Anyone starting chemo in July 2015?

[Josie11]

Hi Manicmum, glad to hear you're not feeling too bad and aren't mums great! I'm so lucky that she has been able to look after the boys and help out.

[Manicmum89]

Well I'm happy to report I feel quite well after my second round of fec yesterday. Felt a bit rough last night, but not too bad today. So glad to be at my mums so she can look after my girls (9&4)
Injection start again tomorrow, which I hate doing and cause me pain. But thinking positive.
Much love to you all. Stay well x

[joyce11]

Thanks for the help with managing my painful scalp - today I think is the day when what I have left comes off! My saddest point about this because yes I know it will grow again is I am an identical twin - we have the same hair as well as evrything else feature wise so it will be like a temporary loss - maybe only a twin can realise what that means. On the positive the scalp will hopefully stop aching and itching and a slightly different hairstyle might be good for me. Second chemo that was delayed because of my WBC count but due for next week so we move onwards!!

[Mazzi]

Hi Ann, I had my first chemo on the 14th and am basically having the same as you with regards to chemo first, then surgery and radiotherapy, the only difference is I have started with T. On day 10 now and bone pain still an issue but seeing my consultant next week so hopefully can work out the pain control. Hope it all goes well and welcome aboard!!

[Josie11]

Hi Ann and welcome 😀. You're just one day after me on this chemo road and my boys are 8 & 10. I hope you've got past the worst of this round and can enjoy some of the holidays with the boys. You must be still reeling as everything has happened so quickly. I was diagnosed in May then had a mastectomy and full lymph node clearance at the start of June, 1st chemo on the 15th and after it will be radiotherapy and anti oestrogen treatment.
I've got a tingly head today so I'm guessing the hair loss is not far behind a and my purple wig will need to come out ;-).
Hi manicmum, I hope you're not feeling too bad tonight, x

[Ann1976]

Hi! I've been trying to get the hang of writing a message without much success!! I had my first round of chemo FECT on July 16th & reading all your posts has been really inspiring! I'm 39 with 2 sons aged 10 & 7, I was diagnosed 4 weeks ago & am having chemo then surgery then radiotherapy. Anyway, just wanted to say hi & I hope this posts this time!! xxx

[Manicmum89]

Peta thanks for that advice, think I've got about 20% of my. Hair left which is so itchy and sad to look at. Might have to be brave.
Had second FEC today. So a third of the way though.
Hope everyone is well x

[Ann1976]

Hi! I had my first lot of chemo on July 16th, I'm having 3 FEC & 3 T. So far I think I've been quite lucky regarding side effects, very tired & naucous for the first 3 days but still able to function. I've enjoyed reading all your comments & the inspiration has helped me a lot!! I'm 39 with 2 sons 10 & 7 & a husband who has been amazing. I'm feeling better as each day passes & at the moment just feel like I'm waiting for my hair to go! I'm wig shopping tomorrow!! Anyway, thank you all for helping me through this rough time so far!! xxx

[Peta]

Hi Joyce

I'm from the October 2014 thread.  I finished chemo in Feb this year.

My head was really painful when my hair started falling out, it felt sore like it had been scalded or had sunburn.   I used to sit with a packet of frozen peas on my head, and that helped a bit, although the relief was only temporary.   When I gave in and finally shaved my head - just after I'd had chemo 2, it really did help to stop the sore head from hurting.  I was also able to slap on lots of nice cold cream, which soothed it lots.  

Good luck and best wishes to everyone!  

[joyce11]

Hi Kobeobe7 yes please send me the link for the padded headband that would be great.

[Kobeobe7]

Baz that all sounds pretty horrific for you. I hope you're over the worst now. Now I'm feeling scared for Day 4 when I stop taking Emend! Xx

[Kobeobe7]

I'm glad your port went in ok Manicmum. I got a PICC put in the day before chemo and was glad I did. The chemo was quick and I'm much less sore from the PICC even just a day later.

Ros53 - I asked for Emend as I really didnt want to revisit morning sickness symptoms ever again. So far it's been brilliant. Bit more nausea on the actual day of chemo but day 2 and I just am eating a lot and keeping the nausea at bay. I hope you find it works for you too.

Joyce I found a padded headband that you put under any scarf to give it a bit of depth. Do you want me to message you the link?
Best wishes to everyone xx

[Bazookas]

Hi, I'm now on day 7 after my 1st chemo (July 15th) and it's my best day so far. Was completely knocked out for the 1st four days and I felt like had bad flu with a terrible hangover and shaky with what felt like a loud heavy heartbeat - hard to describe! I had that great anti sickness drug Emend for 3 days and seemed to be almost nausea free for most of the time. Then on Day 5 after chemo I felt so sick and ill that I couldn't walk, drive or do anything but lie in bed! I have one DD age 10 and I couldn't even go to the door to let her in after she was dropped home by a friend, I had to call my mum to come over to answer the door! My DH went to the clinic that eve and got some different anti sickness mess that worked, thank goodness! Today I feel drained of all energy, I got the tube to my appt to have my Port stitches removed and have more fluid drained from the site of my mx. Felt so exhausted had to call DH to come and get me in the car! But I don't feel sick or drunk or like I have flu so it's great! Hopefully from tomorrow things will be good - until the next chemo session! The doc today said they will tweak my anti sickness meds now they know how sick I felt and I'll go home with better needs after the next chemo. Hello & good luck to everyone just going through chemo. I will go back and catch up with the thread now!
Baz x

[Mazzi]

Hi Manicmum, glad the port fitting went ok, I'm sure it will make things a lot easier. Good luck for treatment tomorrow, at least you know what to expect and will be more prepared x

[Manicmum89]

Hi ladies. Had my port fitted today. Wasn't as bad as I feared, didn't even need sedation. Neck is a bit sore, and have a very swollen area where the cannula was, but so glad to have finally had it done.
Second FEC tomorrow.
Keep well x

[loulou40]

Hey Mazzi, sorry to hear about your brother too, that's so rubbish 😞 your right we all have different types of chemo but you'll find breast cancer is treated either With FEC, FEC-T or TAX intravenously. It's not so much a pain threshold, it's about listening to your body and it's needs every time and sometimes going against your symptoms to work out of them for example nausea can be made worse by hunger, force you body to eat often and you may eat yourself out of nausea. It works for me, just wanted to share little tips tyhat have helped me so far to get u all through. Lots of water for the first few day and try and keep pottering around if you don't feel to ill, I find lying around only makes my symptoms worse 😞 Hope all your cycles are good ones and wishing you lots of luck with ur treatment ladies. Another 4 weeks and I'm through the chemo stage, radio and herceptin next, but the hard part will be over and it will for you all too before u know it 🙂 xx

[joyce11]

Thanks for all the useful info about padded scarves-my flat one looks flat if you see what I mean. Has anyone experienced a sore scalp as hair drops - any remedies / suggestions - does it go once all hair gone??

[joyce11]

Thanks for all the useful info about padded scarves-myflat one looks flat if you see what I mean. Has anyone experienced a sore scalp as hair drops - any remedies / suggestions - does it go once all hair gone??

[Ros53]

Kobeobe - Thanks for the reply about Headstrong.  It sounds just what I need.  My nearest one is Preston so will give them a ring today.  Hope the nausea isn't too bad after your first chemo.  It does pass after a few days; just keep taking all the tablets your given.

Mazzi - Think I will probably go for padding, like you say for volume.  I have a Boehmia leaflet and it was when looking through that I hadn't a clue what style to choose; never realised so much choice. 

Wishing you all a lovely day and hopefully the sun will shine to make the day brighter.  xx

[Mazzi]

Hi All, with regards to headwear I bought a couple of things from Bohemia headwear, just look them up on Google, quite a good range available. I got one of the padded style scarves as they are really easy to tie and give you a bit of volume instead of flat to your Head. I was put in touch with a local hair salon where I purchased my wig and they also had a range of hats etc, bought a cap style with ties as my eyes are sensitive as it is to strong sunlight and may become more so during treatment. There are also a few useful videos on you tube that show you how to do headwear and make up tips to.

[Manicmum89]

I'm in harrow, nearest one says Southend? Is that right?

[Lucy_BCC]

Hi Joyce
I have just had a look and you can type in an area and it brings up a list of those nearest to it, these are the nearest to Kent but if you type in a more specific area it may bring others up you can access:

https://www.breastcancercare.org.uk/in-your-area/support-events?field_service=114

Hope that helps

Best wishes
Lucy BCC

[joyce11]

Hi Lucy

I looked at the headstrong site some time ago nd couldn't see anything in Kent - Have I missed it?

[Lucy_BCC]

Hi Kobeobe

Hope you don't mind me jumping in here to post the link to our Headstrong service in case other users are interested in finding out more about it too after your wonderful feedback:

https://www.breastcancercare.org.uk/information-support/support-you/coping-hair-loss/coping-hair-los...

Best wishes all
Lucy BCC

[Kobeobe7]

Ros I did go for the appointment and was glad I did. There was a lady who had had breast cancer and a hairdresser there and just me. So it's an individual session. They had a whole range of different headcoverings so I could try them all. Much better than trying to imagine what things look like on the Internet. They gave me a free scarf and also had a good range of scarves, sleep hats, buffs that they sold at cost price. It wasn't a hard sell they were just there if you wanted to buy. So overall a very positive experience. Plus tips on how to manage the shedding and how to care for your scalp. You can go at anytime so before you've lost your hair or after. Also lots of scarf tying tips.
I've just had my first chemo today and am just trying to ignore the nausea which is definitively building. Banging head too. Lots of love to all xx

[Ros53]

Kobeobe7 - Did you go to the Headstrong appt?  I have been wondering whether to book an appt as I need help and advice in scarf wearing.  I have never worn any hats or scarves so complete novice.  Do you also need to wait until hair loss occurs.  I have noticed some head scarves have padding and some don't, so need some tips.  I just want to be prepared.  x

[hopefulholly]

Hi girls, had PICC line fitted today, all good, nurse hit the right spot first time!

Ros, I didn't have the cold cap for my second FEC on Friday, I'm afraid it just wasn't for me but good luck with it, let us know how you get on.

I'm sorry you've had a tough time Joyce, just think about the fab holiday you're going to get when this blip in your (our) lives is over!  

Hi Potts, I think the thread here and others show how everyone is different and has different reactions to the drugs / side effects - just look at loulou, I feel tired just reading your thread, but it shows that chemo is doable.

Josie, I'd love to see a photo of you in that purple wig! I've promised my boys (3 adult sons and hubby) that we'll have a family photo when I get my head shaved (all 4 of my boys are bald!).

Fanta, 2 down, we're getting there.... Best wishes everyone xx

[joyce11]

Hi Ros

I asked if there was anything I can do about the WBC but there isn't other than keep checking my temp. Apparently quite common and I hadnot really factored it into planning things - like husband's diary to take me etc. Hair coming out ++ so sleep in a very attractive night cap - better than a mouthful of hair. Was going to go with the coldcap today but will seehow much is left by next week and if my new wig is good then might just shave off and coverup lol.

[hopefulholly]

Manicmum, I use colouring books too, very relaxing and therapeutic. Good deals on ' The Works' website, books and pens.

[Ros53]

Hi Ladies. Not posted since I had my first FEC chemo.  Which did not go too well, not a good patient!  Blood pressure went very low and not sure if it was the chemicals or the cold cap that made me spaced out.  I was sick at the Hospital and sick a further 3 times that night but following that just felt extremely nauseous.  On leaving I was given Emend to take before I leave home for my next chemo and reading about this I am hoping I will not have the same experience as last time.  I have downloaded the Mindful app as recommended and surprisingly it does have a calming effect and I now use the Breathing pause during the day.

Joyce11 - it must have been so depressing to have the chemo postponed, something I hadn't thought of.  I have my mind set on the dates and am just focussed on getting through them without delay.  Were you recommended anything to increase your WBC? Also has the hair loss continued even with the cold cap?

Hopefullyholly - did you go ahead with the cold cap on your second chemo? My next chemo is 28/7 and after the last experience I had decided to ditch the cold cap but as time is drawing nearer I feel I want to give it another go. My hubby and friends have said not to bother but it is not them losing their hair and as Manicmum said when that starts I think it will hit me that it is really happening.

On my two good weeks I plan things to look forward to; I am becoming an expert in Afternoon teas which also means I need to do alot of walking and I go with one of my friends to Silver Screen cinema (not over 55 but we must look it to the young staff!) and enjoy a cup of tea, biscuits and whatever film is screened. 

Good luck and a virtual hug to you all - we are all getting through this together.  The posts on here keep me going knowing I am not the only one trying to bravely get through this. xx

[Mazzi]

I just wanted to mention that although some of us are having similar chemo everybody has a different mix of drugs, reactions and pain barriers. Myself and my brother are both on chemo, he has the tablet form as his is brain cancer and has virtually no side affects apart from fatigue, I on the other hand have just had the worst week of my life with bone pain and fatigue and I always considered myself to have a high pain threshold. The basic rules are if you feel good then continue as normal but don't push yourself if your not physically or mentally up to it during the week straight after chemo. 

I to am looking forward to going away when feeling better and I also have a spa day my son bought for my birthday before diagnosis which I am saving for when chemo ends in October. Have a good day all x

[Mazzi]

Hi Gaynor, ibuprofen is good for bone pain but I was given Tramadol. You need something strong for the first week and make sure you drink lots, you will feel better in a few days 🙂 x

[loulou40]

Hi Ladies, just wanted to leave a quick note about chemo. I was diagnosed in march with IDC grade 3 her2+ ER- No lymph involvement. I have recently had my 4th chemo, 2 more to go! I just wanted to share that I have been great throughout, I have mild nausea, heartburn and headaches for the first 2-3 days then back to normal for the rest, it hasnt been accumulative so far. I keep positive throughout, keep active, don't lie and dwell, eat and drink my way out of nausea, the worst u can do is to not eat, little and often if u can't manage a meal. Drink loads of water and just keep pushing forwards, you can do it. I have 3 kids, 3, 5 and 14 and the only difference they see in Mum is a bald head! I make myself busy all the time, have done he race for life post 3rd chemo and am just organising a summer fete for a local cancer charity at the end of August. It's doable if you keep strong and positive. Good luck with your treatment and keep striving forwards, it's a small chunk of your life to make sure u will come out of the other side winning xxx

[joyce11]

Thanks for the suggestion have already been looking at post treatment trips and have a number of high cost ones in mind -  well quite a lot of money saved this year justifies the expense at least apart from the obvious reasons to enjoy myself.

[Fanta-CB]

Joyce that really sucks about time away... In fact since reading your post I am already planning post-treatment trips. Some with family and some just for me. I'm going to become much more "high maintenance" I've decided. Lol. 😍

[Manicmum89]

Fanta, for mindfulness try an adult colouring book! Helps pass time and to take your mind off things x

[Fanta-CB]

Hi all. Had 2nd FEC 75 on 16th. Nurse said effects might be similar and not get accumulativly worse so was encouraged. It has been true to a point but am now being careful with mouth hygiene. Am doing salt rinses after eating. The inside of my nose is a bit sore too (yuc TMI). I am continuously managing headaches. I am getting a hair piece and a wig I think. Big bald patch on top. Feeling rubbish about the hair going. It's already changing the face as am receding in hairline and around ears. I hope to keep brows and lashes?!!!! Had awful nightmares last night and am bored of feeling so not ME. I feel as tho am in a computer game. On the plus side def recommend Emend. And ginger beer. So much fizzy water. 1/2 pack of Percy pigs when shoe shopping with kids yesterday. I find it easier when I'm up and about, doing job (admin) from home busy during the day and then early bed. At least I feel as "normal" as I can if I function as normally as I can. I hadn't anticipated how strange it would make me feel emotionally though. Tearful etc. and, is that because of the chemo drugs or the broader spectrum of "cancer treatment". Ho hum! 2 down 4 to go. I have also googled Mindfulness; suggestion of my bro. Im not THERE with that yet totally, but seems as tho it will help a bit. Am feeling good today and so send all good feelings. Am so glad to have the thread to normalise everything. Thank you all xxxxxxxx

[Josie11]

Hi Gaynor, just seen your post and I hope last night went better than you thought. I resorted to using both brufen and paracetamol simultaneously but it wasn't enough to give me sleep. Last night I had 1 20mg cocodomal from my gp and that has made a huge difference as it made me sleepy too. The other things that helped me were heat and long warm showers where I did my post op exercise with the water running over the area. Getting outside helped too as it helped me mentally. The trouble with pain is that it gets you so down and so tired and then your capacity to cope drops and the pain feels even worse.
Be kind to yourself, have you tried relaxation exercises, mindful meditation? Not for everyone but if it is for you it will help. But above remember that it will pass - day 5 was my worst day of pain ( I can't remember what you're getting, I'm on FEC) and I found an old thread with people saying the same thing - they said it got better in 2 days and I can say that yesterday which was day 7 for me was so much better. Xx

[Nikki49]

Hi Gaynor, I remember that feeling well. If it's anything like mine it should ease after 3 or 4 days.
Did you read my post on 20th July below - recommend you ask your team for the 'steroid tale' for next time.
But for now I would take paracetamol every 4 hrs, ibuprofen every 4 hrs and codeine every 6 hrs set an alarm so you remember when to take the next dose.
It's ok to take these 3 drugs at the same time as they're from different families, take paracetamol and codeine then 2 hours later take the ibuprofen, 2 hrs later take paracetamol etc etc. Prior to taking any tablet just check your temperature. Word of warning read the codeine packet to make sure it doesn't have paracetamol in it cause you'll be taking too much paracetamol.
Not sure you can buy codeine on its own over the counter so you may need a prescription from your GP
Take care

[Gaynor1]

Well day 5 if first chemo and worst day yet! Felt like I'd been hit by a bus absolutely exhausted and since tea time have been suffering from bad bone pain, cannot seem to get it under control have rang helpline and they said to take ibuprofen which I have but doesn't seem to be hitting it is there anything else I could take other than paracetamol ( no temp)? Grateful for any advice and/ or suggestions don't think I'm going to sleep tonight
Thanks in anticipation
X

[Mazzi]

Hi manicmum, I am wondering how I will eventually feel about hair loss, joking about it now but not sure when reality hits. I have a shoulder length Bob and still wondering wether to go short before.

Joyce, sorry to hear your chemo was cancelled, it must be so frustrating when your mentally geared up for it, my brother's was also cancelled today due to low blood count and now has to wait another week.

Josie, I like the idea of the doughnut as I to had horrible neck pain for a few days, May have to give it a go.

Miarose, make sure you take it easy, had my first dose a week ago and I was beginning to think I would never feel well again but today I have definitely turned a corner, drink plenty even if you don't feel like it and take whatever painkillers are offered, the stronger the better, I already know the next session should be a little easier as I now have the meds I need. Night all x

[Manicmum89]

Must share, worst question on the genetics form. What do you think is your percentage chance of getting cancer in your lifetime? Der. (As my 4 year old would say)

[Josie11]

Hi Miarose, look after yourself and keep drinking,x I had a teapot filled with ice beside my bed so that I always had a cold drink and listened to an audiobook and music the first night. I hope you sleep. It does improve.

[Miarose]

First chemo today. Wasn't too bad a first but now have a massive headache, hot flushes and feel a wee bit sick. Hoping this will ease off. If it's doing this to me I hope it's battering those cancer cells! Lol glad to be able to be part of this lovely group. Good luck all x

[joyce11]

Thanks for the thoughts ladies - I have to say that the wine has numbed the negative feelings a bit!! I will meet with some friends in Canterbury on saturday and my poor husband will spend even more time trying to juggle his diary commitments to fit in with new timings. Found a new wig lady today whose offerings made my current wig look like  rat so that was a good thing to happen today.Hair still falling like rain.

[Manicmum89]

Joyce that sucks! I'm so sorry.
Josie your post made me smile. My 9 year old keeps telling me off about my hair coming out... As if I was making it come out!
Good luck for tomorrow hopeful holly!
Take care x

[Josie11]

Oh Joyce, I'm sorry. I hope you can find something nice to do so that you can remember this bit as a positive wait.
I was looking at out local hotels 'high tea' with delicate smoked salmon sandwiches and lovely cakes and wondered if it might be my week 3 treat. Can't see my farmer hubby there though....
Mazzi, I hope things are a wee bit easier
Manicmum, will be thinking of you over the rest of the week
Rachelr , thank you so much for popping in - it is so good to hear from people who have made it through. My gp really didn't want to give me anything but I have been using heat, gentle exercise and everything I can come up with so I've 30mg cocodamol for tonight.
Hopeful holly, I hope you've been not too bad since FEC on Friday and that your picc line goes well tomorrow. And thank you for the smile - I hope you've not been scrubbing doorsteps though,x
I'm currently wearing a foam doughnut round my neck as my gp thinks it will help my shoulder and neck pain and so the headache - it's just lovely....and my boys will be ending themselves tomorrow if I'm wearing it when they come home. I've also just ordered a cheap purple wig from Amazon to make them smile. My youngest says he's moving out when my hair comes out as it's just not right for a lady to have no hair - the charm of an 8 year old!!
Take care all,x

[Potts01]

Hi All,

I posted a long post last night but got directed to this as a more appropriate thread...

Without going into the everything again the basics are I have been offered chemo as part of my treatment as I had lumpectomy plus reconstruction and approx 10 lymph nodes removed as one out of the three from biopsy was cancerous.

I obviously want to do all I can to get rid of it an  prevent for the future but I really want to know how bad chemo is hair loss I can deal with but as I have a young daughter 1.5yrs old will I be able to manage looking after her. What are the real side effects ie do you feel ill most of the time between sessions etc?

Thank you in advance x 

[joyce11]

Apparently cannot go away as there is an increased risk of infection and wuld have been 200 miles away from home with my twin sister - so cannot go according to chemo unit - so now even sadder and hitting the wine.

Next year will be a year full of breaks and holidays I have decided.