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, October 16, 2009

Home again

We arrived home from Tampa, visit #4. The planned 36hr stay morphed into a longer stay. I developed a 12 hour period of atrial fibrillation, a rapid irregular heart beat, that came and went mysteriously without explanation. A thorough workup including a very high tech echocardiogram showed nothing abnormal. A medication was added, and I have been fine since. However, it delayed our return by 4 days. Rebooking flights over the Thanksgiving weekend was impossible. Joan toiled for hours dealing with two airlines and a hotel as I was undergoing the testing. Fortunately, with a little arm twisting, Continental and Air Canada did come through without outrageous penalties and high return fares, and the Sheraton Gateway Hotel at Pearson was cooperative.

My oncologist is very encouraged by results so far. I had a dramatic response already, earlier than most, and he expects this to continue. I have to have CT scans in a week and 5 weeks from now, then every 3 months for a while. If all is stable or improving, I will not have to return to Florida after November's visit.

Generally I feel well, although the GI issue is not fully settled, and I have more hot flashes than most menopausal women or my prostate cancer patients on hormone suppression. I have great sympathy for these people, and those with colitis. However, these symptoms reflect some continued effect of the ipilumamab, and hopefully continued effect on the melanoma. Medications are being weaned. I have a ways to go to regain physical strength and stamina. My weight is now healthy again. I am starting to recognize myself.

We have had little rest over the past month or so. The PEI Jazz and Blues Festival was wonderful, with four days of great music. I was quite involved in the end. Two of the evenings after the mainstage events finished, the unofficial celebrations and jam sessions started in my basement. Surrounding Doug Riley's tuned up Hammond B3, we had many of the great musicians from the festival drinking Gahan House microbrewery beer and playing music until 0400 or so for two successive magical evenings.

We also attended Patrick's album launch in Toronto, at a wonderful venue called Hugh's Room. Three great groups launched CD's under Steve Bellamy's new Addo label that night. The place was packed. Pat's group sold almost 100 CD's that night. We then went to Tampa, and saw the premiere of Pat's friend Aszure Barton's stunning new choreographic creation called BUSK. Try searching her name on YouTube and get a taste. Being there at the time of the premiere was a totally unexpected wonderful coincidence. The production was part of Michael Barishnokov's arts festival in Sarasota. Fortuitously, Pat managed a cheap flight from Toronto, caught the last performance of BUSK, and was able with Aszure to spend a beach afternoon and dinner evening with us at St.Petersburg.

Just to show how pooped we were on return, we managed to leave our two laptops on the bottom of our luggage cart at the airport in Charlottetown. We retrieved them thankfully the next day. Only in PEI I suspect.

We are proud of Pat and his remarkable progress as a composer and performer. We are also proud of Steve, who was selected through the Governor General's office, with 24 other Canadian young people, to be individually mentored by previous recipients of the Order of Canada. He travels to Ottawa in a couple of weeks for a few days to meet the Governor General, the other successful candidates and their mentors.
(Dave - if you are reading this, we are of course very proud of you too pal!)

It seems we are on a rapid run towards Christmas. We travel to Edmonton in 3 weeks to visit Joan's family. Her Dad has struggled with deteriorating health, so we want to see them and have a good visit. We then go to Toronto, where we will see Aszure Barton's new original ballet commissioned and performed by the National Ballet of Canada, I will take a detour to Tampa again for 36 hours, Pat and I treat ourselves to a Raptors-Phoenix Suns game, and we return to Charlottetown. Oh yes, Christmas is just over 3 weeks later.

Hopefully there will be continued encouraging news, resolving side effects, improving overall health, and some eventual consideration to returning to practice. No definite plans or expectations at this point - we have learned not to do so. A day at a time, and celebrate what is.
Things could be so much worse. We are grateful.

Best wishes to all.

Ian
Posted by Ian at 2:15 PM

5 comments:

  1. Ian
    So glad to hear things are going good for you and we pray it will stay that way on the rest of your journey to wellness.
    "All the best"
    Fred & Shirley

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  2. Great update..We are so pleased that things are continuing to move in a positive direction..
    Lloyd and Judy

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  3. You really are a paragon for everyone. May your excursion continue on with amelioration.

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  4. So glad to hear your good news.You havs such a busy and full life - how did you ever work?
    I will continue to keep you in my thoughts and prayers.Thanks for the update-I have been waiting for it.

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  5. Ian,

    Your progress is very encouraging. All the best and you certainly have had a hectic schedule. You are in my thoughts and hopefully you will gain some inner strength from knowing that your many friends are with you during this journey.

    Markku

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