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


Wednesday, June 16, 2010

The Waiting Game - next CT in early July

This has now become the longest time between CT imaging since the journey with metastatic melanoma started just over a year ago. It is almost 11 months since the second and last of my ipi treatments, and over 9 months since my month in hospital with fulminant colitis. Most of the time now I don't even think about the next CT. However, when I do, the questions about what if things are worse arise. They are quickly doused, partly as I hope they are irrelevant, and partly because I don't know the answer. It's not denial, just -what's the point of worry? I'll deal with it if and when I must.

I feel well, and after six months of thrice weekly workouts, am more fit than in the past 20 years. Most of my family are well, my parents, dear wife Joan, and three sons. My father in law unfortunately is suffering from an advancing dementia. As a good friend said recently, with dementia, you lose someone twice, and the first time is the most difficult.

I still limit my practice to four days a week, and am not on call to the emergency department. This will all change once I am considered disease free, but not before. My own immunity is all that is fighting the remaining disease. I can't get more ipi. With the support and direction of my doctors, I maintain these boundaries. Unfortunately, by some colleagues involved in hospital administration I am under considerable scrutiny over these limits, and intense pressure to do more, or if not more, as a consequence, much less. Frankly, it is unwelcome and unnecessary added stress.

Since returning to practice in January, I have been deeply touched and saddened by at least six stories of patients in my community with melanoma that have not been so fortunate. One teen that had a spot on her scalp that failed to go away after many months, several doctor's appointments, only to find she had metastatic disease. this was over 30 years ago, before any effective treatment. She would have been my age. This kind of story fills me with sadness, and a deeper sense of gratitude for my experience so far.

Also, a friend my age with metastatic pancreatic cancer is responding well so far to his chemotherapy. You are in my thoughts and prayers BC.

Hopefully in early July, all will look better, and if very fortunate maybe clear of disease.

Shalom,

Ian
Posted by Ian at 9:48 PM

1 comments:

  1. Hey Hey Hey my brother!
    Glad to hear your update. We are of an age where the raw realness of this life becomes apparent on many fronts. Many of our moments are touched with bittersweet. But the sweet is even more so isn't it? Love you. So, let's you and I keep on really tasting each moment, until we are carried off. Sue

    P.S. since you are (possibly?) the only person I know who is more stubborn than me....any carrying off bit is liable to be rather noisy - with heel furrows plowed behind us! Best (always.)

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