BULLETIN AND BIT OF BACKLOG - 25 APRIL 2023

 Haven't written here in months - last year was pretty gruelling and required a long emergence perioid. The unfinished spiel at the bottom is something I drafted mid September. After that, I think any energetic moments had to be portioned out to high priority activities. Writing now mostly to publicise my consultant's above-and-beyond efforts - see below. 🏃

Looking back briefly: the end of treatment scan (Oct 22) showed the chemo had worked. The 3-month scan (Jan 23) showed the 'main' tumour had shrunk further although the Ca125 had goneup from 8 to 28. Ca125's now 175 despite the CT scan showing nothing remarkable going on in my pelvis. But there are some newly enlarged (albeit still small) para-aortic lymph nodes, which are  associated with ovarian and some other metastases: https://radiopaedia.org/articles/para-aortic-lymph-nodes-2?lang=gb#:~:text=Para%2Daortic%20lymph%20nodes%20(often,the%20cisterna%20chyli%202%2D4. ) 

So, to provide more info, I'm to get a whole-body PET scan in Nuclear Medicine to see if there's active malignancy that would better explain the jump in Ca 125. In the meantime, am feeling relatively normal, so life goes on - yippee!

***********Dr M usually wears heels and looks very stylish in flared dresses and suchlike. Today I did notice that she was wearing flat, elastic-sided Chelsea boots that looked like they came from another Dr M. Comfy, I'd say; also very stylish with the flared dress. As she was escorting me out to reception, she said she had run the Marathon at the weekend, for Ovacome, in an ovary suit (!) and that was why she could hardly walk - I hadn't noticed that. Well done, Dr M! 

So - if you happen to have more money than you need, and feel it would be a good use, you might consider making a donation under her name https://www.ovacome.org.uk/fundraisers/help-rowan-to-make-a-difference-to-those-affected-by-ovarian-cancer *********

CARBOPLATIN + GEMCITABINE CHEMO - CYCLE 5 DAY 8 - GEMCITABINE ONLY - 15 SEPTEMBER 2022

Didn't check in a week ago - I'm so bored of this regime I'm afeared of boring loyal readers too. 

Clinic before the carboplatin and gemcitabine combo last week was with the gynae oncology Clinical Nurse Specialist for a change. Nice - I hadn't seen  her for a while and it gave licence to talk for a bit longer. Her time is probably just as precious as the consultant's but doesn't cost as much. We went into some depth over the question of surgery for what I have managed to perceive as a 'main tumour' - the one in the Pouch of Douglas. I didn't really expect there to be any appetite for trying to remove it despite its having shrunk, as it's probably too entwined with necessary anatomy. But I still needed to address the possibility. Indeed, there was no appetite, but for a different reason than I had expected - there are more nodes of disease around than I had been aware of. This partly because I had never properly seen the report of the scan done just before the stoma surgery when things were at their worst, only hearing about the immediately problematic focus and at a time when I was probably not very receptive. So chemo, which reaches all the bits of disease to some degree is still the only way to go. 

She gave me a copy of that scan report, and we talked about the road map ahead. I'm on the last 'standard' chemo treatment and there's no maintenance treatment available at the end of it. It's possible that another trial could appear over the horizon and being Dr Miller's patient at UCLH is the place to be should one hove into view. But otherwise, it's a matter of waiting to see how long it takes to start growing again, and this would probably be done by Ca125 bood tests in the first instance rather than regular scans. If/when it does return, there are a number of possible chemo lines to go down next - paclitaxel (hair loss), carboplatin (seems to still be working for me), ....... There's no standard route though and it depends very much on your consultant's preferece. I can envisage a tough decision at this point, based perhaps on which offers the least miserable existence. 

We also talked about the state of my veins which is deteriorating. every treatmennt leaves an upstream bruise and lump now and my right arm, which usually provides a more readily accessible vein, is becoming painful ground. I ask for infusions set for 30 minutes to be extended to an hour to prevent acute pain upstream. I'm told this probably happens due to veins going into spasm rather than a direct effect of poison on their walls.