Because I'm tired and just posted in my Hodgkins Forum, I thought I'd just copy what I wrote in my post there. I finally finished my bathroom! I'm now on to the kitchen which isn't nearly the project although I just had to rip out a section of my ceiling from the leak that was recently fixed in the bathroom, blah, blah, blah... Anyway, I'm redoing my counter tops (which were a dirty white) with this nice new product from Lowes where you reface rather than replace the tops. It's a 4-5 step process and hoping I can seal em up tomorrow and they look good. I have so many other little projects going on... I'm anxious to finish the inside of the place so I can spend the rest of the summer going on trips (hopefully).
Anyway, I need to crash so I can get up at a reasonable time tomorrow to sand and seal. If it comes out ok, I'll put some pics up!
Here's my post, some of the info may be repetitive. Notice we all list our treatment lists at the bottom of our posts, mine's getting pretty long, plus I just noticed I still have my age as 39, ha! Think I'll just keep it as is for s and g's ;)
Hey everyone, just wanted to let everyone know the RAD001 seems to be working for me :-) after almost two cycles, I've had reduction in some areas and stable in others. This is around a month ago... Since then, I've continued to feel better (my disease is in my back usually the pain is the indicator of what my disease is doing) which is great! What's even better is I have a quality of life back that allows me to do things that I was unable to do previously because of what SGN-35 did to my body.
It feels so good to have strength back, the most energy I've had in a while, very few side effects (occasional diarrhea, acne which can be controlled and low platelets).
I've felt so much better that there are days where I won't think about cancer for hours at a time which is pretty good when you have refractory Hodgkins.
Anyway, for any of the refractory folk who haven't tried RAD001, if it's available at a cancer center you can reach, it's a good option for those who haven't responded to traditional chemo like myself.
I've also sent blood to a Dr. Heslop at Baylor university who is heading a gene therapy trial which also grows your genetically altered killer T-cells although using different technology. I haven't researched how the drug works (been too busy enjoying my life but know the criteria is different from Dr. Bollards killer t trial at Baylor for those who are EBV+ in their tumors. Dr. Heslops trial only requires that you are EBV seropositive (which means you have EBV in your blood which 95% of the population has) and you are CD30 positive (which anyone who is accepted into SGN-35 is CD30 positive). So, when I find out more information (kinda holding off until I get official word that my genetically altered T-cells are actually growing as to avoid disappointment if they're not).
Anyway, hope you all are doing well and if anyone has any questions, I'll do my best to answer.
Chris 39, NSHL IVB BMB neg, 11-07 ABVD x 6, 1-08 NED, 6-08 Primary refractory, 6-08 V-ICE x2, 8-08 GVD x 3, 11-08 1st SCT Melphalan 2nd SCT TBI, VP-16, Cytoxan, 6-09 Relapse 7-09 SGN-35, 4-10 SAHA/Niacinamide, 5-11 RAD001 http://chris-alt-del.blogspot.com/