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Trial report

firedude21
Posts: 52
Joined: Sep 2014

Hey all -

It's been a while since I've posted on the forum. There has been a lot of life issues going on that had to be dealt with. Anyway as for how I am doing. I just completed a year on the MPDL3280a plus Avastin trial. For the first few months of the trial there were few side effects and those were easy to deal with.  As I got further into the trial the side effects became more frequent and harder to deal with. My side effects after a year include pretty severe joint pain. Mostly in my shoulders and arms and right leg. Last week I could barley walk and then only with the help of a cane. My shoulder and arm movement is limited and I have lost a lot of strength. I am also dealing with an itchy skin issue. Gold bond seems to help. That being said I really have no complaints. At the beginning of the trial there was some shrinkage of my tumors and for the last nine months or so all have remained stable.  Although I haveen't posted much I stll follow the forum on a regular basis. I get so much encouragement from the members and feel the pain when we lose someone. 

I wish you all the best.

firedude21

donna_lee's picture
donna_lee
Posts: 966
Joined: Feb 2009

Sorry about the side effects;  but the alternative is not so great a prospect either.  I'm truly glad they have come up with some drugs that can allay kidney cancer and it's mets. 

When I was first D'xd, there wasn't a lot to choose from-like 3 actually and none of them were great.  Because I didn't have an active site after the first surgery, they wouldn't put me in any trial.  (Small blessing.)  If they'd only known that there was a recurrence or two growing in my abdomen that were not discovered until the CT scans in the next two years....Oh, well!

Glad you seem to be stabilized at this point. 

Happy Christmas and Merry New Year.

Donna

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hello Firedude!

Always happy to hear from you!

Thank you for sharing how you're doing. Although the side effects are a bit challenging, I am glad to hear of some success - and still see that you have a great attitude.

And it is nice to know that you are still checking in on us. :)

Be well!

Hugs

Jojo

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

firedude, it is nice to hear from you, and glad you are doing well. Have been wondering about you.  Glad to hear hear about tumor shrinkage.  Hope the side effects subside.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Stable is good. Hope you continue to see stability and your side effects subside. Sorry to hear about your pain and mobility issues.

For me, I keep trying to find things to feel grateful for. It helps my attitude. There is a famous story attributed to the Buddha. Goes something like this:

"Even if they didn't listen to me, I would not be disappointed. I would consider myself fortunate not to be made fun of." Then the Buddha asked, "What if you were derided?" Purna replied, "If I were, I would consider myself fortunate not to be slandered." When asked, "What if you should be slandered?" he answered, "Even if I were, I would consider myself fortunate not to be beaten with sticks or stoned." Asked, "What if you were beaten or stoned?" he replied, "I would consider myself fortunate not to be wounded by a sword." Then asked, "What if you were wounded by a sword?" he answered, "Even if I were, I would consider myself fortunate not to be killed." Next asked, "What if you were mortally wounded?" to the last he responded that he would consider himself fortunate to have lived a wonderful life in service to what he holds dear.

Very challenging at times, but I keep thinking of this example.

Have a terrific holiday.

Todd

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