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Apr 10, 2014 06:56AM
What is the typical protocol in Australia? In the U.S. it is 1000mcg of cyanocobalamin every month, in the U.K. it is hydrocobalamin every 3 months. I've read that in Canada they treat with oral megadoses rather than injections, which doesn't make sense to me.
For a while I convinced my doctor to give me shots every 2 weeks. I've stepped back to monthly, and seem to be OK. I was also taking daily sublinguals (which she swore would not help), and when the bottle ran out I didn't refill it. Boy was that a mistake! I learned the hard way that they really were helping. So now I take 6000mcg sublingual every morning...and top off in the afternoon if I feel the need.
My husband, who is not a medical professional, has agreed to learn how to give the injections. The nurse demonstrated, the doctor gave us 6 syringes, and a friend who is a nurse agreed to supervise him the first couple of times. But there is an injectable cyanacobalamin shortage in the U.S., so we haven't been able to get any! So I'm back to the doc for every shot, at $38 a pop until I meet my insurance deductible.
Sometimes I'm fatigued even after my shot...that's where it gets difficult to tell what is PA and what is PCRF (persistent cancer-related fatigue). I actually have a prescription for methylphenidate (ritalin) now, and even thought it makes me jittery it helps me get through the day with energy and focus. Pre-cancer I was the exact opposite of someone with an attention deficit, now I really have sympathy for people who suffer from ADD.
Thanks for sharing. I'll take a look at the videos. I also joined the Pernicious Anaemia Society (U.K.-based, but they have online forums) and that has been a wealth of information.
5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2-
6/7/2011 Lumpectomy: Left
6/28/2011 Lumpectomy: Left
10/6/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
1/2/2012 Femara (letrozole)