Updates from International Kidney Cancer Coalition conference 2013


Dear Kidney Cancer Canada followers and friends,

Happy to be back in Canada and to report back on the recent International Kidney Cancer Coalition (IKCC) conference.  This 3rd global conference for organizations supporting kidney cancer patients was held in London England from April 11-13 2013. Kidney Cancer Canada was represented by Deb Maskens (Chair), Nicole Giroux (Director for Quebec). Dr. Michael Jewett of the Kidney Cancer Research Network of Canada (KCRNC) also attended as a guest speaker and participant.

Delegates to the conference included kidney cancer patient advocates from all over the world – from Brazil, Australia, U.K., U.S., France, Germany, the Netherlands, Ukraine, Poland, Ghana, South Africa, Nigeria, India, and I hope I haven’t forgotten anybody!

What’s Changing in Approaches to Kidney Cancer?

  • The German Kidney Cancer Organization, Das Lebenshaus, moderated a very interesting session entitled “Localised Treatment for Bone and Brain Metastasis in Kidney Cancer”. Dr. Roland Durr’s experience suggests that 30% of mrcc patients will experience at least one bone metastasis in the course of their journey. Rather than palliative treatment (often radiation), Dr. Durr advocated for a new philosophy: for patients and oncologist to first investigate any available option for bone re-section (surgery). (Likely involving a visit to an orthopedic oncologist with the goal of removing the bone lesion completely.)
  • Dr. Shyam Shrivastava from India addressed the prevalence of brain metastasis in mrcc patients (under 10%) but focused on changing paradigms for localized treatment focusing on SRS (Stereotactic Radio Surgery) also known as cyberknife or gamma knife. In the past, many patients underwent WBR (whole brain radiation) which can be associated with significant cognitive loss. Overall theme of his talk was to “save the cognition” – and as patients, we couldn’t agree more. One delegate to the conference (Clive Stone from UK) indicated that he had had cyberknife to treat 23 brain tumours so far… and Clive certainly had no problems with cognition!)


How Can We Achieve Consistent, High-Quality Care across Borders?

From The Netherlands, Dr. Rachel Giles led a thought-provoking session called “Kidney Cancer Guidelines” from Around the World

  • In Canada, our national consensus guidelines are published by the Canadian Urological Association (and also posted on our KCC website). Dr. Michael Jewett from Toronto spoke of our collaborative effort by kidney cancer experts and survivors (hey, that’s us!) to document the current state-of-the-art, evidence-based clinical guidelines.
  • Dr. Borje Lungberg from Sweden discussed the European guidelines (EAU) process and most recent guideline for the treatment of kidney cancer (March 2013). Some key differences noted from our Canadian guideline:
  1. Sorafenib (Nexavar) is listed as one of 3 possible 2nd-line drugs (others being axitinib (Inlyta) or everolimus (Afinitor). Hmmm. In Canada, sorafenib is only approved after a cytokine therapy such as interferon or interleukin… in Europe they see the data differently? 
  2. The European guideline lists a 3rd line treatment option (everolimus (Afinitor)). The Canadian guideline currently lists no 3rd line option. (Again, the same international trials are being interpreted differently in different parts of the world.)
  • Key discussions centred on how patients in all countries can best use national guidelines to advocate for the best quality care both for treatment decisions and for follow-up post nephrectomy. At very minimum, Canadian patients should be aware of the national and provincial guidelines for their stage and type of kidney cancer. 


What’s New and Innovative in Treatments and Disease Management?

Several conference sessions focused on the future of kidney cancer treatment:

  • Dr. Charles Swanton (UK) discussed the heterogeneity of kidney cancer tumours. (Translation: that kidney cancer is very diverse, even within the same person. Different sites of activity may respond to different pathways, so may need different drugs. We cannot assume that the kidney cancer matches that in the original primary tumour, especially if significant time has passed for mutations to occur.) Dr. Swanton concluded that “to make progress, we need tumour material… we’re going to need more biopsy material, taken more frequently” through clinical trials. 
  • Seems that Charles Darwin was right: that, over time, some cells evolve to be much stronger. One very positive thought was that tumour diversity might just be the “Achilles heel” of cancer – that an additional mutation might just be enough to trigger the body’s immune system to recognize something new and fight it.


New agents?

Dr. Janice Dutcher (USA) spoke about the future of targeted therapy, touching on new agents such as tivozanib, dovitinib, and cabozantinib, along with promising new immunologic agents such as nivolumumab and others.

In the pipeline:

  • Cabozantinib (XL 184) – anti-VEGFR and anti-MET (includes responses in bone metastases)
  • Tivozanib – 1st line; anti-VEGFR; currently before FDA in U.S.; awaiting decision
  • Dovitinib – 3rd line; anti-VEGFR; hoping for published results later in 2013
  • Lenvatinib – anti VEGR, PGFR 1-4, multiple pathways
  • Combination trials (TKIs and immunotherapy).

Immunotherapy agents are very much back in discussion. The role of body’s immune system in fighting kidney cancer (and melanoma) has been well established. We have seen complete responses after interferon, interleukin-2 therapy lasting years and decades – explanation? How can we make this mode of therapy applicable to more patients?

New agents (Anti-PD1, such as nivolumumab) hold promise. Do not appear to be as toxic as previous agents and appears to have a durable clinical benefit – awaiting long-term results and ongoing trials. Anti-CTLA-4 (ipilimumab) is approved for melanoma in Canada and now in some trials for mrcc. Involves more toxicity than anti-PD1 but showed 30% response rates in those who experienced significant auto-immune toxicity effects.

Closing statements: these are exciting times in treatment of RCC. There are many options – but currently the hard work is fitting them together, sequencing, reducing the toxicity,and exploring combinations to prolong survival. We really need to encourage patients to join clinical trials whenever possible so that we can answer these questions.

We need to continue striving for long-term benefit – from both new targeted therapies and new immunotherapies.

Best quote from Dr. Dutcher: “The Name of the Game is Staying in the Game!”

 Hope this has been helpful!


  • For more information about the conference, see the website ikcc.org
  • The official conference report will be posted on that website when available.

Participation in the International Kidney Cancer Coalition meeting is funded by IKCC (ikcc.org) with grants provided by Bayer, GSK, Novartis and Pfizer at the global level.


3 thoughts on “Updates from International Kidney Cancer Coalition conference 2013

  1. Dear Blogger. I think we know who u r and u r one very special person to pass on this exciting and useful information. Thank you very very much and we hope that we along with all kidney cancer patients see the fruits of the tremendous work being done currently and in the coming months and years. Sincerely Maureen Katz

  2. It is really exciting to see the range of possible treatments and the creativity in the use and timing of the various therapies. Now if we can only get the less-experienced doctors to utilize the information that is now available, before the patient is in dire circumstances.

  3. Hi – I have advanced KC & just had another 8 brain tumours treated last week by Gamma Knife in Sheffield England. That’s 31 brain tumours treated in 3 years. It been a fight but now we have won free access on the NHS. All the best to all wherever you are.

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