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Nat223
Member
since
26-08-2017
48
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2
Hugs
02-02-2019
08:48
I had bilateral frozen shoulders three months after finishing rads (after surgery and snb). It took me months to get it properly diagnosed - it just felt like really painful upper arms and shoulders which were agony if I reached for anything. It it didn’t occur to me that it could be related to the BC, but the orthopaedic surgeon who diagnosed it suspects it is. Apparently they don’t know what causes frozen shoulder but it’s more common after surgery or other trauma as it’s a sort of auto immune response when your body lays down scar tissue in the shoulder capsule. And it can therefore be on the other side to your treatment side. My oncologist agreed. Once I’d got it diagnosed (MRI) the steroid injection helped hugely. As others have said, although the symptoms are similar to shoulder impingement the treatment is very different so do get it diagnosed as early as you can. Im on a slow recovery - apparently it can take up to two years to go!
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07-08-2018
04:12
Good luck Knktnak. Yes, apparently Tamoxifen is much better for your bones and joints. Give it the three months - my Oncologist suggested an 8 week trial of it after Letrozole and I really only started to notice the difference right at the end.
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05-08-2018
07:06
I thought I’d give an update, three months on from changing from Zoladex and Letrozole to Tamoxifen. In short, much better for me on side effects. My painful hands are a lot better. They are still stiff in the morning but a lot less painful. I did have more hot flushes initially but they’ve calmed down. Fatigue levels really low - my energy is fully back. I am getting more constipated but Senacot seems to work! So I’ve decided to stay on Tamoxifen. Good luck to others trying to decide on the best drugs to take...
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28-06-2018
05:23
I’ve been told ibuprofen (neurofen). I’ve taken it for my joint pain.
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25-06-2018
08:34
I’m now a few months on - got my cording in late March. I’ve been stretching as often as I can (at least twice a day) and I’ve now also had 12 physio sessions. The physio sessions have given me confidence to massage the cords myself, which has helped. It’s now reduced hugely. I can still feel a cord in my armpit, and shaving my armpit takes a lot of care but I don’t feel pain now unless I do a very strong stretch. I also discovered (or rather, the physio discovered) that the cord went down my side too, which was one reason it was so painful sleeping on my side. The physio massaged the cord in my side so it’s now fine for me to sleep on my side again. My cord never ‘popped’ (apparently some don’t) but apparently popping is good! my advice would be to keep stretching, but also to ask your consultant or breast care nurse for a physio referral. Seeing the physio helped me hugely.
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15-06-2018
06:25
I’ve now had 5 days on Tamoxifen after 9 months on Letrozole. Initial experience hasn’t been good! My joints all ache (I’d got to just hand pain on Letrozole but I’m now back to knees throbbing). I’ve felt absolutely knackered all week, and a bit low (PMT like symptoms of feeling a bit low and snappy). I’m going to give it a bit longer as the Letrozole and Zoladex will still be in my system, so I might just be experiencing the impact of all of the drugs on top of each other. And I’m hoping that when it all settles down the side effects might be better than on Letrozole. But I’m hoping that happens soon, as this isn’t pleasant.
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11-06-2018
10:14
Hi. I’m joining this thread a few years on as I’m just changing from Letrozole to Tamoxifen and wondered if others could give any advice on what to expect? I’ve been on Letrozole for 10 months now (with Zoladex as I’m 46 and pre menopausal). I had a lot of horrible side effects 4-6 months in (hard to concentrate, knee pain, alcohol intolerance). Now, things have calmed down and aside from the usual menopausal symptoms my main Letrozole side effect is now really painful hands. But the hand pain isn’t really tolerable. So my oncologist has suggested I try tamoxifen for a few months and see if the side effects are easier to tolerate. Advice welcome - I took my first tablet this evening....
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20-05-2018
08:37
Yes, finger pain and Letrozole... ive been on it for 9 months now. The finger pain started after about four months and hasn’t calmed down. I literally cannot bend my fingers without severe pain when I wake up in the morning, and after a few mins gently squeezing a squeezy ball (for arthritis) I can get them moving. But they are really stiff all day. I went to see a hand specialist in Feb who did lots of tests and concluded it was the letrozole. I’m now discussing with my Oncologist the idea of a trial switch to Tamoxifen to see if that’s better.
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20-05-2018
08:28
Update from me, 9 months after starting on Letrozole.... I've now just completed active treatment, and have just tentatively had a glass of wine (one glass, last night). The good news is that I didn’t have the really bad reaction to it that I had when I started on Letrozole, so I think that side effect has gone. But it did go straight to my head after 9 months of being teetotal! After 9 months ‘dry’ I’ve got used to not drinking, so am now going to stay largely teetotal and just drink wine on special occasions. Helps keep the weight off too...
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20-05-2018
12:56
1 Hug
I've started this thread as I can't find much written anywhere about cording - and wanted to make sure that those of us who are suffering with it can share tips and advice! I'm 46, very active and sporty before my diagnosis last year. I had a lumpectomy and setinal node biopsy in March 2018 (10 weeks ago now) and was immediately fine in terms of full arm movement - although I still did my physio exercises - but three weeks after surgery, cording seemed to come on overnight. I had a thick 'cord' from my scar up my arm to my elbow. I also had a thin cord going down my side (but I only discovered this one last week - I was wondering why my side was still sore, then found it...). I had rads 4 weeks after surgery, and finished rads a fortnight ago. The cording was sore more than restrictive of movement, but it was extremely uncomfortable and is the main reason I still can't wear a bra - as it hits the cord which is sore to the touch. I've been seeing a physio (before, during and now after rads). It's helped reduce the cording, but it's still there and still tight, just less extensive. I stretch it as often as I can, and mostly in the mornings before work and evenings before bed ("child pose" works well - but it rather hard to do in an office during the day!). The physio tells me that it takes time - probably about 6 months to go. I've been massaging it myself on the physio's advice (she goes in pretty hard... as hard as I can tolerate in terms of pain, but it hasn't caused any wider issues - just a bit of soreness the next day). I've read as much as I can about it, but all of the medical literature seems to say 'we don't know much about what causes cording' - which is pretty much what the physio has echoed. it's getting less painful/ uncomfortable but feels like I've got a bag of marbles in my armpit! Hints and tips from those who've had and managed cording would be really appreciated... and I hope we can create a thread which helps others who get it.
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04-05-2018
07:28
Well done Andi! Enjoy the weekend. My first day after rads today and it was lovely not going into hospital!
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03-05-2018
04:40
Finished today! Skin v sore but very pleased to be done. Good luck tomorrow Andi. X
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30-04-2018
07:47
Just three more to go! Looking forward to the weekend. A bank holiday to recover - great. How’s everyone doing?
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26-04-2018
09:06
BizzyLizzie- good luck for your final zap tomorrow. Hope you recover soon.
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25-04-2018
05:53
Just done number 13 of 19. Just 6 more to go. The tiredness has kicked in now though - could sleep right now. And my skin is feeling hot and sore. Can’t wait to finish. Good luck everyone for the rest of your treatment. And hope tomorrow goes well ButterflyFlyFree!
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