March Roll Call to alt.support.cancer

New people please an intro: a name (instead of xyz234789@gmail) we can
call you, your type and stage of cancer.

Previous posters, how are you doing? What's new?
Some of whom are

Jacques - how were the scans? On the new chemo? how's the pain?
Gloria: How's your husband doing? Has your mother had the 2nd liver
procedure?
Christine: How's your father doing? How's your friend, Robert doing?
Stew aka Frank - Are you out there lurking? - I miss hearing from you.
Elsie lurking?
Head and neckers: Uncle Sally, Janet, Araik, Clifto, Uncle Sally, Janet
and more...
Robin - mesothelioma
Betsy, how are you doing on the new chemo?
Alayne - got plans for Spring Break
BJ - What's new
Jill - thyroid - anyone heard from her?
Anita - how's it going?
Anne - ovarian cancer
Anne (NL) - bladder cancer how are you "Anne's" doing?
Marc - how'd the marking and information session go?
Kilikini - tumor still stable?
Bob in CA - scans soming up?
Orping - checkup coming for your wife ? How are you both doing?
Peter Clarke
Angie - please update
Raymond
Dale
Annie - how's your son?
Nana - are you out there reading?
Roland - how's your friend (oral cancer) ?
SS - how's your husband doing? (colon - liver - Canada)
Ellen - how's your husband doing (Canada)
Saima - how's your friend doing?
Eric and Hans - updates?

The others, please come in, delete the above and update.
J

J <nswex@nalid;no> fell face-first on the keyboard. This was the result:
news:47D134D7.38E885AF@execulink.com:

> New people please an intro: a name (instead of xyz234789@gmail) we can
> call you, your type and stage of cancer.
>
> Previous posters, how are you doing? What's new?
> Some of whom are
>
> Marc - how'd the marking and information session go?

Mentioned in the "Happy birthday, Marc" thread, but it went well. Glad I
went to the info session.

My cancer is malignant metastatic paraganglioma - originally a glomus
jugulare tumour in the jugular bulb behind the right ear. Cancer had spread
to the mastoid bone and two lymph nodes. Surgically removed on Dec 18th;
Right ear canal surgically closed off. Candiate for a bone implanted
hearing aid when everything is all healed up.

Much more positive outlook to this cancer thing than a month ago


--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

"J" <nswex@nalid;no> wrote in message
news:47D134D7.38E885AF@execulink.com...
> New people please an intro: a name (instead of xyz234789@gmail) we can
> call you, your type and stage of cancer.
>
> Previous posters, how are you doing? What's new?
> Some of whom are
>
> Jacques - how were the scans? On the new chemo? how's the pain?
> Gloria: How's your husband doing? Has your mother had the 2nd liver
> procedure?
> Christine: How's your father doing? How's your friend, Robert doing?
> Stew aka Frank - Are you out there lurking? - I miss hearing from you.
> Elsie lurking?
> Head and neckers: Uncle Sally, Janet, Araik, Clifto, Uncle Sally, Janet
> and more...
>

Humph, we're an "and more" what is this? We have to be in full blown
activity before we get our names mentioned? ;-)

Rob is doing ok. We're scheduled for a MRI through Womack Army hospital
here and then, we, and the results go back to Rob's oncologist to decide
where we go from here. We will be taking a mini vacation at the beach for a
few days. Rob is a water baby. I'm a hillbilly. This makes life
interesting. Right now we go to the beach, someday we'll go back to the
hills. I figure that Rob needs to walk the sand outside our motel and laugh
at the seagulls, pick up shells, avoid jelly fish and so forth. So far it
looks good for the home team. So why is there a hard little knot of fear in
a corner of my tummy?

Pam S

J

How are you doing? How are you coping with the loss of your uncle? How's
your elbow holding up?

Very busy here. Having another procedure done is a few weeks.

Alex

In article <47D134D7.38E885AF@execulink.com>, J <nswex@nalid;no> wrote:

> New people please an intro: a name (instead of xyz234789@gmail) we can
> call you, your type and stage of cancer.
>
> Bob in CA - scans soming up?
Scans Monday. Results later in the week

--
Hey! It compiles. Ship it.


Bob in Central California

"J" <nswex@nalid;no> wrote in message
news:47D134D7.38E885AF@execulink.com...
> New people please an intro: a name (instead of xyz234789@gmail) we can
> call you, your type and stage of cancer.
>
> Previous posters, how are you doing? What's new?
> Some of whom are
>
> Jacques - how were the scans? On the new chemo? how's the pain?
> Gloria: How's your husband doing? Has your mother had the 2nd liver
> procedure?
> Christine: How's your father doing? How's your friend, Robert doing?
> Stew aka Frank - Are you out there lurking? - I miss hearing from you.
> Elsie lurking?
> Head and neckers: Uncle Sally, Janet, Araik, Clifto, Uncle Sally, Janet
> and more...
> Robin - mesothelioma
> Betsy, how are you doing on the new chemo?
> Alayne - got plans for Spring Break
> BJ - What's new
> Jill - thyroid - anyone heard from her?
> Anita - how's it going?
> Anne - ovarian cancer
> Anne (NL) - bladder cancer how are you "Anne's" doing?
> Marc - how'd the marking and information session go?
> Kilikini - tumor still stable?
> Bob in CA - scans soming up?
> Orping - checkup coming for your wife ? How are you both doing?
> Peter Clarke
> Angie - please update
> Raymond
> Dale
> Annie - how's your son?
> Nana - are you out there reading?
> Roland - how's your friend (oral cancer) ?
> SS - how's your husband doing? (colon - liver - Canada)
> Ellen - how's your husband doing (Canada)
> Saima - how's your friend doing?
> Eric and Hans - updates?
>
> The others, please come in, delete the above and update.
> J
>
>
>
I'm Christine. My dad is in remission from non-hodgkins lymphoma, Stage 3b.
He is doing really well. He is checked every 3 months. As for Robert, the
news isn't good. His NSCLC spread to his brain. He was going for radiation
treatments every day. He was constantly in pain from the radiation. I have
never seen anyone look like that. He told me he couldn't take it anymore.
They gave him 6 months with the radiation. But last week he decided that he
didn't want to live out his last days on that stuff, which is causing him
great discomfort. Now we wait, the doctors don't know how long he has. He
doesn't want to know. I see him declining. Forgetting things, and
sometimes he doesn't know who we are at first. He can't walk now. He lays
on the couch. I told my husband that when he begins laying in bed, then
that's probably when he'll leave us. That's how it was with my father in
law. Robert just said the pain wasn't worth it and he's ready to go.
Everything will be taken care of, like Miss Kitty. She will have a great
home to go to. Seeing Robert like this is hard. He wants us there when he
leaves. He said he wants his last memories to be of friends around him.
I'm not taking the kids though. They are crushed that he will die. I went
ahead and told them. Now we just wait. Thanks so much for asking about us.
This is so very hard. But at least he won't have to go through the pain
from the radiation. I will let you know when he leaves us. Thanks again,
Christine.

On Fri, 07 Mar 2008 07:28:07 -0500, J <nswex@nalid;no> , wrote:

>New people please an intro: a name (instead of xyz234789@gmail) we can
>call you, your type and stage of cancer.
>
>Previous posters, how are you doing? What's new?
>Some of whom are
>
>Jacques - how were the scans? On the new chemo? how's the pain?
>Gloria: How's your husband doing? Has your mother had the 2nd liver
>procedure?
>Christine: How's your father doing? How's your friend, Robert doing?
>Stew aka Frank - Are you out there lurking? - I miss hearing from you.
>Elsie lurking?
>Head and neckers: Uncle Sally, Janet, Araik, Clifto, Uncle Sally, Janet
>and more...
>Robin - mesothelioma
>Betsy, how are you doing on the new chemo?
>Alayne - got plans for Spring Break
>BJ - What's new
>Jill - thyroid - anyone heard from her?
>Anita - how's it going?
>Anne - ovarian cancer
>Anne (NL) - bladder cancer how are you "Anne's" doing?
>Marc - how'd the marking and information session go?
>Kilikini - tumor still stable?
>Bob in CA - scans soming up?
>Orping - checkup coming for your wife ? How are you both doing?
>Peter Clarke
>Angie - please update
>Raymond
>Dale
>Annie - how's your son?
>Nana - are you out there reading?
>Roland - how's your friend (oral cancer) ?
>SS - how's your husband doing? (colon - liver - Canada)
>Ellen - how's your husband doing (Canada)
>Saima - how's your friend doing?
>Eric and Hans - updates?
>
>The others, please come in, delete the above and update.
>J
>
Serendipity?
I haven't been here for months but finally got my wife to look at some
of the supporting posts, and those of long term survivors.

First off, we are doing great. Next check up will be early April.

Her BIL with colon cancer is doing very poorly. I do not get proper
details but rather 3rd hand info.

He had been getting experimental treatment weekly intravenous
(injections ?) at the hospital. He went around 8 AM, they tested some
blood and two hours later, based on the test, gave him the treatment
but he usually did not leave before 4 PM.

Half a year ago mets had gone to the liver it grew. They gave him some
other injections, which made him unstable on his feet. About a month
ago they told him two of his lymph node had been affected and that
they would stop giving him any further treatment.
Within two days he seemed to have aged 20 years (had his 75th this
Sunday past). I appears as if he has resigned.

He has a blood clot at an artery rear the stomach and must give
himself daily injections.
(I am wondering if that is the reason why they suspended his weekly
experimental treatment at the hospital.)

I did not get any first hand information and what his wife and
daughter say the oncologist said is contradictory.

If it is true that they told him that he would not get further
treatment I can fully understand that he may think that he is a dead
man walking.

It does not make sense to speculate what is right or wrong so this is
just to unload, not expecting or hoping for any advice.
--
Orping
Wife lobectomy Stage IA 5/04, successful melanoma removal 11/04.

orping@sympatico.ca wrote:

> On Fri, 07 Mar 2008 07:28:07 -0500, J <nswex@nalid;no> , wrote:
> >Previous posters, how are you doing? What's new?
> >Some of whom are
> >
> [ snipped list]
> >Orping - checkup coming for your wife ? How are you both doing?
> [...]
>
> >
> Serendipity?
> I haven't been here for months but finally got my wife to look at some
> of the supporting posts, and those of long term survivors.
>
> First off, we are doing great. Next check up will be early April.
>
> Her BIL with colon cancer is doing very poorly. I do not get proper
> details but rather 3rd hand info.
>
> He had been getting experimental treatment weekly intravenous
> (injections ?) at the hospital. He went around 8 AM, they tested some
> blood and two hours later, based on the test, gave him the treatment
> but he usually did not leave before 4 PM.
>
> Half a year ago mets had gone to the liver it grew. They gave him some
> other injections, which made him unstable on his feet. About a month
> ago they told him two of his lymph node had been affected and that
> they would stop giving him any further treatment.
> Within two days he seemed to have aged 20 years (had his 75th this
> Sunday past). I appears as if he has resigned.
>
> He has a blood clot at an artery rear the stomach and must give
> himself daily injections.
> (I am wondering if that is the reason why they suspended his weekly
> experimental treatment at the hospital.)
>
> I did not get any first hand information and what his wife and
> daughter say the oncologist said is contradictory.
>
> If it is true that they told him that he would not get further
> treatment I can fully understand that he may think that he is a dead
> man walking.
>
> It does not make sense to speculate what is right or wrong so this is
> just to unload, not expecting or hoping for any advice.
> --
> Orping
> Wife lobectomy Stage IA 5/04, successful melanoma removal 11/04.

I'm so sorry to hear about your wife's BIL, Orping.
I think I know some of what you're going through.
A younger fella out this way; the past year was a roller-coaster of incoming
information.
First they were going to operate on his liver, but we wondered why, since
it's in his lungs as well.
Then there was a long delay; then they opened up and closed him up without
doing anything.
And apparently they repeated that more recently.
And now they're saying he has 1- 2 years to live (so methinks must be slower
growing) and I wonder why no liver surgery then? Scratching my head over all
the happenings.

I am so very pleased to see that all goes well with you and your wife.
Best wishes on the upcoming scan.
I do wish there were more people answering the roll and especially lung
cancer survivors.
But hey, we've got Bobert. I think we'll keep him if he'll let us.
And last I heard from Angie, she was going back to work after RT to the
brain.
Her lung cancer is squamous. (if I recall correctly)

I'll be crossing everything crossable for your wife's results.
Best,
J

The Bobert wrote:

> J <nswex@nalid;no> wrote:
>
> > Bob in CA - scans soming up?
> Scans Monday. Results later in the week
> Bob in Central California

Wow, Bob, looking back, it's been 5 years..
I want to hear NED and let the celebrations begin.
Thanks for chiming in.
J - feeling very positive.

Christine wrote:

> As for Robert, the news isn't good. His NSCLC spread to his brain. He was
> going for radiation
> treatments every day. He was constantly in pain from the radiation. I have
> never seen anyone look like that. He told me he couldn't take it anymore.
> They gave him 6 months with the radiation. But last week he decided that he
> didn't want to live out his last days on that stuff, which is causing him
> great discomfort.

Hello Christine,
I wonder if you'd clarify. Pain where? To his back or back of the skull?
On his scalp? Is there blisters?

And is he still on chemo?

http://www.irsa.org/radation_therapy.html
Side effects of radiation therapy will depend on the type of radiation received,
the amount of the surface of the brain targeted, the site targeted, and the
total dose of radiation. In general, there will be hair loss, skin irritation,
possible hearing problems, nausea, vomiting, loss of appetite, and neurologic
effects. The most prevalent side effect is fatigue which may last through
treatment and for many months afterwards. The neurologic effects most affecting
quality of life are eventual permanent memory and speech problems. These are
just a few of the problems that can develop."

I can't remember anyone else having pain as a complaint from WBR (whole brain
radation) except someone who had back pain.. Clarification would be very
helpful. Please and thank you.

I do support his stopping and am sorry about the pain.

I'll reply later to the other parts of your post.

J - looking for input from Steph as well.

In article <47D2F0E3.443E25E4@execulink.com>, J <nswex@nalid;no> wrote:

> The Bobert wrote:
>
> > J <nswex@nalid;no> wrote:
> >
> > > Bob in CA - scans soming up?
> > Scans Monday. Results later in the week
> > Bob in Central California
>
> Wow, Bob, looking back, it's been 5 years..
> I want to hear NED and let the celebrations begin.
> Thanks for chiming in.
> J - feeling very positive.

May 29,'08 will be 5 years.
Jan 10, '08 was my 3 yr NED mark. But whose counting? :=)

--
Hey! It compiles. Ship it.


Bob in Central California

"J" <nswex@nalid;no> wrote in message
news:47D2F566.9A6A5B8E@execulink.com...
> Christine wrote:
>
>> As for Robert, the news isn't good. His NSCLC spread to his brain. He
>> was
>> going for radiation
>> treatments every day. He was constantly in pain from the radiation. I
>> have
>> never seen anyone look like that. He told me he couldn't take it
>> anymore.
>> They gave him 6 months with the radiation. But last week he decided that
>> he
>> didn't want to live out his last days on that stuff, which is causing him
>> great discomfort.
>
> Hello Christine,
> I wonder if you'd clarify. Pain where? To his back or back of the skull?
> On his scalp? Is there blisters?
>
> And is he still on chemo?
>
> http://www.irsa.org/radation_therapy.html
> Side effects of radiation therapy will depend on the type of radiation
> received,
> the amount of the surface of the brain targeted, the site targeted, and
> the
> total dose of radiation. In general, there will be hair loss, skin
> irritation,
> possible hearing problems, nausea, vomiting, loss of appetite, and
> neurologic
> effects. The most prevalent side effect is fatigue which may last through
> treatment and for many months afterwards. The neurologic effects most
> affecting
> quality of life are eventual permanent memory and speech problems. These
> are
> just a few of the problems that can develop."
>
> I can't remember anyone else having pain as a complaint from WBR (whole
> brain
> radation) except someone who had back pain.. Clarification would be very
> helpful. Please and thank you.
>
> I do support his stopping and am sorry about the pain.
>
> I'll reply later to the other parts of your post.
>
> J - looking for input from Steph as well.
>
Hi J. The pain is on the left side of his head. Yes he does have blisters.
He said the headaches (from the tumors) are torment. He told me it was like
having a sunburn times 100. His head is really beet red. One of the things
I didn't mention is that he has 6 tumors in his brain, all on the left side.
He has the biggest one behind his left eye. He is worried that he will lose
his sight in that eye. Could that happen? I told him I would ask you about
this. He was rubbing Vaseline on his head, which he said gave him no
relief. He has very sensitive skin. Also there are blisters over his eye.
This combined with the tumor pressing on it is as much as he can stand. You
see he's been on Morphine and Hydrocodone and Methadone for so long (bad
back injury) that now none of those will help with pain. His tolerance to
the pain meds is really high. Also the left side of his mouth is bothering
him now. He hasn't seen the doctor about that yet because this is something
new. He constantly has an ice bag on that side of his head. Is there
anything we can get for the blisters? Also again, can he go blind in that
eye? Hopefully since he's stopped all treatment, including chemo, maybe he
will feel better in some way. Right now the pain behind his eye and the
blisters are the worst for him. I just got off the phone with him, and he
can only manage to speak for just a minute. I told him I would write and
ask you about the blistering and if he could go blind in that eye. Thanks
so much for caring like you do. We surely appreciate you........Christine

In article <KvDAj.5246$rC6.3362@bignews4.bellsouth.net>,
"Christine" <dontspamme@anon.net> wrote:

> He was rubbing Vaseline on his head, which he said gave him no
> relief. He has very sensitive skin.

Radiation burns are as painful as a 2.9 degree sunburn. Try some spray
sunburn medicine. Solarcaine (sp) is the first that comes to mind.

--
Hey! It compiles. Ship it.


Bob in Central California

"The Bobert" <nobody@nowhere.nowhow> wrote in message
news:nobody-8DE2F5.14183208032008@newsclstr02.news.prodigy.com ...
> In article <KvDAj.5246$rC6.3362@bignews4.bellsouth.net>,
> "Christine" <dontspamme@anon.net> wrote:
>
>> He was rubbing Vaseline on his head, which he said gave him no
>> relief. He has very sensitive skin.
>
> Radiation burns are as painful as a 2.9 degree sunburn. Try some spray
> sunburn medicine. Solarcaine (sp) is the first that comes to mind.
>
> --
> Hey! It compiles. Ship it.
>
>
> Bob in Central California

Thanks a lot Bob. I've seen that at CVS. I will get Robert some. Warmly,
Christine

Christine wrote:

> > Christine wrote:
> >
> >> As for Robert, the news isn't good. His NSCLC spread to his brain. He
> >> was going for radiation treatments every day. He was constantly in pain
> from the radiation.
> Hi J. The pain is on the left side of his head. Yes he does have blisters.
> He said the headaches (from the tumors) are torment. He told me it was like
> having a sunburn times 100. His head is really beet red. One of the things
> I didn't mention is that he has 6 tumors in his brain, all on the left side.
> He has the biggest one behind his left eye. He is worried that he will lose
> his sight in that eye. Could that happen? I told him I would ask you about
> this. He was rubbing Vaseline on his head, which he said gave him no
> relief. He has very sensitive skin. Also there are blisters over his eye.
> This combined with the tumor pressing on it is as much as he can stand. You
> see he's been on Morphine and Hydrocodone and Methadone for so long (bad
> back injury) that now none of those will help with pain. His tolerance to
> the pain meds is really high. Also the left side of his mouth is bothering
> him now. He hasn't seen the doctor about that yet because this is something
> new. He constantly has an ice bag on that side of his head. Is there
> anything we can get for the blisters? Also again, can he go blind in that
> eye? Hopefully since he's stopped all treatment, including chemo, maybe he
> will feel better in some way. Right now the pain behind his eye and the
> blisters are the worst for him. I just got off the phone with him, and he
> can only manage to speak for just a minute. I told him I would write and
> ask you about the blistering and if he could go blind in that eye. Thanks
> so much for caring like you do. We surely appreciate you........Christine

Hello Christine,
Thank you for answering my questions..

I see that Bob mentiooned a productr for the blistering. I hope that helps and
makes a big difference for Robert's pain.

I'm sorry that happened. I just posted a relatively new idea by NCI to
standardize doses of RT; however, since some chemos potentiate RT and some doses
are aimed at cure and some palliative, there may always be problems trying to
standardize RT treatments.

A tumor or tumors in the brain are probably one of the worst to try to predict
what may happen.
Some tumors may be growing in places that cannot (yet) be seen on scans.

I think I'd try an eye patch for two reasons: in case light is worsening the
situation and in addition, get him used to only seeing (and walking or doing)
with only one eye, just in case. Only an hour or two, twice daily and if the
other eye starts developing eyestrain, I'd stop it.

Most of the people I know of who had RT to the brain, mostly got fatigued and
slept more and more. I think Gord's wife become too much for him to lift from
chair to bed and vice versa and/or she was having balance problems, so she was
put in hospital, where they enjoyed their time together, after the adult kids
had gone back home.(they lived far away). And she passed away peacefully (about
a month after the RT), while watching one of their favorite TV programs; he at
her side. On the other hand, one who was a brute (strong and tall), would get
upset about being in the wheelchair and fearful; and became hard to handle. He
had to be sedated and kept in hospital for his and the family's safety; so it
varies. I don't think I'd tell Robert about that since it may differ for him
(or upset him). His doctor and the hospice people, probably know to expect the
unexpected. So the caregivers and/or you friends, I think should keep a log, so
hospice is aware of things you notice and advise the doctor as well.

This seems to be a new list of things noticed before diagnosis
http://www.virtualtrials.com/braintu...tomssurvey.cfm which can also serve
as things that may happen to Robert.
There's mention of pain behind the eye there, but no mention, on that line of
loss of sight. Another line mentions " blind in my left eye and deaf in my left
ear." so you see it varies.

As to his spine (and/or intractible) pain, I was talking with an
anesthesiologist yesterday, who works in a pain clinic. They sometimes give
injections of lidocaiine into the spine. He says it works for many, but not
all. The time the relief lasts may be variable, but I think he mentioned 30
days or more, so it's perhaps something to ask his oncologist (or a pain clinic
expert) about, whether it would help Robert's pain.

He's a brave and tough man and gave it his all. Unfortunately the cancer was too
advanced.
I'm hoping proper palliation will give him a lot of relief and peaceful ending.

Post anyrtime; we'll do the best we can to support.


I am very pleased to hear that your father's in remission.
J

tanadashoes wrote:

> Humph, we're an "and more" what is this? We have to be in full blown
> activity before we get our names mentioned? ;-)
>
> Rob is doing ok. We're scheduled for a MRI through Womack Army hospital
> here and then, we, and the results go back to Rob's oncologist to decide
> where we go from here. We will be taking a mini vacation at the beach for a
> few days. Rob is a water baby. I'm a hillbilly. This makes life
> interesting. Right now we go to the beach, someday we'll go back to the
> hills. I figure that Rob needs to walk the sand outside our motel and laugh
> at the seagulls, pick up shells, avoid jelly fish and so forth. So far it
> looks good for the home team. So why is there a hard little knot of fear in
> a corner of my tummy?
>
> Pam S

Lasts?
Sorry I'm late, Pam.
If you've already left, I hope you have good weather, making fond memories.
Hugs from me.
J - not sure I'm understanding your message.

Marc Bissonnette wrote:

> J <nswex@nalid;no> fell face-first on the keyboard. This was the result:
> news:47D134D7.38E885AF@execulink.com:
> > Marc - how'd the marking and information session go?
>
> Mentioned in the "Happy birthday, Marc" thread, but it went well. Glad I
> went to the info session.
>
> My cancer is malignant metastatic paraganglioma - originally a glomus
> jugulare tumour in the jugular bulb behind the right ear. Cancer had spread
> to the mastoid bone and two lymph nodes. Surgically removed on Dec 18th;
> Right ear canal surgically closed off. Candiate for a bone implanted
> hearing aid when everything is all healed up.
>
> Much more positive outlook to this cancer thing than a month ago

Thanks for joining the roll call, Marc.
What I"ve gone back up the posts to find, is you'll be having RT for 6 weeks.
Start date: yet unknown?
I hope you'll have a chance (and time) to pop in from time to time.
Me : trying to keep track of people. I hate it when people just disappear.
Some of us are worriers. or Imagination runs away with us. or
Don't know if things going bad or exceedingly good and building an Apache, or
run-in with a moose; or cured and flew away iwth princess and family to a
village in Borneo to live the life of Riley.
J

The Bobert wrote:

> J <nswex@nalid;no> wrote:
>
> > The Bobert wrote:
> >
> > > J <nswex@nalid;no> wrote:
> > >
> > > > Bob in CA - scans soming up?
> > > Scans Monday. Results later in the week
> > > Bob in Central California
> >
> > Wow, Bob, looking back, it's been 5 years..
> > I want to hear NED and let the celebrations begin.
> > Thanks for chiming in.
> > J - feeling very positive.
>
> May 29,'08 will be 5 years.
> Jan 10, '08 was my 3 yr NED mark. But whose counting? :=)

Thanks for reminder, Bob.
Whiile following this thread (elsewhere) http://tinyurl.com/3824d9
there's a female claiming 5 year survival for lung cancer. - First name starts with
L
It's a little complicated. First she was dx'd with SCLC (based on MRI?)
Had chemo and RT, then was told it's NSCLC so had surgery.
What is not written (known) is whether she had biopsies both times and/or whether
she had two types of cancer...
I don't see a timeline.
Anyway, it's heartening to hear about longer term lung cancer survivors.
J

J <nswex@nalid;no> fell face-first on the keyboard. This was the result:
news:47D64435.B10CE6ED@execulink.com:

> Marc Bissonnette wrote:
>
>> J <nswex@nalid;no> fell face-first on the keyboard. This was the
>> result: news:47D134D7.38E885AF@execulink.com:
>> > Marc - how'd the marking and information session go?
>>
>> Mentioned in the "Happy birthday, Marc" thread, but it went well.
>> Glad I went to the info session.
>>
>> My cancer is malignant metastatic paraganglioma - originally a glomus
>> jugulare tumour in the jugular bulb behind the right ear. Cancer had
>> spread to the mastoid bone and two lymph nodes. Surgically removed on
>> Dec 18th; Right ear canal surgically closed off. Candiate for a bone
>> implanted hearing aid when everything is all healed up.
>>
>> Much more positive outlook to this cancer thing than a month ago
>
> Thanks for joining the roll call, Marc.
> What I"ve gone back up the posts to find, is you'll be having RT for 6
> weeks. Start date: yet unknown?
> I hope you'll have a chance (and time) to pop in from time to time.
> Me : trying to keep track of people. I hate it when people just
> disappear. Some of us are worriers. or Imagination runs away
> with us. or Don't know if things going bad or exceedingly good
> and building an Apache, or run-in with a moose; or cured and flew away
> iwth princess and family to a village in Borneo to live the life of
> Riley. J

Well, I don't think my cancer is anything that's going to have me on a
death bed any time soon, though the fact that it's in the bone is somewhat
less than comforting. This newsgroup certainly has been a boon in the last
month - Lots of ideas and information that would have taken months to find
on my own.

You seem to be the newsgroup guardian, to whom I see a great many people
offering thanks for all your efforts - I can see from reading about others
and the info you've helped me with that it is most certainly deserved (And
just to be perfectly clear: Thank you, J, for all the help you've given
me!)


--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Marc Bissonnette wrote:

> J <nswex@nalid;no> fell face-first on the keyboard. This was the result:
> news:47D64435.B10CE6ED@execulink.com:
>
> > Marc Bissonnette wrote:
>
> >> My cancer is malignant metastatic paraganglioma - originally a glomus
> >> jugulare tumour in the jugular bulb behind the right ear. Cancer had
> >> spread to the mastoid bone and two lymph nodes. Surgically removed on
> >> Dec 18th; Right ear canal surgically closed off. Candiate for a bone
> >> implanted hearing aid when everything is all healed up.
> >>
> >> Much more positive outlook to this cancer thing than a month ago
> >
> > Thanks for joining the roll call, Marc.
> [..]
>
> Well, I don't think my cancer is anything that's going to have me on a
> death bed any time soon,

me either

> though the fact that it's in the bone is somewhat
> less than comforting.

Yes, but i'm almost 100% they'll take care of it.

> This newsgroup certainly has been a boon in the last
> month - Lots of ideas and information that would have taken months to find
> on my own.
>
> You seem to be the newsgroup guardian, to whom I see a great many people
> offering thanks for all your efforts - I can see from reading about others
> and the info you've helped me with that it is most certainly deserved (And
> just to be perfectly clear: Thank you, J, for all the help you've given
> me!)

You're very welcome, Marc. Anytime, I can help, let me know.
J

"J" <nswex@nalid;no> wrote in message
news:47D480D0.7A7A95C2@execulink.com...
> tanadashoes wrote:
>
>> Humph, we're an "and more" what is this? We have to be in full blown
>> activity before we get our names mentioned? ;-)
>>
>> Rob is doing ok. We're scheduled for a MRI through Womack Army hospital
>> here and then, we, and the results go back to Rob's oncologist to decide
>> where we go from here. We will be taking a mini vacation at the beach
>> for a
>> few days. Rob is a water baby. I'm a hillbilly. This makes life
>> interesting. Right now we go to the beach, someday we'll go back to the
>> hills. I figure that Rob needs to walk the sand outside our motel and
>> laugh
>> at the seagulls, pick up shells, avoid jelly fish and so forth. So far
>> it
>> looks good for the home team. So why is there a hard little knot of fear
>> in
>> a corner of my tummy?
>>
>> Pam S
>
> Lasts?
> Sorry I'm late, Pam.
> If you've already left, I hope you have good weather, making fond
> memories.
> Hugs from me.
> J - not sure I'm understanding your message.
>

Got back from Wilmington North Carolina today. We didn't have the funds to
go, but Mandy got some back money from the VA and since we'd covered her
until the VA money came through, she covered all of us at the ocean.
Tomorrow we go see Rob's primary care physician and get the update on how
his medications for diabetes and seizures are doing. On the 31st Rob gets
his brain examined with an MRI. The cognition problems are gradually
getting worse. Sometimes he looks at me like he's a lost baby. Other
times he gets mad at me because I don't understand him right away. We
muddle through and manage some how. We all really needed the trip. Mandy
says that I have to pay for the next trip. I told her to hold her breath.

The First line of the message was an attempt to be funny. Didn't work,
should have known and deleted it.

Pam S.

tanadashoes wrote:

> "J" <nswex@nalid;no> wrote in message
> > tanadashoes wrote:
> >
> >> Humph, we're an "and more" what is this? We have to be in full blown
> >> activity before we get our names mentioned? ;-)
> >>
> >> Rob is doing ok. We're scheduled for a MRI through Womack Army hospital
> >> here and then, we, and the results go back to Rob's oncologist to decide
> >> where we go from here. We will be taking a mini vacation at the beach
> >> for a
> >> few days. Rob is a water baby. I'm a hillbilly. This makes life
> >> interesting. Right now we go to the beach, someday we'll go back to the
> >> hills. I figure that Rob needs to walk the sand outside our motel and
> >> laugh
> >> at the seagulls, pick up shells, avoid jelly fish and so forth. So far
> >> it
> >> looks good for the home team. So why is there a hard little knot of fear
> >> in
> >> a corner of my tummy?
> >>
> >> Pam S
> >
> > Lasts?
> > Sorry I'm late, Pam.
> > If you've already left, I hope you have good weather, making fond
> > memories.
> > Hugs from me.
> > J - not sure I'm understanding your message.
> >
>
> Got back from Wilmington North Carolina today. We didn't have the funds to
> go, but Mandy got some back money from the VA and since we'd covered her
> until the VA money came through, she covered all of us at the ocean.
> Tomorrow we go see Rob's primary care physician and get the update on how
> his medications for diabetes and seizures are doing. On the 31st Rob gets
> his brain examined with an MRI. The cognition problems are gradually
> getting worse. Sometimes he looks at me like he's a lost baby. Other
> times he gets mad at me because I don't understand him right away. We
> muddle through and manage some how. We all really needed the trip. Mandy
> says that I have to pay for the next trip. I told her to hold her breath.
>
> The First line of the message was an attempt to be funny. Didn't work,
> should have known and deleted it.
>
> Pam S.

Thanks pam,
I'm glad you all got your getaway.
I did get the first line. It was the home team statement I wasn't sure of.

J - catching up to your sense of humor

"J" <nswex@nalid;no> wrote in message
news:47D8EF19.D5FF55CF@execulink.com...
..
>
> Thanks pam,
> I'm glad you all got your getaway.
> I did get the first line. It was the home team statement I wasn't sure of.
>
> J - catching up to your sense of humor
>

Home team = Rob's family. Rob told his doctor today that he gets occasional
numbness in his right arm. It is the first I've heard of it, first anyone
has heard of it. He told me later that it could be from sleeping on the
arm. I'm calling his oncologist tomorrow anyway.

Pam S. worried

tanadashoes wrote:

> "J" <nswex@nalid;no> wrote in message
> > Thanks pam,
> > I'm glad you all got your getaway.
> > I did get the first line. It was the home team statement I wasn't sure of.
> >
> > J - catching up to your sense of humor
> Home team = Rob's family.

Oh, I see. Family dynamics Thanks for clarifying, Pam.

> Rob told his doctor today that he gets occasional
> numbness in his right arm. It is the first I've heard of it, first anyone
> has heard of it. He told me later that it could be from sleeping on the
> arm. I'm calling his oncologist tomorrow anyway.
>
> Pam S. worried

Yes, that seems a plausible explanation but (there) could be others, so best ask
the oncologist.
Take care of you and please keep in touch.
Hugs
J

J wrote:
> New people please an intro: a name (instead of xyz234789@gmail) we can
> call you, your type and stage of cancer.
>
> Previous posters, how are you doing? What's new?

I haven't posted for awhile because I was in the hospital for
26 days to have 2 heart valves and a single artery bypass.
I got a really bad lung infection and other complications
and almost didn't survive. The surgery portion went great,
but the complications came close to killing me.

My surgeon clearly stated that the reason my heart valves
were bad was because they were damaged by the high
energy radiation used on me for Hodgkin's in 1976
when I was 15. Luckily, the energy levels are lower now
because of lessons learned from long time survivors
such as myself. It can take a long time for the side
effects to show up for some of this stuff.

Mark Jones
Still alive and kicking

On Sat, 08 Mar 2008 14:42:21 -0500, J <nswex@nalid;no> , wrote:
>orping@sympatico.ca wrote:
>> On Fri, 07 Mar 2008 07:28:07 -0500, J <nswex@nalid;no> , wrote:
>> >Previous posters, how are you doing? What's new?
>> >Some of whom are
>> [ snipped list]
>> >Orping - checkup coming for your wife ? How are you both doing?
>> [...]
>> Serendipity?
>> I haven't been here for months but finally got my wife to look at some
>> of the supporting posts, and those of long term survivors.
>>
>> First off, we are doing great. Next check up will be early April.
[ snip ]
>> Orping
>> Wife lobectomy Stage IA 5/04, successful melanoma removal 11/04.
>
[ snip ]
>I am so very pleased to see that all goes well with you and your wife.
>Best wishes on the upcoming scan.
>I do wish there were more people answering the roll and especially lung
>cancer survivors.
[ snip ]
>I'll be crossing everything crossable for your wife's results.
>Best,
>J

Thanks, J,

The one year check up visit went the way we were hoping it would go.
"If it is still the same in a year, that will be your last visit !"

My wife is elated and is walking around on a cloud.

The handlig of X-rays has changed a bit here in Toronto. Instead of
takeing last years and the current X-ray to the doctor, this years
came on a CD, for the patient to keep afterwards.
In addition to the front and side view X-rays the CD contained the fax
sent by the radiologist to the thoracic oncologist.
It was comforting to see that he reported that there were no changes
from the X-rays taken in April 2007 and the ones in October 2006.

I offered to email her latest picture to all of her girl friends but
she gracefully declined.

Thank you for your help.
--
Orping
Wife's lobectomy Stage IA 5/04, successful melanoma removal 11/04.

On Sat, 08 Mar 2008 14:42:21 -0500, J <nswex@nalid;no> , wrote:
>orping@sympatico.ca wrote:
>> On Fri, 07 Mar 2008 07:28:07 -0500, J <nswex@nalid;no> , wrote:
[ snip ]
>> Her BIL with colon cancer is doing very poorly. I do not get proper
>> details but rather 3rd hand info.
>>
>> He had been getting experimental treatment weekly intravenous
>> (injections ?) at the hospital. He went around 8 AM, they tested some
>> blood and two hours later, based on the test, gave him the treatment
>> but he usually did not leave before 4 PM.
>>
>> Half a year ago mets had gone to the liver it grew. They gave him some
>> other injections, which made him unstable on his feet. About a month
>> ago they told him two of his lymph node had been affected and that
>> they would stop giving him any further treatment.
>> Within two days he seemed to have aged 20 years (had his 75th this
>> Sunday past). I appears as if he has resigned.
>>
>> He has a blood clot at an artery rear the stomach and must give
>> himself daily injections.
>> (I am wondering if that is the reason why they suspended his weekly
>> experimental treatment at the hospital.)
>>
>> I did not get any first hand information and what his wife and
>> daughter say the oncologist said is contradictory.
>>
>> If it is true that they told him that he would not get further
>> treatment I can fully understand that he may think that he is a dead
>> man walking.
>>
>> It does not make sense to speculate what is right or wrong so this is
>> just to unload, not expecting or hoping for any advice.
>
>I'm so sorry to hear about your wife's BIL, Orping.
>I think I know some of what you're going through.
[ snip ]

Well, he has not been getting any more treatments.
It appears that the colon cancer seems to be holding steady and the
heavy weekly treatments did not effect any improvements.

His GP stopped the medicine that seemed to make him dizzy and he has
been sleeping the last two days without any pills.
Although he is still very frail he finally seems to have gotten his
head around it that he is not a condemned man for stopping the
experimental colon cancer treatment.

He's been asking to come along a few times to have lunch time coffee
with us and he has been up for a couple of hours between naps when
they came over for a mid-afternoon Easter dinner.

A couple of days ago, he went into the garage and charged the battery
of his van. He then drove to the end of the cul-de-sac and back. Later
on he got a real mental boost when he backed his van into the garage
himself when his son was scared to do that after he had taken his dad
for some errands.

I don't know if it is mental or if he has an inner ear problem but he
still walks very slow and deliberately.
It appears as if he has gotten over that mortal depression stage and
getting permission from his doctor to drive again is what he is now
striving for.

We fell it is quite positive and hope for incremental improvements.

>I do wish there were more people answering the roll and especially lung
>cancer survivors.

I said before that I am definitely guilty in not posting but (luckily)
there is nothing to report between doctor visits and even though I
feel good if I am able to help someone, I am not the nurturing kind.

Not being here on a regular basis I don't know automatically how to
separate the chaff from the kernels and I am spending an excessive
time reading and deleting post of people who have nothing to say but
criticizing you.
(I feel sorry for those who's life consist entirely of trying to knock
someone down without trying to build anything themselves.)

>I'll be crossing everything crossable for your wife's results.
>Best,
>J

orping@sympatico.ca wrote:

> On Sat, 08 Mar 2008 14:42:21 -0500, J <nswex@nalid;no> , wrote:
> >orping@sympatico.ca wrote:
>
> >> First off, we are doing great. Next check up will be early April.
>
> [ snip ]
> >I am so very pleased to see that all goes well with you and your wife.
> >Best wishes on the upcoming scan.
> >I do wish there were more people answering the roll and especially lung
> >cancer survivors.
> [ snip ]
> >I'll be crossing everything crossable for your wife's results.
> >Best,
> >J
>
> Thanks, J,
>
> The one year check up visit went the way we were hoping it would go.
> "If it is still the same in a year, that will be your last visit !"

Woohoo ! I am so happy to hear the results.

> My wife is elated and is walking around on a cloud.
>
> The handlig of X-rays has changed a bit here in Toronto. Instead of
> takeing last years and the current X-ray to the doctor, this years
> came on a CD, for the patient to keep afterwards.
> In addition to the front and side view X-rays the CD contained the fax
> sent by the radiologist to the thoracic oncologist.
> It was comforting to see that he reported that there were no changes
> from the X-rays taken in April 2007 and the ones in October 2006.

> I offered to email her latest picture to all of her girl friends but
> she gracefully declined.



> Thank you for your help.
> --
> Orping
> Wife's lobectomy Stage IA 5/04, successful melanoma removal 11/04.

You're welcome Orping, but I didn't do much; it was the GP's actions and the
surgeons who get the credit.
Best of luck. I hope the news is just as good next time, Orping.
Thanks for the update
J

On Fri, 04 Apr 2008 17:30:17 -0500, J <xnswex@nalid;"no> , wrote:
>orping@sympatico.ca wrote:
>> On Sat, 08 Mar 2008 14:42:21 -0500, J <nswex@nalid;no> , wrote:
>> >orping@sympatico.ca wrote:
>> >> First off, we are doing great. Next check up will be early April.
>> [ snip ]
>> >I am so very pleased to see that all goes well with you and your wife.
>> >Best wishes on the upcoming scan.
>> >I do wish there were more people answering the roll and especially lung
>> >cancer survivors.
>> [ snip ]
>> >I'll be crossing everything crossable for your wife's results.
>> >Best,
>> >J
>> Thanks, J,
>> The one year check up visit went the way we were hoping it would go.
>> "If it is still the same in a year, that will be your last visit !"
>
>Woohoo ! I am so happy to hear the results.
>
>> My wife is elated and is walking around on a cloud.
>> The handlig of X-rays has changed a bit here in Toronto. Instead of
>> takeing last years and the current X-ray to the doctor, this years
>> came on a CD, for the patient to keep afterwards.
>> In addition to the front and side view X-rays the CD contained the fax
>> sent by the radiologist to the thoracic oncologist.
>> It was comforting to see that he reported that there were no changes
>> from the X-rays taken in April 2007 and the ones in October 2006.
>> I offered to email her latest picture to all of her girl fr