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rosiet
Member
since
28-09-2013
12
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4
Hugs
30-08-2019
09:31
Mine was also lobular but of course at 38 I wasn't having mammograms in UK but I had found a lump hence mastectomy and then chemo etc. Have faith, stay hopeful and as long as you feel ok live life to the full
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30-08-2019
09:29
Mine was also lobular but of course at 38 I wasn't having mammograms in UK but I had found a lump hence mastectomy and then chemo etc
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30-08-2019
08:11
1 Hug
Hi Linda, After initial diagnosis chemo,radiation and surgery in1991 I developed bone mets in sternum and was put on exemestane sand then Denosumab. Stable till about 2003 when developed more bone mets which didn't bother me until skull mets 2017 and more radiation. Now peritoneal and pleural mets hence new treatment. While I only had bone mets Onc didn't want to change treatment. Have always felt well with minimal discomfort so feel very lucky. Now nearly 69yrs
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27-08-2019
08:15
1 Hug
Here's hoping your results are good Caz.Glad to see that more of us are being put on Abemaciclib/Fulvestrant combo - I was first at our hospital. Just hope it helps. Although my disease has recently progressed I've lived quite well with multiple bone mets for 20yrs - original breast cancer was 1991 so maybe one day cancer will be seen as just another chronic disease to manage like arthritis or diabetes
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26-08-2019
11:01
Have had stable bone mets for 12yrs but tumour markers went up last few months and latest CT showed spread to peritoneum and pleura. Started on Abemaciclib/Fulvestrant combo a week ago. So far mild abdominal discomfort, manageable diarrhoea without need for Imodium yet and fatigue. Not too bad!
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15-08-2019
09:50
1 Hug
About to start on Abemaciclib and Fulvestrant in ?next week or so
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28-08-2016
08:08
Dear Hollymeg, Just had CT scan again which shows more progression of bone secondaries and getting some minimal discomfort in hip/leg/pelvis where I have secondaries but all quite "copeable" with paracetamol/codeine as required. I've managed all these years and intend to live with this disease for many more to come! New grandchild due next week so have to keep on keeping on!! Best of luck with your treatment!
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16-08-2016
09:06
1 Hug
Hi All, Have been on exemestane for years and Denusomab for a couple. No problem with treatment. Multiple slowly progressive bone secondaries for over 21yrs now after initial breast cancer in 1991! Have aches but as you say could partly be due to age (64)! Feel very blessed that I have managed to live well with the disease all these years. Good luck to everyone!
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27-10-2013
05:12
Just had my 2nd Denusomab inj. Main side effects are headaches and fatigue. Am hoping I will be able to self administer eventually as am a nurse and such a simple injection! Would have to sort blood test though. I also work in GP practice so if more convenient for you to have there should not be difficult to sort as long as you get supply of injections from hospital as GP unlikely to want it to come out of practice prescribing budget! Politics involved!
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04-10-2013
03:59
Had 1st dose of denusomab for multiple bone mets (primary 1991!). Debilitating headache 4 days later - previously on pamidronate but changed cos fed up with IV for 3hrs. Anyone else get SEs?
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28-09-2013
05:04
First time on forum and had first dose denusomab yesterday. So far so good! Count myself very lucky as had stable bone mets in sternum for 14yrs (breast primary in 1991!) and just been on exemestane, then scan last year showed mets now in ribs, leg and pelvis but no real problems. Apart from feeling tired (but am still working) all ok. Was started on IV pamidronate but switched as fed up with time required and finding a vein! Good to be part of supportive forum.
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