rough time too, I think we are all suffeiring at the moment.
We have a facebook page if you are interested.
Hi Spookymoo, you rant all you like, can you still drink wine? I tried a drop earlier and I may aswell have been drinking paint stripper! It was alright the end of week 3 last time so fingers crossed!
I’ve been a miserable old b**ger today, walked my dog late morning, which was a real effort, met this woman who I probably haven’t seen for 10 months and because I was all wrapped up and in my new furry hat and sunglasses she didn’t recognise me, She said ‘You look different, what have you done to yourself?’ I told her what was going on and then when I carried on walking I burst into tears, I’ve felt really vulnerable today as if everyone was looking at me!
x