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Gemzy1889
Member
since
10-03-2017
16
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14
Hugs
28-10-2020
05:53
1 Hug
It would be nice to stay in touch, but im really useless with this format of chat, i started up a support group last year if you would like to join search on facebook Stage 4 Deserves More Secondary Breast Cancer Support Group UK xx
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23-10-2020
07:56
3 Hugs
Sorry its taken me ages to reply, im not very good on this forum i find it quite confusing who is talking to who and about what lol Anyway... its 7 weeks since the SRS to my 3 brain lesions and i dont think i have any side effects apart from being extremely tired but its hard to know what causes which side effects when your on so many meds, post treatment, life, kids etc!! I have been off steroids for just over 5 weeks and the team think some side effects are withdrawals from them, no appetite, fatigue, low mood etc who knows. The symptoms i had that led to the brain scan have all gone...i hope thats a good sign, will be scanned beginning of December. Im a happy bunny this morning as my girls are off school, ive really struggled being left at home alone everyday which isnt like me i like my space to potter and clean and i run a non profit organisation and support group for Stage 4 that keeps me busy and gives me meaning but since having them all home for so long during lockdown i struggled to see them all go every morning. Anyway im rambling haha hope everyone is doing ok. Gemma xx
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06-10-2020
05:12
5 Hugs
Hi, Im Gemma, 37. I have been living with secondary breast cancer since 2017 (bone only, 2 lesions in my spine) i have been on herceptin, letrozole, denosumab and zoladex since, also had cyberknife to spine last year and have remained stable. 6 weeks ago, i knew something wasnt quite right i had a pressure feeling over my forehead, tingling over the bridge of my nose and i just felt a bit "off it" i spoke to my nurse and she got me in for a urgent brain MRI...where they told me there and then dont drive home you have 2 small tumours. 10 days later i had an appointment to see a consultant and the following week scans and the mask fitting. 4 weeks ago today i had 1 blast of SRS to each tumor which took about 40 minutes. I was on a high dose of steroids and then weaned off them over 10 days after the treatment. Since then ive just felt rough, absolutely tired out, no motivation, my swollen moon face from steroids is still with me weeks after finishing them im so achey. I was told last week i was having steroid withdrawals and could either go back on them and wean off again or see it through for a couple more weeks which im doing...prior to all this i lived a good life on treatment, i was busy and positive. Now im shattered and miserable and have absolutely no appetite which again is very unlike me. Sorry ive gone on!! Hope everyone is going on ok happy to chat xxx
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17-01-2019
04:52
Yes that’s the one! So it is the same never heard it referred to as that but definitely 👍🏻 Xx
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17-01-2019
04:35
Hi Vicky, I’ve not heard it called that it’s the COC protocol using repurposed drugs it a private clinic in London?
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17-01-2019
01:36
Hi, I started the protocol in August and had a break from it over Christmas started back on it in the new year, apart from waking up feeling sickly every morning I don't have a problem. Blood tests are fine xx
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24-10-2018
09:08
Hi Loupita I’ve been taking them nearly 3 weeks now and so far so good! Xx
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20-09-2018
04:26
Hi, I’m looking for anyone that has been on or is on the COC protocol at the care oncology clinic on Harley Street in London. I have an appointment there next week to get a prescription for the repurposed drugs and keen to hear from people who have experience wether it be positive or not xx
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30-04-2018
09:52
That's so encouraging x
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23-11-2017
07:51
Hi, is the group your referring to the one that Caroline admins? Just checking there isn't another one I could be part of xx
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20-11-2017
08:33
1 Hug
I'm coming from Chinley so about 40 minutes on train. X
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20-11-2017
06:21
1 Hug
Hi Beccy, you will be fine. I'm in a Facebook support group and a few ladies off there are coming, so I kind of know a few already. It's going to be so weird alone in a hotel room! X
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20-11-2017
06:18
1 Hug
You do whatever you feel like! I'm not planning on being too late as it will be a long couple of days and I want to get online when I get in bed it's Black Friday!! Christmas shoppers big time! Where are you coming from?? Xx
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20-11-2017
05:58
2 Hugs
Oh Rachel, how I can relate to your comments, a cocktail or 2 in peace before going up to a empty quiet room and watching whatever I want on the tv... I'm 34 with 2 girls 5 and 7 xx
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10-03-2017
09:25
Doesn't sound pitiful at all. I need to have a mx after my treatment and whilst I hate my left breast these days, I too know I'm going to feel this way. I actually bathe in a t'shirt these days as I already can't look at the offender. I'm a 38 GG so my boobs are a big part of my life! And I'm known for my low cut tops, well I was!! Obviously I'm not in your position yet so I can't advise you but all I will say is, that surgery was necessary to clear your body of cancer to save your life! And whilst the actual breast is gone it can be replaced in whichever way you choose if you choose to do so, this gives me comfort, I dread being where you are now but believe me I wish I was as I'm sat here with the thought that cancer will remain in my body for at least a further 6 months!! They've removed it! You are close to coming out the other end of this horrendously rubbish time! Good Luck xxx
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10-03-2017
09:17
Hi, I'm Gemma. I'm 34 and was diagnosed with Breast Cancer with lymph node involvement in February 2nd. My treatment plan is 6 cycles of chemotherapy EC, Docetaxyl and Herceptin followed by surgery. I had my first chemo Sat 25th Feb so I'm 14 days post now. I've had quite a lot of pain/discomfort in my offending left breast and up into my armpit. I wondered is this normal? Has anyone else experienced this? Other side effects remain minimal at the moment apart from extreme tiredness and aches. I felt my very swollen breast and large lump a coupe of days ago and was pleased to feel and see a positive difference but the blimming thing has returned to its usual large uncomfortable self today 😟 Any advice/ info would be appreciated I'm not as fortunate as others with supportive bcn's mine are non existent! The feeling in my breast is like a heavy feeling sometimes a bit fluttery I feel I need to carry my boob around lol xx
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