Update 23, March 1, 2007            LAST   NEXT                                                                               

There have been a lot of ups and downs in the last few months.

2006

• November 15. Dr. Bahlis. He recommended that  I fax eligibility forms for the Canadian Thalomid Access Program. He has another amyloid patient who has been on the program for 2 years or so and has been in remission even without having had the high-dose chemo and blood stem cell transplant. Hopefully, for me, it would make me feel better yet and perhaps reverse the prevailing infiltration of the amyloids in my system. New territory here. I am one of a very few cases. There need to be at least 300 case studies in the world in order for any papers on this treatment to be published. We have our doubts that we will get approval based on financial disclosure.

• November 17. Cardiac MRI

• December 5. Dr. Kryski. MRI looks good. No discernable change in amyloid accumulation in the heart tissue since one year ago. I'll see him again in 6 months

• December 18. No cost Thalidomide prescription approved. (Very expensive stuff - my gut had told me that we would get approval)

• December 22. 50 mg Thalidomide daily prescribed.

2007

• January 3. Dr. Bahlis. Thalidomide dosage changed to alternating between 100mg and 50mg daily

• Mid January. Chest cough has developed

• January 31. Dr. Bahlis appointment. He was unavailable so I saw an assistant of his, A nurse practitioner named Stephanie. Cough has gotten worse along with along with fatigue, weakness and overall unwell feeling. Thalidomide dosage set to 100mg daily. Cough attributed to bronchitis.

• February 8. Leslie Reed - Cardiac Function Centre, PLH. 6 months have passed since my cardioversion. My heart has not skipped a single beat since. As of today I am off the anticoagulant medication, Coumadin. Yay! Edema is essentially gone. It only comes up a bit, with some discomfort in the legs, if I OD on sodium.

• February 1 - 19. Cough has worsened. I'm really feeling like shit. Extremely dry skin, dandruff everywhere and it feels something like a sunburn, Very weak and fatigued. Major constipation. Tingling in hands like Carpal Tunnel Syndrome. No appetite. I have lost nearly 10 pounds since Christmas.

• February 20. Spoke to Stephanie and explained situation. I'm suffering from side effects of the Thalidomide. None taken today. Tomorrow go back to 50mg daily dosage.

• February 28. Dr. Bahlis. The transformation in the past week has been incredible. All side effects have abated and I almost feel normal so I continue with the 50mg dosage. Free light chain (amyloid) levels in the bloodstream are normal. In other words you wouldn't know I had amyloidosis based on the blood test alone. Woohoo! Now I just need to get my body into some kind of shape. I've set the wheels in motion (again) to address the teeth problem. It's been over 3 years since I've had to chew with front teeth alone. If you want to lose weight that's a sure-fire method. I really want to gain 20 pounds.