Marg is a biologist in Australia who has devoted her life to seabird research and rehabilitation. But everything changed when she was diagnosed with stage 4 Renal Cell Carcinoma (RCC).
Hi all, my name is Marg Healy, I was born in Kenya, grew up in Sierra Leone and am now an Australian biologist. I’m 63 years old and about to celebrate (?) 3 years with stage 4 Renal Cell Carcinoma (RCC) with exclusively 15 bone mets. This is my story.
In 2014 I started getting bad pain in my back or my rib or my pelvis. It came and went. I went to many doctors who, with no examination, diagnosed me with arthritis because I was 57 and had worked in a physical job for many years (penguin field research and manager of seabird rehab facility.)
Finally, in excruciating pain in my lower back, I found a doc who thought I had ruptured discs and ordered a ct scan. The ct showed a 9cm tumour in my sacrum and at top of image, “something* on my kidney. I was rushed into hospital with useless doc’s thinking I was about to be paralysed (lesion was too low in spine for paralysis!!!) Anyway, after 10 horrible days in hospital, a needle biopsy of sacral tumour and 5 useless doses of low dose radiation, pathology came back as clear cell RCC. I’d had chest abdo pelvis ct plus MRI spine and which showed 15 bone mets plus a “suspect” para aortal node (which was never noted again) and a 6.6cm tumour on right kidney. I was deemed “too far gone to bother with nephrectomy” even though I now know I was a good candidate for a partial.
I was given sutent and sent home. For 10 months I dealt with an arrogant foolish oncologist who hated that I was researching my condition and starting to self advocate. At 10 months, 2 of my upper vertebral masses started being symptomatic and the large right rib 7 mass became painful again. My oncologist refused to do anything new so I began a search for a modern advanced skilled radiation oncologist after getting advice from Susan P., a nuclear physicist in the SmartPatients community.
I struggled to find anyone in Australia who was doing high dose Stereotactic Body Radiation Therapy (SBRT) (it is well known that RCC is radio-resistant). Finally, while debating with a nice young private radiation oncologist, I lucked in. She had refused me my high dose but then gone home that night and thought about me. The next morning she called me and suggested I speak with her original mentor who was keen to bring radiation into the 21st century in Australia. He was considered a maverick. Through him, I received good high doses to C7-T2, right rib 7 and slightly lower dose to sacrum (which had already been irresponsibly radiated at dx). All of my symptoms disappeared except sadly, I experienced excruciating neuropathic pain to rib (a rare side effect of sbrt). I can’t metabolize opiates so this was a problem.
During this time, I lived alone with my lovely old Dane Cross Harley. I’m not a people person and am happiest in my own company so this new way of living, self advocating, fighting, dealing with people was hard.
I had searched out a new oncologist who had some experience with RCC. Then I started searching for clinical trials. I was surprised to learn my oncologist was lead researcher for the CANTATA trial. (CB839/placebo/cabozantinib). I had intended to move to Cabo anyway, so this suited me well. The trial was good in that scans, pathology, appointments and meds were all organised by lovely trial nurses.
The actual trial was a bit tedious because I had to wake at 5.30 am, drink a breakfast drink and take the trial drug/placebo then eat at 5.30 pm. and take drug again, then wait 2 hours and take Cabo. This I did for 22 months through emergency rooms, multiple hospitals and rehab facilities never missing a pill. The trial sadly ended with a whimper not a bang. One day I read a worldwide press release on a social media that the CANTATA trial was a dud. I instantly contacted my team who had not been notified! I was angry. I also found out that I had been dispensed the wrong option (cb739/placebo) for at least 2 months during the trial, essentially making my contribution null and void (I now wonder how many others got the wrong drugs too!?) I was angrier! The trial was then unblinded and I was on the placebo so I continue on with Cabo working nicely so far. (At trial start I had over 20% shrinkage in 4 target mets and then stable disease for almost 18 months).
During the trial, my rib pain was close to unbearable so I searched out pain specialists and trialled multiple drugs. Nothing worked. I then was offered an intercostal nerve block – a day surgery where under twilight anaesthetic, ct guided, doctor injects caustic phenol onto nerve crown where it eats away at nerve sheath and turns nerve off. I took this option. The only risk I was told was pneumothorax (punctured lung). Unfortunately, the doctor punctured my spinal cord with the needle and injected the phenol onto spinal cord and into artery. My BP plummeted and I was paralysed. I spent 10 months in a rehab facility trying to walk. But I have a huge band of neuropathic pain around my torso and my right leg does not work and left is weak so I’m permanently in a wheelchair. Even sadder was 2 weeks before I made it home, I had to euthanise my loyal dog who I had deserted all those months ago. Luckily for him, a friend had moved into my house and lived with him and loved him while I was away but I’ll never give myself for leaving him….
So now I live quietly alone, proud of what I have done with my life, doing physiotherapy 3 times per week, trying to laugh at everything and anything. Luckily I love black humour and enjoy shocking the medical fraternity with awful jokes about pain, death and dying. If you didn’t laugh you’d cry…right!?
Final advice?….if you smoke, give up now….today…..forever.
