I haven't had much time to do an update these days but I am sitting in the car with a snoozin kid in our driveway! So I have a bit of time to write. Things aren't going super great. I am still waiting to get some important supplements like sea cucumber extract and more pau d'arco tea. The silly ash cloud really buggered up my orders and I haven't been able to get my full protocol going. My cancer is still moving at a rather quick pace. I thought it slowed for a bit but then I got a chest infection and the cancer took that opportunity to grow. It's so scary how aggressive it is.
I am having a big issue with time. I need just a few more months to really see how this protocol is going to work and I am not sure I have a few months. My liver tumours are now big enough for me to feel with my hands as well as my spleen. I am starting to get pain and a bit of nausea. A new tumour popped up in my leg and I think I now have one in my right ovary as well. I am terrified that my spleen will burst and no doctors here in the UK will remove it. They are just offering more chemo to see if it will help. They are not that confidant. They said that's why they never pushed chemo much in the first place as nothing works that great for angiosarcomas. It's a really beast of a disease. This has not put me off though or made me feel like I am going to die. I just feel the need to make the right decisions and move rather quickly. I just need more bloody time!
After talking to Dr Gammill on the phone we decided to start me on Methylglyoxal. He sent me home with two bottles of it in case this sort of situation. It should work rather quick and hopefully stop things. Google it for more info. It's very interesting and Dr Gammill has very good results with it. This should buy me some time. The next thing we are looking at is going to America for Insulin Potentiated Low Dose Chemotherapy. Dr Gammill would oversea this adventure and it will be administered at the San Diego Clinic in Mexico. The bad thing about this is that it could take up to a year and it's bloody expensive. We will have to move temporarily to the States. I love my home here and it really breaks my heart to have to uproot Dillon and Dee's life but hea, we have to do what it takes. There is a lot to figure out on that end. We have two fantastic dogs, a house and a mortgage to work out. Plus Dillon's grandparents will be so upset not to see their grandson every week like they do now. Unfortunately, I do think this is the best treatment for me and I don't want to continue to underestimate this disease. It's not your normal cancer and I don't want to be slow at attacking it with everything we got at this point. I am on the edge of things going very badly. Lucky I still feel fit to travel but I don't want to get any worse at all. Pain is very scary as well.
You may be wondering why I don't take the chemo offered here in the UK and the reason is that it will totally destroy my immune system, create drug resistance that would bugger up my chance of doing low dose chemo in the future and it just doesn't really work! Insulin potentianted low dose chemo on the other hand will be a slow but safer way to administer chemo and it won't have the massive damaging effect on my immune system as full dose. It will still could have it's side effect and still disrupt my immune system a little bit but not nearly as bad as high dose. I am in danger with my spleen not working. If I wreck my immune system and have a spleen that doesn't work and I get an infection it could very easily kill me. Look up IPT for more info on this type of chemo. Unfortunately I will still need to get my spleen removed to help things along and try to get any other tumours we can remove out as well. This costs more money and more scary surgery. I am not happy about this but again, do I want to mess around with this cancer? I need to do what it takes.
So that's where we are at at the moment. Things may change again, you never know! It seems to change from one week to the next. I will try to keep you updated. Be on the lookout for fundraising adventures my fantastic friends are doing and if you have any clever ideas let me know. We will need to raise quite a bit of money because we could be looking at spending $75,000 in the next year. Ouch!
By the way the angoigenesis things I am taking are really fascinating. Look them up if your interested.
Sea Cucumber Extract
Shark Liver Oil
Green Tea Extract
(no shark cartilage as it's really expensive and totally disgusting)
am I forgetting one?
Thanks for all your lovely support!