Bombshell ahead – so please sit down before reading

I will start chemo soon and possibly also join in a drug trial at the same time. It is the trial of an antibody that could help to delay the return of the cancer in future. I would have this treatment in Brisbane again, but the drug trial involves attending the hospital for a short time once per week. It seems like the only way to do this is to stay down here most of the time, so we are starting to look for a house-sit or a place to call “home” in SE Queensland for at least the next 6 months. Does anyone know of such a place?

Chemotherapy is recommended for me at this stage since surgery is out of the question for the little lumps I have, mainly because there are a few of them deeper inside. They are at the lymph nodes near the veins in my pelvis and around my aorta (heart), and the surgeon can’t get at them. I will have much the same chemo mixture as last time, carboplatin plus paclitaxol. Actually I had cisplatin last time, and carboplatin is a milder version that’s easier to tolerate. These platinum-based toxins worked well on me before, so we expect over the next 6 months the tumours will shrink and disappear. I will have regular CT scans to watch the lumps go away.

CA125 in the blood may not be a useful indicator for me this time because the lumps might be a cancer cell type that doesn’t secrete that handy protein detected by the test. (What I wrote in my last entry about CA125 is possibly not quite right.)

The chemo will involve just one day of intravenous medicine, every 3 weeks for 6 cycles. They reckon Day 1 is a long busy day (6+ hours of IV plus other appointments), Day 2 feeling good, Days 3-4 possible side effects eg lethargy, nausea, aches & pains, then probably OK for the rest of the cycle. Lose hair about 2½ weeks after the first dose.

I've also been invited to be in the trial of a new antibody treatment, Farletuzumab. It is quite a different strategy to the anti-angiogenesis approach we looked at last year (Pazopenib). It is an immune thing, specifically attacking ovarian cancer cells only (won’t hurt any other cells). It recognises a receptor on the surface of oc cells.

This is a promising new treatment and the only way to access it is by joining the study. Previous tests of it gave good results which is why it has got to this stage – a phase 3 trial with 1200 women around the world to finalise whether it really makes a significant difference and if so, what dose. It is a “maintenance” treatment, taken at the same time as chemo and also continuing afterwards. It should help remove the lumps I have, and also attack any future cancer that tries to pop up. There is a list of possible side effects they have to tell me, but they don’t look very scary and the doctors said these are ‘worst case scenario’.

If I join the trial there’s a 66% chance I’d get the active drug because they have 3 groups, high dose, low dose and placebo (double blind , ie neither I nor the doctor would know which group I’m in). Therefore I could potentially be signing up for weekly doses of nothing (IV saline) for an indefinite period. I can change my mind at any time, though, and drop out of the study if I want.

The trial involves a short weekly dose (about 1/2 hour intravenous) plus there’d be more tests and scans fairly often. The trial would be for maybe a couple of years and it can’t be done in Cairns. There's the catch! I’d have to go to the Brisbane Mater once a week, although they said later I can probably have a week off now and then for a ‘holiday’. Also, I would have to stick with the Mater for now because they couldn’t send the farletuzumab to another place, say if I wanted to have a trip away and get my dose while there. It's because of the rules of the random trial, so no one finds out which group I'm in.

The doctors say it is not really urgent to start the treatment, like not tomorrow. They suggested we read and think about it and talk it over. I would probably start in a couple of weeks’ time.

I feel very hopeful about all of this and pretty keen to join in the trial. John and I have been thinking about it for a couple of days and reading wads of information. So far I haven't actually had any doubts about it, despite the sudden upheaval and practical difficulties involved with staying here for a while. I know I will miss the community and friends I love at our lakeside home on the beautiful Tablelands. Please don't doubt for a moment that you will continue to be in my heart! I mean, this is so sudden, it may seem to be a rash reaction, but I love the way this trial makes me feel so hopeful. All I can do at this stage is decide to enjoy what each day brings and trust it will work out for the best. John is terrific, as usual, and we are in agreement about what to do, although I think you can see we don't have any concrete plans yet. It is more going with the flow… From time to time we have wondered what it would be like living on the Sunshine Coast, so this could be our chance to try it. I really will have to get back into tree-planting because of my carbon-footprint, thinking of all the flying I'd love to do – especially home for a week when I can!

When we looked at possible start dates with the oncologist, I mentioned all the family celebrations I had hoped to attend in the next little while. We have important birthdays at this time of year, and even Auntie Marion and Uncle Peter's Diamond Wedding Anniversary coming up! The kind specialist tried to plan for me to not only be there but also even have hair on my head for some of the events. However, hair seems a very minor detail, and perhaps Helen is right when she said, “Knowing you Mum, you'll probably have more fun in your blue wig!”

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