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Lambo129
Member
since
30-08-2015
35
Posts
15
Hugs
04-10-2022
10:42
5 Hugs
Hi It's so traumatising when diagnosed with secondaries. I was diagnosed in 2019 with bone and liver mets. It was a shoke, I was gutted and thought my life was over. I had just started at university studying nursing. I was 49 at the time and thought nothing is stopping me firom finishing my degree. I worked all the way through covid and qualified in 2020,I started my role as a qualified staff nurse and started work straight away. I have never been off sick, while all the other staff nurses have been off. People comment on how good I look and can't believe I have a terminal cancer. I am very active and when not at home Jormally
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21-09-2022
10:56
1 Hug
Hi loulou1007 I was originally diagnosed in 2015 with stage 3. I had chemotherapy (6 cycles 3xfec and 3 x taxoter.) I then had a mastectomy followed by 15 rounds of radio therapy. I was out on tamoxifen. April 2019 I was diagnosed with stage 4 with bone and liver mets. Bone mets are all over, hip pelvis area are the worst. I was given chemotherapy (6 rounds taxotere) and every 3 weeks I got herceptin, purjeta and my bone strengthen er zomita. I also started letrazole. July 2022 I was told my treatment was no longer working and the cancer was spreading. I was taken off all treatment and I now get kadcyla every 3 weeks. It has got the cancer under control at the moment. Regards Ellie
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14-09-2022
03:16
1 Hug
when I was first diagnosed I did get doxytacyl over 6 months. it worked well on the cancer. I was then getting herceptin and perjeta every 3 weeks and taking letrazole. my checkups were a good, cancer under control. my last check up was April and all was good. in June I started to get pain in my hip, it was the same pain I had in the left hip when I was diagnosed in 2019 so insisted I got a scan. it was just as well cause that's how I found out the treatment was no longer working, my next clinic was 27th October!! I was told to stop the letrazole and I am now on kadcyla. I had my first one on Friday last week, so far no side effects. I hope all goes well for you. ellie lamb
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10-09-2022
12:21
Hi I was originally diagnosed with stage 3 breast cancer in 2015. I have been stage 4 since 2019, and have been receiving herceptin and perjeta every 3 weeks. In July I was given the devastating news that my treatment was no.longer working. This week I had my first dose of.kadcyla, which is my new treatment. Any one able to tell me what side effects they have. I heard it can cause hair thining, mine is already very thin. I don't think I can cope with looking it again. Thanks Ellie lamb
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07-02-2020
11:02
Hi I've not been on the forum for a while. I was diagnosed in April last year with bone and liver mets. I have mets in all my bones, but was wondering if anyone knew why there is a focus on mets in the skull. I applied for travel insurance and was specifically asked if I had mets in my skull!! As I say I've got mets everywhere but they were only interested in the skull. i also take OxyContin and oxynorm for pain relief but still find the pain in my hips and knees unbearable. Anyone found anything that actually makes them pain free. i hate this disease, I'm only 48 but feel about 98. X
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26-07-2017
10:05
I've been taking tamoxifen for 18 months and suffered with the usual side effects however in the last 2 weeks I've started getting headaches. Some days dull but other days quite severe and always in the same place. I read the side effects of tamoxifen and it does list headaches but is it normal for a side effect to start 28 months later. I haven't changed the brand of tamoxifen, any one else experienced this x
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26-07-2017
09:55
Hi I was the same tamoxifen caused horrendous hot flushes and night sweats. I started taking venlafaxine and it made a huge difference. I also have terrible joint pain and although I've been taking it for 18 months have just started getting headaches that I can't get rid of despite regular doses of paracetamol and co coda mol. Hope you get some relief x
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23-01-2017
09:28
I had mastectomy and node clearance jan2016, rads March 2016 and I did a tandem skydive October 2016. It is quite painful as the harness is very tight but I managed it fine. Got some pretty bad bruising and friction burns on my thighs but Defo an experience. I like the free fall, didn't much like the parachute bit, felt sick with the motion. Good luck with it xx
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22-01-2017
08:44
Hi Rosie glad it's all healing for you, it's not what we need to have open wounds when we have been through so much already. It should be a time to get our confidence back and enjoy our new boobs. My husband has booked me a trip away next weekend, shopping and a hotel and I intend on buying myself something nice. Take care xx
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20-01-2017
08:11
Hi jobry68 my breast cancer nurse did suggest an anti depressant that might help with hot flushes but if I'm honest I didn't think it could work but if you have tried it I might need to rethink and give it a go. I'm seeing her next week so will have a chat about it thanks x
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20-01-2017
08:09
Hi jobey68, my breast nurse has mentioned before about an anti depressant that helps and if I'm honest I found it hard to believe but if you have tried it and it works I might have to re think and give it a go as my hot flushes are unbearable. X
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20-01-2017
08:03
1 Hug
Hi Rosie i was at hospital today and wound on my stomach no longer needs a dressing, have a small one on my boob but hope to get rid of that next week. I have a date with my consultant now , 10th Feb!!! I will be 13 weeks post op. So glad I didn't have any major problems. Hope all went well with your appointment xx
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17-01-2017
07:28
Hi strudel i started taking tamoxifen a year ago and was ok for first few months then started with hot flushes, joint pain, disturbed sleep, fatigue. It's unbearable, I've tried taking it in the morning and the evening and there is no change for me. I've tried the lady magnet too but it didn't work. Istopped taking tamoxifen for 3 weeks be ause I had reconstruction and in those three weeks I had no problems, slept great and no flushes. if anyone has any suggestions of what they have tried I will gladly give it a go xx
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17-01-2017
07:24
Hi strudel i started tamoxifen about a year ago and for the first two months was fine. I now have terrible hot flushes, fatigue, sleep problems and joint pain. I've tried taking it in the morning and taking it at night but it didn't help. I've tried the lady magnet but it didn't work. I had reconstruction in November 2016 and had yo stop taking tamoxifen a week before the op, didn't take it the week I was in hospital or the week after when I was home. I didn't have a single hot flush or any joint pain, sleeping issues for those 3 weeks. Once I started taking it again they all came back within days. My hot flushes are awful, I can swing from freezing to red hot and back to freezing within 10 mins. At night I can't sleep as too hot, then too cold it's getting unbearable as I am so tired. Any suggestions of what other people have tried, I would be glad to try x
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17-01-2017
07:14
Hi ladies i didn't have double diep just single. I am now 9 weeks post op and still attending hospital every week for dressing changes. I only go once a week now as they let me change them at home as my wound opening has gone from about 6 inches to 1 inch still open. I also have a small bit on my new boob which doesn't seem to want to heal. They keep changing my dressing type and did discuss the vacuum one but didn't go down that route. I am now getting out and about but haven't seen my consultant for my "6 week" check as apparently he is too busy. People say it must be great to have such a flat tummy but it's no good when the rest of me is still so fat!! hope you guys are recovering well xx
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22-12-2016
09:27
Hi ladies,I've not had a great time of it as I developed an infection in my stomach wound and part of my breast wound. My stomach wound has re opened now and I'm needing to attend the hospital twice a week to have it dressed. They say it is quite common and I need to be patient and take it easy but I'm now 6 weeks post op and didn't expect to still be living in leggings and joggy bottoms thought I might have managed something nice to wear at Xmas especially as I have a nice flat stomach too. I'm sure once the wound heels it will all be worth it, I am loving having a cleavage back it makes all the difference xx
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20-11-2016
09:24
Hi powdow and leane, thanks for sharing your experience with me. I think the tramadol is working although still have some discomfort. I find that in the morning things are not too bad but by the end of the day my stomach is very hard and my back aches a lot!!!!!! im just trying to look forward to Christmas because by then I should be doing well x
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17-11-2016
11:12
Hi guys, was at my doctor today and wad given tramadol. I don't normally take pain killers so will see how it goes on these over the next few days, I've taken them today and I feel better but will see how I sleep. thanks for all your support, it is a shock I didn't realise how bad I would feel after this op but looking forward too the next few weeks when I'm feeling better. helen X
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16-11-2016
09:56
Hi guys thanks for your replies and support. I have an appointment at the doctors tomorrow so hopefully will get some pain killers and some relief. I know it is early days Ian just normally a very active person and I'm struggling with how little I can do. Sodastream am I am wearing a support bra and although I have some pain in the chest it's more the tummy I am struggling with. Swampy1901 sorry to hear you had some problems it sounds as if you have had a terrible time of it, glad you are now on the mend. Thanks for for sharing your experiences with me. helen xx
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15-11-2016
09:21
1 Hug
Hi guys I've not really used this forum but I am looking for some support. My background is, diagnosis in August 2015 and started chemo in sept 2015, mx in January 2016 followed by radiotherapy in March. I have just had a diep flap reconstruction and the pain is incredible. I know I only had it on 9th November and the results are fantastic but I would like to know how to best look after my scars and how long recovery has been for other people. i know it's early days but I sometimes ask why did I do this, I feel as if the skin on my stomach is about to split across the middle. I had only just recovered from the mx and now feel 100 steps backwards. I am discharged with no morphine and feel my body has now gone into shock. i would love to hear your advice and hear how well people are after this op.. helen xx
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