Pituitary tumour now grown into brain

Hi ffeebbzz and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily spotted.

I've searched the group for any previous posts which mention the word 'brain' in them and found these for you to have a look through. Hopefully you might find someone who has posted about a similar issue.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi, I was diagnosed with a macroadenoma a year go

Hi, newly joined. I have a tumor which is around my carotid vein but not into my brain. Apologies i have experience of Cabergoline meds etc but not yet radiotherapy. Definitely experiencing emotional affects, memory etc

Hi I’m sorry to hear that. Do you want to share how it’s affecting you? 

Hi JCPro thank you for replying. I’m sorry you’re going through this. I’m a year on from my post and recovered somewhat from the radiotherapy and steroids but the fatigue is still quite bad. I hope your tumour is being controlled by your meds so you don’t need RT. 

So sorry to hear the fatigue has not improved. Shortly before being diagnosed I noticed a reduction in energy levels as i could not finish my usual workout set. Once I began meds in May and initially was taking them anytime in the day and immediately felt intensely tired the following day after taking medication. I can usually do a drive from London to Manchester easily and I struggled to do an hour. After a few weeks I linked increased tiredness to the medication. In addition, I was extremely emptional and not having any real reason for feeling emotional. At this point I was certain it was medication related and set about reducing that affect. I took the medication at night which saw the biggest change. I have recently been making sure I eat with the tablet also. In terms of affects the biggest is just the inability to plan. I have opportunities to work abroad and I would love a second baby but I can not commit to either because I just dont have a clear picture on reduction and when my life can start again or if it ever will. Doctors have said pregnancy will risk increase in prolactin and growth in tumor. So really I am just in a stagnant place but grateful I am alive and functioning fairly well.