starting chemo in june 2014

[Cath2410]

Hi, Had my first chemo treatment yesterday. On EC x4 then Docetaxel x4. Already had a mastectomy + sentinel node biopsy the axillary node clearance.

Spent yesterday evening vomiting but feel a bit better today. Just now a waiting game to see what other side effects I experience.

[Tinker47]

Hi Louise and all other June buddies

Thank you for your messages - I have gone for the shave and got my wig, although I was saying to my 12 year old daughter tonight - most people only have to take their clothes of to go to bed I now have to take off one boob and hair as well.  My ex husband came around this evening to see how I was as had second chemo today as well and first word was WOW - that is the exact look you have been trying to get for your own hair for years - and he was right plus the roots won't need redoing.

For those suffering with sickness I have found salt and vinegar crisps and ginger ale is helping me out on that one.

Good luck Louise for tomorrow and to all us strong ladies going through this journey - together. x

[Tinker47]

Hi Runner29

Ive just had my 2nd chemo today and feel pretty good.  When I was diagnosed at the beginning of February I had long thick blonde hair and was definitely one of my better features, I had it cut short after diagnosis.  After my first chemo there didn't seem to be any hair loss then the weekend just gone it was coming out in handfuls, on the brush, in the shower and it was so dry and brittle, it was dull and made me feel really yuck and I will be honest I cried this week over my hair loss (didnt for losing a boob though).  Always hoping that I might be one of the lucky ones with minimal hair loss.

Before my chemo today I had my second wig fitting, I chose 4 to try on and I went on my own.  The lady was brilliant and I tried on one and it looked fantastic.  However more hair fell out into the hair net, I looked in the mirror and could see the bald patches and there were some at the back, so I made the decision there and then to have it shaved - a number 3 apparently!  Have had the wig on since and feel great, I feel more like me before diagnosis, I even got chatted up in the waiting room.  A friend came round this evening that I havn't seen for a while and he said I really like what you have done  to your hair - he couldn't believe it was a wig.  I haven't been brave enough to look in the mirror without the wig on - but I know I feel and look so much better with it on and I know I won't get any more days where I am going to be having more hair coming out.

So to all out there it is doable and also all the best celebrities wear wigs.

Best wishes to you all x

[Pixie100]

Hi everyone,

I had my second round of AC last Friday, with similar SEs to first round for first few days, sick/nauseous, no appetite, bad taste in mouth, constipated, very tired and spent a lot of time in bed. Feeling a bit better today and think the worst is over. Spoke to the nurse and she said they would try to adjust my anti-sickness medication again next time but overall she thought I was doing well. Next time I'm planning to eat just fruit and veg soup for two days before chemo and not eat afterwards in hope that will help with the sickness. I heard from a friend that refresher sweets helped with morning sickness and gave them a go as well as the travel sickness wrist bands. Also tried hot lemon, ginger and honey, one of the few things I could stomach drinking - never knew water could taste so awful!

Not ready to cut all hair off yet, have a small bald patch appearing but still enough hair that it's not obvious. Have been told to expect to lose all of it including eyebrows and eyelashes when I move onto Taxol, so getting ready to embrace baldness and will have wigs/hats at the ready. Still going with the cold cap for now.

Sandie73, I was told skin sensitivity could be a problem and to avoid perfumed products. Hopefully your BC nurse can give you something to clear it up quickly and it does not flair up again. 

Hope everyone else's second round goes ok.

Px

[Jj1981]

Im putting together a booklet on tips during treatments for breast cancer. There is so much good advice out there but no one place to get it. Once booklet is designed i will contact the charities and ask them to put on their sites. Im just going through chemo so have surgery rads and hormone therapy to come so would be great to have tips and hints ready.
This is such a big job and impossible to do on my own. I have create a facebook group called tip and hints for bc which is a closed group to get all the tips on and then document can be designed. I have too much time on my hands but please let me know if i am trying to create the wheel but as far as i can tell there isn't an existing document or if someone else trying to do we could join forces.

I also want to do a section on funny stories that have happened to people to give people a laugh and any positive things to cheer people up. I had a bird poo on my hairless head yesterday and it actually really hurt because i had no hair to soften the blow and even though its disgusting it made me laugh after i was having such a crappy day.

Also maybe a page of useful websites and facebook groups as its took me two months to get where i am and still finding new things everyday. Some facebook groups i have come by, by chance and they are so helpful.

If you have anything to contribute or suggestions on a section please reply or pm me, or even if you want to help. Also mention if you are happy to have your name added or if you want to be kept anon.

Please share this with as many people as you can

[runner29]

I feel ok with my low temp but it's down at 35 degrees. I've had antibiotics n they've said to not worry about my temp unless I feel unwell as it has been down at 35 for a week. I had an allergic reaction to my 2nd docetaxel on Monday but was ok after having IV steroids. Just getting onto that point where my bones are beginning to ache, not looking forward to tomorrow!! Hopefully get past the weekend quickly!

Yes I'm wide awake at 4 or 5am n can't nap in the day, I might speak to chemo nurse on Friday when I get my line flushed about it. Xxx

[Louise3721]

Hi Tinker47 just read your post and i am having the same treatment as you most people have 3 x Fec and 3 x something else I am having Fec 4 tomorrow . How are you getting on with it? The hairloss is sad but inevitable I am now completely bald showering is very quick !

[Louise3721]

Hi ladies just dropped in from April thread. Bear with it ladies and get yourselves booked on the Looking Good Feeling Better Course run by Macmillan It's such good fun and you meet ladies who all know how your feeling.

Embrace your baldness and onwards and upwards ! Chemotherapy is not for the faint hearted but it beats cancer! Good luck x

[sandie73]

Hi

I just started my first chemo session last Thursday and not suffered too bad with the side effects so far. However my face, chest and back have erupted in a spotty rash 😞 my temperature is normal but to be on the safe side I phoned the emergency helpline at the hospital. As I am not unwell, the nurse advised me to take pirition and managed to get me in to see a doctor this evening.

Hope they can give me something to get rid of this. I am going to be a bridesmaid in a month's time. Its bad enough I will probably be bald by then but to be spotty too 😞

Has anyone else suffered skin problems on the EC chemo regime and what medications worked for you?

Thanks xxx

[Athens]

Hi Pen

I am doing ok thanks. I have called the 24 hr Helpline a couple of times but was fine. The oncology nurse told me it would definitely get worse as I go through the cycles, as the toxins build up, so no guarantee that because I got off lightly this time that I will be fine in future cycles.

My hair is holding on there - I saw a couple on my pillow this morning for the first time, so I need to take my new much admired short haircut out and about over the next days before it starts to disappear! If it stays til Saturday I will delighted because there is a big social event I am going to with my extended family so it would great to still have my hair for that!

Bye for now
Athens

[mummy2dolly]

Hope you managed to get back to sleep Runner29. I woke last night at 02.30 and dozed off again at 05.30.... The alarm foes off at 06.00...... What are they doing about your low temperature? Do you feel ill with it?

[cowgirl]

Runner 29

I am so sorry to hear about the hospital and the temperature.....They gave me lorazapam to sleep - go figure, I understood it was for anxiety, but I am not particularly anxious.   It actually has helped me sleep.   I hope you feel better soon!

[runner29]

Hi all, hope everyone is doing ok. I'm sat in hospital today with a low temperature, was in hospital this time last week with the same thing, getting pretty fed up of it!

Last tues when I was in hospital my hair was really starting to speed up on the loss so when I got out on Wednesday I had my head shaved. I've gone between wearing wigs to going out bareheaded when the weather has been too hot. And it's ok so far.

So tired but can't sleep more than 4 hours a night, currently my OH is asleep in the hospital chair next to me, wish I could do that! Anyone else got any sleep recommendations?

Xxx

[cowgirl]

Hi Everyone,

I had my 1st chemo - TC - last Wednesday and I didn't crash until Friday - then I could hardly get out of bed - I ached all over, even my ears.  I didn't vomit, just felt like I had the flu.  I feel slowly better - this is day 5 of feeling bad and while I am certainly a lot better than day 1, I don't feel really good yet.  I am so tired and I have a low grade headache that will not go away and the body aches are still with me.  Does anyone have a good drug for the pain and headaches?  The problem is that I am allergic to codine.  I still have my hair, but I know it won't be with me much longer - maybe another week and I just haven't had the energy to go look for a wig.  I have 3 more chemo treatments to go.....I do not know how any of you could do this and manage a regular job or small children - you have my sympathy. 

[Mrswills2015]

Had my first chemo at Christies in Manchester yesterday. Not feeling too bad by now but been warned that weekend I might be feeling a big groggy!!typical!!

[mummy2dolly]

Hi everyone, how are you all?
I had my 2nd AC dose last Thurs and it was all pretty much the same as the first time round. Thurs fine Fri 90% fine, Sat in bed all day vomiting, Sunday in bed all day nauseous, Monday back on the school run but nothing else, Tues back at the gym..... I couldn't run 5k though, I'll try again tomorrow.........
My hair is pretty much gone, I look like a plucked turkey, my friends tell me I look good bareheaded or in caps or hats but NOT in bandanas..........

[pen]

Hi Athens

How are you doing after your first treatment?  I had my first chemo on 12th June too and have been surprised how well I have felt and coped.  My hair is just starting to shed a little today but that was expected.  I am having 3 FEC and 3 of something else (side effect - can't think straight!)  Anyway hope you have been ok too.

Pen

[angel77]

Hi all.i am.having my 2nd dose.of chemo TC-H on 2nd july but since ny first dose i have had a cold has anyone had this ? Or maybe it isnt a.side affect but a proper cold. I hope they still.give me my 2nd dose x

[Roxie65]

I too have been trying to make jokes about losing my hair but with it falling out big time finding it hard to keep laughing. Daughter cut it to a bob as it was so long I was getting tied up as it fell out. Getting really thin now and still we are all laughing about it but really I am not happy. But as we all know its temporary (mind took a long time to get it that long) and part of getting rid of this awful illness so my smile and my jokes will continue.

Good luck to everyone with their chemo...having my second dose this Thursday and have had my sickness medication increased and will have some an hour before chemo which will hopefully help!!!

xxxx

[Flutte]

Hi Tinker47, I know what you mean about trying to make a joke out of the hair loss with family and friends and yet again we seem to need to put a brave face on it and laugh along with them.  Sometimes I get a little fed up with all the brave faces I have to find.  But I want another 30 years at least so a short period of no hair if it means no recurrence then bring it on.  I do now take a very active interest in scarves and bandanas and am trying to find ones that match my normal fun self.

Good luck for next Wednesday.

Take care xxx

[Tinker47]

Hi everyone thought I would join the June thread as had my first chemo on 4th June this year following a mascetomy then lymph clearance.  Side effects fortunately so far have been minimal, a little sickness on the afternoon after chemo and lethargy.  I have my second chemo next Wednesday.  I thought I might be lucky and not lose any hair as thought it would start to go within the first 2 weeks, then it starts coming out yesterday.  I have my 2nd wig fitting the morning of my second chemo but was so hoping I had escaped that effect, have tried to be strong and make a joke out of it with the family but to be honest  - not to happy, I am happy to explain to strangers about my pic line when asked - but the hair loss!  Im just wondering if more will come out after the 2nd chemo to a point where I will need to shave and does anyone know when it starts to grow back - ive booked to have 6 x FEC, followed by radiotherapy and hormone treatment.

[Flutte]

Well not too bad so far (hope not spoken too soon).  Yesterday was left feeling very tired and quite grotty, so slept a lot.  The unit have given me 2 types of anti-sickness and steroids to take over next few days and injections start Tuesday.  Been up since 5 ish this morning and feeling ok so far.

Hope others are doing ok too and if not I hope it improves for you soon. 

Its going to be a strange sort of life until October.

Take care all xxx

[rach72]

Hi Athens

I have found wearing the wigs okay up to now but when I noticed the bald patches I shaved all my hair completely off. This has meant that my scalp has stayed pretty cool underneath and when I get home from work, I just wip it off and leave my head uncovered. My children haven't really batted an eyelid and I like feeling the fresh air on my head. Also, when I've been feeling a bit rough, standing in the shower and letting the water run over my scalp feels really refreshing.

I had my portacath fitted yesterday under general anaesthetic ready for my next FEC chemo on Wednesday. All went well (touch wood) and apart from a little discomfort and a strange pulling sensation in my neck, all is fine today (touch wood again) My veins are so bad, they had to use a cannular that they use on babies to put me to sleep!

 I hope that everyone who had their treatment this week is doing okay and that everyone who is due to have round 2 is ready and feeling okay.

Sorry for not replying to ladies individually, I really must start remembering names, think chemo brain may have struck already!

Big hugs to everyone 🙂

Rach xxx

[Athens]

Hi Flutte
Hope today went ok and that you get through the next few days without too much bother.
Athens

[WP23]

Hi sugar8

I too have been offered TC along with Herceptin and radiotherapy. Start on 30th June.

Did you get any more info on this particular type of chemo??

Thanks

Wendy x

[Pixie100]

Good luck today Flutte and glad they managed to fit a Picc line for you. I am going in for round 2 today. Will give cold cap another go although yesterday at work little hairs were raining down on my desk all day. I had very long hair before I started but had it all cut off into a short crop and glad I did now I'm starting to lose it.

Jinny, so sorry to hear you had such a tough time. Are there any support groups at your hospital? Your chemo nurse should know or may know of other local support that is available in your area.

[Athens]

Hi Jinny

Perhaps your breast care nurse can help and advise you about what support might be available in your area to help with the anxiety. Some people seem to get a lot of help and advice from the BC nurses though that has not been my experience though I am getting some support elsewhere.

This forum is an invaluable source of advice for me and I have had a couple of really helpful discussions on the Helpline.

I have attended a few sessions at the local McMilllan Centre eg relaxation classes, Pilates, complementary therapy such as hand and feet massages. They have all helped me stay a bit calmer than I would otherwise be, plus it is an opportunity to meet others - the ones I meet are all towards the end of their treatment and have passed through chemo and radiotherapy so I feel like a newbie but I found it helps to talk, having spent the first 2 months all bottled up and not wanting to tell anyone outside of close family what was happening. I still do not want to discuss it with others that I know but I somehow feel ok talking about it with the 'strangers' I meet passing through the McMillan Centre. That then has helped me take what was a huge step for me, to discuss with professionals who can help me such as my chiropodist, dentist and hairdresser, all of whom it turns out have dealt with loads of clients going through chemo and had lots of advice and tips for me and assured me I only had to ask if any concerns or worries. It changed the nature of the relation I had with them for many years, so it was scary and emotional. So through that I am gradually opening up a bit and realising that I can have a bit of control over part of what is happening to me, even if only a tiny part and that helps me cope a tiny bit better.

The tranquilliser the hospital gave me half an hour before putting in the needle on my first chemo helped too! I was very reluctant to take it, as I had never taken one before. I will definitely want to have one the next time too.

Jinny, I hope you begin to feel a better and brighter soon. I hope the forum helps you as you are helping others by posting your thoughts and queries eg your later posting about the Breast care nurses and the replies you got to that have helped me realise that maybe I can call them - I had originally thought they would be in touch with me and when they did not make contact I assumed they had a lot of new people to be supporting so I should not bother them.

Stay in touch and let us know how you are getting on.
Big hugs,
Athens

[Athens]

Hi Cowgirl

I too was fine on Day 1 after my first FEC on 13 June, I was a bit off colour the next two days, slight nausea and lethargy and have been a lot better since Monday. I am grateful for not having as hard a time as some others on this first round and will not be surprised if I have harder times ahead.

The only issue I have had so far was a drop in temperature about 1am last night when I was going to bed and when it stayed below 36 degrees I phoned the 24 hour helpline - I did wonder whether I should bother them as I felt fine, just cold. They assured me I had done the right thing, asked me a few questions said they thought I was ok and that they would check back with me tomorrow, which they did with a phone call at lunchtime. So that was reassuring and at least I have had a test of the support system from the hospital and will feel ok about calling them again if any worries. The coldness was odd as it is normally overheating that bothers me and I think I will soon have worn out my sheets through the daily washing and I am surprised I have not shed a stone in sweat in the last few weeks!

Take care
Athens.

[Athens]

Hi Ria
Hope the advice posted helps you find something to sort out the heartburn. I'll know to come back and look here if i get it. At least you have the first chemo over now and are on your way!
Athens

[Flutte]

Hi all, I'm starting FEC-T tomorrow morning, 3 x FEC then 3 x T.  Feeling a bit nervous but I know it needs to be done.

I have very poor veins so went for a PICC line today, it took over an hour and a half and 3 attempts!!  But the cns was very persistent and thankfully got it in the 3rd time (3rd time lucky really does work!).

I am 51 and was diagnosed late Feb with DCIS and IDC.  Already had wle, snb & anc in late Mar.  Positive nodes and no clear margin so then had mx late May.  2nd op also found LCIS & a small tubular tumor.  In the words of my surgeon I had a 'busy breast'.  Hopefully the other one is on strike and wont do anything silly.

I read the monthly threads quite frequently but now its time to join in.

Take care xxx

[Moll67]

Hi, just popped over from the May 2014 thread and noticed you all mentioning about hairloss, wigs scarves etc and wondered if you had heard of Heathers Hair? (sorry don't seem to be able to attach link) I have a fringe on a headband and wear a bandana or scarf with it.  I have a wig which looks good but is too hot!  Anyway I hope this may be of some use to you and all the best for journeys. 

[Sodastream]

Hi Jinny just popped over from May forum. Like you I ended up in hospital on my first cycle having IV antibiotics and blood transfusion thinking how am I going to get through 8 cycles of this. I am now day 14 of cycle 2 and have had a completely different experience this time, I have sailed through this cycle with minor side effects and have been able to lead a completely normal life getting out of the house every single day. Hoping this will bring some hope to you that just because the first cycle was bad the second might not be. X

[Yankee]

So glad to see you on the Forum Cowgirl!  I'm just popping in from the February (2013) Valentines, when we were going through what you are going through now, losing our hair was one of the biggest issues.  Somehow those little hairs have a lot of who we are wrapped up in them!  I know its hard to believe at this moment, but it will come back -- I went to the hairdresser today because the new curly hair I have now was getting too long!  Good luck with what you're all going through and I hope the path is as easy as possible.

[Roxie65]

Jinny do call your bc nurse and tell her you would like to go see her for a chat. My bc nurse has told me that many times. My doctor also gave me a telephone number for a counselling service should I want to call them as she said my emotional welfare was her concern. xx

[mummy2dolly]

(((((Jinny))))), how many cycles are you due to have?

[Cas164]

Jinny,

You are not alone, we are all fighting this together and I know it's a tough one. Can you call your breast nurse yourself? If they don't come to you you should go to them.

Keep your chin up, sending you lots of hugs and positive energy xxxx

[jinny2611]

I havent seen a breast care nurse for over a month been waiting for counselling since dx end of april i know everybody going through it aswell but im so low ive hit rock bottom got the hair issue next tried wigs on broke down and i hated them its all to much!

[rosie14]

jinny I have popped over from April board. The chemo drugs are very strong and effect us all in many different ways. Just because you have had a bad experience first time round does not mean that the others will follow the same pattern. We all hate this disease you are not alone. I am sure you oncologist will adjust the drugs next time and they can also prescribe drugs for any of the side effects so make sure that you get them! Have you got support at home? Do talk to you team about what happened to you and how they will help you next time. Hope you will feel stronger soon! We are all on this journey together!

[Roxie65]

Awww jinny so sorry to hear you have had a tough time. Hopefully the infection was a one off and now out the way. The hospital will at least now know what to expect and may be able to avoid it with medication. Jut remember we are all here to support each other so any time you feel the need post on here and one of us will soon come along to offer you some support!! Good luck with the rest of your treatment x

[jinny2611]

Well had my first chemo 11 june after been totally petrified then by friday ended up rushed hospital with bad infection pain was unreal had blood in urine was sick and bad the other end aswell. Ive just been disshcarged but this has made my fear even worse im so scared even more for next lot i really dont know how im going to do it feeling bit better just very panicky temp bit low so i panic even more everyone else seems so much stronger and coping far better than i am i hate this disease !

[Roxie65]

Hi Ria

I only had one day of it but my friend who finished chemo February had it a lot. She reported it to the hospital and they prescribed her something and she was fine. Hope you get it sorted x

[Mel51]

Hi there,

Just popping over from the March thread. I also really suffer with heartburn and acid reflux throughout my chemo. It lasts anywhere from 7-10 days and is horrible. Speak to your chemo nurse or GP as they can prescribe some meds to help. They have limited effect for me, but most people rave about them. I take Lansaprazole. Apparently it's a SE of the steroids so I take them from day 1 to 7.

[Cas164]

Hi All,

I got my hair cut into a short bob and I love it. My kids said it looked far better than before! I think I might be surprised how short hair and then no hair might be quite liberating! I haven't looked for wigs yet however I think I might just stick to headscarves.

My friends daughter shaved her hair for charity a few months ago, she's having a blast with her short cropped multicoloured spikes...... I think this is the way...

We could all be a rainbow of colours so long as I can be purple !!!

Keep fighting

Casx

[ria2056]

Morning all

I had my first FEC chemo Monday and have been suffering with heartburn since Tuesday, it got worse yesterday, I am reading through all my leaflets and cannot find it on a side effect list, anybody else had it after their chemo

[cowgirl]

Hi - I am new....just had my first chemo treatment today - TC - Taxotere and Cytoxan.  I am scheduled to have 4 treatments, each 21 days apart.  So, one down - three more to go.  I feel fine so far, but they warned me that it will take a couple of days to start feeling worse.  I dread losing my hair and tried on a few wigs while I was at the clinic.  They were so awful - the one with my color hair looked like I was wearing a small, curly animal on my head.  I will keep looking. 

[Athens]

Great Roxie, thanks for the link and I'll take a look. 

xx

[Athens]

All the best for Round 2 Mummy2Dolly.  Quite envious of the headscarf culture in UAE!

Athens

[Roxie65]

Hi All

Thanks Athens feeling lots better.  Hope everyone else who had any side effects are too!

I decided to wash my hair last night and treated it like a delicate child even used my macadamia oil conditioner lol mind when I think  of it now bit of a waste of time keeping it in good condition as its all falling out!!  Never left any on my pillow last night but have left a trail wherever I have been today lol, my daughter told me I am a health hazard and to stay out the kitchen lol.  I only need telling that once.  My other daughter thinks its time to shave it but I am still hanging in there, luckily my hair is thick so you would not know I have lost any.  Got my two wigs out today though and put them on the polystyrene heads so all ready lol.

Athens as regards the wigs obviously I havent worn it yet but the real hair one I was told to wash as you would real hair.  My synthetic one I was told that it should not be washed too often as it ruins them and that if you shake them and they stay pretty solid this is a sign they need a wash.  My wig supplier said its roughly once a month.  The supplier has 5 short videos on their online site to show you how to do various things with them.  Have a look its www.studionine.co.uk and then click on the wigs and it will take you to the videos they are quite helpful.

Rach I just realised your a day ahead of me so if you have lots of bald patches then it wont be long for me! Mummy2dolly good luck for tomorrow I know what you mean about now knowing what to expect!

Good luck to everyone with their next chemo and hope we all get our medication adjusted so this one will be easier than the last!! xx

[mummy2dolly]

I'm all set for round 2 tomorrow. Dreading it now I know what to expect!! After getting my no 2 all over on Sat I am prob about 50% bald.... I haven't bothered with a wig, it's too hot here and headscarves are the norm so I don't look out of place.....