March 2017 Starters

[tinkerbell]

One more tip for ladies with a port. Get some Emla cream to put on it before they do the bloods (it's a local anaesthetic).

[meash67mosh]

Evening Ladies

I have also found out today that I am due to start my first FEC on Monday!! I have been today to have my heart scan have any of you lovely ladies had this?  I am feeling nervous but also glad that I have got a start date, I am like you ladies very nervous about losing my hair and have been trying to look for a wig but this is not easy.  No one has mention injections!! Can I ask what you have to inject and how often please, this site is so very useful to share all with.  How long does FEC take, do you get offered the cold cap or do you have to ask for it. I am so sorry ladies for so many questions.  You all sound like you are coping very well with any side effects you may have.  I have been advised not to go on my own to chemo as I will not be able to drive home. Some of you have said to drink lots before going because of veins, has this been a problem.  Thanks ladies for just being on this site. Big hugs to all you ladies xx

[Eliza76]

Tomorrow look? = Tomato look 🍅

[Eliza76]

Hi all,

Quick update on week one of EC. My attractive boiling red face flushing spread to my PICC line arm yesterday so they advised I go in to Acute Oncology. They decided the flushing was a reaction to the chemo but that the red arm was possibly phlebitis. After 5 hours waiting about they gave me an anticoagulant injection to cover the risk of a clot for the next 24 hours and arranged an ultrasound of my arm which I went back to hospital for today. Scan showed thrombotic phlebitis, not a DVT, so treatable with antibiotics.

Because of all this malarky I haven't noticed any standard chemo side effects..... but in hosp I was zombiefied tired & desperate to get home to lay down. I think it has all taken its toll though as I'm feeling tearful and pathetic. For anyone new starters reading this, please don't fret I've just been unlucky!

Hope everyone had a good weekend & the new starters are coping ok.

Helzie - so sorry to hear about your chest infection, hope you're recovered & that your next bloods are ok. 

Cartwheels & Ruth Elizabeth - hope you're feeling ok and get a good nights rest. 

PS. My tomorrow look is now subsiding nicely, now more of a gorgeous Percy Pig pink....

Yours truly,

Eliza

[Cartwheels]

Thanks Tinkerbell, that's a huge relief. I could easily have nodded off!

[tinkerbell]

Hi cartwheels the cold cap is really fine, isn't it? In a strange way I find it quite relaxing, it's definitely not an issue for me. Glad it all went well. I too am v pale post infusion

[Cartwheels]

Sounds like we're all doing really well!

Had my first FEC today, used the Paxman cold cap. I feel ok now, quite tired and I look very pale. A bit nauseous but I've just eaten a bowl of comfort food pasta. The chemo nurses were just fab, and I chatted to some of the other ladies having chemo. All very supportive and relaxed. My mum came with me and was super impressed!

When I got home, I wrote down all my meds and injections for the next few days so I remember what to do - it's pretty complex and will be first time I've ever injected myself....

What surprised me was that the cold cap didn't feel that bad. I had taken two paracetemol beforehand, so maybe that helped? But at no point did I think it was unbearable. I have thick hair, and maybe the cap wasn't tight enough? Did anyone else experience this?

I'll only know in the next couple of weeks if hair falls out!

Super relieved today is done and it was a good experience.

x x

[tinkerbell]

Hi everyone

Just wanted to give you an update of first week of Taxol. Had strange tingling in hands and feet and then later on shooting pains in muscles/body. Talked to oncologist who said all neuropathy symptoms and I may get my dose brought down by 20% if it carries on. It's nice to be taken seriously and supported in my efforts to deal with symptoms (including ice gloves and slippers and supplements) - feel empowered! He also gave me something to cope with Naproxen nausea from painkillers. Feel more positive now. 2 down, 10 to go!

[RuthElisabeth]

Hi all. First day on the forum and first cycle of FEC this morning. Feeling ok - a bit woozy in the head but not too sick or anything. Not sure when the worst days will be but will probably see a pattern emerge I guess. Came home with so many medicines and injections - hope I remember to take the all at the right times. Good luck to all the other March starters out there - we can do this! X

[Janbenn61]

Hi everybody I'm new on here,i was diagnosed 16th Feb with breast cancer and it's in my lymph node,I'm having my second chemotherapy on Thursday(fect)

'm using cold cap,after my first chemo I've felt fine,I've had sore teeth dry lips and a cold sore,and a touch of thrush down below,but other wise I've felt ok ,I'm guessing I'm going to get more side affects the further into chemo,I'm finding this site a great place to come if your feeling low,and have problems,you are all amazing people positive and strong ,and i don't feel alone reading all your threads thank you keep strong 😘x

[Janbenn61]

Hi everybody I'm new on here,i was diagnosed 16th Feb with breast cancer and it's in my lymph node,I'm having my second chemotherapy on Thursday(fect)

'm using cold cap,after my first chemo I've felt fine,I've had sore teeth dry lips and a cold sore,and a touch of thrush down below,but other wise I've felt ok ,I'm guessing I'm going to get more side affects the further into chemo,I'm finding this site a great place to come if your feeling low,and have problems,you are all amazing people positive and strong ,and i don't feel alone reading all your threads thank you keep strong 😘x

[Amoyart]

Good luck today Cartwells. I did deep breathing for the first 15 mins of cold cap and it worked for me. The nurse was fussing abit and getting me to take tablets etc but I persisted in my 'bubble'. It gave me something to focus on; a did a big abdominal breath, a big chest breath and then a big breath through my nose. I was in a room with a big wallpaper of a countryside scene so I was thinking about being outside. I won't be in a room for my 2nd one so I hope I am able to manage.
Best wishes xxx

[Cartwheels]

Thanks for the advice Hellesbelles, I'm drinking a pint of squash right now.... Have crossword book packed to distract me 🙂

Good to hear you positive experience of side effects Amyoart, just what I need to hear!

 x

[Hellesbelles]

That is meant to say 'just sit down inbetween ' that's what happens when a nearly 2 year old is climbing on you!

[Hellesbelles]

Good luck cartwheels, I felt the same way. The treatment is fine, drink loads this morning to help with finding a vein. Make sure you are distracted for the first 10 mins of the cold cap, suduko/book/ candy crush whatever it takes!
Amoyart, my nearly 2 year old wakes at 5am every day so business as usual for me really. My partner has taken a couple of days off to help but I've carried on with the usual chores, I just us e to sick down inbetween. I had docetaxel and cyclophosphamide last Thursday 16th. Just feel nauseous with a horrible taste in my mouth. Good luck everyone starting treatment this week xx

[Amoyart]

 Hi, I started my first of 3 FEC75 on 10th March and I did the cold cap too.  Day 11 today, was the best day so far.  I had some nausea on the first evening and decreased appetite for the first week.  I did have a flushed face when I woke up on day 2&3 but it subsided quickly.  In the first week i needed a nap in the afternoon and late evening.   I am always very alert in the morning(though my 4yo tends to come into my  bed from 5am) and i have been able to work til lunchtime.  I have been opening windows to get extra fresh air and enjoying getting outside if I can such as walking to my daughters nursery.  I was wondering if the side effects are likely to be similar for the other 2 Fec.   Then I will have 3 rounds of docetaxel so i guess could be more poorly with that.

[Lmcunningham1]

Ah great! See you then xx

[tstock70]

Hi hun, yes I have, will see you at Tessa's Weds morning x

[Moonstruck]

Good luck Cartwheels - hope it all goes well tomorrow. Just think positive thoughts tonight and try to relax. I felt the same - just keen to get on with it - it felt like the start of a race or something challenging xx

[Cartwheels]

Hello all,

It's been great to read your progress and pick up some hints and tips. I start my chemo tomorrow (FEC) and I feel strangely excited to be finally getting on with it. Not sure I'll get much sleep tonight though.

I'll be trying the cold cap as hair loss is the biggest concern for me. Will keep you all posted.

x

[Lmcunningham1]

Hi tsstock
My first chat was very quick as you knoe we see the same consultant. Btw have you checked your inbox about a meet up xxx

[tstock70]

Hi Moonstruck, thank you, it's already been decided I'm having chemo first so I guess he will just tell me about what's going to happen etc. xx

[Moonstruck]

Hi tstock70

They may do things differently in different parts of the country, but I had my Oncology appointment after the tests on my cancer cells - he went through the type of cancer I had and the survival statistics if I did or did not have chemotherapy, - and recommended chemotherapy and then radiotherapy.  It was a bit scary and a lot of information - if you have someone with you ask them to take a few notes.  The doctor was very nice and we did have a laugh about a few things - he was very positive about the chemotherapy and how successful it is.  He did encourage me to make a decision that day in order that things could progress, but said that I could change my mind at any time.  He will also tell you about the type of chemotherapy they are recommending and give you information on it and the side effects etc.  Good luck - hope it goes well xx

[tstock70]

Have my first oncology appointment on Wednesday, what should I expect?  

[Moonstruck]

Hi Everyone. A lot of discussions since I last commented. Helzie - that's a shame about your chest infection etc - not great for your first session, but hopefully things will settle now.  I had assumed that now I was in week three that everything would be back to normal - however, I've had flushing too - think I may have had a bit of a chill or something, and also a metallic taste in my mouth - much to my husbands despair as he tries to cook me tasty meals! My hair has also started falling out - well more shedding really - hairs all over the place and my head feels itchy and tender in bits. I expected this to happen but it feels very strange - like all of this. Meash67mosh you asked about chemo - I was told not to drive myself there or back but arrange for a lift or taxi. For the first session my husband stayed with me the whole time, although they say that sometimes if it is busy then they can only stay for the setup etc. I do feel a lot better this week and have been out and about and doing more - still have to pace myself though. My 2nd chemo is Friday afternoon - in some ways it feels like a long time since the first one as everything was new, but in other ways time has passed quicker than I expected. Take care everyone and wrap up if you are out to keep away those chills! x

[tinkerbell]

Hi Star
Cold capping is 30 minutes before and I think 45 after for me!

[Rooner999]

I didn't cold cap as I felt there weren't enough success stats to justify the hassle/pain. We shaved my head Xmas day just before my 2nd FEC as it was coming out in clumps. With T it seems to be growing back already which I'm chuffed with. SE's really do differ from person to person; one bit of advice I would give is on bad days just curl up and have a duvet day, ongood days, go kick ass 👍🏼

[Hellesbelles]

Hi ladies,
Rooner glad to hear you are near the end of your treatment. My first treatment was on Thursday 16th, felt ok Friday but nausea kicked in yesterday but has eased off a bit today. I also have a strange taste in my mouth but otherwise ok. Im paranoid about my hair i keep expecting to see it all on my pillow! I'm cold capping so hoping it will be successful. On Thursday I had it on half hour before treatment, during and 1.5 hours after. It was bearable after the first 15 minutes. Since then I've been very gentle with my hair. The weird thing is just waiting for side effects and the unknown. Sounds like some of you have experienced a few.
Hope everyone has a good week xx

[blueash]

The cold cap always goes on for 30 minutes before. How long it stays on after depends on which drugs you are having. I had TCH (docetaxel, carboplatin and Herceptin) with the docetaxel first, that is the only one of those that is spiteful to your hair. The other two don't cause hair loss and so my cap was removed right after the session because it had already been on for the 30 mins prior, then the hour or so for the docetaxel and then for another hour or more for the carboplatin and the flushes. If you are having a couple or even 3 that are spiteful to your hair they have to time from the end of the last spiteful one.

[Helzie]

Hiya everyone! Hope you're all doing well. Here's an update of my situation, so we can conpare notes.

I had my first session (EC+Zoladronic Acid infusion) on Monday, March 6th so a long session at the hospital since I also cold-capped throughtout.  Actually, I found this very tolerable despite my earlier concerns I wouldn't be able to manage it.  On the day the only thing I had a 'reaction' to was the steroid infusion which made me a bit dizzy and lose some focus in my eyes. Not surprising I guess given the immuno-suppressive doses we're given.  At any rate I was fine by hometime. I left with Dexamethasone, Domperidone, Emend and  Ondansetron for the next few days. I was definitely the youngest person there and sat beside an 83-year-old lady as we were sharing the Paxman.

Now I realise this is probably peculiar to me but I must have had a residual chest-infection (not surprising given all the bugs going around here this year) which became full-blown so on instruction fron the helpline had to go back into hospital on Tuesday night, where they kept me overnight for observation. ( I'd noticed I was wheezing more than normall on the Monday night which got worse on the Tue)

My neutrophils were up so I had IV ABs and was dischaitrged next day with yet more ABs, feeling exhausted at this point. Apart from feelng wired to a different planet from the steroids and the accompanying huge appeteite, i had no nausea whatsoever. Apart from feeling extremely tired so I slept an enormous amount during that first week and a bit of metal mouth now and again, that was it really ! Certainly no loss of taste, in my case everything actually tasted better for some reaason! Oh and Eliza I, too experienced that flushing on and off for the first two days so you're not alone there!  I figured it must have been a med reaction of some sort since our livers have been subjected to an avalanche of super strong drugs all of a sudden!  I'm certainly someone who has taken v little medicaion all my life! The only other thing i noticed is that the scar tissue in my breast (WLE) at first receded and then became more enlarged and tender-all settled down at this point.

This week I fele almost completely back to normal. i know I was battlng a chest-infection but last week was a bit of a write-off and all I wanted to do was sleep but I guess it paid off in terms of my recovery this week. I guess at this point we now know what to expect from the experience. I have to go back on Friday again for my assessment/bloods etc. I guess they'll be extra cautious in view of my first session etc.

Oh and although I don't wish to tempt fate I still have my hair!!! *Touches wood* I have to say I was v gentle with it all week.

I would be great to hear your updates ladies. Hope you're all doing well

Take care,

Helzie x

[Eliza76]

Hi to all,

Just an update & a thank you to Moonstruck for her kind words of support.

Had first of 3 EC at home late Thurs pm. Was a bit overwhelmed by it all but the chemo nurse was lovely and that helped. All went ok except an elderly neighbour called in right the middle of the treatment trying to force.a fresh chicken on us, she's hard of hearing & was determined to see me so my other half had a kind of chicken wrestle with her on the doorstep.

The day after I felt ok no side effects really, no nausea, was given Emend for that, drank plenty, ate small blandish meals. Nurse came and gave a Neulasta injection to boost white cells on Fri pm. No effects from that yet but it seems these kick in after a few days. 

Saturday am woke with rapid heartbeat, only a minute long, a very red hot face neck and upper arms. Alarmed me a bit so called the Helpline and they said this flushing was likely a reaction to the E drug (uncommon but not unheard of) and should diminish as drugs flush through system & advised Piriton. Later that day my temp was 37.5 so called the helpline again (feeling like a hypochondriac) said all ok, will be 'flushing reaction' unless it stays at this temp or goes  higher as unlikely an infection so soon after 1st dose of EC. Temp back to normal later so great.

Sunday morning now and am still like a boiling hot tomato face and bad tinnitus, other than this I feel normal. Blimey I never expected that one. My other half seems anxious bless him. It's like you're watching for things to arise. I'm sure everyone is like this after the first treatment? 

Hope everyone is doing well and having a good weekend. Any remedies for scarlet/puce hot face/chest would be greatly appreciated.

Yours boilingly Eliza

xx

[meash67mosh]

Hi Rooner999

Well done, you are near the end.  I am due to start chemo in April I think, I have not been given a date yet they just said a couple of weeks.  I have been told I will have 3x FEC then 3 x Docetaxel is this similar to yours? Most of these ladies chemo are all different, some are weekly some are every third and some monthly. The chemo types seem to be different too, some people start with T then FEC, is T Taxotere?? I am dreading it, it is scary because it is unknown territory to go on.  I appreciate we have to do it but as we are all different we don't know which path we are going down. I will have radiotherapy after to. Reading some of these ladies threads they are coping so very well and just riding the storm, after reading some of your daily threads it really does help and believe that you are all so very brave and encouraging to us starters.

Also do you ladies have someone to attend chemo sessions with, or do you go alone and drive yourselves. Have you found Rooner999 that every session of FEC the side effects were the same so you knew what to roughly expect or were they completely different and how long did it take? I am so sorry for all the questions.

thank you ladies and well done, keep up the good work. Xx

[star]

Hi Tinkerbell
I'm also cool capping - I've done 4 but have found it difficult how long after the chemo had finished have you kept the cool cap on for ?? One nurse stopped it soon afterwards another time 30 min later
I've always had it on 30 min before chemo starts
Thanks Star

[Rooner999]

Hia. I've been pretty good to be fair, I had 3 FEC and 3 T with my final T next Friday. I've had the majority of SE's but in moderation. Looking at the posts on my forum I have been very lucky with most of the impact for me being mentally rather than physically. Hope you're doing ok

[Hellesbelles]

Hi rooner999, nice to find a fellow Salisbury patient! How are you getting on with the treatment ?

[Hellesbelles]

Thanks angie it was me yesterday. I feel fine today, no side effects yet. Just spoken to a friend who has been through it and she was OK the 1st round, fingers crossed I'll be ok too.

[Rooner999]

He Hellesbelles. I'm from the December starters but I go to Salisbury hospital too

[Angie pink65]

Good luck to those who are having chemo today and hope the one who had chemo yesterday is doing ok xx

[RachelElizabeth]

That's fabulous, thankyou so much xx

[Hellesbelles]

Ps anyone at Salisbury hospital? Just read through posts properly. Tinkerbell my hospital provided a headband and conditioner, good advice though as it comes out of their charity fund, which might not be the case in all hospitals.
Eliza your post made me laugh about the wig ! I guess you are also sat at home too, waiting for the side effects to kick in?
Sue your photos are amazing you look great in them all, you rocked the bald look !! Xx

[Lou Green]

Really pleased that your day was OK and hope you can now have some good rest and sleep. Now you can have some lazy days.

I look forward to hearing how you get on with the cold cap.

It was something which I considered but after my diagnosis the condition of my hair was dreadful. I decided I would be more stressed trying to make it look decent. My hair loss was really quick and I did invest in a real hair wig which looks extremely natural and I never have a bad hair day !! (every cloud lol)

Catch you soon Lou xxxx

[Hellesbelles]

Thanks ladies for your best wishes. Lou you are right we are lucky to be so well looked after by the NHS in this country and the clever people who do the research into cancer. Today went OK, 4 attempts to find a vein but got there eventually! I did drink lots yesterday but you need to drink gallons to help with the veins. The cold cap is a bit uncomfortable but after the first 15/20 mins you get used to it. Just make sure you are distracted during that time, my nurse went through the various meds with me and then I read my book. The first 5 minutes my partner spent laughing at me, as I looked like something out of Dr who with the cap on ! The actual chemo was fine took about 2 hours in total plus an extra 1.5 hrs after for the cap. I feel fine so far this evening. Fingers crossed ok still tomorrow. I can't remember who starts tomorrow- sorry but good luck ! Xx

[Newgrandma]

Hi RachelElizabeth, here are the homeopathic remedies which I've been given. You need to bear in mind that remedies are also personality and body type specific and will treat different symptoms in different people, so its best to check them out to see what fits with you - there are several good ref's on line. Some will be available from good health  shops, some you might have to get on line. Nelson's is a good brand. Hopefully some of these will ring a bell from your mum's treatment.

Aconite - for anxiety,  cough, sore throat

Ipecacuanha -  for sickness, headache, panic

Podophyllum - for diarrhoea, rotten taste

Thuja - for sore mouth, headache, sweating, limb/back pain

Cadmium sulph - nausea, vomiting

pretty much the full set for SE's so lets hope they work.The other thing I've found useful is sniffing peppermint essential  oil for nausea and a mix of lavender and neroli oils to keep me calm.  I got some aroma sticks from a co. called Base Formula - a bit like a Vick thingy that we used to stick up our noses as kids when we had a cold. You put some drops of oil inside on a cotton roll so you can sniff the aroma when you want - they're about £7 for 10 + cost of oil.

I've got my first chemo next weds - , pertuzumab and herceptin - all day session, followed by docetaxel on Thurs. Feeling pretty scared, as much by the process as anything  so will be glad to get past the first one.

Hope this info is helpful - really grateful for all the tips and support here - otherwise I might I think I was the only one with a spinning head!Think I will just have to use my Reiki to take me away from it all to a far nicer place.....

go well everyone Pam x

[Janbenn61]

hi pati1 my breast cancer as gone into my lmpth nodes I had my first chemo 2 weeks ago and I too tryed the cold cap,yes you are right the first 10 mins is the worst,,ive felt ok with the first lot of chemo,surpose the further on I get with the chemo I may get some side affects,how have you been xxx

[pate1]

Thanks blueash and tinkerbell.

Mine has spread to my lymph nodes so I guess that's why I'm having 9 months of chemo first. Seeing my oncologist tomorrow so I may ask him more questions.

Had the cold cap last week on my first chemo...I think the first 10 minutes are the worst. I kept thinking 'I can get myself through this' and literally put my mind elsewhere, by bringing memories of holidays (sitting on a warm beach etc  

[Mama T]

Bonita

sorry, I didn't think about privacy, so will be more careful in future.

colchester ladies, I have sent a PM to you both about meeting up rather than try and discuss it on the forum.

tessa

[BonitaE_BCC]

Hi all,

You may have noticed that I've removed the names of the health care professionals mentioned as they are not allowed on the forum. This is mainly to protect privacy - I hope you understand.

Best wishes,

Bonita

[tstock70]

Hi Mama T, Waiting for an appointment with them.  Maybe we could all meet for coffee xx

[tstock70]

Hi Lmcunningham1, How come you've had a delay if you don't mind me asking xx

[Sue H-S]

Hi ladies,

it it great to read that you are all coping so well.

Some tips re wigs, which I hope might be of help. Often it is easier to go for a wig in a very similar style and colour to your - unless, of course you want to experiment with new hair styles!

Washing it with the correct shampoo, before wearing it on a regular basis, will soften it and make it look more natural. I would also recommend to seek out your usual hairdresser and let him/her thin it a little and cut it to your usual hairstyle. Wigs can be a bit 'thick' so the thinning helps to make it more natural, too.

I wore mine over my long hair, before I had it shorn off, just to see how I would feel and how people around me reacted. It gave me much confidence for when the time came, when I needed it.

From - to - and...the last picture was taken about a month ago...

 

Hugs

Sue x