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Ele J
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since
15-08-2015
175
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Hugs
23-05-2016
07:41
Hi Vicbee, so sorry you are having this extreme SE. It's really unfair that some people get it so bad isn't it. I did read something that one of the most effective treatments for menopausal hot flushes is exercise, so I have been running several times a week since starting Tamoxifen and my hot flushes have been relatively mild and not too frequent. Of course I have no idea whether I'm just lucky or whether it is the exercise, but worth a try if you're not already breaking a sweat with exercise 3/4 times a week? I know if you're not a natural gym bunny or runner it can seem like the final straw to have to drag yourself out to exercise on top of everything else, but worth it if it works! Good luck x
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11-04-2016
08:32
Hi Suzie Yes my oncologist discussed it with me and gave me some info. It's called Add-Aspirin and you can find info about it on this site http://www.addaspirintrial.org I was not eligible to join the trial in the end but my Onco was happy for me to take low-dose aspirin daily anyway (in addition to Tamoxifen). It looks pretty clear that it does have a preventive/slowing effect on some cancers, including BC, but the trial will prove that for sure and also confirm the lowest effective dose to get the benefit. Obviously there are some risks with aspirin too so best to talk to your doc if you're thinking of taking it. Apparently they've known about this positive side effect of aspirin for some time but had difficulty getting funding for the trial because there's no money in it for Big Pharma (no new drug to licence!). Thank goodness for the NHS and Cancer Research!
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07-04-2016
09:25
1 Hug
Good on you Bibi! It's so difficult when posting isn't it... I never want to diminish how rotten it is for people who have bad SEs, but at the same time really want to give hope to people who are worried. Good luck anyone who's about to start on Tam. I'm 3 months down, only 117 to go 😏
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06-04-2016
03:54
Good news Tat! I finished my rads early Feb and while everything else is getting back to normal, I'm still wearing my post-surgery bras as can't quite face an underwired one yet..perhaps I will give it a go!! X
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31-03-2016
08:31
1 Hug
Agree with all that Jo! Ali, I had my last chemo on 2 Dec and started Tam on 2 Jan, so my hair has been growing back while on Tam (I didn't cold cap so was completely bald). My hair now is still obviously v short but is definitely full thickness. I have been trying to eat super healthy too, with plenty of lean meat, fish, eggs etc as I know iron is important for thick hair. Who knows if that's helped but it's made me feel I'm doing everything I can. Try not to worry about the next stage, just focus on getting through your chemo (easy to say I know). In my experience chemo was the hardest bit so you're nearly over the worst. I found rads fine by comparison, and Tam equally ok. And if all else fails, don't forget Kylie did 5 years of Tam and she looks great, no?! Best of luck x
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30-03-2016
09:02
1 Hug
Hi Ruth So good to hear from you too! I have been keeping an eye on a few threads but commenting less. Glad you are at the end of active treatment and hope you are feeling well. Are you working? How's your hair coming along? I'm planning a little hat burning ceremony tomorrow to celebrate the return of mine! Yes, Tamoxofen has not been anything like as bad as I feared/had heard, which is not to diminish the experience of others who have had a bad time of course! I'm planning on doing the BM10k in a couple of weeks - Barry from the Oct thread signed up didn't he so I will look out for him. Let me know how you get on on the Tam - fingers crossed for you xxx
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30-03-2016
04:44
1 Hug
Hi Ali, I've been taking it for 3 months now and in that time have got back to running about 3 times a week - planning a 10k in a couple of weeks - and have managed to lose about 10 pounds (most of which I put on during chemo!). My hair seems to be growing back ok too - that was my biggest fear re Tamoxifen, that my hair would be thin or not how, but so far so good! You'll get your old life back, never fear, and some things will actually be better because you appreciate them more. Best of luck x
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01-03-2016
09:56
Hi Bondgirl, when I was prescribed Tam my oncologist said not to worry about side effects in the first 3 months as it can take that long for your body to adjust to taking it. So if you can grit your teeth and give yourself 3 months, you may find things settle down and you can continue. Giving yourself a 3 month period might also help psychologically, rather than thinking about the 5 or 10 years stretching out endlessly in front of you! I started taking it 4 Jan so have done 2 months now and I feel that my side effects like hot flushes and insomnia have started to settle down in the last couple of weeks. I hope that helps but best of luck whatever you decide! X
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12-02-2016
04:33
Just to add, my oncologist said it may take time for your body to adjust to the Tamoxifen so side effects in the first 3 months may be transitional/temporary. x
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10-02-2016
11:23
Hi Bibi, I started Tam at the beginning of Jan and started a diet around the same time to try to shift the 8-10 pounds I put on after diagnosis (lots of cake) and during chemo (monster carb cravings from steroids!). I've lost 5 pounds in those 5 weeks...sticking to around 1200 calories a day, lots of fruit, veg, salads and protein (in my case chicken, beef, fish). No pasta, potatoes, and v little bread (ok, apart from a monster gastropub burger and chips at the weekend 😳) I'm trying to make sure I get enough nutrients and iron as I've also read about hair thinning as a Tam SE, so eggs, fish etc. My hair is growing back quite well so far, touch wood - 9 weeks post-chemo have a full covering of v short growth. And ditto pubes...hurrah! Never been so pleased to see them 😉 So as with all SEs, I don't think the weight gain or difficulty losing it, or hair thinning are universal. I have huge sympathy for everyone who experiences them, as I know it's miserable on top of everything else we've been through, but just wanted to give hope to others that you may not be affected. Of course putting on weight is always easy (for most of us) and losing it hard, but for me that's the same pre and post-Tam. Anyway, hope that gives you hope! X
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05-02-2016
07:32
1 Hug
Hi all, don't know whether you guys are still around or have moved on, but just thought I would post to say I finished my rads today so I think I am officially finished treatment!! Thanks to all you lovelies for your support and I hope you're all doing ok. I feel fab and am planning to do my first parkrun since Sept to celebrate! Over and out x
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05-02-2016
07:59
Hi Sarah, I think we all empathise with how you're feeling as we've all been in exactly that place, regardless of the specifics of diagnosis. Whatever the news and next step, you will start to feel better as you move forward, I pronise. On a practical level what I would say is 2 of 3 isn't 3 of 3, and 'traces of cancer cells' means that the lymph nodes have done their job in catching the cancer and stopping it getting further into your system. Loads of people on here have had node clearance after results like yours and found all the remaining nodes are clear. Big hug and let us know how you get on. X
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05-02-2016
07:47
Hi Nicki, sorry to hear that. I read that SEs peak around two weeks after treatment ends so this time next week you should have turned the corner and be in the downward slope. Are you working? Maybe easing up a bit in that for a couple more weeks will just give you the time to rest and recover? My last one today, so seeing your post is a useful reminder to keep moisturising and take it easy even after this momentous day. I was thinking about doing the parkrun on Sat but maybe I will have a little lie-in instead! Hope you feel better soon x
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01-02-2016
03:05
Only 4 left now...as long as no more cancelled! Sorry to hear you are sore Kaz, hope it improves. I've managed to avoid soreness so far...lots of E45 but also gone without a bra most days to avoid friction. Glad you finishers are enjoying your freedom...can't wait to join you! Hope everyone else is good x
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28-01-2016
08:49
Congrats girls! Hope it feels as good as you anticipated! My 15th session of 20 today has been cancelled as one of the machines is broken down 🙁 Means I will finish at least a day later than planned but no biggie in the scheme of things. Skin still ok and no tiredness to speak of. Trying to persuade myself to go out for a run with my bonus free time... Hope everyone else is doing ok x
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26-01-2016
02:25
I think you need to get your chemo finished first Ruth, though not long to go...this time next month you will be not only finished but hopefully out the other side of your side effects too! Plenty of time for 10ks then 😉
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25-01-2016
10:22
That's a shame re timing...mine are all before 9 so although it was a shock to the system having to get up and across town so early, they've mostly been bang on time and I've been able to park in the roads opposite free/unrestricted because I'm gone by 9! The team are absolutely lovely at the Sussex though aren't they? I had no idea you could get Aloe Vera gel directly from the plant! Hope the rest of yours go well x
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