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Cyberknife then IL-2 and the Cyberknife

Posts: 34
Joined: May 2012

Hi All,

I have posted earlier too, but here is latest update:

My husband who is 33 now, was diagnosed with Kidney cancer about 15 months. Lesions in brain and lungs

April- left nephrectomy done

May- Cyber knife for 3 lesions in brain

July and October- HDIL-2

Scans after IL-2 were wonderful. in November scan showed only 3 tiny mets in lungs about 1-3 mm size. But doctor said it is more like scar. Then in Jnauary 2013, 3 new lesions in brain and 1 in spine( C1-C2 area). Again went through Cyberknife and 3 weeks of radiation for spine. He is on Decadron since then. Everytime try to taper it, swelling comes back. He was admitted to hospital for swelling in March. Now this is third time try to taper down steroids, so far so good. Last week he had brain scan, swelling much much lesser and no new lesion.

Yesterday he had follow up 3 month torso scan..all tiny nodules disappeared..there was nothing;-)

So now main challenge is to get off from Decadron which is causing lot of muscle breakdown. Does anyone had gone through similar issue?

Wishing all the members best of luck.


Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

Yes - you're facing a problem many patients and their care-givers go through.  Getting off Decadron and similar drugs can be a real headache - it has to be done carefully but it's desirable to get off as soon as practicable.

That said, it's great if that's the worst of your problems - well done on enduring the treatments and reaping the rewards.

Quite soon you'll get advice from members here who have direct experience of tapering off.

PS - I made a Freudian slip here - typed 'direst experience' in mistake for 'direct experience' - just as well I spotted it - what a lot of difference one letter can make!

Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

Strongmind, I hope things are looking up for you both. 

It feels like forever ago that I sent the last post, but I see it's only been a matter of days.  I said I hoped others with direct experience would quickly respond to you -  no-one has so far and the RCC universe is so fraught with ironies that I might turn out to be the first because, totally unexpectedly and out of the blue, I was put on Decadron yesterday!  I never dreamt that would ever happen.  I expressed considerable concern at this turn of events but my Oncologist was convincing in her rationale for this move.  I'll only be on it for 2 weeks in the first instance and will hope I don't need it again. 

So, we can compare notes.  How is your Husband doing now?  Please let me know if I can help (e.g. by pulling together the received wisdom of those I know who have dealt with, or are actively dealing with this issue).


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