My son (15 - Evans since age 4, but now classified as ALPS) has had
several PET scans. (Also one lymph node biopsy that was negative.)
You are correct, Susan... reactive lymph nodes "light up" on the PET
scans just like malignant nodes. He has had reactive nodes
throughout his body, but his neck was the worst. His doctor (and
also NIH) had been hoping that PET could be used to monitor his
nodes, but couldn't because everything looked "positive" (falsely).

Now is is taking rapamycin (Rapamune) and the most recent PET scan
was negative everywhere.

Best of luck and Happy New Year!


--- In EvansSyndrome@yahoogroups.com, SAnder823@... wrote:
>
>
>
> Thanks to all of you who replied to my post regarding my son's
enlarged
> lymph nodes. The responses gave me more hope that this may just be
another
> exacerbation of his immune dysfunction and not something more
serious.
>
> The largest lymph node is in his groin, so that is the one they
will biopsy
> tomorrow. It is interesting that everyone seems to have had his
going on dur
> ing the early teen years, just like my son.
>
> I'd be curious if anyone ever had a PET scan. I know they have only
started
> using these routinely in the last few years, so maybe not. I'm just
wondering
> if inflammation registers positive like a malignancy would. From
my research
> on the web it seems that it might.
>
> We should have some answers based on the biopsy in a few days. Or
perhaps
> more questions?
>
> Thank you again for your responses. They have been extremely
helpful.
>
> Susan
>
>
>
> In a message dated 12/30/2007 5:51:33 P.M. Eastern Standard Time,
> MoMan136@... writes:
>
> Hi Susan,
>
> I've been through the whole "enlarged lymph node" ordeal. After a
biopsy
> when I was 14, they found nothing. I believe the final explanation
I got was
> that the enlargement was due to a "inflammatory reaction" (of
course, they still
> have no idea what the inflammatory reaction was to). Anyway, it
sounds like
> I've been through what your son is currently going through, and
I'd be happy
> to answer any questions you may have. Feel free to email me if
there's
> anything I can help you with, I know this is scary now but I'm
sure things will
> work out for the better.
>
> Best,
> Mike
>
>
> On Dec 29, 2007 6:06 PM, <_SAnder823@..._ (mailto:SAnder823@...) >
> wrote:
>
>
>
>
>
> Hello,
>
> I've read on this board in the past instances where Evan's
patients had
> enlarged lymph nodes, thought to be malignant, which turned out to
be benign. Did
> they ever find a definitive cause of the lymph node enlargement in
any of
> these cases?
>
> My son (15) will be having a lymph node biopsy next week. He has
many
> enlarged lymph nodes throughout his body and nodules in his lungs
(everything was
> found as a result of scans, not exams or symptoms). The lymph
nodes all showed
> up as positive on a PET scan this week. The positive PET has added
a new
> level of concern, but the doctors are still hoping that the lymph
nodes are
> enlarged due to some type of inflammation as opposed to lymphoma.
ALPS has been
> ruled out for him, but he does appear to be developing an immune
deficiency
> (CVID).
>
> If anyone has any experiences/If anyone has any
experiences/<WBR>information
> to share I would really
>
> Thanks,
> Susan
>
>
>
>
>
>
>
>
>
>
>
>
>
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