Hi everyone, I tried to post on here but felt so chocked. My young daughter was told she has breast cancer over three weeks ago.I rushed her to our A&E with pains under her arm. The breast care clinic did various test and told us her tumour is 2cm and gone to her l.nodes under her right arm. tests and scans have shown the cancer is contained in the right breast and l.nodes.
The team of doctors decided the best way forward for my daughter is Chemo over 18 weeks to shrink it and then surgery. Yesterday she had her first FEC + chemo. She put on the cool cap and every half hour they changed it to a fresh one. She had 3 in all.
She is a sports person and seems to be coping well. she had a good night with only a little nausea and headache sometimes feeling dizzz.
Very very tearful and not married and no children.Nothing ever prepred us for this and what was to follow. Reading all your posts has given me and my family great comfort.Many thanks for this.
My daughter is now worried when wearing the cool cap the treament will miss areas in her head.She did feel the drug going round her body and her head.
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welcome to our forum for those of us going through chemo although I’m sorry you’ve had to join us.
I have had 4x FEC and have two more to go. I have used the cold cap (Paxman system which is slightly different from what your daughter is using) for each cycle and I still have my hair! It has thinned throughout and I can feel it’s noticeably thin on top and a bit cold in this weather but everyone else says they don’t notice until I point it out. I tend to wear hats or a headband/scarf wrapped around my head outside. I would recommend your daughter does as little with her hair as possible - only wash once a week (use batiste dry shampoo in between if it’s greasy), brush only once a day, use no products and a very gentle shampoo and conditioner as the hair mostly comes out when it is washed. With the cold cap I have found that I had the tightest fitting one I could cram on my head which was uncomfortable, but it seems to work. The cap didn’t touch the top of my head properly which is why I think I am thinning there. I use conditioner on my hair to make it wet before the cap goes on - this makes the cold contact better. It is very painful for the first 15 minutes and then my head goes numb and isn’t so bad. For me it has definitely been worth it.
Otherwise it’s a bit hit and miss as to whether she’ll lose the hair - it depends entirely on how she reacts. I have tended to have every side effect going except losing my hair whereas others lose their hair immediately and have no other side effects. Personally I would rather have lost my hair than have the side effects but this is a personal thing.
I presume your daughter is having surgery first to reduce the tumour to make surgery better and avoid a mastectomy? This is quite common and seems to be very successful. I hope it works for her.
You don’t say how old your daughter is, but there are many young women on this forum. I also am unmarried with no children but not so young at 43! I was also very sporty and fit before diagnosis and have lost this fitness during chemo - I think it is very difficult to keep fit while going through this, but I plan to get very fit again next year! I have also put on weight as the drugs can make you crave loads of stodge, but your daughter will find what suits her best. You just need to accept what happens and not fight it.
I wish you all the best and hope things go well for you all
Hello everyone, I’m really down this morning, my hair has started to fall out, now I know it’s really true what’s happened . Sorry.
So many of you are worse off than me,it’s just a bit overwhelming at the moment. Sorry. Best wishes to everyone.
love Kath
Jen1 sorry about your daughter, thinking of you both.
I’ll be alright tomorrow. K
Thank you all for your posts. Last night my eyes were so swollen from crying I looked like Miss Piggy! (attractive - Not!) Such a terrible day. This morning I gave myself a talking to. My first waking thought was Tax, my second was I cant do it and my third was why me? (but then why not me). I dont seem to be able to shake off this awfull feeling of anxiety and fear. I havent found the breast cancer nurse very supportive. When I have rang to speak to her its always an answer machine. My oh has suggested I ring McMillan and see if I could speak to someone there. I am very scared and frightened of having Tax but realise it is the fear of the unknown but it does sound worse than Fec. Really hope everyone is keeping ok (se allowing) soon be crimbo, cant believe its 3 weeks today.
Love to all
Karen xx
Yes, give Macmillan a call they are really nice and very helpful and reassuring. They are qualified and can answer loads of questions. You have got this far and can do it. It will be over soon and you will cope. It’s not fair, any of it!
Jen, the advice Helen has given you is great. I have used the Paxman thing and it has been great. You just have to not mess with your hair really! Am sure your daughter will be fine with you looking after her. My Mum and Dad have been amazing and am sure that is the reason i am managing to cope with all this!! Macmillan are also great with the relatives! Or i can put you in touch with my Mum who has been through 4 treatments with me.
Lots of love to Kath and everyone!
Hope Loocie is doing ok, anyone know anything?
Jen1 - really sorry to hear about your daughter. I think Helen and Trumpet have covered the cold cap. Unfortunately I cannot help there as I didn’t try it. She sounds as she is doing ok re the side effects, a little nausea, and headache is not too bad. We all are given a cocktail of three sorts of drugs for nausea, Ondansetron, Dexamethasone and one other like Domperidone or similar. That helps but the Ondansetron is very constipating. Just advise her to keep her mouth/tongue as clean as poss - difflam mouthwash (and gargled) used 2-3 hourly helps but the furry tongue will possibly come. But please come back to us all re any other info you might need as most of us on here have had or having FEC and know what to expect. The worst of the side effects have gone by a week (I had 11 days of nausea which is normal for some and more than most, sounds as though she will fare better than that which is good).
Kath - I am so sorry to hear how down you are… It is really difficult when you lose your hair. I couldn’t look at myself in the mirror for 2 days, I just felt ugly. But you do get used to it and although I don’t like it I am fine with it. I wear woolly beanie hats most of the time which are really cosy and no-one seems to notice at all. They also keep your head nice and warm as it can get pretty cold unless you are like poor Helen who is boiling most of the time!!
Hi Ladies,
Lynn, a belated Happy Birthday to you, glad you were able to sort of celebrate!!
Loocie, hope you are feeling better and back on here soon.
Karen, we all have the same feelings as you so you are not alone. You know you can always come here and talk about it.
Jen, so sorry to hear about your daughter, I think the girls have already given you excellent advice and do let us know he she is getting on.
Trumpet, you look great, I didn’t try the cold cap, wimped out on that and losing my hair was a huge issue for me. However, I love wigs and not having bad hair days, everyone tells me I look 10 years younger so I am quite happy but will not ‘go bald’ even around the house!!
I am also starting Tax next week so a little worried but my Onc told me nausea is very rare, I’ve got steroids, sleeping tablets and something for my stomach while taking the steroids and apparently will be given antibiotics for mid session to take against infections. No pain killers though!!
I’m hoping I will be as lucky with Tax as with FEC as I know I didn’t suffer as much as some of you ladies.
Hope everyone is able to have a reasonable weekend, hoping to get my Crimbo decs up, or at least some of them. Cooked my turkey yesterday, carved and in freezer so i know we will have something festive to eat even if its cold in a sandwich!!!
Love to you all,
Jane xx
Hello there, this is my first post on this forum. I started my chemo today (6 x FEC), and I’m trying the cold cap (Paxman type). The thing is I’m really having trouble finding a Ph balanced shampoo and conditioner, which the nursing staff have recommended I use (they were unable to recommend a brand). Can anyone help me please - I really want to try and keep my hair as I’ve had it long most of my life and now it’s only an inch off my waist and the only nice feature I have left. I’ve been searching the internet all night to try and find the right hair products but no success so far. They put conditioner in it today to help to spread the cold evenly throughout the hair and I’m not supposed to wash it for at least 24 hours so it’s dried in there at the moment and looks pretty frightful but I’m keen to follow their advice. I’m sorry if I’ve posted in the wrong place but I hope that someone will be able to offer some advice please.
Well, I had my 1st Tax at 10am on Thursday & am still nervously waiting on the SE’s to hit!! I was told my my lovely & very honest chemo nurse to expect them to kick in around Sunday evening…pain first then by Tuesday or Wednesday possibly dodgey bowels…nice!! LOL
I seem to be taking a huge amount of drugs this time round…everyone the same?
On weds I took 2 lots of 4 Dexamethasone
Thurs (chemo day)& Friday - AM- 4 Dexamethasone
2 Omeprazole (indigestion)
1 Granisteron
1 Prochlorperazine (1 at lunch & Tea too)
PM- 4 Dexamethasone
1 Granisteron
1 Gabapentin (pain killers…2 on Friday)
1 Dulcolax
I take the Granisetron for a further day & the Gabapentin twice daily for 10 days. I use the Omeprazole & Prochloperazine & dulcolax whenever I need them…but doesn’t it look like a mad amount written down!!?
I’m hoping I’m not the only one rattling around!! LOL
Hope everyone is well & that Loocie is well on the way to recovery!
Good Luck to all you lovely ladies having Chemo this week!
Hope the side effects are not to bad when they do kick in. I am due my first Tax this coming Thursday so not looking forward to that! Keep me posted on how you are doing. Take care
Karen xx
Have just read a post by Jane and she says she was given antibiotics to help prevent infection whilst having Tax. Have you been given these and if so do you know if it is standard for everyone to have them. I am seeing my consultant on Monday who is not the most helpful of people. I had really bad thrush this time around in my mouth and elswhere, told the consultant and asked him if I could have medication to prevent me having it again. His reply was,
are you sure you have thrush, see how it goes! as I said not the most helpful. If antibiotics are given out as the norm I want to be prepared when I go on Monday to get the medication I need to help with the SE, including thrush medication this time!
Take care
Love Karen xx
I haven’t been given any antibiotics from the hospital. I have been told that your temperature is more likely to go up with tax tho, but just to keep an eye on it as usual. I’ve had 2 lots of sinusitus during my FEC & just headed to the GP if my temp started to reach the 37.5 mark. I plan to do the same with TAX.
I haven’t changed anything in my lifestyle & haven’t avoided crowds or anything & have been fine…fingers crossed this won’t change!
The one thing that I did ask my onc for was the painkillers up front, rather than waiting to see how I get on with this first cycle. My 9 year old is doing a display at half time next week at Ibrox (he’s a huge Rangers fan!) & it’s something I don’t want to miss because I’m in pain. She was fab & didn’t hesitate to prescribe them for me. Hopefully they’ll do the trick…I’ll let you know later in the week.
I seem to be lucky with my onc unit. It’s nurse led & they make most of the decisions & can prescribe most of the stuff you’ll ever need. They even question the onc if they don’t agree with what they’ve given you…thankfully…cause some of the stuff the onc wanted me to take would have had me constipated for the rest of my life! LOL
Your onc sounds like a bit of a nightmare! Maybe the fact that my 2 onc’s & all the nurses are female helps…they know about thrush! :o) …men are rubbish! LOL
Good Luck with your appointment. I’ll post later in the week (if I can!) to let you know what my experience is of the dreaded Taxotere!
Hi everyone,thanks for your help. Trumpet1 appreciate your good wishes.
Hows Loocie?
Hayz hope your SE’s are not too bad on Sunday or at all come to that.
Karen good luck for Thursday.
Lynn thanks for your note, as you can probably gather I’m coming round about my hair, I’ve always had long hair but cut it off last night and gave it a no3 cut before my shower I don’t know whether to laugh or cry at myself, I’m sitting here with my beanie hat on writing this, I think I’ll laugh LOL.
Next chemo on Wed help.
Thanks for listening keep your chins up and look after yourselves,
good luck
love Kath
I’m writing this not my beanie hat LOL
evening everyone - Loocie sorry to hear you are so poorly, when I first started reading this site your posts always made me smile and were full of good advice. Hope you get well soon and are back to your old self.
Trumpet - your photo was fab and very encouraging re. cold cap.
Kath -sorry to hear about your hair. I have very thick,short hair and it is moulting faster than normal and I have that “ponytail” ache at the roots but will use the cold cap again on Wednesday. Not been too bad apart from stomach upsets and return of diverticulitus due to the constipation (which has required antibiotics)- will my digstion ever be the same and this was only round one! Hope you are well and will be thinking of you on Wedneday.
Thanks to everyone for the advice re infections. As this was my first chemo. I was getting a little paranoid but feel better now.
Love to eveyone. Marli.
Good to hear from you Hazel - have been wondering how you have been getting on… OMG you sound as if you are rattling with all those drugs. I take the same steroids (dexamethasone as you and at the same time), but haven’t had to take any anti-sickness stuff at all. I took a couple of senokot for constipation and a Lansoprazole for indigestion…Oh and the painkillers, which were 1 co-codamol and 1 Ibuprofen. Have never heard of the ones you’ve been given so might look those up. Glad you are ok, so far so good. Let us know how you get on. I wasn’t given antiobiotics as a precaution - I think they just wait to see if your temp does go up. My temp was up and down for around a week but never more than 37.5.
Good luck to everyone next week, Jane, Karen, and Marli and anyone else I have missed out. I’m having my second Tax next Tuesday… mmmm not looking forward to it but hopefully might be well enough for christmas, that’s what I am focusing on. Going to my daughters piano concert tomorrow - paranoid about getting anything before next Tuesday… might just sit there with a balaclava on LOL!!
I have real problems with my mouth - furry tongue and gums, mouth ulcers, yellow coating, sore throat etc. and my oncologist has prescribed me thrush drugs even though it isn’t necessarily thrush. I take difflam mouthwash and nystatin mouth wash type stuff religiously after every meal and before going to bed and it is the only side effect that I have been able to reduce over all 4 cycles. My onc also prescribed me fluconazole tablets for thrush which I haven’t taken. Make sure you take them as a preventative before you get the symptoms rather than after and hopefully it will help.
If you do get ulcers then adcort gel is really good although a bit like eating wallpaper paste!
Hi, sorry to jump in, but just to say, i rinse my mouth with salt water and so far it seems to help with furry mouth, it was recommended by chemo nurse. Also ice lollies.
take care
anna
I am so, so, so pleased to be home and am sorry for frightening everyone with scare stories about how dreadful Tax is, when in fact it looks as though my PICC line was the culprit. Doh!
Thank you all for your well wishes and kind thoughts, you’re so lovely. I couldn’t get onto the Internet from the hospital (worst part of the whole thing), but I’ve just had a good read and caught up with your progress.
I’m off for a long overdue shower, but will come back tomorrow and make a proper post.
