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imac55
Member
since
23-09-2013
121
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22
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18-11-2021
01:48
1 Hug
Hi, I have bone mets in my spine, pelvis, ribs and lesion in lung and liver. I've started getting aches in my upper arm bone. Whenever I have routine scans I'm told to put my arms above my head, so only torso and pelvis are scanned. I'm speaking to oncologist next week, if he sends me for an xray on this, will it be enough to show up mets if present? Or is there no point in an xray as current targeted treatment should deal with it? Oncologist won't ct scan me for a few more weeks as only been on new treatment for a month. I'm very tired, sleep a lot in the day. Could this be my treatment or the cancer trying to kill me off?! Irene
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19-08-2021
05:26
1 Hug
Hi Timmycat, I've been on Capecitabine for over 2 yrs. It's kept me stable in that the tumours didn't grow, for over 2 yrs and cancer markers hardly changed. Side selects were OK, much easier than fec for me anyway. I've kept my hair and learnt to live with the aches, as cancer treatment is all about how you tolerate it versus the potential benefits. I was told it wouldn't work forever and sadly, it has stopped working. I'm now waiting for biopsy results to determine next move. If the choice is yours to take, I'd say give Capecitabine a go. On balance the side affects are worth it. Good luck for the future. Irene
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18-08-2021
11:45
5 Hugs
Well today I had a biopsy to determine my next lot of treatment. It was pretty rough. Apartment from the pain I was also told that the cancer had broken out of the pelvis bone into soft tissue, which has frightened me, as this has happened very quickly. I suppose I can expect it to appear in other places like my liver? I also have new sites of disease along my spine . I'm devastated. And can feel my edges fraying and my strength diminishing. I'm usually so strong. This news has hit me hard today. Just needing an ear from those who understand. Thank-you. Irene x
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09-08-2021
04:47
4 Hugs
Hi all, It's ironic that a couple of weeks ago I was on here moaning because I couldn't get travel insurance, and today my oncologist rang with feed back from my recent mri and ct scans. It's not good. I have bone mets along my spine in 9 different vertebrae. Also rapidly developing osteoarthritis in the spine, and 2 compressed discs, caused by the fragile bone he thinks. It's one hell of a shock after being stable for 4 yrs with one lesion in my lung and a tiny one in my pelvis, and regular routine ct scans not showing fast growth or changes. My tumour markers are increasing too. I now need radiotherapy for back pain and a bone biopsy for establishing if I'm hr positive or not. This will determine the next lot of treatment. I've shared with my husband and on here. Dreading telling my sisters and grown up children. All live away so may have to be in phone calls. Fragile spine means a big change in my life re independence, and a possible house move. Even though I knew 1 day I'd be experiencing this, it's come as a shock as other than the persistent and increasing back pain, I feel quite well. I'm gutted 😢
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31-07-2021
03:29
So sorry to hear about your change in diagnosis. Its likely you won't be covered as things stand, and I also think the original advice you were given re declaration to insurers, was incorrect. I want ins excluding BC, but noone will give me it as I'm on chemo tabs. Apart from 1 who quoted £1000! Good luck with your health and your insurance! X
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31-07-2021
03:22
Thanks. It's so demoralising isn't it? Same as you was on exemastane and could get ins with bc not included. But since on Capecitabine noone will do that offer. I'll keep looking! Irene
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31-07-2021
03:16
As I'm not unwell, I'm sure I don't need my cancer to be covered. I'd be happy with insurance for all but. So far only one will covered me and its inc cancer, and £1000 for a week in maderia! I'll try m&s though, thanks! Irene
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31-07-2021
03:11
Hi Windflower I have ONJ left un diagnosed due to covid and at time no dentists open. I was eventually referred via my oncologist to maxilla facial dept who also dragged their feet. I was seen by a doctor, but discovered after undergoing 2 lots of surgery suggested by him, on the bone, that he wasn't an expert in the field! I pushed to see a consultant who put me on long term antibiotics as the surgery wound won't heal. If you have ONJ apparently surgery isn't recommende, the consultantsaid this! Sounds like in your case it was needed though, as surgery interfers with blood flow to the site. So if your wound feels like it isn't healing, it likely isn't. I was on Denosumab for 4 yrs. Been off it a yr but it can still affect the bone up to 2 years on. Its really got me down, especially when the wound smelt foul with infection that wouldn't clear. Lesson learnt, will always ask for Dr's credentials before allowing them to operate on me! Hope it's sorted soon.
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21-07-2021
11:29
2 Hugs
Hi, I'm 15 yrs in, 6 with secondaries, 2 on chemotherapy tablets. Disease stable. 3 questions. 1. has anyone ever travelled abroad with no insurance? Possible? 2. Has anyone travelled to Europe and been given insurance whilst on chemo tabs? 3. Has anyone managed to get insurance but with a policy that excludes existing illness. I.e., covered for all but cancer? After hrs trawling, phoning companies and getting knocked back, the only quote I got was for 1 wk in Maderia, £1000 for the policy (just bc, not covid!). I'm so depressed about this. Travel is my thing. Thanks, Irene
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21-07-2021
11:16
I've got same problem even though I'm well! All but 1 said no, that was Insure Cancer. They quoted £1000 for a wk in Maderia! Hol only costs £350!
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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
2 Hugs
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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