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beverleys
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since
01-05-2012
115
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12-03-2012
06:18
Hi Katy - my bloods came back negative for the RA factor (which is why my GP dismissed it in the first place) but they still think it is and apparently that is a better outcome than if I had the factor.
Alex - will be interested to see if the pain comes back when you restart the Tamoxifen.
People at work have commented that it might be the weather that affects me! Maybe it is the water though!!
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12-03-2012
01:32
Hello all
It's interesting how different people are given differnt diagnoses isn't it? I saw the rheumatology specialist nurse last week for more steroid injections and I asked her definitely if it was RA, she could only say 'if the doctor says it is, then it is' (the doctor said it was RA rather than a bad SE just from investigating my joints and symptoms) but went through my blood test results with me. I feel so much happier now I've had the jabs in my shoulder and my ankle and wish I'd had them earlier. I've been on max dose ibuprofen for nearly 8 months whilst waiting to be seen, and am so pleased to not have to take them at the moment. I have an appointment with my GP this friday to discuss taking the long-term medication - I just hope they're right and it's not a SE of tamoxifen that they're not acknowledging!
I am in Edinburgh and being treated at the Western General.
I watch this thread with interest to see what the difference is in treatments/diagnoses. Hope everyone finds pain relief soon!
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09-02-2012
01:25
Hi FeeC - I'm back from the hospital now and have just been diagnosed with rheumatoid arthritis, so it wasn't my hormones after all (although they could have contributed to the onset of it)- am feeling a bit sorry for myself now and need a big glass of wine to cheer me up. I would be interested to hear what your rheumatologist says too so we can compare notes. Hope you're feeling ok and not too puffy! Bev x
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05-02-2012
10:36
Hello - I've not posted on here for a while but I am also in a lot of pain from my joints - it's good to know I'm not alone too, but sorry others are going through it too.
I am 2 years into 5 on Tamoxifen and am six months off Zoladex (I only managed 10 out of 24 due to the horrid side effects) and I feel like a 90 year old - I'm 36. Pain started in my foot/ankle and now includes both ankles, hips, wrists, fingers and shoulder. I had bone scans, x-rays and blood tests last year and I'm seeing a rheumatologist later this week. I have been given different brands of Tamoxifen and haven't noticed a difference in symptoms. My GP thinks it's still my hormones settling down and joints are still lacking oestrogen - I just want to know how long this will last as it's really getting me down. I'm not able to walk very far and am longing to go to the gym again. I'll let you know what the rheumatologist says....x
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19-01-2011
10:40
Hi - I was diagnosed with metaplastic BC in May 2009, had 4 FEC, lumpectomy, 2 more FEC, then 25 rads and am now on Tamoxifen and Zoladex for the next few years. I found Bena's blog whilst doing a search for Metaplastic BC and am also in the facebook group. It's nice to know that I'm not alone anymore. I didn't really digest the metaplastic bit until after I'd finished my active treatment December 2009 - my oncologist decided my treatment based on its other characteristics (grade, size, hormone levels), which touch wood, so far seem to have been succesful.
Big cyber hugs to those going through treatment and best wishes to everyone.
Bev x
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13-05-2010
07:00
Thanks for your comments, I am so pleased to have hair again - it took a while to come back through after chemo so should really make the most of it now! Bev x
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12-05-2010
10:03
I was wondering if anyone else's hair has grown back incredibly curly? I was prepared for this but it seems to have got thicker too and I look like a 1980s footballer! I'm curious how long the curls will last before my previous straighter hair returns (if at all!) - I'm not sure whether to get it cut very short again or wait until it gets through this 'difficult' stage! I'm not complaining really as I lived without hair for many months, but just wondering how it will grow out. Thanks 🐵
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04-05-2010
12:31
I've got everything crossed for everyone and hope you all get good news - keep us posted and big hugs to all
xxx
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22-04-2010
06:47
Hi Bigbear
I'm so pleased to hear it's not just me! I was also diagnosed with Metaplastic BC aged 33 in May last year. I have found one other lady with it so far, she's of a similar age and in germany at the chemo stage of her treatment.
My medical team didn't really explain what this type involves, just treated it aggressively (like you, had 6 FEC then 25 rads and now on Tamoxifen). Anytime I've asked about it I don't get much information as it is rare, but they put my mind at rest about it a bit. I have been trying to research it on the internet and not found much out. Thanks Tina for the information you found out.
Do you know anything else about it? I've got another appt with my onc in May and plan to ask again about it.
Bev xxx
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16-04-2010
12:55
Val - hope you feel better soon 🐵
Sue - have a great time at Gleneagles.
Looking forward to seeing everyone on Sunday - it's been ages!
xx
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29-03-2010
08:50
Allo all!
I was thinking of you all yesterday - how were the burgers!? Got back from London a couple of hours ago and I need a week to recover. Drank way too much but had great fun with my mates and realised I still don't miss london that much.
I think 18th is good for me - I'll put it in the diary.
Hope you're all keeping well and looking forward to seeing you guys next time - it's been ages
xx
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21-03-2010
12:05
Hi all
I was thinking of you guys at the YWF - but had a lovely day out for my friends birthday.
Lulu - sounds like congratulations are in order for your new job!
Sorry I won't be around to meet the new ladies and to catch up this time, I'm off to London on Friday to catch up with a mate who's over from Oz for a bit. We'll be staying not far from where we used to live in Greenwich and I'm really looking forward to seeing the place again.
Hope to see you all at the next one though!
xx
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18-03-2010
06:27
Hazel - how are you holding up honey?
Ladies - enjoy the YWF this weekend - will be thinking of ya.
Lulu - hope all goes well at the appt tomorrow 🐵
Val - fingers crossed all is well.
Cyber hugs to everyone
xx
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10-03-2010
09:06
Hayz - as the other lovely ladies have said already, if there is anything I can do, just shout. Sending you a huge hug honey and thinking of you loads xx
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09-03-2010
09:11
Hi ladies
Hayz - any news yet?
Val, Dot, Lulu - hope you had fab holidays 🐵 I've got a long weekend planned at my parents in Kent - not quite so exotic! I'm watching a prog on Sky Three called 'my breasts could kill me' - I'm not sure if I want to be watching this. It's not cheerful so far.
I'm back at work full time now, mainly for financial reasons after my benefits were stopped quite abruptly but am coping well and feel more 'normal' having this routine again and not being couped up in the house for ages.
Hope you're all feeling well anyway - will miss you on 28th 🐵
xx
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09-03-2010
09:06
Hi - I too had the hole in the sock sensation on FEC - I had my last one in November. My hands still tingle a bit even now - I put it down to dehydration after each treatment. Good luck with the rest of your treatments x
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03-03-2010
08:53
Hayz - still got everything crossed for you sweetie. Hope you hear soon xxx
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01-03-2010
01:59
Hi there - I treated myself to an aromatherapy massage with Reiki about a week after each chemo last year (and am still having them now as they are fantastic and really lift my spirits). Since surgery though the massages have been different and avoid the lymph area. My lady has done courses in treatments for people with cancer, so knows which oils to avoid, and she helps out at Maggies in Edinburgh when they have sessions there.
If you can find someone who has experience with cancer patients you should be fine. I do recommend them as they really cleared my head after each treatment.
Bev
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01-03-2010
11:02
Hi ladies
Hope you're all well - I've not been on here much of late but catching up now. Just about to go out the door to my oncology check up with a list of questions as long as my arm this time! I'm a bit anxious for some reason.
Shame I can't make 28th but hope to see you guys soon. I'm back at work full time as of this week coz they're stopping my benefits since I started part time and I'm soooooo skint. Oh well, had to be done sometime and think I'm ready - will find out at the end of this week. It'll stop me moping about the house on my own every day at least!
Angie - your dress is beautiful 🐵
Val - how was your holiday?
Lulu - have a fab time in NY.
Big hugs to you all
xx
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