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imac55
Member
since
23-09-2013
106
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3
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13-07-2019
07:50
Hi Nikki08 Thank you so much, it really helped to read your post. I am delaying chemo and going sailing! This health news has affected my fitness regime both mentally and physically, but hoping to still enjoy the trip. I've got my head around the fact I now have limited time, I thought I was invincible! imac55. xxx
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01-07-2019
03:32
1 Hug
Primary bc I have 2006, mets diag 2015, lung and pelvis. Exemestane and denosumab for 4 yrs, great results, massive shrinkage, then suddenly, lung tumour has doubled in size, tumour markers raised. So, advised to take Capecitabine until it stops working, then onto more heavy duty stuff. So I feel like I've had a charmed 4 yrs, and now I'm slipping towards the precipice of ill health and dependency. I'm gutted. I'm booked onto a holiday of a lifetime, sailing a tall ship, in 3 wks. Oncologist said I can start Capecitabine on my return, mid August or have one dose pre trip. I opted for 1 dose, but now decided I may not ever be fit enough to do this again, and I don't want Diarrhoea on board ship, so starting Aug 22nd. Should I be having my denosumab as normal every 4weeks until I go, and continue on exemestane also till chemo starts? I'm a bit confused about this. Sorry very long text. imac
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01-07-2019
03:07
Thank you, it was great to hear your positive response and how well its served you. Maybe I'll be lucky too! Interesting reading about the feet thing, not mentioned on the leaflet I've been given.
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11-06-2019
01:19
Hi folks, Not been on for a while, trying to live my life, almost 4 yrs into secondary diagnosis. I take exemestane as a hormone blocker for my lung met, and denosumab for my pelvis bone met. Sadly the lung tumour, after yrs of shrinking is growing and has doubled in size since last scan. It was a bit of a shock as I was beginning to feel invincible! Doc thinks it's mutated. He's getting a 2nd opinion but is pretty sure, and has said the next step is to offer me chemo tablets. I know nothing about this type of treatment. I'm reeling a bit, and feel very negative which is unlike me. Started thinking about how I'll die in pain and uncomfortable, and where I'll be buried etc. But really just want to get on with life. I'm booked onto a tall ship sailing trip and also worried I'll have to inform the insurance company of my new health development. Any advice welcome. Thanks.
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12-11-2018
11:05
Thanks Helen. That's a useful tip, but so much more money than my current eurotunnel one. I don't even want or need to be covered for the cancer, I'm doing really well. I'm going to speak to the oncology nursing team on Thurs. See if I am classed as terminal. I'm pretty sure I am as can't be cured. Thanks anyway.
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31-10-2018
10:51
Hi Optimistic Thanks for this tip. I'll give them a go. I now have secondaries and this has been the stumbling blocks today. All are classing me as terminal and so won't cover me, even though I'm really well! Imac x
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31-10-2018
11:42
Hi folks, I've discovered today that my current insurer will no longer cover other than mainland Europe, it is Eurotunnel. My next holiday is Maderia so thats the end of that policy. I had wanted annual for a couple. Last yr with Eurotunnel it cost £77. Unfortunatly, so far the only company that will insure me is Insurecancer, and it will be many hundreds! I am really well, and happy not to include the cancer myself, but need cover for luggage, delays etc. With Eurotunnel I had pre existing illnesses excempt, and no medical questions asked. I just had to declare I wouldn't claim for these/this. Do any of you know of any other companys that will insure me excluding my cancer? I have mets, but recent scan showed no evidence of bone lesion and lung one massively reduced! This is so brilliant, but as I'm still classed as terminal, these companies are being black and white! Thanks in Advance. iMac
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15-12-2017
02:57
Hi lovelies, I've not had the happiest of marriages, and surprisingly, since my secondary diagnosis, my husband has been worse than ever. I walked out recently, but circumstances forced me back. During my absence I registered with an agency to do unpaid work abroad in return for board etc. I'm 59, but was surprised to get an offer of a place, in Spain, easy very part-time work, helping with homework etc, for 6 mrhs, I'm an ex teacher. I'm now in a dilemma re my treatment. I think I can get tablets for this length of time, but I have a mthly injection of denosumab, which is stored cold, and I'm unsure if I could get this without paying big money privately in Spain. Any ideas welcome. It's a great opportunity for me, being in pretty good health re bc. My arthritis is my main problem. I also need to feel useful again. And thrive in the sun. I won't deny it's an escape route, but also an exciting life change at a time when stuff looks pretty bleak at home. Appreciate your help. Imac
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06-11-2017
12:52
Can't help as looking for advice myself, but just wanted to wish you luck and hope you get insurance and enjoy Lake Garda, I hear its a wonderful place, and you deserve to be there! X
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06-11-2017
12:48
This was really helpful. Wish I'd seen before writing my thread! Thanks Nicky!
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06-11-2017
12:44
Hi All, I'm struggling to find a policy to cover me that doesn't cost more than the holiday! I have used Eurotunnel in the past, they were great, but their terms seem to have changed. I want annual cover. I also have a husband with hi blood pressure (controlled) and I have controlled epilepsy. I am 11 yrs post primaries and 2 yrs post Mets in lung and bone. Both responding well to treatment which is not chemo. I take Exemestane and mthly Denosumab injection. I am sure our doc would confirm we are fit for the holiday, but it now looks like Eurotunnel won't cover me as technically terminal. (I only want cover for accident, luggage lost, etc etc!), not the cancer. I only ever got insurance that made our pre existing illnesses exempt, but this wording is no longer in their terms. Any ideas please? I just want to avoid: 1) major cost & 2) Itemsing all my med history knowing they won't cover me anyway. BTW just Europe. Cheers imac X
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03-10-2017
09:32
Hi Bon, I'm grateful for your comments. I had this with arimidex when I had primaries and was moved to tamoxifen, which was loads better. It's all getting a bit much, as I have this gut problem and a neuro issue at same time. Both appear to be unconnected to bc, but all causing pain and discomfort. I also think the cocktail of drugs I'm on may contribute to these two issues. Pretty pissed off to be honest. Thanks for your concern, imac x
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02-10-2017
11:39
Hello Ziggy I've only just seen this. I'm very sorry for not responding after you too such a lot of effort to help. I've taken your points onboard, and am planning changes in my diet, as I may be coming off my meds, so need all the help I can get! Thanks again x imac
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02-10-2017
11:27
Hi all. Need to bend your ears. I'm 11 yrs in. Diagnosed with secondaries 2 yrs ago, in lung and pelvis. On exemestane daily and mthly denosumab injection. The side effects are getting me down. I walk like a doddery old lady, I'm 59. I no longer work which is just as well. I was getting quite fit, visiting gym, but due to a stomach problem, I think unconnected, I stopped for a while, and now I feel quite disabled. Got oncologist in 2 wks. Thinking of asking if I can come off meds, at least for a while. Am I mad? My lung tumour has been shrinking and pelvis bone one stable. What would you lot do? Thanks
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20-07-2017
07:01
Hi Bon. My appointment was Monday, and I'm on holiday from the day after. In Spain. It's very hot! Results from scan very promising with shrinking lung cancer, and consultant very reassuring. He also analysed my results from urine infection, which came from my bowel. Basically my gut is out of balance with too many bad bacteria. This means all the pain, bloating tiredness and discomfort are linked to this. I've been advised to take probiotics and avoid yeast, sugar including alcohol and coffee all of which feed or stimulate the gut. I'm trying, but on holiday so not trying too hard until my return! Thanks for asking, sorry I didn't post sooner. X Irene
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