Starting chemo in March 2014

[Buttercup01]

Debs, so sorry your suffering with the sickness still, ask for Emend, its amazing! 

Eitaki, same here on the hair front, hands full coming out constantly which lead me to having my head shaved today, No1 all over! I did cry just before hand, but feel so much better after! I feel I've taken a bit of control back so go for it!

I'm out tonight with friends for a meal so 'Whitney' is having her first outing  I've just put her on and it feels really strange but I'm sure I'll get used to it. 

[Eitaki]

Debs im sorry you are suffering too 😞 I had horrendous sickness for 8 days, then it was gone. Is it possible to call your chemo team for stronger anti sickness stuff?

[Donnaandfamily]

Hi Debs...........I hope you start to feel better soon.......... I had the head and neck pain ...horrible....and the thumping head when I stand...............keep strong ......... x

.

[Debs-]

hi all,day 6 and still rank,can barely write this..Feeling sick all time,headaches,D&Sickness both at same time,head and neck pains one evening!! When's it going to ease off? Am on day 5 of fec....blurrrrrr

[Eitaki]

Oh you poor thing pansy 😞 it certainly sounds like you need stronger anti sickness meds! Hope they get on top of it for you.

My hair started falling out yesterday, today its coming away in huge clumps and ive got a few bald areas. Its heartbreaking 😞 I have asked my sister to come shave it tomorrow, im leaving trails of hair everywhere so i think its time for the shaving. 

I dont have a wig, but do have many hats and bandanas. Ive actually been stock piling them since my surgery back in January so I am ready for the baldness. 

Hope you are all well. 

[Pansy50]

Hi all the March girls. I had my first fec yesterday, but was sick 3 times overnight and fainted a couple of times, which freaked my poor hubby out as he's never known me to faint. Ended up in a&e getting fluids and iv anti sickness drug. Felt better when I got home and managed to sleep for a few hours. Managed some breakfast but now been sick again so seeing gp this afternoon.  Not a good start to chemo but going to ask for stronger anti sickness drugs next time. Glad first one is over but wishing it was July already. Glad though for the group support. Feel it will be easier to get through with everybody going through it at the same time. Sending hugs to all the March girls Pansy50

[rosie112]

Hi, I had my first FEC on 12th March and ready for next dose next Wednesday 2nd April. I felt the usual symptoms of flu and hangover but got through it. Still got my hair but know it will be very soon when it falls out. Got my wig and headscarves from lovely headstrong ladies. Still wary of the next dose but I am on the train like everyone and cannot get off. Love Suzanne xxxxxx

[tfitz]

Just got back from the hospital after my second FEC. My side effects have been minimal thanks to the anti sickness meds (emend, dexamethasone & ondansetron). Some night sweats (my age - 50), back pain after the belly jabs but nothing paracetamol can't help with. No hair loss yet so Tori (the wig) is still in the box. I think I have been really lucky. Only fly in the ointment is the spike in blood sugar levels but my GP is happy with the general downward trend as I was only diagnosed at the pre-op in November. Oncologist happy with my blood work too. Hope the next week goes the same as last time as I could use the sleep!  It's not all grim, Ladies. Positivity helps no end. Even made a t-shirt for today with  a picture of an antique pig pincushion cos on days like these, that's how I feel! Chins up Ladies 🙂

[Buttercup01]

dh, gutted for you! Know what you mean about just getting on with it! 

I've had my bloods taken today, I hope they come back good and I can have my 2nd round on Friday.

My Consultant has halved and halved again my steroids and also given me tablets to relax me. Fingers crossed I've got the right mix of meds now.

Finally washed my hair last night, what a traumatic event that was! I now have bald patches on both sides of my head. Consultant expects me to loose the lot, obviously the cold cap didn't work for me. How's your hair doing?

Best wishes to all who are having their 2nd chemo this week. xx

[dh]

I've been postponed a week as poorly with flu like symptoms, temperature and high pulse. Gutted, just want to get on with it 😞

[Stelwah]

Thanks Roseberry - my next one is Weds as well, been for blood tests today and seen my oncologist, so good to go for round two.

Sounds like most of us losing significant amounts of hair. I wore my wig to work today for the first time, good reaction though very itchy after a full day. I ordered two headscarves from website called Annabandana. They arrived today and are brilliant - no adjusting or fancy tying needed as come with a scrunchy to tighten it up and are elasticated at the bottom. Definitely wearing one to work tomorrow, and just ordered another three!

Welcome Buttercup - sorry to hear you've had a rough time of it. I hope your panic attacks subside now your first one is over, I definitely had a 'fear of the unknown' for actually having the chemo and also just having no clue what the side effects would be like.

Hope you all have a good week ladies. One down, onwards and upwards.

[Elsieoc]

Hi Roseberry, Thanks for the youtube links they were really helpful. The hair is coming out quite fast now so I'm gonna have to get some practice in at tying a scarf.

[Roseberry]

Good luck Dh, missy12 , stelwah and everyone else having their next round of chemo this week. I have my send session on Wednesday. My hair is also starting to fall out but I am still going to use cold cap just in case my hair is just thinning (positive thinking 🙂 I am planning another 'film fest' for after the chemo with lots of fruit and thirst quenching drinks. Hopefully, it won't be any worse second time round!
Buttercup01, so sorry you have had such a rough ride. Hopefully, your medications will be changed and your next session will be more bearable. Unfortunately, we have no idea how we are going to react until we have the treatment so it's all trial and error but hopefully you will be better suited to the next lot of medications.
Best wishes and good luck all.

[Buttercup01]

Hi dh, thanks for the reply. I'm also quite emotional about loosing my hair and handfuls are coming out! I haven't washed it in days, too afraid what will happen but I must try it tonight with going to clinic tomorrow. 

Hi Looby52, I stopped my anti sickness drugs a few days earlier than prescribed and was ok.  

[Looby52]

Hi Donnaandfamily, and yes I am feeling so much better now. I am going to try stopping the anti sickness tablets tonight, so fingers crossed. We will all get through this. X

[dh]

There are no head strong sessions anywhere near my area.

[dh]

Welcome buttercup 01 so sorry you had such a bad time.
Project kylie great idea but I've tried searching and it's not coming up? Would be much easier for me to use on my phone.
Missy12 yes I am in for round 2 tomorrow and get results from further tests, nervous!!
My hair is coming out in quite big handfuls when u run my hands through it. I haven't hardly touched it today as don't want to loose anymore. It's not noticeable though as I have thick hair. I don't want to waste my time with cold cap again though fir it to all be gone in a few days. I'm going to see what they suggest and if they think im loosing it or just thinning 😞
I will cry my eyes out if/when it goes so you are not alone there xxx

[Buttercup01]

Hi All, 

This is my first post on the forum so it may be quite a lengthy one! 

I'm 34 and was diagnosed with BC early Feb. I started my FEC treatment on the 7th March (I'll be having 3x FEC & 3x T), so I'm now on Day 18 and due back to the clinic for bloods tomorrow (Tuesday) with Round 2 of Chemo on Friday. 

My first chemo was very traumatic for me. I ended up in A&E with what the Doctor diagnosed as a Panic Attack. It came on about 3hrs after the treatment when I was back in the house and was the most scariest thing I have ever been through. Although I was sent home the same evening, my anxiety and heart palpitations didn't subside until Day 7. I spoke with one of my nurses and she has suggested that I may have had a bad reaction to the steroids and reading the side effects of these it seems my symptoms are text book!

I have thought long & hard about posting this as the last thing I want to do is frighten someone who is due to have their first chemo this week, but I wanted to know if anyone else had these feelings after their chemo as I can't find any other posts relating to this? 

I am looking forward to meeting with my Oncologist tomorrow to hear her views and whether anything can be done/changed for Chemo 2. 

Other side effects I have experienced are extremely dry mouth during the first week (I was consuming approx 3 liters of water a day) and tiredness up until Day 7/8 (Day 1 through to 5 were a complete blur). Also had ulcers in my throat and on my tongue but using Corsadyl mouthwash to keep these under control. Had no sickness what so ever, however, I was prescribed Emend which seems to be a wonder drug! 

My emotions have been a bit all over the place as well, crying at a drop of a hat! Even reading the forums set me off. 

So today will be Day 18 for me and although I wore the cold cap, my hair is falling out. It started last Thurs/Fri with a pins & needles type feeling on my scalp. I have quite thick strong hair so I am surprised how quickly I am loosing it, however, thinking positively, maybe this is just a thinning process?? 

I got my wig sorted out before I started chemo so 'Whitney' is on her stand ready for an appearance if I need her.

Anyway, I think that's a long enough first post. Please let me know if anyone has experienced the same side effects, especially the anxiety. Not looking forward to Chemo 2 at present! 

[Donnaandfamily]

Hi Looby

hope you are feeling better......... your next session may be totally different......fingers crossed......I hate not knowing how I will feel each day I wake up..........

..

[ProjectKylie]

Hi all, I've set up a FB group this morning, search -

Breast Cancer Care - Peer Support

I thought this would be useful along side this forum, I hope some you agree. Lisa L (Project Kylie) xx

[missy12]

Dh I think me and.you.are having.our second cycle of fec this coming.week. How is your hair? Mine is falling out all the time its.upsetting .especially if.someone says are you okay? Of course I am.not but.nothing I can.do about it, heartbreaking. Im going ti a headstrong group session tmrw morning so will let u know how it was.

[missy12]

Hi I am on.day 20 eitika and.hair is falling out badly, did have the cold cap too. Have second cycle on.thursday. I cried a little today over hair falling out

[Roseberry]

Elsieoc, apologies for name spelling, I was sure I had typed it right!

[Roseberry]

Elision, if you google 'how to tie a headscarf ' there are lots of Youtube videos with examples. I have been to a headstrong session but I found these YouTube videos helpful too. I have been doing lots of googling as I have no idea about how to tie a scarf; I am also nervous about how I will look as I am out of my comfort zone. Here are a few examples, I hope you find them helpful.
www.youtube.com/watch?v=IaPNix3z-Aw
www.youtube.com/watch?v=8EoEE3cthog

[Kirstie77]

Hi Missy12, I just wanted to say I had double mastectomy with no implants, and waking up with nothing wasn't that bad for me i just think I look a bit odd and I had lovely C cups, my doc advised against implants, though he said about 20% did have implants at the same time. It really is up to individuals as to how they think they will cope when they wake after surgery I think, I am more scared of the chemo than I was of that.

[Looby52]

Hi Stelwah, I had temporary implant fitted after my mastectomy in January. I have to go every four weeks to have more fluid added. It did take some getting used to but now it's become part of me. I'm glad I chose this option because it made me feel like I still had some breast and I was able to keep my nipple.

[Looby52]

Hi Donnaandfamily, glad to hear your 1st chemo went well, unfortunately for me I ended up in A & E the following day with the worse bout of sickness I have ever experienced in my life. Thankfully after been hooked up to a drip with antisickness, fluids and a multitude of tests I was allowed to go home later that day. I have been given stronger antisickness drugs that thankfully are working now. I am really not looking forward to my next session.

[Stelwah]

Hi Eitaki - my hair started going on day 13 (last Tues). It's now very thin and can see a lot of scalp so can't now go out without covering it. I wore my wig out last night to a club - it actually looked great and my friends brought some bubbly to toast my wig's first outing 🙂

My hospital gave me a voucher for a free wig - they give them to everyone regardless of personal circumstances. Wore a baker boy style cap out to the shops today, and just ordered two headscarves from website called Annabandana that look great. Going to book on the HeadStrong session at the hospital to be shown how to tie the scarves properly.

[Roseberry]

Hi all, I got an 'Appliance Request Form' from the hospital to supply me with a free wig from the hairdresser at the hospital; the hospital give the form to everybody irrespective of their income. I haven't made an appointment yet but will do so in the next few weeks either at the hospital or at his salon in town.
I would ask your breast cancer nurse for further information regarding the service through your hospital.

[Elsieoc]

Hi Eitaki, mine started coming out yesterday which was day 15.
dh - I get tax credits so am able to claim a voucher for a free wig. I think people who aren't can still get a voucher for some of the cost but I don't know if that depends on where you live.
Lorna

[Ann123]

Hey Ho...Don't give up with the cold cap sweetie.  I had six rounds of TCH 

Finishing in January this year I used the paxman cold cap and lost a bit of hair but

Always had a full covering . never needed my wig or bandana which I had bought ready.

Hang on in there you can do it. Xx

[Ali24]

Hi Wildpurl, I am sure you are right. Just don't like not being in control. This is now something I will have to get used to. x

[dh]

I am on day 18 and starting to loose more and more hair everyday and I wore cold cap. I have thick hair so it's not noticeable but I am dreading it going. I'm back in for #2 on Tues and will wear cold cap again but probably the last time. I have my wig already and I didn't need a voucher or exemption certificate.
No one has mentioned exemption to me, how do go about sorting that?? I have maternity exemption at the mo but need to sort it for when that runs out.

[Eitaki]

Well done ladies that have had their first chemo. I hope side effects will be minimal.

For those that are starting to lose their hair in clumps, can i ask what day past chemo you are on? Im now 11 days past chemo and no hair loss yet.

As for me, i seem to have no side effects at all now the nausea has gone. I assumed i would be really tired/drained this week but so far hasnt been the case.

[Ali24]

Thanks Donnaandfamily.
Glad to hear youre doing okay. Keep well. No. 1 over with. Still nervous but hopefully won't be as bad as I think.. Will try drinking plenty of water. just hoping my oncology unit gives the same anti-sickness meds as yours. Thanks for the tip regarding keeping my hand warm. My veins are not the best. Or so I've been told. x

[Ali24]

Hi Debs, sorry yesterday was crap but glad to hear your doing better today. That's the first one out the way. Keep strong. x

[Elsieoc]

So I found the perfect wig yesterday.

I can get one for free but when I went to claim my voucher I didn't have my actual NHS exemption card and I couldn't get the voucher without it.

The lady in the shop has put it by for me to collect on Tuesday but today the hair has started to come out. It started with a few stray hairs on my shoulders etc but now it's coming out in clumps.

I've got a few scarves at the ready but have no idea how to tie them & each time I try it ends up in disaster. I'm  quite calm about it at the moment but the more hair that comes out the more anxious I am starting to feel.

Lorna.

[Roseberry]

Hi all, hope you having a good Saturday and those of you who have had chemo this week are not suffering too much with side effects. Hopefully, you will all soon be feeling good again.

I think my hair is also starting to thin and it is starting to fall out; a positive note is that certain body grooming is no longer required, lol!!

Rosie14, welcome to the group. FEC-T drug description can be found at www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/fect

[Debs-]

Hey all,started fec yesterday with cold cap....felt terrible 3hrs later...feel a bit more human today. Bluuurrr. Had Amend too and all the anti sickness drugs we get.Dread to think what i would have been like without them. Cold cap gave me migraine but i stuck with it (am migraine suffererer anyway)...1st 20mins of paxman cap is the worst then settles down,bit cold though lol. x

[Stelwah]

Thanks Wildpurl - great to hear you had a good result with your implant.

Had a low day today. Hair coming out in handfuls now, and made mistake of trying on a dress in a changing room with lots of mirrors. Seeing how thin the hair was at the back and seeing lots of scalp along my hairline turned what was supposed to be a nice pop around the shops into an upsetting experience. Had a bit of a sob on my boyfriend in the middle of the shop - even though I knew it was coming, still utterly crap. Bought a material alice band to try and cover the worst for a couple of days before I admit reality and get the clippers out. Just bought two pretty headscarves online to make me feel a bit better, and going to book on the HeadStrong session next week.

[Donnaandfamily]

Hi Ali

I started yesterday....I was given anti sickness meds called Emend one hour before chemo...... and to take home one a day for today and tomorrow.of the Emend..in addition to other antisickness tablets to take four times a day

I drink 2 litres of water ..daily which seems to be helping.......thankfully no sickness nearing end of second day

The nurse also said the steroids are not compulsory....just use on days if feeling lack of appetite etc....... also I have been given sub cut injections to promote white blood cells growth in readiness for when the levels drop,

I was scared before going...relax and please know it was not scary at all...very calm with no pian or strange sensations....... a nice hot blanket was wrapped around my arm because it can be cold.........keep your hand warm prior to going to make your vein nice and easy to find

Good luck and you will be fine...... xx

[rosie14]

I am now hoping to start on Thursday after a weeks delay due to an infection following biopsy. I live in Cyprus so I don't understand your codes for chemo drugs! Not sure how to find out which cocktail it is! I am going to the hairdresser on Monday to get a good all over cut without having it graded! It's bad enough with the dog molting I don't want to start! I am praying I don't have sickness or diarrhea I can cope with anything else!

[Donnaandfamily]

Hi Looby

I hope you are well and got through yesterday ok. Scary day but glad we are now passed it

I drank lots of water as the ladies on here advised....and pink pee stopped late evening.......Fingers crossed and still no sickness.......lots of face flushing though......so cant miss me in a crowd.

I did not go for the cold cap and will dread losing my golden locks (always been my pride and joy)....but two wigs at the ready which I wore to work a few times to see the reactions..... which was positive

I hope you are ok .....take care xxx.

[Donnaandfamily]

Hi Looby

I hope you are well and got through yesterday ok. Scary day but glad we are now passed it

I drank lots of water as the ladies on here advised....and pink pee stopped late evening.......Fingers crossed and still no sickness.......lots of face flushing though......so cant miss me in a crowd.

I did not go for the cold cap and will dread losing my golden locks (always been my pride and joy)....but two wigs at the ready which I wore to work a few times to see the reactions..... which was positive

I hope you are ok .....take care xxx.

[Donnaandfamily]

Hi Looby

I hope you are well and got through yesterday ok. Scary day but glad we are now passed it

I drank lots of water as the ladies on here advised....and pink pee stopped late evening.......Fingers crossed and still no sickness.......lots of face flushing though......so cant miss me in a crowd.

I did not go for the cold cap and will dread losing my golden locks (always been my pride and joy)....but two wigs at the ready which I wore to work a few times to see the reactions..... which was positive

I hope you are ok .....take care xxx.

[Mel51]

When I went to look at wig it was one of the best things I ever did. I managed to get a pretty close match to my hair colour and style. I feel like I would need to be comfy wearing a wig in public first, before trying out a wacky style. However, I did try a variety on in the shop which was a giggle. It was such a relief when I got it sorted. I haven't bought it yet, but I know the exactness I need to order if/when the time comes!

Good luck

[Elsieoc]

Thinking of going wig shopping today. Not sure whether to try & match my own hair of go for something completely different.

My friend is coming with me & she will probably try & talk me into something a bit whacky but I don't know if I'll have the confidence for that once my real hair is all gone.

It's gonna be a bit weird trying them on while I still have hair but I want to be prepared for when the time comes as I might not feel up to going shopping then.

Lorna

[Wildpurl]

I forgot to add my age, I'm 57

[Wildpurl]

Hi Ali24, as I'm not an expert, I won't try to comment on the details of your treatment plan, but I just wanted to say that all treatment decisions as far as I know are taken by a multi discipline team, so they are sure all aspects are covered, and is based on data, either research findings or historical data about what works best. It is terrifying, but I am sure your team is doing the very best treatment for you.

Hope it all goes well next week, I'm having the same the week after you 🙂

[Wildpurl]

Hi Stelwah, I had a mastectomy with implant in January. It wasn't as bad as I thought it would be and I am really pleased with the result. I think I have found it far easier to come to terms with the surgery than if I had not had a reconstruction.

[dh]

Kereleene it is tough with my little ones and I don't get much rest but at the same time they are the reason I get out of bed each day and why I will fight this. My 5 yr old has type one diabetes which is a huge job in itself and only really have myself and husband that can take proper care of her needs. 

Yours are only babies too 😞