Hello and thank you for your post,

I am sorry to hear you are receiving treatment for non small cell lung Cancer (NSCLC) and that your adrenal glands have shut down.

I have looked to see if there is any clinical guidance about referring someone in your situation to the endocrinology team, and I am afraid to say I cannot find it. However, if this is related to a side effect of the immunotherapy or because the cancer has affected your adrenal glands there is guidance for lung cancer doctors to tell them what to do. I think that a referral may only need to be done if a patient was unwell with adrenal problems and the specialist team looking after them need the advice and input of the endocrinology team.  

I have also looked to see if there is any patient information that might be useful. If this was caused by your immunotherapy (which can sometimes happen) then the information about this from an NHS hospital may be useful to read, you can see it here.

I hope this has been of some help. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday (except bank holidays).

Take care,

Caroline 

Thank you so much [@CRUK Nurse Caroline]‍  for going to the trouble to find this for me, this is very useful and i have downloaded the info to my phone in case i need to educate my Oncologist and Nurses and yes my adrenal gland failure is a side effect of the pembrolizumab and i've been told they won't ever work again so i will be on the hydrocortisone for life.

This is similar to the information i read  except it mentions how much the hydrocortisone needs to be increased by if you are ill which i was.

I was midway through a 2nd week of antibiotics for a nasty chest infection and which i couldn't seem to fight (we all know our own bodies) that's when i called my nurse specialist to see if i had to increase the dosage of hydrocortisone and was categorically told NO. This is why i am becoming increasingly frustrated at the sheer lack of information from my hospital team so this wrong information led me to be on yet another week of stronger antibiotics as well as high dose steroids so my treatment was paused which was completely avoidable.

Sorry for my long reply. Anyway, i phoned my lung nurse earlier and told her how i felt and asked if i was being referred to Endocronology and she can't find anything stating that i will be so she has changed my next nurse led appointment to one with the Oncologist to discuss my concerns so hopefully i will get some proper answers from him.

Thank you again, it's greatly appreciated.

Thank you so much [@CRUK Nurse Caroline]‍  for going to the trouble to find this for me, this is very useful and i have downloaded the info to my phone in case i need to educate my Oncologist and Nurses and yes my adrenal gland failure is a side effect of the pembrolizumab and i've been told they won't ever work again so i will be on the hydrocortisone for life.

This is similar to the information i read  except it mentions how much the hydrocortisone needs to be increased by if you are ill which i was.

I was midway through a 2nd week of antibiotics for a nasty chest infection and which i couldn't seem to fight (we all know our own bodies) that's when i called my nurse specialist to see if i had to increase the dosage of hydrocortisone and was categorically told NO. This is why i am becoming increasingly frustrated at the sheer lack of information from my hospital team so this wrong information led me to be on yet another week of stronger antibiotics as well as high dose steroids so my treatment was paused which was completely avoidable.

Sorry for my long reply. Anyway, i phoned my lung nurse earlier and told her how i felt and asked if i was being referred to Endocronology and she can't find anything stating that i will be so she has changed my next nurse led appointment to one with the Oncologist to discuss my concerns so hopefully i will get some proper answers from him.

Thank you again, it's greatly appreciated.