Stage 4 NSCLC with Mets to Brain

Hi All,

I am starting a new post as I know the other was getting very lengthy.
Craig is doing well and we had a great Easter. He is starting to get a
little testy agian, by this I mean there doesn't seem to be a thing I
can do right. Craig has never been one to nit pick about much, very
easy going and laid back. After they changed his meds he went back to
his old self for a week or so......The last few days however have been
increasingly testy.....so I have started my "It's not his fault chant
again" The hisopice nurse noticed as well and we are keeping a close
watch on him. He never gets testy with any of them, but has gotten
testy with me and our son. Mostly me though. It is just so sad,
because I know he really isn't like this. His short term memory had
gotten better as well and he is having some issues with that again. Oh
well, when the nurse comes to visit next week, I will pass her a note
mentioning all of this so she can chat with the Dr. I hate to do this
too, but he gets so embarrased when I tell the nurse he is doing this
or that, he looks like a scared little kid......this way she can just
tell him based on the report from the Dr they are adjusting this or
that if they do decide to do that.

Ok got that off my chest......I feel better. It really does help to
come here to talk to people who have gone through all of this.

Thanks all, Becky

"Beckys883" <beckys_883@yahoo.com> wrote in news:1176424467.769145.158140
@p77g2000hsh.googlegroups.com:

I will pass her a note
> mentioning all of this so she can chat with the Dr. I hate to do this
> too, but he gets so embarrased when I tell the nurse he is doing this
> or that, he looks like a scared little kid......this way she can just
> tell him based on the report from the Dr they are adjusting this or
> that if they do decide to do that.
>
> Ok got that off my chest......I feel better. It really does help to
> come here to talk to people who have gone through all of this.
>
> Thanks all, Becky
>
>
Do you never get a private conversation with the nurse? Maybe you should
'walk her to her car.' If you could chat, she may have some suggestions.

Toward the end, Socks would sometimes say really weird stuff - maybe
medications or maybe half in one world & half in another - don't know. But
he'd catch himself, realize & smile sheepishly.

I think he often dozed through part of the nurse visits. I know his aunt
freely discussed what all was going on with him. I don't think he minded.
Maybe Craig needs to be told you're just trying to learn how to give the
best care under different circumstances as the medicines cause some
behavior changes?

Fig

Beckys883 wrote:

> Hi All,
>
> I am starting a new post as I know the other was getting very lengthy.
> Craig is doing well and we had a great Easter. He is starting to get a
> little testy agian, by this I mean there doesn't seem to be a thing I
> can do right. Craig has never been one to nit pick about much, very
> easy going and laid back. After they changed his meds he went back to
> his old self for a week or so......The last few days however have been
> increasingly testy.....so I have started my "It's not his fault chant
> again" The hisopice nurse noticed as well and we are keeping a close
> watch on him. He never gets testy with any of them, but has gotten
> testy with me and our son. Mostly me though. It is just so sad,
> because I know he really isn't like this. His short term memory had
> gotten better as well and he is having some issues with that again. Oh
> well, when the nurse comes to visit next week, I will pass her a note
> mentioning all of this so she can chat with the Dr. I hate to do this
> too, but he gets so embarrased when I tell the nurse he is doing this
> or that, he looks like a scared little kid......this way she can just
> tell him based on the report from the Dr they are adjusting this or
> that if they do decide to do that.
>
> Ok got that off my chest......I feel better. It really does help to
> come here to talk to people who have gone through all of this.
>
> Thanks all, Becky

Personality changes are common with brain metastasis. He was diagnosed in
Oct and it says here
median 5 months, after radiotherapy.
http://www.hospiceworld.org/book/brain-metastases.htm
He's gone beyond the 5 months and sounds to be doing rather well, but
we're not there to assess his daily and nightly quality of life and
performance status.
Steroids can also cause testiness.
I think "testy" comes from the word testosterone (which apparently is also
a steroid which comes from cholesterol).
I wonder if an estrogen patch (or insert in the arm) can tone the
testiness down ?
Or progesterone? mediates male aggression?
It might be a "far out there" idea, but I'm looking for solution to the
testiness (rather than something that's more sedating). Something to ask
the hospice to ask the doctor?

J - looking for quality of life for all of you.

On Apr 13, 1:26 am, J <nexsw@nvalid,anon> wrote:
> Beckys883 wrote:
> > Hi All,
>
> > I am starting a new post as I know the other was getting very lengthy.
> > Craig is doing well and we had a great Easter. He is starting to get a
> > little testy agian, by this I mean there doesn't seem to be a thing I
> > can do right. Craig has never been one to nit pick about much, very
> > easy going and laid back. After they changed his meds he went back to
> > his old self for a week or so......The last few days however have been
> > increasingly testy.....so I have started my "It's not his fault chant
> > again" The hisopice nurse noticed as well and we are keeping a close
> > watch on him. He never gets testy with any of them, but has gotten
> > testy with me and our son. Mostly me though. It is just so sad,
> > because I know he really isn't like this. His short term memory had
> > gotten better as well and he is having some issues with that again. Oh
> > well, when the nurse comes to visit next week, I will pass her a note
> > mentioning all of this so she can chat with the Dr. I hate to do this
> > too, but he gets so embarrased when I tell the nurse he is doing this
> > or that, he looks like a scared little kid......this way she can just
> > tell him based on the report from the Dr they are adjusting this or
> > that if they do decide to do that.
>
> > Ok got that off my chest......I feel better. It really does help to
> > come here to talk to people who have gone through all of this.
>
> > Thanks all, Becky
>
> Personality changes are common with brain metastasis. He was diagnosed in
> Oct and it says here
> median 5 months, after radiotherapy.http://www.hospiceworld.org/book/brain-metastases.htm
> He's gone beyond the 5 months and sounds to be doing rather well, but
> we're not there to assess his daily and nightly quality of life and
> performance status.
> Steroids can also cause testiness.
> I think "testy" comes from the word testosterone (which apparently is also
> a steroid which comes from cholesterol).

Well, that explains a few things - wonder what bar-bitch-uates do?
Fig

On Apr 13, 2:02 pm, "Figgertoes" <figt...@yahoo.com> wrote:
> On Apr 13, 1:26 am, J <nexsw@nvalid,anon> wrote:
>
>
>
>
>
> > Beckys883 wrote:
> > > Hi All,
>
> > > I am starting a new post as I know the other was getting very lengthy.
> > > Craig is doing well and we had a great Easter. He is starting to get a
> > > little testy agian, by this I mean there doesn't seem to be a thing I
> > > can do right. Craig has never been one to nit pick about much, very
> > > easy going and laid back. After they changed his meds he went back to
> > > his old self for a week or so......The last few days however have been
> > > increasingly testy.....so I have started my "It's not his fault chant
> > > again" The hisopice nurse noticed as well and we are keeping a close
> > > watch on him. He never gets testy with any of them, but has gotten
> > > testy with me and our son. Mostly me though. It is just so sad,
> > > because I know he really isn't like this. His short term memory had
> > > gotten better as well and he is having some issues with that again. Oh
> > > well, when the nurse comes to visit next week, I will pass her a note
> > > mentioning all of this so she can chat with the Dr. I hate to do this
> > > too, but he gets so embarrased when I tell the nurse he is doing this
> > > or that, he looks like a scared little kid......this way she can just
> > > tell him based on the report from the Dr they are adjusting this or
> > > that if they do decide to do that.
>
> > > Ok got that off my chest......I feel better. It really does help to
> > > come here to talk to people who have gone through all of this.
>
> > > Thanks all, Becky
>
> > Personality changes are common with brain metastasis. He was diagnosed in
> > Oct and it says here
> > median 5 months, after radiotherapy.http://www.hospiceworld.org/book/brain-metastases.htm
> > He's gone beyond the 5 months and sounds to be doing rather well, but
> > we're not there to assess his daily and nightly quality of life and
> > performance status.
> > Steroids can also cause testiness.
> > I think "testy" comes from the word testosterone (which apparently is also
> > a steroid which comes from cholesterol).
>
> Well, that explains a few things - wonder what bar-bitch-uates do?
> Fig- Hide quoted text -
>
> - Show quoted text -

LOLOLOL! Thanks I needed that! We should see the nurse tomorrow or
Tuesday and I do plan to do jus tthat walk her to the car on the
pretense of getting the maila t the same time. We had a wonderful
weekend, and went to our country place. I can sure tell when he is due
for meds, there isn't a bloomin thing I can do right to save my a--!
After he gets the meds he calms down and is almost like the Craig I
fell in love with, for the most part. I think too I need to know if
they plan to continue any testing, most likely not, but just want to
be sure. Craig keeps asking when our next appt is even though I have
told him over and over we haven't scheduled it yet. He seems to be
hitting those bad memory patches agin, so I am sure the lesion is
still growing. I am trying to learn all I can about these lesions and
the nature of them by where they are located. The one that they have
said is growing is in the Upper left frontal lobe. Do either of you
have any good links where I can possibly narrow my search.

Thanks again for the funnies, they really made me laugh out loud!!!!

-b

On Apr 13, 3:26 am, J <nexsw@nvalid,anon> wrote:
> Beckys883 wrote:
> > Hi All,
>
> > I am starting a new post as I know the other was getting very lengthy.
> > Craig is doing well and we had a great Easter. He is starting to get a
> > little testy agian, by this I mean there doesn't seem to be a thing I
> > can do right. Craig has never been one to nit pick about much, very
> > easy going and laid back. After they changed his meds he went back to
> > his old self for a week or so......The last few days however have been
> > increasingly testy.....so I have started my "It's not his fault chant
> > again" The hisopice nurse noticed as well and we are keeping a close
> > watch on him. He never gets testy with any of them, but has gotten
> > testy with me and our son. Mostly me though. It is just so sad,
> > because I know he really isn't like this. His short term memory had
> > gotten better as well and he is having some issues with that again. Oh
> > well, when the nurse comes to visit next week, I will pass her a note
> > mentioning all of this so she can chat with the Dr. I hate to do this
> > too, but he gets so embarrased when I tell the nurse he is doing this
> > or that, he looks like a scared little kid......this way she can just
> > tell him based on the report from the Dr they are adjusting this or
> > that if they do decide to do that.
>
> > Ok got that off my chest......I feel better. It really does help to
> > come here to talk to people who have gone through all of this.
>
> > Thanks all, Becky
>
> Personality changes are common with brain metastasis. He was diagnosed in
> Oct and it says here
> median 5 months, after radiotherapy.http://www.hospiceworld.org/book/brain-metastases.htm
> He's gone beyond the 5 months and sounds to be doing rather well, but
> we're not there to assess his daily and nightly quality of life and
> performance status.
> Steroids can also cause testiness.
> I think "testy" comes from the word testosterone (which apparently is also
> a steroid which comes from cholesterol).
> I wonder if an estrogen patch (or insert in the arm) can tone the
> testiness down ?
> Or progesterone? mediates male aggression?
> It might be a "far out there" idea, but I'm looking for solution to the
> testiness (rather than something that's more sedating). Something to ask
> the hospice to ask the doctor?
>
> J - looking for quality of life for all of you.- Hide quoted text -
>
> - Show quoted text -

J- you note he has gone beyond 5 months......do you mean since
diagnosis, yes it'll be six at the end of April. He did have WBRT does
that reset the clock or does the mets starting to grow again in early
March restart the clock? This is the kind of confusion I have. I want
specifics base dupon diagnosis 10/06, WBRT ended late December, 2
chemo treatments ended mid January. MRI showing more growth in 3/07.
What about the lung part.....which is it gonna be the lung or the
brain?

Sorry to pester....
-b

Beckys883 wrote:

> J- you note he has gone beyond 5 months......do you mean since
> diagnosis, yes it'll be six at the end of April. He did have WBRT does
> that reset the clock or does the mets starting to grow again in early
> March restart the clock? This is the kind of confusion I have. I want
> specifics base dupon diagnosis 10/06, WBRT ended late December, 2
> chemo treatments ended mid January. MRI showing more growth in 3/07.
> What about the lung part.....which is it gonna be the lung or the
> brain?

Hello Becky.
You're never a bother here. We're here to support you.

One poster here, advised us very regularly. His wife had lung cancer and brain mets and had the
WBRT. What happened is he was caring for her at home, with the help of family, for a while,
then alone and she become so weak, that she was hospitalized She passed away peacefully in
hospital, approximately one month after the severe weakness started. Same for my mother by the
way, but she did not have WBRT.

If I can answer questions I do.
If you want to know the prognosis now, or how Craig will die, it's best to ask his oncologist.
He sees the scans and Craig's performance status.
I'm sorry I can't answer your question.
If I misunderstood your question, please ask again.

You and Craig will be in my thoughts.
J

> If I can answer questions I do.
> If you want to know the prognosis now, or how Craig will die, it's best to ask his oncologist.
> He sees the scans and Craig's performance status.
> I'm sorry I can't answer your question.
> If I misunderstood your question, please ask again.
>
> You and Craig will be in my thoughts.
> J

Thanks J sorry to badger. Unfortunately that is why we are in hospice,
because they don't know what else might be going on in the brain
besides the lesion starting to grow. And it is too sonn to try
radiation again. If he had a couple they could try more with 20+ it
sounds as though they will just be trying to beat the clock. He is
really doing well right now, but I am waiting for the other show to
drop. I know it is coming. I see him get tired easily, need extra
shots of meds between the rgular doses at times. I know he is only
going to get weaker and we are working on making the best of everyday.
He wants to be at home and that is what I want to do for him.