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


Friday, September 18, 2009

The Journey Continues

Well, things are encouraging. I am eating well, and my weight has reached the ideal level. I had fifteen pounds I didn't need. My colitis is virtually settled, I am almost off prednisone, and hopefully will not look back. My main job is to regain stamina and strength. It is remarkable how weak I feel. I will not broadcast this, but either son could likely take me in a wrestle right now. It will likely take several months of structured exercise to return to normal.

My followup CT was done yesterday. The disease in and near my liver is stable, virtually unchanged from 24 days ago. This is good, as I haven't had treatment for two months due to the colitis. It would have been nice to see further shrinkage, but this was a lot to ask for after such a short time.

Off to Tampa to see Dr. Weber October 9th. Undoubtedly he will recommend regular CT's and no more ipilimumab. This drug if given again might have severe and unpredictable adverse effects like a recurrence of the colitis.

This will be a long journey. I will just have to live with the uncertainty, as as long as there is anything on the CT, it might or might not be active cancer. Often the cancer is replaced by scar
tissue after a major regression on therapy. Unfortunately, when the CT is not normal, there will be questions.

Anyway, lots to look forward to: the Jazz and Blues Festival next week, Patrick's album launch here and then Toronto October 4th, the ballet in late November, and a Phoenix Suns vs Raptors game after that.

As always, thank you for your interest in following my journey, and the visible and invisible support I feel from all of you.

Blessings

Ian
Posted by Ian at 10:41 AM

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