Titan Clinical Trial for Apalutamide

[westjl2]

Curious to hear from anyone else on this study. How long have you been on it? Side effects? I started this in Dec 2016 after completing 6 rounds of Docetaxal. Continueing on Lupron since June 2016. Also have had 2 Zometa treatments. Because this is a blind study I am not sure if I am getting a placebo or the drug. However I am having some side effects which are hard to tell whether they are from this drug or the Lupron. I know the severe hot flashes are from the Lupron but I also am having joint/muscle pain and swelling in my fingers and also get very tired. I am also fighting rashes on a regular basis.

[AlanMeyer]

I'm not in the study but I have suffered joint pain in fingers, and to a lesser degree, in toes, which I attribute to Lupron. I called the makers of Lupron to find out if this is a common side effect and they said it was. You can look at the FDA label for Lupon to see a list of all observed side effects. It's available online from several sources and in various forms, e.g.,

accessdata.fda.gov/drugsatf...

I found several palliatives and (for me) a cure for the problem. To try to prevent stiffness, pain, and "trigger finger" when waking up, sleep with your hands balled into fists. To treat the symptoms, try running your hands (or toes if needed) under hot or cold water, or best of all, alternating hot and cold water. To cure the problem, I used massive amounts of exercise. Almost any kind of hand and toe exercises helped, even just clenching and unclenching your fists (or toes) hundreds or thousands of times per day. Hand exercises with the steel spring hand exercisers worked really well for me. So too did working with a rubber ball.

For tiredness, exercise helped a lot. You have to try to keep in shape. Walking a couple of miles a day might do it. Jogging, if you can manage it, may help a lot. Many people have reported that walking or other exercises have helped with the tiredness.

I didn't have any rashes. The FDA Lupron label reports them as part of a rare side effect, however the rashes might be from the experimental drug you're, possibly, taking, or might be completely unrelated. I'd ask the trial doctor or nurse if they have any recommendations for it.

Good luck.

Alan

[Hidden]

Unless you have a previous history of rashes, I would say you rolled the dice and came out a winner.

The study coordinators are very interested in documenting all rashes that occur with the patients in the trial, including requests to collect and keep pictures for their records.

Andrew.

[westjl2 in reply to Hidden]

Hope you are right. I do have sensitive skin and a history of eczema. However nothing like this. Cortisone cream used to help but doesn't touch it. Yes the clinical trial nurses are very interested in getting it documented and under control. Hard to pinpoint the cause as I am also on Lupron and Zometa.