Hi Group,
I have the rare option of enrolling into the leukemia med study,"Campath".
2 people have died thus far from it, and I was hoping to chat with someone who has tried this therapy.
2 people also died from PML/tysabri. I was on that ,too.
Any input is appreciated.
TG
Wow
!
At least the Trial IV's are finished (In fact it finished 2 Friday's ago), but Blimey that was hard work.
The IV's were the least of my worries (although the allergic reaction to the Trial drug was quite something - After 3 hours each day I came up with an 'impressive' allergic reaction - head to toe red, itchy, sore Hives - it looked like I'd been attacked by several swarms of bees!! But an IV of some anti-allergic dealt with it very quickly)
Since the IV's finished, I've been on anti-biotics for a sinus & ear infection, followed by a mouth infection from the anti-biotics. Energy levels have been at an all time low - sleep is the favoured activity at the moment!
BUT since the start of last weekend I have started to feel a lot better &
AMAZINGLY I feel quite an improvement in some things. Most noticibily, my left leg, which has been an unbalanced, uncoordinated thing attached to my body, that hasn't really wanted to do what I've wanted it to do, has become reattached.
My logic on everything is 'I would if I could'
As far as the trial participation is concerned 'I could so I did.
I have found it hard work, & who knows what the rest of the year will bring?
But if I were you, & if your lifestyle permits taking some time to recuperate, I would go for it
Samantha (ScattyD)
I am also on the Alemtuzumab trial. Had drug at the end of march. Doing well, VERY little side effects. Much better that 3 x weekly self-injections. You are basically monitored every two weeks between the survey and the clinic visits so there is a great chance they will catch anything major before it becomes a problem. Highly recommend it.
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Hi Klutz (that sounds so weird to say),
Welcome. I don't know if there are other folks here who have used Campath. But I'd certainly be interested in following your experience with it.
I am aware that one patient died during previous trials. But in researching it, I believe that the patient who died was discovered to be on the other arm of the trial, meaning that he/she was using Rebif, not Campath.
The potential side-effects are powerful as was reported recently. I wrote about that here. It sounds like they've discovered what to monitor for so that patients can receive swift treatment if need be for ITP or thyroid disease.
Looking forward to more soon.
Lisa
Hi Lisa,
I am Terri- the klutz. I should change that....
That is interesting that the pt was on Rebif.....
Ive been on that too.
Thanks for the input, I shall do some more research!
Terri
I did my week the first week of March....so far so good