Showing posts from June, 2018


Sorry for the lack of update - lots of appointments, the world's quickest house hunt and plenty of thinking being done over the past week! The biopsy confirmed ACC and therefore the chemo regime is still EDP (etoposide, cisplatin and doxorubicin) plus mitotane. After weighing up the pros and cons I've signed on the dotted line and start on Monday. The cycle is 4 days of IV on a 4 week cycle. It's 2-3 hours as an outpatient on Monday and Tuesday and then longer days of about 6 hours on Wednesday and Thursday. I may end up staying as an inpatient on those days depending on how generous the insurance company is feeling. Mitotane is taken as a pill a few times a day. The plan is to do 2 cycles and then do a scan to see how effective the chemo is on reducing the size of the tumour, and then deciding on whether to continue it (for a maximum of 6 cycles) or look at other options. Apparently the days I'm receiving the chemo I will not feel too bad due to it not yet hitting

Biopsy done

Was quick and pretty painless, 20 minutes in and out. To protect the wound they make you lie flat on your back for 2 hours followed by another 2 hours of general monitoring so boredom is today's main issue. They came round with a menu and I have a 3 course meal to look forward to later so that's something. Hopefully it will be tasty enough to counter the indignity of wearing net underwear and full length stockings. Results should be back by next Wednesday for my appointment with the oncologist, who I also caught up with today. I should be starting chemo on the following Monday (25th). Assuming the biopsy confirms that it is ACC, the proposed chemo structure is 4 days of chemo (4 different drugs) on a 4 week cycle, initially lasting for 3 months. There's also a 'chemo pill' that I would take every day. The doctor told me (with a bit too much glee) that it was a pretty brutal routine in terms of amount of drugs and potential side effects, but everyone's differen

Tuesday 12th June

Quick update - Biopsy arranged for tomorrow. The procure is local anesthetic /sedation, they stick a needle in my side, lasts maybe an hour or so. I'm then kept in hospital for a few hours for monitoring and out later that day. Think I'll be tender for a day or two but other than that it's fine. They havn't given an indication of how long until I get the results, I will ask tomorrow. Once I get results I will speak to the oncologist to sort out proposed treatment. Hopefully it should start in the next 2 week. Thanks again for all the messages of support. I hope your weeks are all going well! ED

First Update - Friday 8th June

Hello... so I've told quite a few people now about my diagnosis and it goes without saying how much I appreciate the support and love I've had from everyone, but always worth repeating anyway. It really means a lot to me :)  I'm receiving a lot of messages from people asking about what's happening and when my next appointments are so I decided its easier to just update one page than to send out messages to a lot of different people. (The lessons I've learnt from books about effective work/time management are finally being put to good use.) I will use this page to update on results and pending appointments.  The current situation is -  The tumour is likely to be on my adrenal gland, and is also impacting my kidney and liver (and metasised to the lungs) . Because of this, they have decided to rule out surgery (for now) as the recovery could be too long after such a major surgery and they think that they need to start chemotherapy.  Before they decide on the best