Welcome to our 'Hopeful Spot'

Dear Family and Friends,

We look forward to sharing Ian's medical progress and our family's journey with all of you.

This is where we will do our best to keep you up to date on Ian's medical condition. This is how the story started:

In August, 2007, Ian developed what started out like an itchy fly bite on his right shoulder. Within two weeks it was about 8 mm in diameter, raised, red and extremely itchy. It was excised, and found to be a "stage IIB malignant melanoma". This was followed by a wide excision down to muscle, skin grafting, and what is called a sentinel node dissection. Radioactive material is injected in the original site, and all lymph nodes that accumulate the material are removed, presumably the lymph nodes that drain the original tumour.

As this tumour had aggressive features, the risk of recurrence was estimated at 30%. A search of the literature revealed several prominent names, including Dr. Lawrence Flaherty of Wayne State in Detroit. I emailed Larry, who emailed me within an hour, and called me later that day, talking for an hour. He recommended that I consider a year of high dose interferon alpha. This appeared to reduce the recurrence rate by 25-30% - ie in my case maybe to 20% from 30%. I took the drug IV at home, in Joan's hospital, and by self injection for 11 months.

I began in March to have upper abdominal pain. When the maximal treatment for a peptic ulcer had no impact, an ultrasound, followed by a CT scan revealed that I had multiple area of tumour in my liver (about 10 or so, 1-2 cm in size), an 8 cm mass of lymph nodes just outside my liver (porta hepatis), and a 2 cm right axillary lymph node. Undoubtedly the cancer had spread from the get go.

After a whirlwind of emails to experts (Larry Flaherty, Teresa Petrella, and Jeff Weber of Detroit, Toronto and Tampa respectively, as well as Paul Chapman of Memorial), an opportunity suddenly arose unexpectedly. Jeff Weber had an opening develop in a then closed study of a drug that for him looked quite exciting. Like most of the treatments of melanoma being investigated, it is an immune modulator, that helps the immune system attack the tumour. I had to be in Tampa in 36 hours to be screened. This drug is given IV over 90 minutes every three weeks. Responses are delayed. Imaging to assess response is not done for 12 weeks. Some dramatic responses have occurred much later. The main adverse effects are fatigue, diarrhea, cramps, and a rash.
I was screened on June 5th, and hope to start the drug on June 9th.

Your interest in our journey is a comfort to us. Please sign on as a follower, so we know you are there. Add a comment as you wish. If you would like, email Ian at dr_i_reid@hotmail.com.

We also want and need to hear your news. It will be affirming for us to know that we continue to be an important part of your lives.

In addition to access to the best medical resources, we are most fortunate to be blessed with all of the ingredients in the recipe for a positive outcome. We are surrounded by love... and so grateful for our closely knit family, our many precious friends, our caring community and our nurturing church family. We share a deep and abiding faith that God is walking this difficult path with us.

Please take comfort in knowing that for us, this is a journey of hope. While we are well aware of the seriousness of our situation, we wish to focus on our blessings and strengths, celebrating each day to the fullest.

Remember, continuing to include us among those who share in your joys and sorrows... sending us your messages of encouragement, faith, hope and love... and keeping us in your thoughts and prayers are the most important things you can do to support us.

Blessings to all of you,

The Reid Family


Tuesday, July 26, 2011

Two years since almost a death sentence - so much for which to be grateful

Two years ago, I was in Tampa Florida, facing widespread liver metastases from an aggressive melanoma that had spread from my right shoulder, in spite of a year of interferon injections. I was placed on an experimental immunotherapy called ipilumumab, a new drug that had not been approved for use, and only available as part of a clinical trial.

After two doses, I faced a life threatening complication of a pan-colitis, an autoimmune side effect that left me unable to eat for two months, losing 35 pounds, and leaving me quite weak. I was not eligible for the 7 further planned doses of the medication.

Miraculously, within months, all the liver disease disappeared. A 10 cm mass outside my liver was shrinking steadily. Every three months the mass shrunk by 20-30%, until it was only 2.3 cm in diameter, or over 90% smaller.

As of the CT in July, the mass ceased to shrink. The question was then - was this scar tissue, or active cancer that was no longer responding? A PET-CT scan was done in Halifax over a week ago. This detects and quantifies any evidence of metabolic activity in the mass, or elsewhere in the body. Fortunately, there was no evidence of any metabolic activity in the mass, suggesting it was inactive scar tissue. Furthermore, there were no other areas of abnormal activity, helping to rule out other previously unsuspected spread.

In short, at this time, I appear to be without any active cancer. Considering that two years ago, the best results with a highly toxic therapy was a 10% remission rate, this is nothing short of miraculous.

I continue to require regular CT imaging, next in four months, and then at reduced frequency for life. Melanoma has a strange pattern of recurrence, much like some breast cancers, so being disease free for even five years is not a guarantee. However, none of us are born with a guarantee.

I feel well, though I don't have the inexhaustible energy I have exploited over many years. I continue to work out two to three days a week, with the discipline of my trainer Steve Mallett. His mantra, that it is up to us to be brutally consistent, is very appropriate.

I am surrounded by a loving family, good friends, and a profound sense that we are not alone in this world. I am very grateful for what appears to be more time. I am fully aware that this is not earned or deserved, as I have far to many patients that deserve this and are not so fortunate. I am constantly reminded that life is a journey, time is precious, and our relationships are our greatest currency.

Blessings,

Ian
Posted by Ian at 9:53 AM
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2 comments:

  1. Happy Birthday to me,
    Happy Birthday to me,
    Happy Birthday, Happy Birthday.....
    Happy Birthday to me!!!

    Love you,
    Sue

    Thank you God, for this gift!

    ReplyDelete

  2. Thanks for sharing. Congratulations on the life loving lessons. Smile inspiring.

    simon

    ReplyDelete

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