Hi Littlemissacti Sorry for the delay in replying. That's frustrating when you do that! Sorry you have a sore nose. My nose is constantly runny - have to have a tissue up my sleeve all the time. It drips without warning! Really hope that stops now that I've finished herceptin, though the Dr told me that it takes a few months to work its way out. I'm just on tamoxifen now, and ongoing monitoring for lymphoedema which I was a bit cross about if I'm honest! Anyway, it's much better, better than the lymphoedema nurse could have hoped for so I'm really pleased. Have to not get complacent though and must continue to do drainage and exercises. Having got it under control I don't want to take a backward step. I'm almost enjoying my jogging - to call it running is exaggerating it slightly! I've completed week 1 of the NHS training podcast I downloaded, start week 2 tomorrow - eek! Thank you for your best wishes, my best wishes to you too. X
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Well done on the marathon! I'm doing the Race for Life in July and want to run it but haven't exercised for ages and did my first training session yesterday - the thought of running 26 miles is something I couldn't even contemplate! Anyway, I've just had my last herceptin by injection (think I had 7 injections) and I haven't noticed any different side effects but I had a herceptin review and the doctor asked if I'd noticed any different SE's as quite a few people do, so it's obviously quite common. I too have flaky nails and they split vertically and horizontally. I've just started using Body Shop Almond Oil Hand and Nail Cream and they do a cuticle oil stick which I'm also using - seems to be helping. Hope you're feeling more energised soon. X
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Hi everyone, I was in last year's March group and this time last year my hair had just started to fall out (my attempt at using the cold cap not being very successful). Now I have to use a hair dryer and 2 weeks ago I had it coloured - came back very grey! Anyway, I just wanted to say that at the moment this probably seems a lifetime away to you but time will pass very quickly and this time next year that will be you :). I'm already having bad hair days despite vowing never to complain about my hair again! I haven't read all your posts but just scrolled down a few. I had FEC-T and had palpitations after FEC, not so much when I changed to Tax, but it is quite alarming! Eitaki, I also had a suspected infection in my boob and was on antibiotics when I started chemo, then was prescribed a follow-on course of stronger ones by a doctor at the hospital about 5 days after my first dose, so mine wasn't delayed. I hope yours isn't, you just want to get that first one out of the way. When shopping for wigs, when you still have quite a bit of hair, your head will be much smaller than you think without hair! My wig was way too big once I'd had my remaining hair buzzed off! Good luck to you all. xx
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Hello Ladies I'm just popping in from last year's March group to wish you all the best for this phase of your treatment. The end of chemo probably seems ages away, but as others have said, it does go quickly! This time last year I was just as anxious as you must all be feeling, wondering how I was going to cope. We're all different and some people cope better than others. Just make sure you ask for help with side effects, don't suffer in silence! And make sure you take the anti sickness meds, even if you don't feel sick and ask for Emend next time if it's really bad. I've read that some of you are going to try the cold cap. I tried but I now know it was too loose and the damage was done at my first session. I tried again on the second session and it fitted properly but was too late! It must be really tight - it's excruciating when they turn it on but after about 10-15 minutes you're so numb you can't feel it! They will spray your hair with conditioner beforehand as it helps with the freezing process. Wear warm clothes and/or ask for a blanket and hot drink. Don't take the cap off as soon as they switch it off - or you will lose half your hair in the cap! Wait for your head to warm up and the ice to melt! Also, take a hat with you for afterwards - you won't look your best! Your hair may be wet and you'll feel cold when you go outside. I didn't wash my hair until the Monday (chemo was Friday) and let it dry naturally, no straighteners so I looked a sight! I'm afraid I can't give advice for ongoing use but I've read on here that some people have had success with it and it's definitely worth a try. And if all else fails, embrace those scarves - perfect excuse for a bit of retail therapy! Plan a treat for yourself after each session - you deserve it! I bought myself a new Trollbead for my bracelet and a friend of mine bought herself a pair of earrings each time. Definitely recommend the Look Good Feel Better workshop - you get a nice goody bag! I did mine after chemo and rads. It's nice to have something to look forward to, but they do get booked up. Anyway, good luck to all of you. Carol xxx
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Hi Rollercoaster I just saw your post and thought I would reply in case Pammy doesn't check back for a while. I had my 13th herceptin last week and just prior to that I had an echocardiogram and bloods. These were also done before my 5th and 9th (or 10th - can't remember!) and will be done again after the 17th, and so before the final dose. I had to see a Nurse before the 5th, a Doctor before the 9th (or 10th) and saw a Nurse last week before my 13th. I will see a Doctor just before my 18th dose. I haven't seen my onc since I was part way through rads! My understanding is that you have an echo (I think some people have MUGA scans, but I'm not sure how they differ from echocardiograms) to check that the herceptin is not affecting your heart - it can cause leaky valves I think. The blood tests I've had done are liver function, urea and electrolytes, full blood count and bone profile. I don't think the blood tests are to check if it's working, I think they're to check your general health because herceptin can also cause kidney and liver problems. I know what Pammy means about being anxious about the blood tests - I do too, just in case they show up something unexpected! Cancer Research UK has information about herceptin here: http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/trastuzumab I've just started having it by injection, rather than IV which suits me much better as I have rubbish veins! Hope his helps and good luck with the rest of your treatment. While I'm here, how are my fellow Marchies? Really pleased to see all the clear results for everyone 🙂 Hope you're all managing to keep dry - will it ever stop raining?! I saw my surgeon a couple of weeks ago and mentioned that I'm still tender around my ribs on my affected side and he said it's rads, even though rads finished last August! He said it can carry on for yonks! Oh joy!! Hope you're all managing to keep dry - will it ever stop raining?! Really looking forward to meeting up with some of you next week! Bye for now Carol xx
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Hello everyone! Hope you're all well and hope you enjoyed welcome some sunshine yesterday. Very frosty this morning though - brrr! Daffodil, I haven't felt queasy as such but I've been having the odd dizzy spell, horrible! It normally happens in the afternoon and for a couple of days on the trot, then nothing for a week or two. I mentioned it at my last herceptin as I was quite worried about it and they checked my blood pressure, asked me questions about headaches, blurred vision (no to both). The Dr thinks it probably is tamoxifen but said if it continues, to go to GP and get my blood pressure monitored for 24 hours. Haven't been sleeping very well (what's new?!) and worrying about what might be going on in my head so I've started walking every day - 1 mile on work days and 2 miles on my day off and weekends and I have to say I'm sleeping and feeling better. Hope I'm not tempting fate! Hoping the exercise might help me shift some chemo/tamoxifen/Christmas weight! I had my mammogram on Friday, so I now await the results - could be up to 4 weeks! Fingers crossed for everyone expecting results. Looking forward to seeing some of you soon. Take care Carol xx
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Happy New Year everyone! Let's put 2013 behind us and I hope we can all look forward to an easier 2014. Thank you all for your support last year - we all got through it and have come out the other side. I'm also finding it hard to adjust, I think you'd be superhuman to come through something like this without any battle scars, but time is a great healer and I'm trying to be patient and not expect too much of myself. Wishing you and your families a happy and healthy 2014. Carol xxx
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Hello Marchies! Just popping in to wish you and your families a lovely Christmas and a very Happy New Year! Yes, life will never be quite the same but as Suzy said, we're all here and there were moments last year when I thought I wouldn't be. (Daffodil, I found my offending lump on 16/12 and diagnosis was confirmed on 8/1). I don't think I can put it better than Suzy, but to echo her sentiments, have a wonderful Christmas everyone and here's hoping for a better 2014! Lots of love and hugs Carol xxx
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Hi All, Hope this posts - we're in Crete, and wifi not very reliable! Daffodil, we'll probably pass you in the air as we come home tomorrow! The weather here is lovely at the moment, about 26 and sunny. I didn't pack my wig - decided its days are over! Consequently I have a pinky/brown head as I still have some scalp showing. Have a lovely time. We've done very little, apart from walking an 8km gorge - quite pleased I made it really! Karen, good luck with rads - will be over before you know it and you can get on with planning your birthday celebrations. I can while away the hours in Hobbycraft too! I used aloe Vera gel 99% and applied it twice a day. I think Nipinuk took it with her and applied it straight after - I did take it, but kept forgetting! Don't wait until your skin gets sore though, and hopefully it won't! Angela - you tell a brilliant story and made me chuckle! The driving rules also apply to the Greeks in our experience! Woolfie, enjoy singing at Wembley on Friday. Hoping wifi lasts long enough for me to post this! Will write more when I'm back - herceptin on Thursday so will have time to kill! Hope everyone is well. Bye for now Carol xx
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Hi All Just been catching up with all the posts - there's been a bit of a flurry of activity which is good to see 🙂 Jlr I'm glad you're going to be seen sooner, the waiting must be agony. Will be thinking of you on Monday. Xx Daffodil (Nora, Woolfie, Pammy and probably everyone to some degree) - I'm with you on the paranoid thing! As soon as I started taking tamoxifen I started getting tummy ache and abdominal discomfort which lasted about 4/5 weeks. I mentioned it at my herceptin review and the nurse looked it up in a book and it says tamoxifen can cause "gastro-intestinal disorders" - which would cover tummy ache. Had full bloods done, including liver function, and all fine - but, goodness my mind was working overtime! Anyway, everything settled down about 2 weeks ago - apart from the hot flushes! I recently met someone who'd been through it a couple of years ago through a car club we belong to and she knew exactly what I meant - I don't think until you've been through this, you really understand what it's like. Good on you doing the painting though - are you up ladders?! You asked about going to Crete in October - we haven't been quite this late before and I keep checking the forecast! It's certainly warmer than here but there is the occasional thunderstorm so we're going to pack for all eventualities! Karen, glad tattoos went OK! I drove myself to rads every day, about 40 minutes each way and I was fine, but as Daffodil says, your rads are almost on top of your surgery so it might be different for you. Nothing like a spot of retail therapy - beats radiotherapy any day! Christmas?! I'm not normally one to start thinking about it until about the middle of November at the earliest! I am hoping this year will be better than last year - I found my lump on 16th December and we decided not to tell anyone about it as there was no point in spoiling everyone's Christmas, especially as it could have been nothing - haha, if only! Christmas Day is 3 months today - yikes! Mungo's Mum - what are you knitting? We had our sitting room carpet cleaned yesterday and discovered a cardigan I started about 2 years ago lurking in a carrier bag behind the sofa! Maybe I'll finish it now - though it probably won't fit me now :(. Glad your hair is growing - the hair I have got is getting longer but I can still see scalp! Really pleased some of you met up yesterday - hopefully more of us will be able to make it next time! Suzy, I can't see your kitchen picture either! How did you get on with he plastic surgeon today? I don't see my surgeon until February. Woolfie, sorry to hear your holiday wasn't what you'd hoped for and even more sorry that you came home to uncertain news - fingers crossed for you. Pammy and Nipinuk - I share your challenges of eating healthily! Decided I'm not going to lose half a stone in the next week so will worry about it when we get back from holiday - then it will be a nice round stone! Angela - hope you've got clarification on the swimming and have been able to have a dip in the pool! Take care all, bye for now Carol xx
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Hi All, Just been catching up with what everyone's been up to and as Angela says, it sounds as though we're slowly but surely returning to normal, or the new normal. This time last year we were in Kefalonia and I had no idea our lives would have taken such a detour from normality! Hubby has retired now too, so that's an adjustment - not liking the fact that I now get up first and make him a cup of tea rather than the other way round. I bought him a Haynes manual on cooking for his birthday but I can see I'm going to have to take a less subtle approach ;). Glad you've settled well in Spain Angela, although you sound very busy! I hope Autumn takes its time getting to Mijas. It's certainly very autumnal here.... and, yes, we've had the heating on but haven't stocked up on logs yet for the fire. I think in the info I was given, it just said don't swim in chlorinated water until any skin irritation has cleared up, which is what Nipinuk has said. They told me to keep that area out of the sun completely for a year otherwise it would cause permanent pigmentation damage - not that I have any intention of going topless but my skin was marked quite high up my chest, almost to my collar bone, so high necked T-shirts for me until next August! Hope those of you still going through rads aren't finding it too bad and that your skin's holding up OK and Karen, I hope planning went OK for you on Friday and that you were comfortable enough by then to be able to lie down on the rads table. Good for you Nipinuk with your apples - you'll have to go on Freecycle for jars now! Christine - any luck with the quinces? Woolfie, pleased to read that all looks normal for your OH, hope the CT confirms that in a couple of months. On the hair front, I've been going without my wig for about 2 weeks now - given a few clients and reps a bit of a shock as I went from having a very full head of blonde "hair" one week to grey fluff the next : D!! It is growing, but not quickly enough for my liking :(. I'm also suffering with chilly ears! I do have eyelashes now and my brows are filling in slowly. I haven't noticed an increase in facial hair yet, but like others am suffering with hot flushes and insomnia. Still holding on to my nails, though a couple of them feel a bit loose - I'm sure they wouldn't be so good if it wasn't for the Evonail though, so thanks for that tip Suzy. We're going to Crete on 1st October for 2 weeks so I'm not thinking about Christmas yet, though I see all the supermarkets have the tins of sweets in already! It's bad enough to think that the clocks change less than 2 weeks after we get back! Take care all, bye for now. Carol xx
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Hello everybody! Hope you're all well and enjoying the Bank Holiday weekend. Like others I'm struggling to get to grips with this new forum but I'm sure I will eventually! Mungo's Mum, I agree, it's frustrating not being able to look back! It will make for shorter posts from me as I can only remember the last one or two posts! I finished rads a week ago and my skin's not too bad at all - just a bit pink and itchy so keeping going with the aloe Vera gel. The girls at work bought chocolate cake and champagne to celebrate the end of treatment, which was lovely of them and they've been so supportive. I'm on tamoxifen and hoping the hot flushes calm down a bit soon - quite glad I still don't have much hair! Struggling to get to grips with the ' new normal ' a bit. Every ache and pain I get sends me into panic mode. One of my sisters said it will be nice to get back to normal but I'm not sure life will ever be quite the same again. I have another heart scan on Weds and blood tests because of herceptin - fingers crossed they're all normal! Jlr, good for you with your positive attitude. I hope the next 3 months goes quickly for you. Woolfie, I hope your OH's results are good - and enjoy The Scilly Isles. Karen, hope you're still recovering well! Apologies if I've missed anything and good luck to those of you who've yet to start rads! Enjoy the rest of the Bank Holiday weekend. Carol x
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I also used acetone free bail polish remover. I'm 5 weeks post chemo now and my finger nails are still intact so far (though from salsal50's comments above I might not be out of the woods yet!). I don't have any ridges, they're just a bit discoloured but you can see the new pink growth. I'm still using it, and will finish the bottle and hope for the best after that! I didn't use it on my toenails and I think I'm going to lose both my big toe nails - they've gone white and feel a bit loose!
Good luck with your treatment and may your side effects be minimal!
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It's so long since I've been on here I think I'll have to go back and make notes so that I can reply to everybody! I will go through and read everything (4weeks' worth!) but just want to say I hope all is going well for you today Karen and that I'm thinking of you.
Started rads on Monday - no side effects yet but applying Aloe Vera gel liberally! Also started tamoxifen (Wockhardt if anyone is interested). Apart from hot flushes, which I was having anyway, no side effects but I don't know how soon they would start.
Are we all at the summit now? I've lost track a bit! I know some may still have surgery but look how far we've come - I see there's a thread now for those starting chemo in August. This horrible disease claims new people every day 😞
Will hopefully pop back later.
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FEC-T, Cycle 6, Day 1 (2nd Herceptin)
In the chair for my last dose - hooray! Just looked back and have more to catch up than I thought - still, I have time on my hands so here goes ......
Suzy - glad you've been able to enjoy some painting and how lovely that you'll be able to put it to use as a focal point in your new kitchen!
Angela - hope your SEs are not too bad after your final session. Fanny's Farm does sound good - it would be great if we could arrange to get together when we're all back to 'normal'. How's your trampolining going? How awful for your son - and horrid for you too.
Karen - well done on reaching the summit! I hope your SEs are minimal. Lovely that you've been able to use your camper van so much, quite cosy I should think if iffy weather!
Honeymonster - another one at the summit! One by one we're getting there!
Nora - Sorry to hear you had a spell in hospital. I hope by now you're feeling better and that your energy levels are increasing.
Christine - I also have about 3 long eyelashes on my left eye. A few short stubby ones on both eyes so not deserted me completely and I'm keeping going with Mavala and still wearing mascara! My nails are a bit sore if i knock them, which i seem to do with amazing regularity! Hope your garden is progressing - have you ordered all your plants?
Daffodil - how confusing to get mixed messages. I hope you get a difinitive answer soon. As you say, it's a roller coaster.
Nipinuk - thanks for the comprehensive list of side effects for rads. Last week for you? Well done on your exercises! I'm going to try and get back to walking in a couple of weeks. How's your Dad?
Jlr - congratulations on reaching the summit! And great to hear such positive news from your onc.
PammyX - have you had your meeting with your onc yet? Hope your blisters are improving - or have gone hopefully!
Woolfie - glad your OH has finally finished his rads. When will he find out if it's been successful? Made me laugh about your mum using a biro on her eyebrows! Hope your SEs are minimal. I had achey teeth with my first tax.
Jude - well done on reaching the summit! Hope the fatigue not too bad.
Jess - well done on reaching the summit! Like you, the final chemo seemed so far away, and here we are at the end! My rads planning session is next Monday so this time next week I will be sporting 3 tattoos too!
Shelley - sorry you had a rough time - surgery a week today. Hope all goes well, will be thinking of you.
MrsB - sorry you've been feeling so emotional and that you were treated that way by the radiotherapy consultany, and that you had to have your final session delayed. Hope all goes well for you today and that your SEs are minimal.
Well, it's taken me ages to do this post! I hope I haven't missed anything, apologies if I have. On herceptin now so in about an hour I will be out of here :). Had to get here for 9 and it was gone 10.30 before my drugs came up!
Have a good week all!
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Just a very quick message as I haven't read every post.
Daffodil, brilliant news for you! Good luck everyone reaching the summit today - may those flags wave proudly in the breeze! Hope everyone who's got there this week is not suffering too much. Will be back later for a proper catch up. Have a good day everyone. Carol xx
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I just want to echo what Mejane said about correct fitting cap - the first time I used it i now know it was way too big. When I used it the 2nd time it was much tighter - and excruciating when it was switched on! However, the damage had already been done at the first session and I lost my hair so it really is important to make sure it fits.
The conditioner they used on my hair was a spray - very light as you don't want anything too heavy, so by the time I went to bed it was dry (I also slept on a silk pillowcase - we deserve a bit of luxury going through this!)
Also, leave the cap on for 10 minutes so that your hair defrosts - I took it off straight away the first time and and had ice in my hair, and ripped out a few strands!
Good luck with your treatment - and the cold cap - I hope it works for you.
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