Check in time? Roll call to alt.support.cancer

There's a bunch of you out there who haven't checked in for quite a while.

Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,
Judy,
Anne (bladder), Anne (ovarian), clifto, how's it going?
kili, well I know how it's going
mlamby37 How's your husband?
echelon? Mark and his mother in law, Lynn and her father (Canada),
Splenda and her husband in Canada,
Hainan, Macy, husband has lung cancer, Cindy and her mother, (how did
your eye surgery go, please?)
Francis (Frank), Frank aka Stew, Lori in Canada who thought her husband
might have meningitis, and so many more of you.
Please check in and let us know how you're doing.
Delete the above and tell us how your feeling and what's new and if things
are ok with you.
J

J wrote in alt.support.cancer:

> echelon?

That's me...

Diagnosed with melanoma in '04, 4 operations between '04 and '06 because
the cancer returned in the lymph channels it was originally removed from
(not very common, but it does happen).

It spread to the lungs in May '06

I've been on chemo every 3 weeks since May and on a clinical trial
drug/placebo twice a day morning & night.

I visit the onc every 3 weeks (same day as chemo) and also have scans
every 6 weeks.

Most recent scan shows the lung tumours are growing, but are still not as
large as when originally found, which suggests the chemo MAY be working
somewhat to stop growth/spread (OK, for the "experts", yes I know chemo
supposedly does nothing to cure or extend life in melanoma, but it seems
to work in 25% of melanoma sufferers for which there is no explanation.
Yes, I know it doesn't save lives, yes, I know there is no proof that it
extends lives, ok?, I do not need your smartarse comments, thanks
anyway).

The tumour has now returned for a 5th time in the same place, same lymph
channels as it did the first 4 times. This suggests that chemo may no
longer be working (may never have worked, OK) given that the lung tumours
are also growing.

So it appears there may be a significant worsening of disease. But I
won't know for 4 weeks, that's when my next scans are.

Yes I'm worried. Not excessively, because I know where this is going to
end up. I accepted that so now I can enjoy myself. There is no "anger" as
some opf the experts here have suggested.

cheers
John

My wife has just finished her second line chemo 9 days ago, although the
Irinotecan is still playing havoc with her guts. That should sort itself out
in a few days hopefully. It's now a little over a year from her diagnosis of
an inoperable stomach cancer and she's doing pretty well.

It's interesting all this stuff about chemotherapy not extending life, if
she didn't have it then there would be no hole left to get food into her
stomach and that would be pretty much the end, so, on the balance of things
we are pretty pro chemo. Mind you, she was a chemo specialist nurse so that
may influence things somewhat.

Quite how long things will continue on an even keel I don't know. We still
plan to do a few things, I think having a goal or two helps keep you going.
Paris in the sports car with the warn wind in her hair (well fuzz) in a week
or so and we are going to have our 24 year old marriage blessed on the 4th
March, a day after her 48th birthday on the 3rd. So, not planning too far
ahead, but in manageable chunks.

I've spent so much time with her over the last year that it really does go
to show that it's an ill wind that blows no good. She is probably the
bravest person I know, never worried about herself, just worried for me and
the kids.

Ian

What a beautiful story you tell of love and devotion. I wish you and your
wife many more years of life together. My thoughts and prayers are with you.
Gail
"Bozz" <NotGiven@BTInternet.com> wrote in message
news:-5-dnRdQaof4ZlDYRVnytgA@bt.com...
> My wife has just finished her second line chemo 9 days ago, although the
> Irinotecan is still playing havoc with her guts. That should sort itself
> out in a few days hopefully. It's now a little over a year from her
> diagnosis of an inoperable stomach cancer and she's doing pretty well.
>
> It's interesting all this stuff about chemotherapy not extending life, if
> she didn't have it then there would be no hole left to get food into her
> stomach and that would be pretty much the end, so, on the balance of
> things we are pretty pro chemo. Mind you, she was a chemo specialist nurse
> so that may influence things somewhat.
>
> Quite how long things will continue on an even keel I don't know. We still
> plan to do a few things, I think having a goal or two helps keep you
> going. Paris in the sports car with the warn wind in her hair (well fuzz)
> in a week or so and we are going to have our 24 year old marriage blessed
> on the 4th March, a day after her 48th birthday on the 3rd. So, not
> planning too far ahead, but in manageable chunks.
>
> I've spent so much time with her over the last year that it really does go
> to show that it's an ill wind that blows no good. She is probably the
> bravest person I know, never worried about herself, just worried for me
> and the kids.
>
> Ian
>

J wrote:
> There's a bunch of you out there who haven't checked in for quite a while.
>
> Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,
> Judy,
> Anne (bladder), Anne (ovarian), clifto, how's it going?

Not much to tell here. Next week I do my three-month precautionary CT scan.
Got some strange muscle cramps in the *front* of my neck, so my regular
doc wants to see that part herself. Other than that, I'm still too fat
and not sassy enough.

--
"Nowadays, security guys break the Mac every single day. Every single day,
they come out with a total exploit, your machine can be taken over totally.
I dare anybody to do that once a month on the Windows machine."
-- Bill Gates, in an interview with Newsweek's Steven Levy

In article <45CCD290.9FF3571D@execulink.com>, J <nexsw@nvalid,anon> wrote:

> There's a bunch of you out there who haven't checked in for quite a while.
>

> Please check in and let us know how you're doing.
> Delete the above and tell us how your feeling and what's new and if things
> are ok with you.
> J

Bob Here.

I was Dx with SCLC on May 29, 2003. My 4th anniversary is coming around in a couple
of months. We were touring the country in our motor-home (caravan)and happened to be
in Denver, CO when I was diagnosed. 2 weeks in the hosp. there until I was stable
enough to come back to Carmel. We drove back to Carmel with the help of a friend who
flew out to help.

both my Rad. Onc and my regular Onc figured I had 6-12 months survival chance. I
fooled them. many months of side effects. I am now NED since Jan '05. They tell me I
can be the poster boy for the hospital's cancer dept. I've been told that only about
1% of sclc patients make it to 3 years from Dx

I've had chemo (Carboplatin and VP-16) as well as Radiation to my chest and to mets
in my brain twice. 18 months of treatment and now 2 years, and counting. of NED.

Last week we rented a larger house and are in the middle of boxes and clutter to take
to the new place. Movers are coming in 2 weeks to take the furniture over. We are
boxing everything else to move ourselves. A monumental task.

CCKMA too. (thanks Frank aka: Stew)
--
Back up my hard disk? I can't find the reverse switch!

Bob in Carmel, CA

"J" <nexsw@nvalid,anon> wrote in message
news:45CCD290.9FF3571D@execulink.com...
> There's a bunch of you out there who haven't checked in for quite a while.
>
> Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,

Hi J,

Still here, not being as vocal as I have in the past but still check in
every day ;-)

For those that don't know me: Hubby Tony was diagnosed with GBM Oct 02,
inoperable, treated with chemo and radiotherapy but sadly passed away Aug
03.

FIL now has lung cancer and just undergone three rounds chemo with
surprisingly no ill effects despite being 74 and having a catalogue of other
medical conditions. He has now just completed five rounds of radiotherapy.
Latest scans after chemo showed "mixed results" but his spirits are very
high but he is quite weary after a week of radiotherapy and hospital trips.

As for myself life rolls on, some days are interesting being a widow with
two daughters (one 15 at end of month, the other 12) and no man in the house
;-)

Having said that I did have to give myself a rather small pat on the back
the other day for job well done. Long story cut short. My eldest and her
mate were down the local park when they noticed a lady had fallen over with
her dogs, there were loads of people around being a busy park but no-one
took any notice. Kelly and her mate went over, helped the woman, not once
but twice and then phoned me as she was concerned that the lady was "drunk".
When I arrived the lady was still making no sense and at first I thought
perhaps she had had a bang to the head, talking further to her, transpires
she is diabetic. We gave her some mars bar but when she still didn't come
round. Called an ambulance and her blood sugar was 1.7! Paramedic very
impressed with the two teenagers and they received a letter from the
Ambulance service thanking them (and a box of chocs a week later from the
lady!) Very chuffed with Kelly ;-)

Just shows that with all that life can throw at you, there are good days too
and whilst we still have an empty hole in our lives and still miss the ole
bugger, with a bit of time and perseverence you can attain some level of
normality.

Now back to the decorating (also just had extension completed for a third
bedroom and whilst I am over the moon with it - lotta hard work ahead ;-)

Warm Hugs to all

Alayne - it's a rollercoaster ride - but make the most of each and every day
and treasure your loved ones.

Hi,
Dad is doing great. he finished all of his radiation just before Christmas
, and a quick check up a couple of weeks ago and now on the wait and see. he
has a MRI sechuled for next week.
He has been trying to lose weight and succeeding by walking and eating
healthy. he is a big man to start with. His color is back and looks
healthier than I have seen him in a long time . He still has some intense
sharp quick headaches but he says it doesn't last long and hopefully the
cancer ( primary sarcoma) isn't showing it's ugly head again.
--
Lynn

"J" <nexsw@nvalid,anon> wrote in message
news:45CCD290.9FF3571D@execulink.com...
> There's a bunch of you out there who haven't checked in for quite a while.
>
> Lynn and her father (Canada),
> Delete the above and tell us how your feeling and what's new and if things
> are ok with you.
> J
>
>

"Gail" <gmpg@earthlink.net> wrote in message
news:X2nzh.22892$w91.22747@newsread1.news.pas.eart hlink.net...
> What a beautiful story you tell of love and devotion. I wish you and your
> wife many more years of life together. My thoughts and prayers are with
> you.
> Gail

Thanks Gail.
I have to say that realistically at the moment we are hoping for months not
years. Never give up hope, just make sure that what you hope for is
achievable.

Ian

The Bobert wrote:

> Bob Here.
>
> I was Dx with SCLC on May 29, 2003. My 4th anniversary is coming around in a couple
> of months.
>
> I've had chemo (Carboplatin and VP-16) as well as Radiation to my chest and to mets
> in my brain twice. 18 months of treatment and now 2 years, and counting. of NED.
>
> Last week we rented a larger house and are in the middle of boxes and clutter to take
> to the new place. Movers are coming in 2 weeks to take the furniture over. We are
> boxing everything else to move ourselves. A monumental task.
>
> CCKMA too. (thanks Frank aka: Stew)

Good luck with the move, Bob. The monumental task can get smaller by getting rid of
clutter instead of moving from house to house.
J

Lynn wrote:

> Dad is doing great. he finished all of his radiation just before Christmas
> , and a quick check up a couple of weeks ago and now on the wait and see. he
> has a MRI sechuled for next week.
> He has been trying to lose weight and succeeding by walking and eating
> healthy. he is a big man to start with. His color is back and looks
> healthier than I have seen him in a long time . He still has some intense
> sharp quick headaches but he says it doesn't last long and hopefully the
> cancer ( primary sarcoma) isn't showing it's ugly head again.

Good to hear from you, Lynn and good luck with MRI next week.
J

clifto wrote:

> J wrote:
> > There's a bunch of you out there who haven't checked in for quite a while.
> >
> > Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,
> > Judy,
> > Anne (bladder), Anne (ovarian), clifto, how's it going?
>
> Not much to tell here. Next week I do my three-month precautionary CT scan.
> Got some strange muscle cramps in the *front* of my neck, so my regular
> doc wants to see that part herself. Other than that, I'm still too fat
> and not sassy enough.

Well, get sassier
Good luck with CT scan, clifto.
J

Bozz wrote:

> Quite how long things will continue on an even keel I don't know. We still
> plan to do a few things, I think having a goal or two helps keep you going.
> Paris in the sports car with the warn wind in her hair (well fuzz) in a week
> or so and we are going to have our 24 year old marriage blessed on the 4th
> March, a day after her 48th birthday on the 3rd. So, not planning too far
> ahead, but in manageable chunks.
>
> I've spent so much time with her over the last year that it really does go
> to show that it's an ill wind that blows no good. She is probably the
> bravest person I know, never worried about herself, just worried for me and
> the kids.

Blessings, Ian.
Here's to warm winds in Paris.
J

john wrote:

> J wrote in alt.support.cancer:
>
> > echelon?
>
> That's me...
>
> Diagnosed with melanoma in '04, 4 operations between '04 and '06 because
> the cancer returned in the lymph channels it was originally removed from
> (not very common, but it does happen).
>
> It spread to the lungs in May '06
>
> I've been on chemo every 3 weeks since May and on a clinical trial
> drug/placebo twice a day morning & night.
>
> I visit the onc every 3 weeks (same day as chemo) and also have scans
> every 6 weeks.
>
> Most recent scan shows the lung tumours are growing, but are still not as
> large as when originally found, which suggests the chemo MAY be working
> somewhat to stop growth/spread (OK, for the "experts", yes I know chemo
> supposedly does nothing to cure or extend life in melanoma, but it seems
> to work in 25% of melanoma sufferers for which there is no explanation.
> Yes, I know it doesn't save lives, yes, I know there is no proof that it
> extends lives, ok?, I do not need your smartarse comments, thanks
> anyway).
>
> The tumour has now returned for a 5th time in the same place, same lymph
> channels as it did the first 4 times. This suggests that chemo may no
> longer be working (may never have worked, OK) given that the lung tumours
> are also growing.
>
> So it appears there may be a significant worsening of disease. But I
> won't know for 4 weeks, that's when my next scans are.
>
> Yes I'm worried. Not excessively, because I know where this is going to
> end up. I accepted that so now I can enjoy myself. There is no "anger" as
> some opf the experts here have suggested.

okay John,
No smartarse comments.
Thanks for being here and answering the roll call.
J

Alayne wrote:

> For those that don't know me: Hubby Tony was diagnosed with GBM Oct 02,
> inoperable, treated with chemo and radiotherapy but sadly passed away Aug
> 03.
>
> FIL now has lung cancer and just undergone three rounds chemo with
> surprisingly no ill effects despite being 74 and having a catalogue of other
> medical conditions. He has now just completed five rounds of radiotherapy.
> Latest scans after chemo showed "mixed results" but his spirits are very
> high but he is quite weary after a week of radiotherapy and hospital trips.
>
> Just shows that with all that life can throw at you, there are good days too
> and whilst we still have an empty hole in our lives and still miss the ole
> bugger, with a bit of time and perseverence you can attain some level of
> normality.
>
> Now back to the decorating (also just had extension completed for a third
> bedroom and whilst I am over the moon with it - lotta hard work ahead ;-)

Cheers to Kelly and Alayne for saving the diabetic.
It's good to hear your FIL's coping so well.
The "ole bugger" would be very proud of all of you.
Hugs to you all, Alayne.
Now back to the decorating (fun?)
J

On Fri, 09 Feb 2007 14:59:12 -0500, J <nexsw@nvalid,anon> wrotF:

>There's a bunch of you out there who haven't checked in for quite a while.
>
>Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,
>Judy,
>Anne (bladder), Anne (ovarian), clifto, how's it going?
>kili, well I know how it's going
>mlamby37 How's your husband?
>echelon? Mark and his mother in law, Lynn and her father (Canada),
>Splenda and her husband in Canada,
>Hainan, Macy, husband has lung cancer, Cindy and her mother, (how did
>your eye surgery go, please?)
>Francis (Frank), Frank aka Stew, Lori in Canada who thought her husband
>might have meningitis, and so many more of you.
>Please check in and let us know how you're doing.
>Delete the above and tell us how your feeling and what's new and if things
>are ok with you.
>J
>


Joe here. I went through a living hell in Dec/Jan. Tumors spread to
4 vertebrae and gave me unbearable pain. Upped dosage of oxycontin to
80 mg 2X day with 60 mg oxycodone as break-through pain med. That
began to help some, but nowhere near the help I needed. Lost 20 lbs -
no appetite. Brought in a pain management team - recommended
radiation of lower vertebrae. Gave me a 10X shot. No change, but then
about 6 days afterwards, I noticed some moderation and within 3 more
days, most of the pain was gone. Thank God. I'm still on the oxy. In
a week or so I start a clinical trial which is very intensive. For all
practical purposes I will be living at the hospital for a month.
Latest PET scan show considerable growth of all tumors and some new
ones in lungs.
I'm being active though, as long as I'm pain-free. Doing work around
the house, getting things in order, preparing for the inevitable...
not in a woe is me way though. I'm just wanting there to be no
problems later on. I'm proud of the way the house is coming along -
finishing up the basement, turning it into a home-based hospital room
of sorts.

--
Save the earth. It's the only planet with chocolate and Starbucks!!
BetsyB

"46erjoe" <somebody@spamless.net> wrote in message
news:gihus25uq53ehal1tqeuflh6f5fvi5805e@4ax.com...
> On Fri, 09 Feb 2007 14:59:12 -0500, J <nexsw@nvalid,anon> wrotF:
>
>>There's a bunch of you out there who haven't checked in for quite a while.
>>
>>Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,
>>Judy,
>>Anne (bladder), Anne (ovarian), clifto, how's it going?
>>kili, well I know how it's going
>>mlamby37 How's your husband?
>>echelon? Mark and his mother in law, Lynn and her father (Canada),
>>Splenda and her husband in Canada,
>>Hainan, Macy, husband has lung cancer, Cindy and her mother, (how did
>>your eye surgery go, please?)
>>Francis (Frank), Frank aka Stew, Lori in Canada who thought her husband
>>might have meningitis, and so many more of you.
>>Please check in and let us know how you're doing.
>>Delete the above and tell us how your feeling and what's new and if things
>>are ok with you.
>>J
>>
>
>
> Joe here. I went through a living hell in Dec/Jan. Tumors spread to
> 4 vertebrae and gave me unbearable pain. Upped dosage of oxycontin to
> 80 mg 2X day with 60 mg oxycodone as break-through pain med. That
> began to help some, but nowhere near the help I needed. Lost 20 lbs -
> no appetite. Brought in a pain management team - recommended
> radiation of lower vertebrae. Gave me a 10X shot. No change, but then
> about 6 days afterwards, I noticed some moderation and within 3 more
> days, most of the pain was gone. Thank God. I'm still on the oxy. In
> a week or so I start a clinical trial which is very intensive. For all
> practical purposes I will be living at the hospital for a month.
> Latest PET scan show considerable growth of all tumors and some new
> ones in lungs.
> I'm being active though, as long as I'm pain-free. Doing work around
> the house, getting things in order, preparing for the inevitable...
> not in a woe is me way though. I'm just wanting there to be no
> problems later on. I'm proud of the way the house is coming along -
> finishing up the basement, turning it into a home-based hospital room
> of sorts.
>
>

You are very impressive, my friend. Hang on and make em drag you out
yelling! Good on ya!!

I have to schedule another PET scan. Gallbladder was a momma and much more
that I expected, pain wise. I am hoping I can lie on that skinny bed for the
time required for that scan. Will keep you posted.
Do your best and no one can ask for more.

Betsy

"Bozz" <NotGiven@BTInternet.com> wrote in
news:-5-dnRdQaof4ZlDYRVnytgA@bt.com:

> My wife has just finished her second line chemo 9 days ago, although
> the Irinotecan is still playing havoc with her guts. That should sort
> itself out in a few days hopefully. It's now a little over a year from
> her diagnosis of an inoperable stomach cancer and she's doing pretty
> well.
>
> It's interesting all this stuff about chemotherapy not extending life,
> if she didn't have it then there would be no hole left to get food
> into her stomach and that would be pretty much the end, so, on the
> balance of things we are pretty pro chemo. Mind you, she was a chemo
> specialist nurse so that may influence things somewhat.
>
> Quite how long things will continue on an even keel I don't know. We
> still plan to do a few things, I think having a goal or two helps keep
> you going. Paris in the sports car with the warn wind in her hair
> (well fuzz) in a week or so and we are going to have our 24 year old
> marriage blessed on the 4th March, a day after her 48th birthday on
> the 3rd. So, not planning too far ahead, but in manageable chunks.
>
> I've spent so much time with her over the last year that it really
> does go to show that it's an ill wind that blows no good. She is
> probably the bravest person I know, never worried about herself, just
> worried for me and the kids.
>
> Ian
>
We happened to be in Paris on one of the anniversaries of Sock's
diagnosis. I suggested we go light a candle in the Notre Dame on that
day. Socks was not religous at all, but that ceremony appealed to him &
he kept asking when we could go over there. It was a powerful thing to
do, good memory.

Fig

Frank (aka) "STew" DX with Non Hodgkin Lymphoma stage 4 in Feb. 2003?
Six rounds of CHOP+R and in remission since next CAT/ PET is Wednesday
14 February wish me luck. I keep prowling around here still looking
for the opportunity to through my 2 cents in.
Well gotta go early to rise its the job of a domain administrator.


Frank (AKA) "STEW"
Oopps almost forgot [CCKMA] Cancer Can Kiss My Ass

Everyone take care and keep up the good fight may you all be blessed
and stay that way.

On Fri, 09 Feb 2007 14:59:12 -0500, J <nexsw@nvalid,anon> wrote:

>There's a bunch of you out there who haven't checked in for quite a while.
>
>Bronny, Bozz, Carlisle, Deck, Joe, Araik, Ipunty, JW, Maryanne, Alayne,
>Judy,
>Anne (bladder), Anne (ovarian), clifto, how's it going?
>kili, well I know how it's going
>mlamby37 How's your husband?
>echelon? Mark and his mother in law, Lynn and her father (Canada),
>Splenda and her husband in Canada,
>Hainan, Macy, husband has lung cancer, Cindy and her mother, (how did
>your eye surgery go, please?)
>Francis (Frank), Frank aka Stew, Lori in Canada who thought her husband
>might have meningitis, and so many more of you.
>Please check in and let us know how you're doing.
>Delete the above and tell us how your feeling and what's new and if things
>are ok with you.
>J
>

>>
> We happened to be in Paris on one of the anniversaries of Sock's
> diagnosis. I suggested we go light a candle in the Notre Dame on that
> day. Socks was not religous at all, but that ceremony appealed to him &
> he kept asking when we could go over there. It was a powerful thing to
> do, good memory.
>
> Fig
>

We always go to Sacre Coeur de Monmartre and light a candle for our nephew
who died of leukaemia a few years ago. This year we'll be there lighting
two. I'm not religious but I do find churches peaceful places and it's nice
to remember those who have left us in a way they would have appreciated.
Sacre Coeur is very beautiful place with such a great view of Paris.

Ian

46erjoe wrote:

> On Fri, 09 Feb 2007 14:59:12 -0500, J wrotF:
> >Please check in and let us know how you're doing.
>
> Joe here. I went through a living hell in Dec/Jan. Tumors spread to
> 4 vertebrae and gave me unbearable pain. Upped dosage of oxycontin to
> 80 mg 2X day with 60 mg oxycodone as break-through pain med. That
> began to help some, but nowhere near the help I needed. Lost 20 lbs -
> no appetite. Brought in a pain management team - recommended
> radiation of lower vertebrae. Gave me a 10X shot. No change, but then
> about 6 days afterwards, I noticed some moderation and within 3 more
> days, most of the pain was gone. Thank God. I'm still on the oxy. In
> a week or so I start a clinical trial which is very intensive. For all
> practical purposes I will be living at the hospital for a month.
> Latest PET scan show considerable growth of all tumors and some new
> ones in lungs.
> I'm being active though, as long as I'm pain-free. Doing work around
> the house, getting things in order, preparing for the inevitable...
> not in a woe is me way though. I'm just wanting there to be no
> problems later on. I'm proud of the way the house is coming along -
> finishing up the basement, turning it into a home-based hospital room
> of sorts.

You've been missed, Joe (by me and others here) and will be missed while in
clinical trial.
Thank God the RT helped the pain.
You've lots to be proud of.
We'll be here thinking of you and hoping to hear from you soon.
J

"Frank (aka) \"Stew\"" wrote:

> Frank (aka) "STew" DX with Non Hodgkin Lymphoma stage 4 in Feb. 2003?
> Six rounds of CHOP+R and in remission since next CAT/ PET is Wednesday
> 14 February wish me luck. I keep prowling around here still looking
> for the opportunity to through my 2 cents in.
> Well gotta go early to rise its the job of a domain administrator.
>
> Frank (AKA) "STEW"
> Oopps almost forgot [CCKMA] Cancer Can Kiss My Ass
>
> Everyone take care and keep up the good fight may you all be blessed
> and stay that way.

Must have been Feb 2004, Frank.
You had your fourth round of chemo in June, 2004.
Always good to hear from you and fingers crossed for continued health and the
upcoming scan.
Take care,
J

On Mon, 12 Feb 2007 04:57:17 -0500, J <nexsw@nvalid,anon> wrotF:

>46erjoe wrote:
>
>> On Fri, 09 Feb 2007 14:59:12 -0500, J wrotF:
>> >Please check in and let us know how you're doing.
>>
>> Joe here. I went through a living hell in Dec/Jan. Tumors spread to
>> 4 vertebrae and gave me unbearable pain. Upped dosage of oxycontin to
>> 80 mg 2X day with 60 mg oxycodone as break-through pain med. That
>> began to help some, but nowhere near the help I needed. Lost 20 lbs -
>> no appetite. Brought in a pain management team - recommended
>> radiation of lower vertebrae. Gave me a 10X shot. No change, but then
>> about 6 days afterwards, I noticed some moderation and within 3 more
>> days, most of the pain was gone. Thank God. I'm still on the oxy. In
>> a week or so I start a clinical trial which is very intensive. For all
>> practical purposes I will be living at the hospital for a month.
>> Latest PET scan show considerable growth of all tumors and some new
>> ones in lungs.
>> I'm being active though, as long as I'm pain-free. Doing work around
>> the house, getting things in order, preparing for the inevitable...
>> not in a woe is me way though. I'm just wanting there to be no
>> problems later on. I'm proud of the way the house is coming along -
>> finishing up the basement, turning it into a home-based hospital room
>> of sorts.
>
>You've been missed, Joe (by me and others here) and will be missed while in
>clinical trial.
>Thank God the RT helped the pain.
>You've lots to be proud of.
>We'll be here thinking of you and hoping to hear from you soon.
>J



Here are some things I am doing to tailor make the room:

Large 36" doorways - to bring equipment in and out, eg hosp bed.

Fan forced fresh air source to bring outside air into the bedroom and
then out a vent to the outside. I figure it may get kinda rank in
there at times.

Sit down shower with lotsa grab bars

Cable TV line in bedroom - I'll like Star Trek Voyager til the day I
die : - )

Set up wireless internet throught the house. So I can keep up with you
guys of course! And surf the net.

Using acoustic ceiling tile to keep things a bit quieter in my room.

The bedroom is adjacent to a large family room with 50" LCD TV where
my family could hang out as they visit me.


It's been fun planning this and when it's all over with, my wife will
have a much more valuable piece of real estate.

I'll keep in touch as I am able. Thanks for the kindness.

46erjoe wrote:

> On Mon, 12 Feb 2007 wrotF:
>
> >46erjoe wrote:
>
> >> I'm being active though, as long as I'm pain-free. Doing work around
> >> the house, getting things in order, preparing for the inevitable...
> >> not in a woe is me way though. I'm just wanting there to be no
> >> problems later on. I'm proud of the way the house is coming along -
> >> finishing up the basement, turning it into a home-based hospital room
> >> of sorts.
> Here are some things I am doing to tailor make the room:
>
> Large 36" doorways - to bring equipment in and out, eg hosp bed.
>
> Fan forced fresh air source to bring outside air into the bedroom and
> then out a vent to the outside. I figure it may get kinda rank in
> there at times.
>
> Sit down shower with lotsa grab bars
>
> Cable TV line in bedroom - I'll like Star Trek Voyager til the day I
> die : - )
>
> Set up wireless internet throught the house. So I can keep up with you
> guys of course! And surf the net.
>
> Using acoustic ceiling tile to keep things a bit quieter in my room.
>
> The bedroom is adjacent to a large family room with 50" LCD TV where
> my family could hang out as they visit me.
>
> It's been fun planning this and when it's all over with, my wife will
> have a much more valuable piece of real estate.

No doubt, Joe. Thanks for the list (see below)

> I'll keep in touch as I am able.

A way to be in touch while you're in hospital? Laptop? and/or using Google?
If so, don't bother reading other posts, threads.
Watch for pings or rollcall or just start a new post and we'll run with it.
(whatever's easiest for you).

May I assume there's the following downstairs ?:
laundry area?
small refrigerator and cooktop
a cork or slate medicine schedule board?

A "baby monitor" type set up where you and wifey can communicate between floors
with each other?
I can't think of anything else, at the moment, so you must have done a bangup
job.
Watch for others who might think of something we haven't.
J

On Feb 12, 12:12 pm, J <nexsw@nvalid,anon> wrote:
> 46erjoe wrote:
> > On Mon, 12 Feb 2007 wrotF:
>
> > >46erjoe wrote:
>
> A "baby monitor" type set up where you and wifey can communicate between floors
> with each other?
> I can't think of anything else, at the moment, so you must have done a bangup
> job.
> Watch for others who might think of something we haven't.
> J- Hide quoted text -
>
> - Show quoted text -

The baby monitor hospice loaned us was a one-way communication thing.
It worked well for what it did & Socks didn't have to fiddle with
anything for me to hear him. But he couldn't hear me through it & the
units plugged in so were somewhat stationary. Maybe there are
different kinds.

We also have a pair of walkie talkies with an astounding range. Those
were best for 2-way communication, but you'd have to feel like & be
lucid enough to push speak buttons & sometimes search for clear
channels.

Each has its uses, I'd say.

I've been thinking of you & bet you're glad you're not in the Daks
with this snow. It could be slow sledding there.

Take care of yourself. It's amazing to me that you can do all that
work. Am so glad to hear the pain resolved. That's major.
Interesting that the pain took awhile to resolve. That info could be
useful to others using RT for pain control.

Many hugs,
Fig

"J" <nexsw@nvalid,anon> wrote in message
news:45CF67CB.F530FBE4@execulink.com...
> john wrote:
>
>> J wrote in alt.support.cancer:
>>
>> > echelon?
>>
>> That's me...
>>
>> Diagnosed with melanoma in '04, 4 operations between '04 and '06 because
>> the cancer returned in the lymph channels it was originally removed from
>> (not very common, but it does happen).
>>
>> It spread to the lungs in May '06
>>
>> I've been on chemo every 3 weeks since May and on a clinical trial
>> drug/placebo twice a day morning & night.
>>
>> I visit the onc every 3 weeks (same day as chemo) and also have scans
>> every 6 weeks.
>>
>> Most recent scan shows the lung tumours are growing, but are still not as
>> large as when originally found, which suggests the chemo MAY be working
>> somewhat to stop growth/spread (OK, for the "experts", yes I know chemo
>> supposedly does nothing to cure or extend life in melanoma, but it seems
>> to work in 25% of melanoma sufferers for which there is no explanation.
>> Yes, I know it doesn't save lives, yes, I know there is no proof that it
>> extends lives, ok?, I do not need your smartarse comments, thanks
>> anyway).
>>
>> The tumour has now returned for a 5th time in the same place, same lymph
>> channels as it did the first 4 times. This suggests that chemo may no
>> longer be working (may never have worked, OK) given that the lung tumours
>> are also growing.
>>
>> So it appears there may be a significant worsening of disease. But I
>> won't know for 4 weeks, that's when my next scans are.
>>
>> Yes I'm worried. Not excessively, because I know where this is going to
>> end up. I accepted that so now I can enjoy myself. There is no "anger" as
>> some opf the experts here have suggested.
>
> okay John,
> No smartarse comments.
> Thanks for being here and answering the roll call.
> J
>
>
>

Going to take a break for awhile. I just dont feel like talking, dont feel
like talking about this or anything else right now and just need to focus on
getting things in order around the house it seems. My cousin said " you
feel like you have no control over what is going on right now, so putting
the house in order makes sense to you, being the control freak you
are........" Hmmmm guess she is right? I am grumpy and short tempered gee
thanks to the steroids, so I think I am preferring my own company more right
now. Seems I cant have a conversation with anyone without me being bitchy
or hurting them.............so I will check in sometime soon, just needing
some space. God Bless you all and ((((((((( HUGS ))))))))))

Angie

Here's my update:

After 5 treatments of Taxol/Carbo for recurrent ovarian cancer (it returned
after 6 years), they decided it wasn't doing anything, and the doctor was
"out of ideas." She seems fairly clueless about treating someone who still
has a tumor inside (the surgeon found it "impossible" to debulk last August
due to the organs, etc it is stuck to).

I went to MSKCC for a second opinion in January with the OC big wig there.
I liked him. He recommends Doxil every 4 weeks, plus an estrogen blocker
(armidex). I have started the first Doxil this week, and will start the
armidex a few weeks from now. I have to say the potential side effects for
both drugs (especially the cardio-toxicity for Doxil, and the osteoporosis,
hot-flashes, and bone pain for arimidex scare me a lot).

The various indignities and pain of the chemo process continue to get to me,
especially the waiting (7 hours at the cancer center for a 2 hour treatment)
and the stuff with my medi-port (hard for most people to access it).

I've been hospitalized twice since August for wound infections - the
surgical wound from August never closed completely, and there are draining
fistula that still need to be dressed and tended all these months later.
The surgeon says they will likely never close until/unless the chemo starts
working - at the drainage is really the tumor itself weeping.

Finally, my mother, who had been my biggest support up to now, suffered a
stroke during my last hospitalization, so that has been a lot to deal with
as well.

Anne wrote:

> Here's my update:
>
> After 5 treatments of Taxol/Carbo for recurrent ovarian cancer (it returned
> after 6 years), they decided it wasn't doing anything, and the doctor was
> "out of ideas." She seems fairly clueless about treating someone who still
> has a tumor inside (the surgeon found it "impossible" to debulk last August
> due to the organs, etc it is stuck to).
>
> I went to MSKCC for a second opinion in January with the OC big wig there.
> I liked him. He recommends Doxil every 4 weeks, plus an estrogen blocker
> (armidex). I have started the first Doxil this week, and will start the
> armidex a few weeks from now. I have to say the potential side effects for
> both drugs (especially the cardio-toxicity for Doxil, and the osteoporosis,
> hot-flashes, and bone pain for arimidex scare me a lot).
>
> The various indignities and pain of the chemo process continue to get to me,
> especially the waiting (7 hours at the cancer center for a 2 hour treatment)
> and the stuff with my medi-port (hard for most people to access it).
>
> I've been hospitalized twice since August for wound infections - the
> surgical wound from August never closed completely, and there are draining
> fistula that still need to be dressed and tended all these months later.
> The surgeon says they will likely never close until/unless the chemo starts
> working - at the drainage is really the tumor itself weeping.
>
> Finally, my mother, who had been my biggest support up to now, suffered a
> stroke during my last hospitalization, so that has been a lot to deal with
> as well.

Good to hear from you again, Anne, although I'm sorry to hear about your
mother's stroke.
Is she badly affected?

Unfortunate about the surgical wound not closing.
Take care and good luck with the new regimen.
J

J, here I am checking in! Days are busy, caregiving for Ken, sometimes
it is difficult to get some time alone, (but I do try.)

Today was a good day. Got myself a haircut, and picked up some items at
Publix.

The bad days? Don't ask!

maryanne kehoe wrote:

> J, here I am checking in! Days are busy, caregiving for Ken, sometimes
> it is difficult to get some time alone, (but I do try.)
>
> Today was a good day. Got myself a haircut, and picked up some items at
> Publix.
>
> The bad days? Don't ask!

Jolly good that you took some time out for you, MaryAnne.
* HUGS *
J

Tue, 20 Feb 2007 maryanne kehoe wrote:

> J, here I am checking in! Days are busy, caregiving for Ken, sometimes
> it is difficult to get some time alone, (but I do try.)

How are you and ken doing?
Hugs
J