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hollymeg
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01-05-2012
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28-08-2016
12:18
Rosie that is truly remarkable to hear! Long may it continue for you. Gives the rest of us hope too.. Thank you. I'm still waiting for an appointment to get results from jaw X-ray before we even discuss injections. Seems like I will never get started and all the time the squatters are free to roam... @nicky08 wrote: Hi I thought I'd start a thread for this new bone strengthening treatment so that any of us on it can share experiences, problems etc. I had my first injection on Friday which was in the abdomen, under the skin rather than into a vein so it didn't hurt at all - not surprising as there's enough blubber there to protect me! I am having regular blood tests before my Capecitabine tablets are dispensed every 3 weeks and the pharmacists at the hospital have requested my blood levels of magnesium and potassum are recorded each time for this (denosumab) drug, presumably for levels not in the norm. I've also been given AdCal chewable tablets for Calcium levels which can be casued to drop whilst on denosumab. Currently I'm prescibed denosumab through the Cancer Fund but I'm sure more of us will be on it in time. Nicky
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25-08-2016
08:28
Hi Victoria, hope your doing ok. I was told I have mets in my ribs 2 weeks ago. Been unsure about it for 2 years. Sounds like you have had it rough. Here if you want a chat x
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15-08-2016
06:13
Thank you ladies for your replies. It's reassuring to know it's doable. Still worried about what I have to face x
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15-08-2016
06:08
Hi there, I'm newly diagnosed with mets. I had primary in 2009. Would love to chat with others in similar situation. I'm staying on exemestane and going to be having damobsame (however it's spelt) injections. Anyone else on this combo? How you finding it, how long has it been working for you. Tia
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15-08-2016
04:04
I've been on tamoxifen and now exemestane for about 6 years now. Been on a adcal for years too as have osteopenia too. I've been told I'm staying on exemestane as it's obviously working... is it though? These mets have developed while taking it, that's what I think anyway. Thanks for your support x
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14-08-2016
10:30
Thank you nicky, I'm glad you did so well for so long. Thank goodness your liver mets are stable too. Never ending is it. I've found that thread thank you. I've posted and waiting for reply. .denosumab is what im going on along with exemestane which I've been on for years. What treatment did you have for your bine mets?
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14-08-2016
07:45
Hi just wondered how everyone is doing on here. Due to start the injections soon. Any advice?
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14-08-2016
07:29
Hi there, please may I join in. Thanks for the invite Carolyn. I've been diagnosed with mets in my rib near my mx site. Can I ask others if staying on your hormone tablets and having 4 weekly dam??? Injections is normal course of treatment for just bone mets? Sorry don't know the spellings. I was originally diagnosed back in 2009. I'm worried about the jaw rot side effect most. How have you all coped with it? Thanks in advance for any advice you can share x @finty wrote: I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait! I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes ..... finty x
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14-08-2016
02:57
Hi there, I'm back again. I had BC in 2009 and have just been told I have bone mets. Could some point me in direction of best bone mets threads, there seems so many. Thanks x
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14-08-2016
02:51
1 Hug
Hi there I had BC back in 2009. Last week I was diagnosed with bone mets. Could someone point me in direction of best bone mets thread please
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06-01-2015
10:59
Kazza I had mine out 5 years ago at age 46. The op was a doddle, just felt like I had done some sit ups and a bit bloated for few days. As for hot sweats they were no worse than I was having due to chemo. I hate dentists too and given the choice I would choose the op lol. Good luck for tomorrow x
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05-01-2015
12:14
Hi lynnq I too was diagnosed with hiatus hernia in dec, I had never heard of it. A few weeks before my ct scan I had been to docs with reflux and was given omprezole which really helps. Can we not take ibuprofen with this condition? . I'm glad your mets are under control too. My tumor markets are normal as far as I know anyway. I am on adcal but no bone strengtheners. Thanks for your reply
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05-01-2015
10:47
Hi can I jump in and ask you girls a question. I've been told I have about 4 hot spots on a bone scan but not yet showing on ct or mri. Due to pain at bottom of spine and the bone scan I'm being treated at early bone Mets and being kept on Examestane which they think is making the mets slow growing. I'm being rescanned in 5 months. I apparently also have several hemangiomas in my spine too. I just wondered if anyone else had similar diagnosis and wondered how long the hormone drugs alone kept working?
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23-12-2014
09:11
Thanks mrsblue glad to hear your doing so well x
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20-12-2014
06:15
Just found this and wondered how you ladies got on. They think I have mets but slow growing due to Examestane im already on. I've just had a cut which showed no change. Bone scan 6 months ago showed several hot spots so still no clear diagnosis. They just say they think it is mets and will redo all my scans in 6 months. Need to see pain clinic for pain management in meantime
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20-12-2014
11:10
Thanks for your reply ladies. I asked my onc if sometimes it takes a while to diagnose some, she said yes. I asked her if the exemestane could be making the mets slow growing,she said yes. Best I can hope for then is 'no change' again in 6 months. I'm sure you understand, a definite answer would be helpful
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19-12-2014
08:43
6 months ago i had bone scan ct and mri. Only the bone scan showed 4 hot spots. I was told ' we think it's bone Mets' but can't say 100% as ct and mri were clear. Last week I had a follow up ct which still didn't show any changes but because of the bone scan 6 months ago they still think it's mets but slow growing because of the exemestane I'm on. I've been told to stay on exemestane and I'm having all scans done again in another 6 months. My question is has anyone else taken a long time to confirme mets? Has anyone else had clear scans but did turn out to have mets. We took the 'no change' as good news but in my mind I'm confused. Do I have secondaries? Just would like to have had a clear answer to know what I'm dealing with
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13-07-2014
07:37
Was wondering, how many of you had mets that were difficult to diagnose? My xray, Ct, and MRI were clear but my bone scan showed 3 hot spots. They say I don't have mets but won't guarantee it. I have to wait another 6 months before they will repeat a CT scan.. Can't help but worry. Just wondered if it's normal for mets to be difficult to diagnose
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11-07-2014
09:03
Hi ladies, I finally saw my own onc this week. They have decided because the X-Ray, MRI and CT didn't show anything they don't think it's bone mets.. But they can't guarantee it because the bone scan showed 3 hot spots. Was wondering if anyone else's mets were difficult to diagnose? They are going to monitor me and do a CT scan in about 6 months. I am taking it as good news but relieved they are going to scan me again... Thanks for your ears again x
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