Had my first round of FEC on the 4th and I cold capped. Getting home, the affects of the cold cap hit me like a bomb. I had to close the curtains, no noise, aura. Just like a full blown migraine attack. I was worried about losing my hair (I’m Afro-Caribbean and have been natural for over 20 years), I have a lot of thick kinky curly hair, but after the cold cap I decided that its just hair it’ll grow back right? I’m really struggling to eat as I take a mouthful and that’s it, I drink a lot of fluids so have made juices and smoothies with extra protein to keep up my strength.
The tiredness is what’s getting to me though, normally very active and I struggle. Helplessness is not a feeling that I’m used too. I would have liked to go back to work, but I’m a food teacher and have a long commute. The doctor has recommended that I stay off rather than open myself up to possible infections. I’m trying to stay positive, but sometimes its so hard...
Wow hard core! I'm not cold capping, they realised mid chemo they had never even told me about it! Anyway had decided not to beforehand. How come you don't have the F part, I have FEC? So many different combos I guess?
Hi CDC, yes lunch was fine, just had tuna pasta for tea made by my lovely 13 year old so taste buds still tact. Feeling ok maybe slightly woozy head but not sure if thats all in the mind. Feel like I need a walk so might trot round the block.
Sally that's fab for you re no side effects, was this your first? What type?
SO glad that first session went well. It’s encouraging to hear your experience. Also that I won’t be washing up for a while. Got to find those silver linings somewhere! Could you taste your lunch?? I suppose the side-effects take a while to kick in but I really hope you don’t have any or that those you do have are very mild. What I’m discovering is that everyone responds differently. Hope you have managed to relax. I’m getting prepared and have really short hair now after a quick trip to the local barber this morning! Had loads of comments about how nice it looks! Shame it will be gone in a fortnight or so but quite fun experimenting with a haircut I haven’t had since I was 20!! Take care and sending my very best wishes. Xx
Hi cazzy. So sorry to hear your having trouble.
Are you injecting with Nivestim/Filgrastim? This has absolutely floored me with pain - the district nurse did look me in the eye and mention it when she did the 1st injection - but the reality is a shocker! Are you taking anything for the pain on prescription?
Hope you get under control soon xx
Hello, well 1 down 5 to go. Wasn't too bad at all, nurses were lovely and as FEC has to be given slowly by syringe she stayed with me and chatted whilst I asked 1000'questions. Took about ,2 hours all in but she did explain a lot as first time. Appt was 12 but home by 2.30. ate lunch when I got home and still feel fine, weird waiting for something to happen! Expecting sickness to start later but have all the pills to pop so fingers crossed... Good news was you mustnt wash up until chemo over due to possible infections... Every cloud hey... I'll pop by tomorrow for an update
Morning all, Really really rough weekend. Chem Mon and Tues, Weds and Thurs Ok, Fri really bad ended up in hospital, they were wonderful. Have spent the weekend in bed not eating. Drinking watered down lucozade and pineapple juice. Up now but I will be going to lie down soon. Injecting OK. Lost a stone. Have a good day Hugs Cazzy X
I'm from the Oct thread and just wanted to say hello and thinking of you all x
Speaking from my own experience, I think the thought of starting chemo was actually worse. It wasn't great at times, but it's definitely doable. I didn't suffer from any sickness, just a bit queasy occasionally-you'll be sent home with anti-sickness tablets, which will help. I wore seasickness bands when I had the chemo and for a few days afterwards-I wasn't sick, so maybe they helped. I did find I got very tired at times though and needed to rest quite a bit.
If you need any advice, we're happy to help on the Oct thread and other's will from the other threads too xx
Yes I had heard about Nail varnish might do it tonight just in case. Thanks for the tips re thermometers, I will ask nurse fomitomo at chemo.
Mai7 - you're link doesn't work. Thanks for the encouragement and hope you are doing well xx
Kip my temp. is 35.5 in the morning and goes up to 36.2 ish later in the day. I think as long as you use the same thermometer in the same place at roughly the same time each day and you feel ok then it probably is ok. Just keep writing it down in a running list. You'll see a pattern. I scanned in at the hosp at 35.8 and they were fine with that.
We have a glorious day and I have to sit in the shade and behave apparently! Happy days xx
Hi Ladies, hope you are all doing well. Here's my blog which you may find useful for chemo tips. I collected the list from information we learned and shared along the way. I finished chemo last autumn. Keep going you can do it. https://lifeafterlola.blogspot.com/ xx
Hi CDC I have to have a bone scan, CT and MUGA heart scan which should happen before chemo but because my chemo date came first they said it would be ok to have one chemo before. I had bone scan which was fine, you have an injection which is like a blood test then go away for a few hours then return for the scan. It only lasted about 15 minutes . The ct is in the ring shaped scanner and that looks at your organs I think. Not sure what the MuGa is? I get my results on 26 June when I see oncologist after first chemo.
sallyg you poor thing with the temp etc glad you are ok now tho. I've just bought a new thermometer and it's says my temp is 35.6 is that normal?
I did some pre chemo shopping, lots of ginger things, cordial, biscuits etc, sweets to suck, immodium, sennokot, lip balm etc. I got a nice water bottle that you can out fruit in the bottom to infuse to help with the fluid intake.
Think I am almost ready now...Kip
Just to point out the gym was pre treatment to deal with the nerves!
cdc the ct scan is nothing to worry about. It takes about 5-10 minutes. You drink lots of water beforehand and they jab you with dye. Close your eyes and be somewhere else. They jiggle you in and out and you can go home. The results went straight to my consultant but I had to wait until my next appointment to find out. Stress!!
The echocardiogram is like a pregnancy scan. Ultrasound, non invasive. I found it a bit wince making as I have a rib injury from something else and they press on a bit but it would have been fine if it weren't for that. Took about 12 mins.
Sally sorry to hear about your hosp trip - nightmare. Every time we go we're looking at 5-7 hours a visit. I was told my chemo would be 40 minutes and it was 3 hours. I think a misunderstanding - she didn't mention the drip before and after. I bottled out and had to get a screen put up because I was a bit overwhelmed by it all and it's not nice crying in front of strangers. Waiting for district nurse to come and stick a needle in me lol. Fun. Love to all on here xx
Hi Cdc it's good you have a date, I'll be just in front of you so we can compare notes and egg each other on! I'm not sleeping much still as can't stop worrying about Monday, just want to get through one and see what's what. Ive had my bone scan but still havent got date for ct, heart one on 22nd i think,.
Have a good weekend and rest up. kip
Welcome to the club cdc. Waiting is absolutely the worst most stressful thing. As we're mostly on different meds it's difficult to compare. Had my steroids after 2pm yesterday as hosp was running late - woke at 2am this morning wide awake and starving!! Will take them earlier today. They can give you something if you have trouble sleeping while waiting. I tired myself out at the gym so I fell into bed exhausted in the evening. Be brave, everybody is really helpful and kind. xx
Hi just a quick hello to say I’ll be joining you. Start on 19th June if bone scan, ECho cardiogram and CAT scan and various blood tests (to be taken next week ) are ok. I’m truly terrified. Not so much about hair loss but just feeling generally grim, I’ve been warned day one is usually ok but by day 2/3 the fatigue and nausea can kick in. Has anyone who has had their first session found this to be the case? Also I’m on AC and then T. Anyone else on the same drug regime? Off to try and get some sleep. Goodnight everyone, xx
Back from wig shop... wow too many to chose from, I have short listed 3 but they are ordering them in in the colour I want, so have to go back in few days to re-fit. Very helpful kind lady and impressed with out real the wigs look (artificial hair too!).
Sorry to hears it the UGGG day today Cazzie, hopefully it will be the worst and then things will pick up soon, guess we wil just have to ride the storm and rest whilst we feel bad.
DawnT - at the Macmillan centre at my hospital (Ipswich) you just make a donation for the hats etc, they also have 2nd hand wigs which people no longer require and you can make a donation for them. Macmillan also do fund people with cancer to allow them to purchase wigs etc, you should look into it. Just give them a call I think, I have some paperwork so I'll see if I can find out for you, anything is a bonus when you are dealing with this.
No off wig shopping! EEK...
UUGG day today, not feeling good. Has taken me about two hours to get up showered dressed. Dog has had a small walk and I am trying to eat my porridge. Took the last of my anti sickness tabs still have to inject, they are not a problem, so far. But I am very sore down below. I have been drinking lots of fluids always have and I am not constipated so not too bad. A bed day today I think. Hugs Cazzy X
SallyG63 they are beautiful - and sooo cheap!! I'm shopping. After cleaning the house, changing the beds, printing exam papers and stuff - like you do! Good luck xx
Come on Kip - if you can get from feeling sad to feeling mad it helped me a lot.. I have my first chemo tomorrow and feel like I'm going into battle. The Oncologist today asked me to give her 5 months of my life to try and get 20 - 30 years! Didn't seem such a high price for that. We were at the hosp. today for best part of 7 hours being prodded and poked so you do need lots of food and drinks. I need to get to grips with the hair thing as was told it will all be gone 10-14 days from tomorrow. Will have a look at the fringe. Did you have to pay for it? I'm self employed and this is going to be financially difficult for a while. I'm having EC-TPH, 3 cycles of one followed by 3-4 cycles of the other. xx
Sounds like you are doing well cazzie that’s good to hear. Thanks for 5he tips re chemo ladies I am so nervous. I had my bone scan today which was quick and easy just dreading the results in about 2 weeks. I also popped in to the Macmillan center at the hospital where I got 4 little soft beanie hats and a Velcro fringe! Looks really good tucked in the front of hats or scarves, wig shopping tomorrow then that hair sorted. My tumm6 is churning just thinking about Chemo and the tears are not far away.. sleep well ladies xx
I started my chemo on Monday- FEC-t . The actual therapy was fine but do take snacks and especially water as you can be waiting around a long time. My hospital does provide sandwiches but the nurses warned me that they aren't very good!.
I did have pink wee for a couple of days so that's something to be aware of. As to side effects, i felt well enough to drive myself to and from the hospital, but did develop a rotten headache and nausea some hours later. The best advice my chemo nurse gave me was to be sure to drink 3 litres of water a day to help flush out the toxins. They also gave me 3 lots of anti nausea tablets which have helped.
I decided against using a cold cap as it can give you a headache and you need to be there an additional two hours each session and i just didn't want to spend that much time in hospital. I haven't yet ordered a wig but i have got two little chemo hats from a website called AnnaBandana which were very reasonable and quite pretty.
As everyone says its a marathon not a race and i just feel that i'm now 1 down, 5 to go.
Hope it all goes well on Monday!
Cheers Lynda 52
Day 3 of chemo. Yesterday early wake up 3.50am, but felt OK all day went to bed after 10.00pm, very late for me, but awake just after 4.00 am today. Have finished my steroids for a few weeks so sleeping should improve. Did a little work in the garden yesterday, Factor 40 on. Did more than I had planned but energy levels good. Drinking lots of fluids and lots of Ginger products for queasiness. Still got hair and nails, have put ON 6lbs, only me. Still able to take dog for his walks, so far so good. I am not used to doing nothing so I have to try not to do too much. Luckliy 3 friends popped in yesterday so lots of chats. Today is day 3 and todays delight is self injections. 7 seven days into the tummy area. This is to help me with my bones, however one of the expected side effects is BONE pain, yay yippee. Still a small price and doable. Have a wonderful day all, Hugs Cazzy x