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Xena75
Member
since
24-06-2017
205
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03-12-2017
12:01
Happy birthday four tomorrow Sib! I do hope you have a lovely time. Try not to dwell on these worrying thoughts, I'm really sure its hit because of the change in your regimen, I really struggled with it mentally when it happened to me and I'm four cycles on from changing mine and I'm much better and more positive but still do think about the what ifs. However, as I was told by my sister (bit of a science geek) what you were given first was best at that point but not best for you now. The important thing is you are still being treated and you've had a good team looking into it for you and they will have chosen the best option for you now. Try and focus on the positive as the only thing we can control is our mindset. Feel free to pm me if you want too chat about carbo and regimen change at any point 😊
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02-12-2017
02:05
Just had a catch up on everyone,I've not been on for a while. Congratulations to those who have had their last dose! Hopefully SE will be mild and all very uneventful! Sorry to hear some of you have had horrid and unexpected side effects, hopefully they will quickly pass or your teams can sort something for you. Sib, I reacted to doce too, red face and breathing issue,again managed very quickly but still a bit shocking. I've had a chemo regimen change also by having the dice removed from plan. This made me quite emotional,as some have said,I worried about not having options for now or the future- though fingers crossed I won't need them in the future. I pleased to have had my LAST CHEMO today! I don't consider I'm done until the three week cycle is over, but then bring on the soft cheese,salmon and all the lovely things I've not been allowed during treatment for Xmas! Rads will start 27/28 DEC for four weeks, sonlers see what this brings. Hope those still having treatment have an easier ride uobto the end x
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02-12-2017
01:20
I should also say the list of my SE is all either very short (a matter of 3days say) or mild and very doable. I've just had my sixth chemo today and feel in would have had a much harder run ofnit on doce! The other thing is my hair is growing back! Legs,head,hoohaa! Eyebrows and eyelashes, which were basically hanging in there in a suspended animation fashion, fell out as new hair grew and pushed them out,so as they finished going they were already on the way back in! This happened at cycle 5, I now own full eyebrows again and a full set of stubby lashes!!!
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02-12-2017
01:12
Hi Sib. I have this exactly! Started on docetaxal and carboplatin combined, but had a reaction to docetaxal when administered on first treatment. I then suffered what i though was bad heart burn on day four. Second cycle no reaction but milder heartburn on day three. Turned out the heartburn was actually my heart disagreeing with the docetaxal. So they took me off it and I had the remaining four cycles as just carboplatin. For me the side effects on carboplatin alone have been easier than with the doce. No chemical hangover No dry mouth Food a bit more tasty, though still needing flavour to "cut through" a bit. The aide effects worth noting for me are gagging, slight nausia (never been sick though), significant skin aches around days 456, sensitive sense of smell (like in pregnancy), tension headache, tiredness and muscle fatigue. Please ask if you want to know any more, its a bit scary when your regimen changes and I've also found it hard to find people who have had this happen. There isbone other lady on here that had a really bad reaction to doce also but they put her on a different chemo instead.
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18-11-2017
12:56
Thank you both. They have given me a sheet with iron rich foods in, butvti bve hoinest I'm struggling a bit with foods I fancy eating anyway, without trying to force something I don't want down! Perhaps I shall see if I can take iron tablets as you suggest. I'm still feeling fine too thankfully,no dizzy breathless spells.
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12-11-2017
10:00
Hi, yesterday I had my 5/6 chemo. The day before on my telephone clinic call, they informed me im borderline for a blood transfusion. Cut off being 9 and I'm apparently 9.1. I decided to not have it for now as I font have any extreme symptoms, dizziness, exhaustion or breathlessness. However I have had a dull headache for the last couple of days, which I had put down to wig wearing as I'd had it on for longer days than abnormal, or needing to drink more or even sleep more. Anyone had a transfusion or been given the option and can saybif they had dull head aches? Of the symptoms they listed I get breathless if I do too much too quickly,but I've been like that since starting chemo, and I do feel done in by tea time, but again that's an ongoing thing too, perhaps more so this week than is normal for third week before chemo? O viously if I need it I will have it,but figured ifni could get by without that would be better??
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12-11-2017
09:02
1 Hug
Morning all and happy Sunday! Trying to do my weekly read through and catch up, brains not quite playing ball though! 😂 I had my 5/6 chemos on Friday, I'm trying the indigestion and anti sickness tablets this cycle as so far, I've not had much more than achy skin,tiredness and gaginess to deal with but some nausia crept in last cycle, so hoping the tablets may help. Still feeling positive 95% of the time, but feel my relatively easy chemo ride has come at a price. my brain just keeps worrying about my chemo regimen change at cycle 3. (Docetaxal increased heart toxicity so im just on carboplatin alone now) With only one left to go I suppose they're is little point talking to onc again, he has already told me there is literally no other chemo drug I could have. So I'm concerned about recurrence due to less effective chemo, less chemo drugs available to me in the future and sort of feeling like a sitting duck! 😬 Anyhoo, CK, glad to hear the charity money is still coming in. Great to make this as positive as we can! I have given the go ahead for my just giving fundraiser to be paid to BCC now. £1300 raised for donating my hair! My sister did the same and raised £1500 also for BCC! This charity has definitely helped me get through with a much better perspective, having this forum available for honest chat is amazing. All the info booklets given to me at hospital are BCC booklets. Ask a nurse section, helpline, brilliant resource! Not forgetting the brilliant CC's!!! Jencat and Rosie,glad your both feeling better too. I'm sorry I know I've missed lots of people,but I feel I need two computer screens to remember who has written what?!!
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12-11-2017
08:06
The area I'm in (norwich) ,they have a company come to the Big C centre and you can only use your voucher with them. They could get me a real wig but hadn't brought any the day I went for my fitting... She was rubbish frankly, 30 min appointment and didn't even get a wig on my head!!! She did say any wigs over the £80 you could have and pay the additional amount, so hopefully you would be able to aswell! I bought one privately instead. I had a much better experience but did have to play for it all myself, no voucher allowance for me! Quite tempted to go back and get a synthetic one as I am entitled to it!
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12-11-2017
07:52
Oh that sounds proper rubbish peanut, sorry to hear this. Hopefully these ones will work for you and get you home and comfy again.
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09-11-2017
10:30
Ah Ck, sorry to hear you have had this upsetting news. I really do agree that at this time you need to concentrate on yourself, be there as an ear and give a hug, but don't take too much on. I'm sure your friends daughters will look after her beautifully. As for the other woman and her idiotic comments, let them fly over your head, people are idiots but that's their problem, not yours. Just take a step back from her. Xx
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05-11-2017
10:04
How lovely having a holiday to look forward to! I'm feeling slightly hard done by with our booking for centre Parcs, I'd love some sun!!!!!! However CP is booked for our children as we had to cancel the one we had booked for xmas, and my 6yr old is so looking forward to it as she knows I will be "better" then and can enjoy swimming etc. The sun can wait!
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26-10-2017
09:01
Hi, there is an app called Think Dirty (think dirty - shop clean) which scores products for their ingredients. it used a traffic light system to identify the good and the bad. i believe it also has a scanner so you can scan before you buy and also check out the products you already have in your bathroom cupboard! Apparently it was set up originally by a lady who was diagnosed with breast cancer. Tropic is a good product range for very low scores on this app though I haven't used any yet.
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26-10-2017
08:51
Oh CK! I don't think I could have said it any better than you, I'm shocked at your friends though!!! (Esp the one going to the hairdresser for gossip!!!) I hope you have also have lovely friends that have stepped up to the mark and treated you like a queen too?! i think this journey really draws out the good and bad doesn't it, thankfully mine has in the main been good, aside from a couple of lurkers on my fb page who are just there for "news"!
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26-10-2017
08:32
Hi all, thanks for your recomendations. I have just been on the look good feel better course and it was good, helpful in knowing how to line your eyebrows up! Product wise I'm still not entirely sure, as everyone seemed to get different things in their bags, though I'm quite happy with the eyebrow pen I got I think. I like the sound of the benefit eyebrow setter mentioned below, and I guess it's just a case I feel make sure you take your eyebrow pencil out with you incase you accidentally rub the end off?! i guess the eyelashes are the next challenge, I'm not looking forward to that either, mine currently look longer than ever!
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22-10-2017
11:44
1 Hug
Hi, does anyone have a product recommendation for putting on your eyebrows once your hairs have started to go/gone? I currently use a powder but it does rub off over the course of the day and now my own brows are going, it seems to disappear even quicker. i tried wonderbrow, which was ok, ( bit tricky to get sharp at the tail of the brow, and I wasn't so keen on the colour, so ended up putting my powder over the top ) but I feel I need hair for this also as it's a pigment along with a fibre...the fibre needs hair to stick to, no? i do have a look good feel better course next week, but just wondered what everyone else is using and liking please? Thank you x
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22-10-2017
09:54
Thanks for this mishy, I will ask but I’ve had two cycles as just carboplatin now, so I’m not sure if they would add another back in?!
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