Hi ya,
Thought I'd better send you another update .....
* brain radiation - started on Mon 16th as planned. All going well. Managing to get through without sedative so very proud of myself for achieiving that (the face/head mask and my claustrophia don't go well together). Side-effects due to kick in this weekend but am hoping to be one of the lucky ones who get through it with only mild symptons. Managed to find a lovely acupuncturist in Palmerston North who is helping me get through the process with as little impact as possible.
* visit to Rob Maunsell in Masterton last week was great (he is a GP with a specialty in Anthropological medicine and works with Weleda products). He has given me 2 injections, 2 tonics and 1 lot of tablets to take and they are making a difference with my Rheumatoid Arthritis already. Go back to see him next month so he can tweak any of the formulas as required.
* visit to Mike McCrystal (Akld Oncologist) went well. As suspected the B-RAF drugs are the way to go for me at this stage due to my arthritis. He told us about another one called Vemurafenib which very similar to the Dabrafenib/Trametenib combo but with a few different pros and cons. Main cons being that on average it is only effective for 9mths and there can be extreme sensitivity to sunlight. Main advantage however is the costing structure - it will cost approx $100,000 for the first 9 months but after that if it's still effective for me then it will be free for as long as it lasts. One of his patients has been on it for 8 years so my plan is to be one of those types of patients!
* looking into Hyperbaric Chamber in Devonport, Auckland - tank that you sit in for a few hours each day and breathe in pure oxygen. Really good for recovering from radiation and cancer in general and for regenerating brain cells that have been killed off by radiation.
* looking into melanoma drugs trials in United States. Have a contact at UCLA who is passing through some info on their current and upcoming trials that allow people with Rheumatoid Arthritis to participate (who are typically automatically ruled out of any trials)
* plan from here is to get through the radiation. Then to ideally wait 6 weeks to have a full set of scans (can't scan my brain before this due to the swelling) and then make a decision on which drug to take. Of course if the cancer moves agressively before the end of the 6 weeks or if I start experiencing bad symptons then I will need to move onto the drugs immediately.
Finally just want to express my thanks over and over for your generousity, kindness and warm wishes. I am so blessed to be surrounded by people such as yourselves.
Love B :-)
