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Trial Updates

Posts: 86
Joined: Dec 2013

Well, I have now been in the trial for 7 months and as many of you know I never made it through the 4 initial treatments due to severe side effects. I was able to get into the maintenance program but unfortunately I had more side effects. To date my Thyroid is shot and I now have hypothyroidism and need to take supplements. My first adrenal gland was surgically removed and the second gland was effected by the infusion and no longer works. Got to say the side effects of that not working were rough. Was so dizzy I fell several times, past out once and was rushed to ER but now I have another supplement that seems to be working most of the time. Still have some fatigue and some dizziness due to the mtc infusuon, hypothyroidism, and adrenal issues but on the whole they are "managable".

Next CT Scan is late October so I keep my fingers crossed that all these issues will be worth it in the end. Based on my last CT scan (August) I have a 15% shrinkage from the first CT Scan done in Feb of 2014, which is not too bad considering the other possibilities.


Best of luck to all


foxhd's picture
Posts: 3183
Joined: Oct 2011

I'm betting on another 15% shrinkage. Go for it!

Darron's picture
Posts: 310
Joined: Jun 2013

I'll see your 15% and go to 20%.

Good luck!

Jojo61's picture
Posts: 1310
Joined: Oct 2013

I'm betting along with those other guys! Rough ride, but sure it was worth it.



danbren2's picture
Posts: 311
Joined: May 2013


     It seems we all have a little bit of a gambler in us, thats how we all survive! Hoping your next scan is a whole lot better then the last one!

                                            Prayers for good health,


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