So I recognize that many people don’t really understand what the trial is that I am doing. So I will try and summerize it as best I can. But do encourage anyone interested in learning further to google it for yourself, and find information that you can best understand.
So all my pre-treatment trial stuff:
1. Biopsy – that was done Feb 10th, I still have a huge fluid pocket where my giant nodes were removed! So that Biopsy was used to take tissue and start growing cells in a lab; T-lymphocytes. These will be duplicated to the point of 10s of Billions of cells. That is the plan, cells don’t always grow, fortunately mind did.
2. MRI – Need a clear MRI or steady brain mets, mine was clear!
3. Bloodwork, bloodwork, bloodwork – all sorts of stuff, including transmissible diseases, which can knock you out of the trail.
5. Neupogen shots for 4 days – white blood cell stem cell stimulators; these shots cause bone pain.
6. Apharesis – extraction of the white blood cells through a blood harvesting process.
7. CT, and Eye Test
So, for apharesis you need to have a good vein in your arm that can support an 18 gauge needle. Well after all I have gone through I don’t. So monday morning I have to get a Quinton catheter inserted in my jugular. Its a stiff catheter, which will suck, but I only have to have it for 24 hours. In the end it will make the apharesis process faster than in my arm. I am then going for a CT, and an eye examination. Tuesday I have to get blood work done at 7am, blah, and then off to start the apharesis process. At least after tuesday I get a little break from all this stuff. Except that I need to get another transfusion before the treatments start, as my hemoglobin is below 90 already and I need it to be at least 90, so I will be arranging a transfusion before treatment.
Treatment – March 18th is check in. I will be getting a Hickman line in place (gloogle it!); but its another type of central line going into my chest.
Then start March 19th I will begin treatment. I get Chemo for the first 5 days; two different kinds, to knock out my immune system not to attack my cancer. Then I will get my TILS, my cells that have grown. After that I get IL-2 for 9 treatments for 2 weeks. IL-2 is an immune booster to aid my TILS.
So all of these stages comes with lots of different side effects, I believe I will likely start in wearing boxers and a tank top, ending up in winter gear! The side effects can be very harsh. But its 3 weeks. And then I am out. Many side effects can stick with me, any where from respiratory infections to long term kidney issues. Once at home I will be very very tired. But if this all works the way we hope it will, then in a few months I will be able to get back on my feet.
On a personal note all of the testing, environment, personal dynamics cause anxiety to increase more and more as the trial comescloser, and its nothing to do with the treatment itself. Its exhausting going in and out of Toronto all the time for different tests and constantly being poked at. I have been put through so many tests, trial preparations and treatments in just 1.5 years its exhausting. My veins are just all shot, blood draws are getting harder along with catheters, my poor one good vein left. And I really need a mental break from it all. So I feel a lot of pressure on this trial to work, it doesn’t need to be perfect, but just work enough to give me a break from all this. Oh and I will have to restart all over with my hair again!