The miracle continues

March 7, 2019
  • March 7, 2019
  • Living with Cancer Blog

By Roy Vinke

 

Since the start of my treatment with Keytruda in January 2018, my cancer continues to be in remission. It has not been a completely smooth ride along the way though. Complications from a stent surgery, which placed me in the hospital for six days, and various other minor issues relating to drug side effects and my stent have created some hurdles. However, Keytruda continues to do its amazing work, enabling my immune system to attack my pancreatic cancer. I am truly blessed and very thankful daily for this miracle.

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With my renewed health, I have been spending some of my time advocating for other cancer patients. Specifically, I have been advocating for genomic profiling to be available to all cancer patients with solid tumours in order to determine best treatment options (i.e., targeted therapy). For me, it was the discovery of a mismatch repair deficiency (MSH6) that led to my successful treatment with Keytruda (an immunotherapy drug). 

However, genomic profiling was not offered to me in Alberta. I had to send my tumour tissue to a US-based company called Foundation Medicine. Furthermore, Keytruda is not yet approved for mismatch repair deficient tumours in Canada (although it is approved in the states and approved for lung, melanoma and hodgkin’s lymphoma cancer in Canada). Therefore, the drug can only be prescribed off-label for this indication, which ends up being very costly to the patient. Therefore, I am also advocating for the approval of  Keytruda (or similar immunotherapy) for mismatch repair deficient tumours in Canada, regardless of tumour type. 

There are, undoubtedly, many other patients across the country with solid tumours who would benefit from this targeted treatment, in particular colon and endometrial cancer patients. The problem is a lack of awareness about genomic profiling and lack of access to immunotherapy and other drugs for targeted treatment (precision medicine).

As I continue on my journey with pancreatic cancer, I continue to learn about the disease and treatment options.  Some of the most important lessons I have learned are:

  • Get second and third opinions;
  • Have a strong advocacy team;
  • Look to family and friends for support;
  • Seek counseling to help you process your diagnosis;
  • Obtain genomic profiling in the US if you can afford it/tissue is available (but understand the odds are low and that if a targeted treatment is identified it may be hard to get access);
  • If you cannot afford genomic profiling request microsatellite stability (MSI) tumour testing;
  • If MSI testing is not possible, seek genetic testing for lynch syndrome as a last resort for mismatch repair deficient target treatment;
  • Get on palliative care as soon as possible if your diagnosis is terminal;
  • Maintain a positive attitude;
  • Research your diagnosis and treatment options in peer reviewed scientific literature; and
  • Above all never ever give up

10 Responses

  1. Dear Roy,

    That is truly wonderful, I am very happy that you’ve been blessed and are in remission and thank you for your notes of advice. You mentioned getting on palliative care as soon as possible, can you explain this a bit more? I’m not sure why this is important, won’t this become an option as it becomes needed?

    Blessings,

    Laurie

  2. Palliative care is much more that what most of us think it is. It’s not just about your final wishes for end of life treatment. Palliative care is a bunch of amazing people that come to your house weekly and more if needed to review your situation, provide medical information ,advice and support when needed. They have immediate access to doctors to get you answers before they leave your house. They take your vitals every visit ,can set up hydration in house for you, and have a broad knowledge of most health concerns. They saved my life twice when they visited and they accessed that I needed to go to hospital immediately. Also they have what’s called a green sleeve folder they give you. This has all your medical information, your resuscitation wishes and all visit history in it. It is simply a green folder that is placed on top of your fridge, so that if an emergency occurs the paramedics and other palliative care individuals know your history and can treat you according. All paramedics are aware of the green sleve and that is always on top of the fridge . Tks

  3. Hi Ron,

    Thank you for your post – this is so very helpful. My husband is 39 years old and was diagnosed with secondary esophageal cancer in September 2018. My husband sent his tumour sample to Foundation One, and the PDL-1 indicators confirmed positive – an indication that immunotherapy

    would be an option. His oncologist has thus suggested immunotherapy (specifically Keytruda) as a second line treatment. Unfortunately, we have also been told that this would be an out of pocket expense (at $9000 per dose!) AHS denied the appeals stating that the drug is only considered as treatment for lung and melanoma cancers. We have applied to the drug company for compassionate consideration & our insurance companies, but both have rejected our request. How were you able to get the remaining rounds funded or is there anything else we can do? Any tips would be helpful. Thank you in advance!

    My husband and I are encouraged to hear that you are in remission and that Keytruda has been good to you!

    All the best,

    Caroline

  4. In our case we went ahead and started Keytruda and indicated to our ongologist that we would be willing to pay for it. After four treatments my tumor was mostly gone. Based on the results , our ongologist applied for director privileges and was able to get the province to pay for all the remaining treatments . My advice is to do the same, start treatment asap as time is of importance . As he has the correct mismatch repair deficiencies he is a good candidate for keytruda. Your ongologist also has director privileges available. If your ongologist cant , then get one that will. We went through three ongologist until we found one that would fight on our behalf. Hope this helps.

  5. Hello Roy,

    I’ve come across your amazing story on Let’s Win Pancreatic Cancer. My mother Rosanna was diagnosed with Stage 4 Pancreatic Cancer in Dec.2020 (mets to lungs). She is in Ontario, CANADA. We had her pancreatic tumour tissue sent for genomic testing in the USA via PANCAN. One of the results in the report shows a MSH6 variant (C.3557-4dup) or NM_000179. It’s listed as a variant of unknown significance in the report. However, I do understand that MSH6 is one of the genes involved with MMR. Would this be considered a MMR deficiency? Do you know the specs of your MSH6 variant? I want to make sure that we haven’t missed out on a potentially powerful treatment option for her. Any info you could provide is greatly appreciated! Paul.

  6. Hello Roy,

    Really enjoyed hearing your story. I am in the same boat and was wondering how you are doing and if we can connect for a further discussion?

    Thanks

    Brad

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