Hi everyone,
Welcome new members and hello old friends. Annika and I went to Sydney Childrens Hospital at the end of January. She had a chest x-ray and an MRI on her arm and her head. These are all clear!
She was very good, she had to stay still in the MRI for nearly two hours. The x-ray was amusing, they were about to close and they didn't remove Annika's singlet which no-one noticed had sparkles on it. They showed up on the image as a chain of metal links like she'd been eating metal! Needless to say the removed the singlet and re-did the x-ray. Yet another scan.... oh well.
We will be going back to Syd in July for a chest CT and an MRI of Annika's arm.
The head MRI I had to PUSH for as they saw no need to scan her brain unless she had neuro symptoms! I really, really didn't want to wait for that, and I wanted to check the "lymph node" swelling on her jaw really was just that. Thankfully it is just a node and it has shrunk to nearly being impossible to find with manual palpitation.
I wanted an effective scan as the PET scan they did originally didn't even show her primary! He doesn't know it yet, but I want to do a CT of both her lungs and abdomen at some point. I'll really have to work for that I think!
Our Onc said that we should review the scan schedule in July, I suspect he'd like to reduce scan frequency to yearly, I am not comfortable with this! What do you think?
Annika is very well, her arm has full range of motion and 90% triceps strength now, she's also growing like a weed!
We have all switched to a no-added-sugar diet, no processed food, no white flour/rice/potatoes. The idea being that the blood sugar doesn't spike and feed any circulating tumour cells. We eat stacks of vegetables and only two fruits a day. We also eat vegetarian 4 days a week.
We have put Annika on a mushroom supplement called AHCC, if you google it, ignore all the very excitable stuff, there are some preliminary studies that show increased natural killer (NK) cells and dendritic cells on AHCC. While researching ASPS xenografts, I found that they can't grow them in normal noskid mice (no imune system), they need special ones with no NK cells either. This combined with how ASPS seems to accelerate if mylosuppresive chemo is used lead me to wonder if there is a low-level NK response to ASPS. So I hope that by increasing the population of immune cells there is more chance of them damaging any stray ASPS cells, and maybe generating a more effective immune response if they are found. That's my theory anyway.
Take care.
Damian
Thank you for the shared update as well as the research information which is deeply appreciated. I will be very interested in following the promising OTS964 drug and Hope that it will prove to be a very effective systemic treatment for ASPS.
