Cortisol hormone levels

Hi everyone 

I'm a kidney cancer patient stage 4 n1m1 with a stable 5cm carcinoma ,had 4 cycles of immunotherapy stopped in feb 21 due to multiple side effects  and multiple infections ,with giving my body a chance to recover ,4 months ,I now find I have low cortisol levels as my adrenal gland has shut down ,never heard of this in all the forums ,is there anyone out there in a similar predicament ,as my energy levels hit a all time low ,a hormone replacement has been given to me as well as oxycodone for pain management ,attending a palliative  care hospice which is great  but where am I going from here 

ct scan results on the 12/ 7 with consultant oncologist ,got a few questions for them 

Any help 

Brian 

  • Hi I have what is known as Addison's desease its when the adrenal glands don't work, I'm on hydrocortisone steroids and fludrocortisone then calcium and vitamin D  because Addisons can stop bones keeping strong, (osteoporosis) you don't say if Both adrenal glands or one have stopped. Without these glands the body starts to shut down hence lack of energy, I quite often had sickness for no reason, have the lines inside your hands gone dark+any scar's that is a sign of If I can help with any details just reply I was diagnosed Feb 2006. 

    I also have prostate cancer gone to lymph nodes spine ribs pelvis and a lung I was diagnosed Feb 2016. T3B N1 M1B stage 4  palative care. I look after my disabled wife she has Alzheimer's and Parkinson's plus other problems.

    Im keeping positive and fighting.

    Billy

  • Hi Billy 

    Its early days for me after 4 cycles of immunotherapy  but now it has been stopped  ,just started on hydrocortisone  and waiting for synacthen test and waiting for results of my last ct scan .it has moved to a lymph node and vena cava ,don't know if it is affecting both glands yet ,strangely enough I am also a carer for my mother with dementia 

    I am a very positive type of guy ,who has not been driven to the depths  of despair , yet ,although  I seemed to have lived in CDU over the last few months ,and I find the staff lift your spirits every time I go in  and another appointment tomorrow  with the oncologist with no apprehension about any results 

    brian

  • Well had my CT scan results ,not great news ,slight increase in kidney carcinoma ,the other 2 are stable ,my condition is so weak  and vulnerable ,they have suspended any treatment for 3 months to see if my body can recover and maybe the immunotherapy will finally stop destroying the organs in my body ,the main problem is the adrenalin glands  are not working and causing all kinds of problems with my energy levels ,so Im back in limbo land ,no treatment ,no energy and chances the cancer is not under control and will start to increase or move ,got some time  now to have a break away from all this madness .
    I do hope you are having better days than myself

    Brian

  • Hi Brian sorry not getting back sooner been trying to catch up with housework and garden,can only do a bit at a time lately,hot weather really drains me.        Once steroids get into your system properly you should feel alot better, Addison's really drains you till  your body gets going properly again.

    Good luck.

    Billy

  • Had my synatchen test showing slight function in the adrenal gland ,but not enough to stop tablets ,will have to continue with hydrocortisone,another test in 6 weeks ,at least there is some hope of it recovering ,if that is possible. palliative  care have got my pain under control at last and worked in the garden for 20 mins but then had to rest for a few hours ,not bad considering the heat as well ,unfortunately another infection ,doubled up on the hydrocortisone which had some relief ,it's really strange it's as if I know when the infection or inflammation is about to start as I have itchiness rash comes up and mouth sores and the nurses say increase your hydrocortisone to control the side effects which has worked for me unfortunately there is always something else ie constipation ,a few senna tablets and away it goes ,as you have said energy levels do increase ,if only slowly but I am getting there wherever there is 

    brian

  • Now the end of September after more synatchen test and CT scan ,incredibly my cancer is stable after two periods of increase , Dr says immunotherapy is still working to activate my own immune system and controlling the cancer , only slight function in the adrenal gland leading to staying on hydrocortisone tablets for the foreseeable , 3 months till my next tests ,but quite upbeat about outcome ,time for a break from caring for my mum and my first holiday in 3 years ,

    a good news day 

  • Hi really glad you have got some adrenal gland function,even a bit is good it means the body is trying to get things right especially with cancer stopping.

    Glad you can get a holiday and relax for a while  it really helps you to unwind.

    Take care keep positive.

    Billy.

    Ps im being messed about with my meds as oncologist and endocrinologist try to get my blood pressure up to normal , as im struggling with low BP and no energy.keeping positive though .