Trip to Sweden Cancelled While I was watching my platelet count, I took my eyes off of my creatinine clearance level which creeped up over the safety protocol borderline, so Dr. Dan Granberg, who runs the PRRT program at Uppsala canceled the treatment I was supposed to have on Monday. A higher creatinine clearance level is indicative of kidney damage, which is one of their main concerns. After doing 5 different kinds of chemotherapy over the last 15 years, I already had damaged (but very functional) kidneys going into the PRRT, so its unclear whether the higher levels are permanent or were caused by the PRRT. One of the culprits might be the main drug I take to control the carcinoid syndrome - the signature difference in my type of cancer - because it has also turned off insulin production by my pancreas. This means that while Im on the medication, I am, in effect, a type 1 diabetic, and have to take insulin by injection. I digress on this, because with tighter control, I have a chance of bringing those creatinine levels down. So its a problem, but its a problem that I may be able to do something about. So am I bummed out? You bet. There is no question, that PRRT saved my life, so its hard no to see failure to get additional treatments as equating to a shorter life. But Im not alive 15 years after being diagnosed with an incurable cancer because Ive lacked perseverance or incredible support from Peggy, friends, family and my carcinoid buddies. So Ill be in a bad mood for a few days and then Ill get to bringing those levels down. For my carcinoid friends, I want to offer this piece of advice. Over the last year Ive had the opportunity to talk with some of the worlds leading NET experts. In addition to the team of double doctors (MD + PHD) at Uppsala, Ive spent time with Dr. Tom ODorisio, Dr. Lisa Bodei and Dr. Irv Modlin, (among them, they have more publications than the Yellow Pages) and they are all of the opinion that after debulking surgery, currently the most effective treatment, with the longest beneficial effect is PRRT. It has fewer side effects than most chemos (this has agrees with my personal experience with Interferon, Dacarbazine, Temodar, Xeloda and Afinitor) and when done correctly, PRRT does not damage the kidneys the way so many chemotherapies can and often do. So when considering your treatment options, I want to urge you to consider PRRT. As Dr. Tom ODorisio said to my support group on November 15, The way to go is surgery and then the big gun, PRRT. That allows me to say to a patient, You wont have to any other treatment for maybe 4, 5 or 6 years. Theres no chemo or other treatment that can do that.
Posted on: Thu, 27 Nov 2014 00:03:49 +0000
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