My chemo has been delayed for more surgery to be done, so I wanted to say I hope thing go well with your ongoing treatments
Yes, I've had people offering to make food too, it's so thoughtful of them
Bookishgurl: yes, as Sal said, the nurse sat with me too right the way through my FEC being administered; they generally use cannulas at my unit so they asked me to tell them if I experienced any discomfort at all and if so checked that the cannula was working correctly to prevent any leakage into the surrounding tissue. They took quite a lot of care to get a cold cap that fitted tightly (in the unit I attend they come in extra small, small, medium and large) otherwise it is not as effective. It has a plastic under-cap with a strap that goes under your chin and then a material outer cap with a nossle running down to the machine. I found having the headband meant it didn't dig into my head as much as it would have done otherwise. You should be fine to wear earphones. I put my glasses on too but they couldn't fit behind my ears because of the cap, they had to just kind of hang off my nose! They sprayed my hair with water and then put some condition on it before putting the chosen caps back on and turning the machine on. The cold water circulates around the cap and, just as others have said, it was really cold for the first 15 minutes; it then felt really heavy and then I just got used to it or it eased, I'm not sure which and it wasn't so bad. I had to have it on for 30 minutes prior to the administration of E and 90 minutes afterwards however they gave me FC first so I didn't have as long to wait so they might be able to give you your C before your E to speed it up a little for you.
The same as with Sal they also gave me steroids and anti-sickness, although as oral tablets, and a bag of saline and the pharmacist came and went through the anti-sickness and other tablets they gave me to take home while I was cold-capping and I've remembered to take them correctly so far! Self-injections begin tomorrow night Days 3-7!
Main side-effects so far have been the rose pink to pink wee from the E - same as with Sal I was already having pink wee when I went to the toilet on the way out of the unit. I had my chemo in the morning yesterday and felt okay until about 6pm last night when I started to feel nausea so I took the evening anti-sickness tablet however continued to feel nausea until about 9pm when I remembered about the additional prn/take as required anti-sickness medication they had given me and that did the trick, so definitely use it if required if you get given any, I could feel it burning/dissolving in my stomach after I'd swallowed it and then the nausea started to wear off and I was able to get a decent amount of sleep last night between trips to the bathroom due to all the extra fluid I'd been drinking! I had lunch fine yesterday, but didn't eat yesterday evening apart from some cheese crackers with the prn medication. However today I've not felt any nausea and have had smaller than usual but still regular meals and felt a good level of hunger. As Sal said, I've tried to drink plenty of water, to flush out the system, and have also been for a short walk both days to try and keep mobile/active. The crummy side-effects can be more in Days 3-6/7 I understand so I'll see how I find those.
Hope the description of the cold capping etc is of some help, even if they do things slightly different at your unit it'll give you some idea of what to expect.
Thats really kind, I would have cried too! Our staff made me a pamper box - it was huge! I'm glad our school cook didn't make anything for me - her food is inedible!!! What do you do for a job?
Glad that you are feeling better Sal. I think I am the last one to start chemo.
By you ladies detailing your honest experiences it is so reassuring for people like me who are waiting. - thank you so much . They are really helping.
Tomorrow morning is my last day at work as I am having my PICC line fitted. I have an Echo and then chemo advice/training Monday /Tuesday . I just want it all over and done with now.
Today the school dinner ladies made me a load of my favourtie vegetarian Mousarka for freezing for when I don’t feel so well. I almost cried. Such a thoughtful gesture.
I'm back! Had a few days when I didn't want to talk about the whole thing, but I have got over that now. I'm a week down after my first chemo, I'm ok, just a few niggles now. The worst one is a gripey tummy, the constipation has cleared, but I'm left with a few aches and extreme hunger! Other than that, I can't believe it happened!
Bookishgurl, I had FEC which is 2 parts the same as yours. Yes the nurse sits with you. Once you have the cannula in they flush you through with a saline drip, then I had a syringe of steroids and a syringe of anti-sickness put in. Then they leave to flush through again with the saline. Then they will doe the E and the C. The E is very red, I went to the loo part way through and my wee was already red. That lasted for about 2 days. My bigest piec of advice is to drink lots of water prior to going and then afterwards. I have been aiming for 2 litres of clear liquid a day, predominantly water. I think it helped with my recovery. Then they give you your drug goody bag and off you go! I found it all a bit surreal. I was meticulous about taking the drugs, I did exactly as I was told I didn't feel sick at all, but I did have my poo issue! I really hope your cold clears up. Good luck.
glad you are ok. Thanks for the info on the cold cap makes me feel loads better. Can you wear glasses /use ear phones? I’m not having FEC. Just EC. Then T. I’m sure they said with EC nurse sits next to you with a syringe. Is that what happened?
i had my eyebrows microbladed last night. Hurt but they look quite good.
My cold is getting abit better. Less watery so it is manageable.
Let us know how you get on today
How's your cold Bookishgurl? Hope you're managing to put some effective remedies in place so you're feeling a bit better by next week, Alderney x
I survived the cold capping yesterday They find the right fit for the plastic cap and the material cover, then they sprayed my hair with water and put conditioner on it and put on the cap and cover and attached it up to the machine. As has been mentioned, it was the first 15 minutes that were the worst, then it just felt really heavy and then it slowly eased off. I needed to have it on for 30 minutes before they could give me the E of FEC however they started me off on the treatment giving me the C and F first and then gave me E after 30 minutes. And then I had to keep it on for 90 minutes after I'd finished receiving the E of FEC and, after that, I gradually massaged and took off the caps rather than ripping it off. They may do it differently where you are, but at least that may give you some idea of the process. I felt nausea for about 3 hours yesterday early evening but have felt okay so far apart from that although I know it's generally Days 3-6/7 that have the crummy side-effects.
I’m sure someone has a bloody voodoo doll of me. Full of cold and 1 week until I start 😡
Alderney I looked up the look good feel great workshops mine is about an hour away in Maidstone.
Reallyzeb - I'm getting the nurse to come for at least the first injection too! Taking blood pressure has been about my limit up to now!! x
I found out today I'll also be getting the colony stimulating factor tomorrow for 5 days - not so sure about self-injection but am sure it will be fine once I've done the first one! I'll let you know how I get on with them though.
Bookishgurl - the nurse I saw at my pre-assessment today was more positive than my oncologist about the good effects of cold-capping. The nurse also told me about a Macmillian cookbook "Recipes for people affected by cancer" that we can get through our information centres - a practical title but there are starters and snacks, main courses, desserts and drinks and smoothies and they are colour-coded to meals which are suitable for people with a dry or sore mouth, sickness or nausea, loss of taste or smell, loss of weight or appetite - I also have a copy of the Look Good Feel Better UK workshop locations and telephone numbers if anyone needs to know them.
I’m definitely allowed to use my £72 wig voucher to go towards the cost of a more expensive wig so I’m not sure what’s going on with your salespeople.
I have ordered one that costs around £200 plus a couple of much cheaper fun ones from Amazon too. I’m not coldcapping as I don’t want the bother, I’m just committing to dealing with the hair loss, which has already started. Last night I was awake most of the time as every hair follicle everywhere seemed to be itching. 🙄
I should be starting 5 days of immune boost injections today but have yet to be told when the district nurse will arrive to do it - too much of a wuss to do it myself.
My hair is frizzy too, I just leave it to dry naturally otherwise it blows up a storm! I was using Tresemme keratin smooth shampoo and conditioner which seemed to help it calm down a little however more recently I've been trying out a paraben-free shampoo!
I meant to say about the parking, at my local hospital you can put the minimum parking fee in and they don't charge you if you go over your time so it might be worth finding out if it's the same for you? It might depend if it's hospital parking or a private company? Also at the car park outside the local chemo treatment centre you don't have to pay parking however it's almost always full! However if you park elsewhere they advise to put a note above your parking ticket stating chemo patient and even if you go hours over your parking it should still be fine. Might be worth checking whether it's the same with you, at least until you get your parking permit?
Hope you're feeling better soon Jo, I'll let you know if I get offered the injection however no-one has mentioned it so far.
Bookishgurl, I know how the system works in my local area but I'm not sure if it's the same nationally. Others might be able to advise? We can get an NHS voucher for up to £71.99. However the ladies at the wig salon advised me that I can only use the voucher with a wig for £71.99 or less, if the wig costs more than £71.99 e.g. £81.99 I can't add the extra £10 to the cost of the voucher, I have to pay the full amount. Seems a bit of a daft system to me! I can't actually remember if the wig I chose cost £98 or £112, however they were both actual prices of wigs that I tried on and I paid a deposit of £20. I'm going to ask about the NHS voucher when I attend my pre-assessment appointment tomorrow and then buy a second wig which costs £71.99 or less. The ladies also sell a kit for looking after your kit which they said cost £40, we're going to go through it all next time so I can tell you afterwards.
Happy that you have found a wig Alderney. My hair is a blonde curly mess. I was looking at it earlier thinking why am I trying so desperately to keep this, it’s dry, had frizzy parts is completely unruly .... It has to be brushed when wet of it turns into candy floss. - But it is me. How much did it cost if you don’t mind me asking?
Do we get a wig with the NHS? I’ve not had my chemo training info session yet. I can’t wait for the parking permit it has cost me a fortune in hospital parking over the last few months.
Jo - Sorry to hear you are feeling unwell. I’ve not heard of that injection. I hope they get it sorted out for you soon.
I would like to reassure you about how you will look after your mastectomy. I had mine in November. I had an immediate reconstruction with an implant. Once I have a bra on you really cannot tell which is which it looks perfectly normal. Obviously without a bra the new one stays put where as the natural booob does not. But then I am 65. I am a 36 C cup.
As for chemo I only managed one round as I had neutopenic sepsis and was very ill. My risk outweighs the benefit for me at my age so I am now taking Letrozole hormone tablets. But unfortunately one round has resulted in total hair loss even though I used the cold cap.
Ihope you are feeling well. I take them in tablet form. I take a multi vitamin but the calcium and vitamin D ones are together in a separate tablet. I think vitamin D helps with the absorption of calcium. I was on the depo provera contraceptive injection and I started taking them to help with reduced bone density which is one of the side effects. Now I’m on a vegan diet I’m hoping it helps with that too.
i bought myself a pill box with labelled days of the week so that I know what I’ve got to take thought it would be handy once Chemo starts .
Lol I sound like a right pill popper. I just think most things are worth a try. I wanted to try and get my body in a decent condition before chemo sucks out the goodness.
Typically cos it’s me, I’ve had a rough ride with the first chemo. I was fine during but after a couple of hours at home I got the worst nausea and vomiting. I was back at hospital last night as it appears ondansetron had interacted with my antidepressant completely spacing me out and I was also brewing a cold. Today I still feel completely wiped out and weak. Is anyone else taking colony stimulating factor by self injection? My oncologist gives it for a week after chemo and I’m wondering if it’s that which is making me feel so ill. Anyway bloods and temp normal. So far no hair loss but I’m waiting for that in week 2 . Tbh I hate my hair now I’ve cut it short so can’t wait to start using my wig.
I did have a bit of a moment tonight. My boobs were always my best feature ( it’s not the first time my cracking rack has got me into trouble!) I’ll be having a mastectomy after chemo and suddenly thought that the scars may stop my cleavage flashing go to style regardless of how good a recon I get. All at once I just wanted everything back to normal like it was a few weeks ago. It’s such hard work keeping positive. Has anyone else had a rough time with chemo? Any tips? Jo
I have glasses too, and auburn red hair that has a complete mind of its own! I went with a friend to the wig salon which my breast care nursing team recommended and the two ladies there were lovely and really helpful, picking out potential wigs for me and listening to my comments about each one and modifying their ideas accordingly and with their help I was able to find a style which I felt happy with. I'm just waiting for the same wig to arrive in another shade so that I can choose which shade I want. I know what you mean about hats and scarves, I've never been a hat person although that's partly because my own hair is so unruly that once I've worn a hat I can't take it off without my hair looking a complete mess! However I feel better having taken the plunge and visited the wig shop and I think I'll probably stick mainly to the wig and not worry too much about hats and scarves, although I'm thinking maybe I should get a second one as I've noticed a lot of people get more than one wig.
Out of interest, do people know of anyone with red hair who has lost their hair during chemo and, if so, what colour did it grow back??
And yes, thanks for the advice on the headband Dawn, I'm going shopping after my pre-assessment appointment tomorrow and have put a headband on the list
Hi girls Im from Feb thread and just want to let you know that I am due my second FEC tomorrow and currently I have lost no hair as I cold capped. Just make sure you are really fussy with how it is fitted and make sure it is tight on the top of your head. Good luck x
Thanks for the advice re the headband.
It is interesting how different all our treatments are. I know we all have different grades and types and it is prescribed specifically for us. I just wonder how much is consultant preference /cost. I am trying to take s practical approach and be as prepared as I can beforehand.
I wear glasses and always look silly in hats. I think scarfs will be the same. I’ve looked at a few wigs online.... it’s all quite daunting.
Bookishgurl and Alderney, I cold capped last time through 3 x FEC and 11 weekly paclitaxol. The first 10-15 mins are the worst but you soon get used to it. I used to take tramadol half an hour before the cap went on and that really helped.
There's different types, the one I used had the cap attached to a refrigeration unit. For best results put the cap on at room temperature then as it cools it moulds to your head better (rather than putting it on cold). Take a thin headband to protect your forehead and ears.
My hair thinned by about 50% evenly across my head. It started growing back during the weekly taxol - that's another reason for me not using it this time, I'm optimistically hoping that I won't lose much hair this time which may be foolish but we'll wait and see. I've got a selection of hats and going wig shopping next weekend. I've still got my old wig which I only wore a handful of times, I don't like it anymore but might see if the hairdresser can restyle it for me.
Bookishgirl- Thankyou for your advice. I’ll speak to my oncologist and hopefully he’ll have the same view
will also take up your tips on what to buy for my chemo bag
You can buy it in sainsburys , Tesco etc. I bought spray, gum and Losengers from Savers where it was about £4 , £2 etc They are just for my chemo bag. To have as and when
i told my onco I was taking vitamin suppliments, calcium and vitamin D, iron , tumeric - she was fine and said I had done my research . She also said she wished every patient took calcium and vitamin d as when they did bloods so many people were low.
i am also on a vegan diet - I’ve been vegetarian for most of my life. Going vegan wasn’t much of an extra step neither was giving up alcohol for abit .
i drink green tea anyway don’t think it will make much of a difference as only have a couple a day.
cbd oil she said there is loads of interesting articles on the positive effects . It wouldn’t hurt me. She said all the life style changes are good in addition to medicine ( chemo etc) but not cures in their own the cbd is supposed to help with nausea as is smelling peppermint oil
I’m willing to try herbal/natural remedies the way I look at it most medicines originate from plants so the cure is out there. I do check everything to make sure it won’t cause problems or interfere
where did you get the rescue remedy from please?
also, what does your oncologist say about the CBD oil? How does it help whilst undergoing chemo?
Udder cream with extra urea from Amazon as riverside dawn says, it’s a saviour on dry skin when nothing else works. On the cbd front or green tea, my onc told me to keep off them and the turmeric till my treatments were completed, please just check with your teams you don’t want anything interacting with the chemo 💕💕✨✨Shi xx
I'm going to try cold-capping on Tuesday too, Bookishgirl. I guess it's different for all of us: my oncologist advised that it's likely only to delay my hair falling out however I'd still like to give it a go even if only to delay the inevitable I have a wig on order ready too and have bought a couple of hats however I'm generally not a big hat wearer as they have never really suited me, they're all too big for my head! So I might try out some child-sized ones if I can find any that I like, lol? Thanks for sharing your experience of how you found the cold-capping Daffydilly. And thanks for the handy tips on hand and nail creams and drops, riversidedawn They always start with cannulas locally and then fit a PICC line if needed, I asked about ports at my last appointment however they don't seem to use them locally.
Im from Dec thread and have cold capped through 5treatments so far. The first was the hardest, but if you can grit your teeth for 10 - 15 minutes, it becomes doable. 2-5 sessions weren’t so bad but still better after 10 mins. I think the first one was too far forward as it pushed my glasses into my nose which hurt!! I think the thicker your hair to start with the better the results. Mine was very fine to start with so very thin now(about 50% loss) but I still find it easier than being completely bald.
Good luck with everything and it’s definitely not vein -lots of us have found hair loss the hardest part.
I have my picc line fitted on Thursday . I did originally want a port but my oncologist said she thought port would be best for me as less scaring and longer to put port in plus only male staff and I prefer women.
She said that that she insists on picc or port as the chemo drugs can burn your skin and damage your smaller veins and make them collapse.
I am going to try the cold cap. I know it is going to be in pleasant. My Onco. said she tried it and could only manage 3 minutes. I know a lot of people think it is vain. To be honest I’m not very confident about my appearance. My boobs and hair are actually 2 things I quite like.
Ive woken up feeling like I have a cold today. Probably my own fault as whilst I was waiting I have been back to work to try and get full pay for as long as possible.
Meant to add Movicol, Laxido and Lactolose are all very good for constipation and don't taste disgusting!
Anyone with nausea must take your anti sickness as it says on the packet - don't wait until you feel sick as it's much more difficult to get it under control then.
Good morning all
I hope those who have started chemo are feeling a bit better this morning.
I had my pre chemo appointment on Thursday and saw my oncologist. Chemo starts for me on Thursday 21st. I just want to get on with it and start fighting these tumours as they are agressive and growing fast.
Has anyone discussed PICC line or port with their team? Chemo can make your veins collapse and it can get more and more difficult for them to get a canula in. My veins got abused whilst I was in hospital for a couple weeks recently and so I'm having a portacath on the 27th which will make life much easier.
I'm having weekly paclitaxol (taxol). For anyone moving on to taxol or taxotere it's a good idea to get a good hand and nail cream as it can make your nails brittle and fall off. I used manuka honey cream and nail drops from Holland and Barrett last time plus Udder Cream on my feet (yes, the stuff they use on dairy cows!!!) Don't know if it worked but I had no problems. Also some ladies recommend painting your nails with dark polish as the drugs are uv reactive.
I'm taking a risk and not cold capping as it adds so much time onto treatment. My chemo unit is very understaffed and runs late so there's always a lot of hanging around, I don't want to be there any longer than I have to.
I want to get my hair cut short but haven't got round to it yet. I can't drive for another week or two because of recent surgery so relying on hubby for lifts and hospital appointments are more important.
Hope everyone has a good weekend.
Hi Sunshine Sal,
CosmoCol?! I've never heard of it but it doesn't great!! I'm sorry you had to experience it ... if you didn't get on with it this time round, can you ask for something different such as Movicol next time?
i couldn’t concentrate on anything other than watching the nurse push the meds in!!! We talked the whole time! She was fantastic ands SO funny!!
Hope everyone who has already started are doing ok.
i have started preparing a chemo bag to take with me. Warm socks, kindle, rescue remedy, pen/puzzle book charger, earphones mints. I’ve got some cbd oil and lollies for home. Peppermint oil.
what else do you recommend?
How are you doing reallyzeb and Sunshine Sal? Thinking of you xx Hope the tablets are helping somewhat with the side-effects and you're managing to eat something and not feel too fuzzy-headed, lots of people seem to mention that as a side-effect from FEC. Thanks for the advice about asking for Movicol, I will definitely ask on Mon/Tues
They managed to get my markers inserted okay this morning, I present a bit of a challenge to them as my breasts are so dense due to my age (42) however they're in now! And I had a sit down straight afterwards before driving home so thanks for that tip too Sunshine Sal Just waiting for the local anaesthetic to wear off while I write a list of what I need to buy in preparation for next week! I've put some new pjs at the top of the list as a treat!
Alderney - I feel a bit more with it today but still happier lying down. Forcing myself to drink but have zero appetite.
I slept mostly ok but have abdominal pain, a low level headache and slight nausea. About to start on my mound of tablets.
Sal - I don’t think I’ve cried so much in public as I have in these past few weeks! Especially bad when I’m just barely holding it together and get asked if I’m ok 😭
Feeling pants atm. Didn’t sleep much last night. The anti-sickness tablets I was given after the first cycle (9 a day!) have caused constipation! I need to speak to the gp and get something!! Otherwise all is well. Do ask about getting some Movicol maybe. I have resolved my poo problem with prune juice and lots of water but it caused me to lose a night’s sleep unnecessarily I think. I wish I had asked, I nearly did.
Dont be surprised if you cry! I was relieved to get started, I also didn’t realise just how anxious I was. I had kept it well hidden from everyone including myself. Standard Sally routine. The marker going in was like the first biopsy I had, not great but bearable. I wish I had sat down afterwards for 10 minutes before leaving, but I was going straight down for surgery afterwards to do the lymph node biopsy and wanted to be back on the ward waiting. Once again I fell apart on the nurses.
Take care and just be kind to yourself! I’ll be thinking of you!
How are you doing reallyzeb and Sunshine Sal?
I'm having my markers/clips inserted tomorrow morning (as I'm having chemo before my surgery) then have my pre-assessment appt on Monday and my first session of chemo on Tuesday. I met the oncologist this week and he went through the chemo I would be having: FEC x 3 and then Taxotere/Docetaxal x 3 along with Herceptin and Perjeta which will continue for 12 months. Will also be having goserelin/Zoladex however I don't think that starts til later and am deliberately not thinking about it too much as yet.
Thanks danaleeson, I was flying to/from Tokyo, spending some time in Tokyo and a day trip to Mt Fuji and the lakes and then travelling south on the bullet train via Kyoto, Osaka, Himeji, Hirosima and Miyajima and then back to Tokyo. Whereabouts did you go? What would you say were your highlights from the trip? Alderney x
Sal, I’ve not braved trying to sort out the tablets yet, brain is a bit too fuzzy. Trying to resist the temptation to constantly check my temperature while I have hot flushes.
As for burping ... ribbit
big well done. It sounds like a carbon copy of what I did the day before. I cried too. Today has been okay, managing the tablets was quite a challenge but I think I’ve cracked it. Are you burping a lot?
waiting for the crash tomorrow.
Had my first FEC this morning and I’m still alive. I was a bit upset first thing and so a nurse sat with me through all of it. Sometimes it was a bit uncomfortable but nothing major.
I’ve been home for 3 hours and have been lying down as I feel tired and a weird sort of shaky as if nothing is quite real. Only a tiny amount of nausea, the drug they gave for that lasts 5 days! And I’m thirsty.
I'm so sorry you had to cancel your trip to Japan. I actually live in Osaka so let me know if you need any help planning a trip in the future!