kissing rucaparib goodbye…

photo of me on a slippery slide at GOMA
On the slippery slide again (GOMA)

Happy New Year and Best wishes!
For me it’s not such a good start to the year because my rucaparib days are over  😦

Christmas and Woodford were lovely although I was quite sore. Also the hot summer has been challenging, hasn’t it!

My scan and routine check-up were 3 weeks’ ago and when I complained about aches and pains the doctors floored me with bad news that rucaparib seems to have stopped working for me (they could see in my latest CT scan), so it is time to change tack.

I started the rucaparib trial (October 2015) with a few tiny abdominal lymph tumours that were growing and causing me pain. On the drug I felt better very soon, and for over a year the scan reports came back “cancer stable” which means not growing. The tumours didn’t actually go away, though.

In the last 2 months one pesky lump significantly increased in size from 34 to 39mm. Although still small, it is in a bad position and causing problems. Now we realise that this lump must have been squashing my ureter and blocking my kidney at Christmas time. (Different story now to what I said in my previous post before we saw a scan.) The tumour is pressing on my left psoas muscle which fans out from lower spine to pelvis. The psoas has many nerves on the surface and this explains my lower back and hip pain which they say is likely to worsen if not treated.

I had no choice but to leave the trial. With tumours growing, I’m disqualified. The cancer has possibly developed a resistance to this drug, or for some other reason it is no longer keeping the cancer in check. They can’t ethically continue to supply an unproven drug that is not helping me.tears4

I am so very disappointed to conclude this magical time of feeling well and enjoying minimal treatment!
I was like a Mater guinea pig on loan to the Royal Brisbane Women’s Hospital for the duration of the clinical trial. Now I have returned to my original team of specialists at the Mater, after fond farewells to my new allies at the RBWH.

What to do now?
Measurements are always rather approximate because these blobs are not neat spheres, but it looks like the other little tumours are not growing. And what a surprise, this single troublemaker might be accessible for radiation therapy. It will be a first for me, as I’ve never tried radiation. I am waiting for an appointment to hear all about it.

I surpassed all expectations by benefiting from rucaparib for all of 16 months. This places me in my 3rd year since last chemo, which is a great advantage going forward because a longer gap increases the chance that platinum drugs will be effective again in future. I am relieved that I don’t have to take chemo now. Radiation is a welcome alternative.

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12 thoughts on “kissing rucaparib goodbye…”

  1. It was lovely to see you at Woodford and glad you were able to enjoy the music and other events before having your scan. Wishing you the best of luck with radiation treatment. Thinking of you.

  2. Hi Alison
    awww! why couldn’t the rucaparib relationship go on forever? how do you make radiation treatment sound like a nice holiday? That’s it, I am never complaining about anything in my blessed life again, not even having to learn new stuff on the computer! all the best Alison and thanks so much for continuing to inspire all of us. Cheers Jodie Eden

  3. Ah Alison, you still sound so positive when most would be want to kick something. One door closes & another will open. Your awesome attitude will keep you knocking these tumours off their tracks. Stay strong, will you all the way. Love & hugs Gina

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