June 2018 Chemo Starters

[MissP]

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...

[Kip]

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?

[SallyG63]

Hi Kip,

First EC last Friday. And I survived the dreaded cold cap for 4.5 hours!!

[Kip]

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?

[SallyG63]

Three days later and still no side effects. No one told me about washing up! I've just done a load!

[cdc1811]

Hi Kip. 

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

[DawnT]

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

[Kip]

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

[cdc1811]

That sounds truly horrible Cazzy. I’m so sorry you’re having such a bad time. Glad the hospital were good. Hope you have a significantly better day today and you can get plenty of rest. Sending gentle hugs. Clare xx

[Kip]

Thanks for the good wishes, I'll keep you posted how it goes.  Good luck minsky

[cazzy50]

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

[SallyG63]

Good luck ladies,

It'll be a doddle I promise!

[cdc1811]

Best of luck today Kip and Minky!! Thinking of you xxx

[SallyG63]

Morning

had a good weekend. Got pretty tired a few times but that would have happened without the chemo if I'd been up till nearly 4am.

Getting ready for work. Normally I'd be there about now but with tablets and injections and not eating for 60 minutes after this one and insulin for my diabetes, my morning regime got long so I'll get a later train after the main rush hour and get in about 10. The steroids are causing problems with my sugar levels and even tweaking my insulin I was way too high last night. My oncologist said to try and stay under 20 and I was way over that. I managed to get back to a semi normal level today but I have to take more shortly. Luckily I work with doctors and nurses for an occupational health company so I'll have a word at work.

Sally

[Jencat]

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

[DawnT]

Hi Minksy. I started 3 rounds of EC on Friday just gone. Hope it goes well for you and for you Kip xx

[cdc1811]

Mai7 Just read your blog and the information is so helpful. Just compiled a shopping list and intend to get chemo prepared this week. Your suggestions are brilliant! Thank you Hope you are doing well after your chemo last year. Best Wishes

[Embolorry]

Hi all,
Just wanting to wish everyone well for chemo starters this week.
I hope it goes well and you all recover quickly.
I found the day after the hardest, thought I was alright but actually I should have stayed in bed. Will plan to for the next cycle.
Let us know how you get on,
Sleep well,
Em
X

[cdc1811]

I like the idea of dark red nails Minsky. Something defiant in that colour! Might do the same x

[cdc1811]

Good luck for tomorrow Minsky and Kip! It’s understandable you’re scared. Fear of the unknown. I’m thinking of you. Going to do my nails next week. Also braving a short haircut tomorrow if I can get an appointment. Huge hugs to you both xxx

[Kip]

I start 6 X ,fec-t tomorrow and I'm scared too!  

[Minksy]

I have just painted my nails dark red. Starting 4 rounds of EC chemo tomorrow. Really scared.

[Kip]

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.

[cdc1811]

Is anyone thinking of varnishing their fingernails a dark colour? I’ve read they become extremely sensitive to light and the dark varnish can protect them from getting too damaged.

[DawnT]

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

[cdc1811]

Such helpful information everyone thanks. Going to spend next week getting chemo prepared so all the tips are really helpful. Not sure They’ll be able to fit in all the scans/tests before my first round but sounds like that shouldn’t be too much of a problem. Have a good night everyone. I’m feeling calmer after talking to a dear friend who had chemo 8 years ago and has been cancer free since then. Encouraging to hear her experience.

[Mai7]

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

[SallyG63]

CDC, 35.6 is low but I was told at the hospital that the digital ones if you do under the arm or tongue generally measure 0.5 low so 35.6 would be 36.1 which is fine. Normal range is 36.1 to 37.2. My info sheet says to report under 36 and over 37.5.

[Kip]

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 

[DawnT]

Hi All

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

[SallyG63]

Ah I misread the echo thing so I may have that wrong. The hot flushes are pre existing and I always felt like my heart was beating more when I had them so I wouldn't worry, they're not a new thing. Honestly, although I had to attend A&E I felt absolutely fine.

Sally

[cdc1811]

That sounds awful Sally but glad you’re feeling ok now. I thought I was having an electrocardiogram ECG but mine will be an echocardiogram which im told is something different. I’m learning all the lingo now.l! Not had a CT scan before so useful to know what they’ll be looking at thanks. I’m a bit worried about the hot flushes and fast heart rate. Were you warned about those side effects?. I need to read more about what to expect. I have a naturally high heart rate so that will be interesting! Have a super weekend. I’m being s couch potato after a really busy week. So nice to have a chance to relax xxx

[SallyG63]

Morning all

Dawn, glad it went well and the gym...well.

Cdc, an Echocardiogram is an ECG. The Ct scan (well mine did) scans all the organs heart, liver, kidneys etc.

So I had a fun night. By 9 I was knackered so after having a hot flush whilst putting the dog out for the last time at night I checked my temperature. It was 35.5, my info sheet says contact hospital immediately for less than 36. Checked again, still 35.5. Checked again 35.3. Phoned the hospital and whilst talking to the checked again, 35.1. Advised to go to A&E. When they checked it it was back to normal but having another hot flush and heart rate was high and BP a touch high too. Did my bloods saw the DR who checked me over again (this all went on over several hours) heart rate up more. Had two iv broad-spectrum antibiotics just in case of infection, chest x-ray, urine sample. All came back ok and eventually my heart rate settled back to normal so was allowed home. I kept saying I felt such a fraud because I felt absolutely fine but was told I was right to go to be on the safe side. Got home at 3.30am completely knackered. I wish I'd just gone to bed at 9.30. Mind you I can confirm that menopausal hot flushes make your heart race.

Woke up at 7.30 and took all my morning antisickness which I had by the bed and straight back to sleep till 10.30 when I woke bright eyed and bushy tailed.

Sally

[cdc1811]

Hi Dawn I’m super impressed you went to the gym! Thanks for being resssuring. I’m sure what I’m imagining will be worse than the reality. I have some medication for insomnia but keep forgetting to take it. Will see if it helps. Have a good weekend xx

[cdc1811]

Hi Kip

I was wondering about the scans. I’ve had a date for the bone scan but it’s towards the end of June and oncologist has said she wants me to have it earlier. She’s trying to organise bone, CT and heart scan for next week before my fist dose of chemo. I thought I was having an ECG but it’s not it’s an echocardiogram which is an ultrasound of the heart I believe. So you’re having further scans after the first chemo? Maybe I don’t need to worry if they can’t fit them in next week. How was the bone scan? I’ve just been reading up about it -nuclear dye and hot spots are all I can remember which is kind of freaking me out!! How long were you told it will be before you get the results? Hope you can have a good weekend. I can totally understand you worrying about Monday. I will be the same when it’s my turn. We’ll get through this like all the lovely others on here! Take care and have as restful a weekend as possible. Hugs xxx

[Kip]

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

[DawnT]

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

[cdc1811]

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

[SallyG63]

Hi,

Yay first one done and dusted!

Marathon day at hospital starting with physio at 8, coffee, then on to chemo. The first 15 minutes with the cold cap I wanted to rip it off but after that for the next 4 hours and 15 minutes it was fine, just felt heavy and a bit uncomfortable but not especially cold. The other lady having a cold cap was on her third cycle of Taxol and hasn't lost any hair at all or had any side effects. She said she forgot to take her anti sickness meds last time and was still fine! I want to be her when I'm on Taxol! She also said the cold cap didn't feel half as bad when put on the second time.

Finally left hospital at 3.30! Still feeling good but still going to let the husband cook my dinner...if it's edible. The first reddy/orange wee was a bit strange.

Came home with a nice big bag of antisickness meds and injections to give myself. I think I'll stick to insulin for the diabetes in the thighs and these other things in the stomach or my stomach won't know what's hit it.

Because of the steroids I also came home with a nice blood sugar reading of 15.5. My oncologist did say that as far as controlling the diabetes the best I can aim for is to keep my readings under 20.

Have a good weekend everyone

Sally

[Kip]

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!).

Kip x

[Kip]

Hi,

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...

Kip

[cazzy50]

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

[DawnT]

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

[WhyteFawn]

Hi ladies. I'm from the Oct 17 thread and finished 6x FEC-T in Jan followed by a single mx and rads. Just wanted to pop in to wish you all well. If you have any questions feel free to post on the Oct thread and we'll get back to you.
All the best x

[SallyG63]

I'm also on my first one tomorrow Dawn...I have physio first at 8am on my bloody stiff arm from my second op where the took the lymph nodes. I'm having EC also for the first 4, every other week then 12 weeks of weekly Taxol. I'm trying the cold cap but if I can't tolerate it or it doesn't work for me then I'll just go bald. I'm not even considering a wig because it'll be too hot for me (I'm always too hot anyway).

I have purchased one beanie/turban type hat, a bargain at £1.99 on amazon

https://www.amazon.co.uk/CHshe-Floral-Cancer-Patients-Beanie/dp/B073RG2BC9/ref=mp_s_a_1_9?ie=UTF8&qi...

[DawnT]

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

[Kip]

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 

[Lynda52]

Hi Kip

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     

[Embolorry]

Well done Cazzy, sounds like you’re getting on with it with the right attitude! How was the injecting yourself? Did you do it or ask a friend? I am terrified of that bit (in a few weeks)!
I went to a pyhsio appointment yesterday where they said try to get out and about every day, so I plan to try that...... we’ll see how easy it is!
Hope all on this thread are bearing up,
Have a good day,
Em
X

[cazzy50]

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