Coping Better than Average

I’m going well with the chemo. For the first few days I had some of the predicted symptoms, mainly constipation and a bit of nausea, with a night of diarrhoea thrown in for variety. However, none of it has stopped me – just slowed me down. I have been determined to go for a walk each day including hills, and often running up the hills (sometimes backwards). I am very happy that I have still managed all of this, even on my queasy days, especially after dire warnings from some of the nurses and other patients. I seem to be coping better than average again. I like to imagine that walking and getting my heart pumping is part of the reason that the chemo hasn’t been debilitating for me, but maybe it’s only that I’m a couple of decades younger than the other patients I’ve met. Anyway, I’m making the most of feeling ok, and yesterday we flew to Sydney to stay a week with Helen and Mum.

On Wednesday I had my second dose of the trial drug – this time on its own without chemo. There shouldn’t be any side effects from taking this antibody, nor from placebo.

I still have my hair and I still have those lumps in the groin. Watch this space!

I found out last week that the tumours I have this time are really tiny and impossible to see with untrained eyes looking at the X-ray images. The lumps I can feel in my groin are not the tumours but actually the lymph nodes, swollen in reaction to the cancer. The cancer in my right groin was too small to measure with the CT scan, despite a lump the same as my left. The X-rays revealed only 4 tumours: 1 in left groin, 2 in right pelvic area and 1 near my left aorta. The sizes were 20, 25, 19 and 24mm. This doesn’t sound so miniscule to me, but the doctor emphasised it is “tiny”. However, if left alone, they would grow and press on my lymph and veins, obstructing flow and causing problems, and also the cancer would spread elsewhere.

This is a common pathway for ovarian cancer recurrence, first tumours growing in the lymph because the rogue cells can travel via the lymph system. If not treated (perhaps undetected), next the cancer spreads from the lymph to the peritoneal cavity or organs contained within. It is then that the proliferation of cancer cells includes producing the type that secretes the protein detected by the CA125 blood test. This is why the most likely first warning sign for oc recurrence is a rise in CA125. After this worrying result, scans would probably reveal a tumour in the bowel or somewhere. An alternate pathway would be the cancer spreading directly via the bloodstream, and again rising CA125 probably is the first hint.

So in my case it is fortunate that I happened to have that lymph reaction to alert me, and also excellent that the skilful radiologist in Melbourne hit a bullseye with the biopsy needle – such a small target! Thanks to this chain of events, we are zapping the invasion early, and my intestines are spared this time. Phew! (Off stage: singing is heard coming from the bathroom!)

On the other hand, a bigger gap before repeating chemo would have been advantageous because of the problem of eventual platinum resistance, ie the platinum-based drugs eventually become less effective as an option for future treatments. There are non-platinum options but they’re not as good.

This is where my hopes for the antibody research trial come in.

Good question, Debbie, when will I find out if I’m on the active drug or placebo? I think worst case scenario is if the cancer comes back, that would mean either I’m having the placebo, or that the trial drug is not very good after all. The trial goes for about another couple of years till all the data are in and conclusions drawn. At that stage the world will hear whether or not Farletzumab is effective, and then the researchers will tell me what’s in the bag. We guinea pigs have the support of an ethics committee who won’t allow the drug company to cut off supply while there’s any chance that the new treatment is beneficial, even after the trial is finished. Did I mention I love the way this all makes me feel hopeful?

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