Hi all. Been ages since I was last on. Trying to get on with living. Going through a bad patch just now. I seem to be responding well to exemestane and denosumab for lung and pelvis bone secondaries, but have started with other symptoms, and feeling a bit concerned it may have spread to my brain.
I have fatigue again. Having this really badly two yrs ago was how my secondaries were found. Also blarey eyes, brain fog, difficulty making decisions, zero tolerance with useless husband and falling asleep at strange times, like an hour after getting up.
Been to gp as also have had a uti recently, so ruled that out. She was thorough, but wanted me to mention concerns to consultant oncologist as seeing him routinely next week. I agreed, but still worried after googling symptoms.
Thanks for reading x
Irene
Hi Imac
I’m on e and d as well. You are the first person I’ve come across here who is on just that. I’ve been on them for nearly 2 years My mets are in pelvis and skull and I’ve got something else in my head that might not be bc. I do find that I get periods of fatigue, joint pain and pain in my head that come and go for no apparent reason and once they start they only get worse because I worry about them. (I was having a moan about it all only last month on another thread and kind people responded and made me feel better.) Many people on this forum say not to Google symptoms because it’s not always reliable and can make you feel worse when there’s no need. Exemestane seems to accelerate the ageing process - I have the beginnings of a cataract but maybe that’s to be expected at my age, I’m 70. It’s a good thing you are seeing your onc next week, you can get to feel a bit on your own between appointments so don’t hesitate to press for answers or investigations for your symptoms and, with luck, s/he will be able to reassure you. Lots of hugs for your appointment next week. Have you got someone useful who can go with you?
Bon xx
(I also can no longer type so hope I have removed most of the Typos before pressing post)
Hello Irene
Welcome to the forum …I think we all live on the fear factor lifestyle …every ache and pain we panic about but sometimes I find they pass after a few days …
If you do seriously have fears than your oncologist should arrange for mri /bone scans just to put your mind at rest …
It’s hot and I think our bodies do suffer more with the hormone pills we take …I take letrozole and really feeling the heat and tiredness .
Try not to Google too much …it’s scary …I avoid it as I would have nightmares worrying …it’s a day at a time …
Hugs xx
Thankyou for your kind words x
Thankyou. Sadly where I live, up north, we haven’t had the heat!
Hi Imac
I thought I’d posted a reply to your post this morning but there’s no sign of it so I must have failed to press the right button. You are the only person I’ve come across on this forum having the same treatment as I’m having - e and d. I’ve been on it for almost 2 years. I’ve got mets in my pelvis and skull and episodes of fatigue, joint pain and head pain come and go, seemingly randomly. Once they appear you start to worry and that will undoubtedly make things worse. It’s best not to do too much Googling, it can frighten you and it might not be the right information and will make you worry when there’s no need. It’s good that you have a routine appointment this week, you can get to feel a bit on your own, a bit abandoned between appointments. Have you got someone useful who can go with you? Make sure you get some answers to all of the symptoms you are having and ask for tests if you are not satisfied. That can be hard to do I know, depending on how assertive you are (I’m not) and what your onc is like. It can be hard to describe it as a ‘relationship’ when you only see them every few months
Lots of hugs for your appointment and i hope you get some reassurance. Bon xx
Hi Bone. Thankyou for your reply. I was diagnosed with mets in June 2015. Primary bc was Oct 06. Mast, few chemo, rads, arimidex 1 yr then tamoxifen 5 yrs. Think my mets happened in the two yrs I was drug free. Sure the tamoxifen had kept them at bay as very hormone receptive. Because of the fatigue and slightly off liver bloods I was given an ultrasound on liver, but radiographer spotted tumour on my lower lung at same time.
I then went through tests, some horrendous, and the small pelvis bone one was found too. I just get on with life, and am actually pretty grounded now after initial shock two years ago. But recent ill health has got me down. Marriage **bleep** too, which def makes things worse. Trying to exit that. In all life’s pretty stressful just now. I hate sitting around, I feel it’s such a waste of what may be a shortened life, but fatigue has taken over.
I have side effects from treatment. Lots of stiff joints and aches and pains. And one of my fears for getting older, facial hair (I get it waxed), which is quite depressing. Do you have any side effects? It’s a week before my appointment. I’ll report back after that. Thanks for caring x Irene
Thankyou Bon. I do have great support, but not from where I need it the most. It’s not been an easy marriage. I’m only 58. I used to teach, and the kids always had my age at 10 yrs less than what I was! Now I can safely say I have the body of a 70+ yr old?? I’ve persevered with the joint pain as been told I’m on the best treatment, and my lung tumour is shrinking, so I have to cling to that. Now looking forward to a few days alone as husband away, and then a family holiday next week. You take care too x Irene
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