I forgot to mention that my Internist also commented on the Elspar...
She said that it is a good treatment; it's not considered "chemo". Its
effects lasts for approx 3 days and is used to get patients into
remission quickly, but does not "hold". She said even if I could afford
it, it can't be given indefinitely because it's a "foreign protein" and
Spencer would develop an allergic reaction to it with continued use.
N
Nina wrote:
I got a message from my Internist yesterday, (unfortunately I haven't
been able to reconnect with her for follow up questions). My question
had been about Dex shots and what to do now that Spencer seems to have
a new lease on life. She said that in order to prescribe chemo drugs
she'd need a confirmation on it truly being lymphoma. We could send
in fluid from his chest for testing, but since the Dex shots are
working so well, there might not be fluid to tap.
I had asked her about using Acemannan. She wasn't against it, but
hasn't seen enough proof that it's effective either. She also
mentioned that, yes, it's an anti-tumor treatment, but if Spencer does
have Lymphoma, the Acemannan OR even Interferon might not be a good
choice, because in stimulating the lymphocytes, (which are part of the
immune system), we might be stimulating the very lymphocytes we are
trying to suppress. If that were the case it could make the situation
worse not better. I immediately thought of Simon, (Michelle's Simon),
and our questioning the same thing with his auto immune response. I'm
wondering if that's why Spencer had such a bad reaction to his
injections of Interferon Omega.
So, I have another call in to see if they think it's wise at this
point to stop the Dex shots and see if the fluid builds back up, (so
we have something to test). I don't know if testing the fluid will
even be definitive in diagnosing Lymphoma. It seems to me, someone
already told me it might not be. Of course I'd like to not have to
give him steroid shots, but I'm so afraid of what his reaction will be
if I stop. I know it's unreasonable to feel this way, but I keep
hoping that this is all some terrible mistake, it's not Lymphoma, he's
actually got a chance to somehow get better and this will all go away
like a bad dream. What's a mother to do?? Any thoughts? God I hate
this disease.
Nina
