Re: [MOL] Vicci! RE RICH To RUTH BASS AND ALL MOLers [01193] Medicine On Line


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Re: [MOL] Vicci! RE RICH To RUTH BASS AND ALL MOLers



Hi Everyone,
I didn't get right back to you like I said I would but we got an earful at
the Dr. appt. on Thursday and I guess Erica, his dad and I have been trying
to comprehend just what was said.  
Rich had his blood work done and then we saw the Dr.  She checked Rich out
and he thought a bump that has been growing from a pea size to a nickel
size had shrunk a little.  Rich then told the doc that he wanted to go do
his chime and for her to answer all Erica and my questions.  
With Rich still in a lot of pain, Dr. said that the chime with leucovorin
and Camptosar didn't seem to be working or Rich wouldn't be so painful. 
She also told us that the bump didn't appear to her to be reducing.  The
doc also noted that Rich did not want to hear any bad news.  She
appreciates that and is very willing to talk to us.  We just have not had a
dr. appt. with her since he got out of the hospital ( after the VAT, which
showed small dots on his right lung and involvement in the chest wall)  
We asked her about the CA255 testing with Dr. Rubin in Florida.  She said
we need to get ahold of the ImClone people who is (are) making the drug.  I
fired off an e-mail to them on Friday.  But someone on this list said to
write to Dr. Rubin himself and I will do that today.  
By Rich not responding to the chemo, I asked the dr. if Rich had a year. 
She shook her head no.  I asked if he had 6 months and she said, "If that".
 I appreciated her honesty as Erica, dad and I needed to know somewhat of a
time frame.  I'm not going on that assumption as I've learned from you all
that life takes funny little turns when it's wants or needs to.  I still
have hope and Erica is the main caregiver and just won't think in those
terms.  Bless her little heart, she is just the BEST at taking care of
Rich.  She gives him his pills, and  honestly goes out of her way to make
sure he is comfortable, while taking care of her 1 and 5 year olds.  The
house is tidy and food on the table everynight.  What a girl.  I cook on
the week ends and watch one or both of the kids whenever I can so that
helps her.  The Camptosar is making Rich nauseous but the pain level in the
last couple of days has not been so intense.  Sooooo, we are thinking that
MAYBE the chemo is starting to work.  Even though the doc said it should
have started working immediately.  Rich has not worked like the doctors
thought from the beginning.  The dr. also is giving him a head scan as we
told her he stays very busy.  Rearranging his tool box several times a day
to starting many projects all at once.  We thought it was the drugs but
obviously she thinks a tumor(s) might be pressing on some brain part.  We
hadn't thought of that.  Sure hope not.  
Dr. also is having a morphine pump installed in his spinal column by the
anesthiesialogist (sp), on Tuesday.  This scares the hell out of me as it
tells me we are more at the end of this journey that I want to be.  We are
trying to get Rich to tell us if the pain is getting better because it
would be better not to have the pump if the chemo is starting to work.  I
told him what the dr. said about the chemo not working and that I've sent
an e-mail to the ImClone people.  He appreciates that we are trying to do
all that we can for him.  But we don't want him in pain either.  I'm
thinking the drugs he's on keeps him from thinking too much about the end
result.  So what happens when they install the pump and he starts feeling
better and not so groggy.  How will he be able to cope with what's
inevitable?  God, I can't stand thinking about what must be going on in his
mind?  And I know he can't stand thinking about what we are going thru.  I
just keep telling Erica, John and myself......take one day at a time, one
hour if that doesn't work.  
Ruth, thank you for answering my questions.  We were going to talk to the
doc about the pump but it was her idea before we could.  I'm so happy that
you and hubby will be able to travel to the British Isles soon.  That just
must be the best medicine for both of you.  I'm sure I'll talk to you
before you go but if not ENJOY yourselves and be free for those two weeks. 
Give him a hug from me and one for yourself.  
Take care everyone and I'll write when I can,
Love Vicci
 

----------
From: Ruth Bass <rbass@cunardmail.com>
To: mol-cancer@lists.meds.com
Subject: Re: [MOL] Vicci!  RE    RICH
Date: Thursday, May 25, 2000 8:31 PM

Dear Vicci:

I know how frightening all of this is; I have what I call "middle of the
night" thoughts that I try to put out of my mind.  At first, I asked a lot
of questions and was so frustrated by the lack of answers from the doctors.
 I now realize that they do not have the answers to my questions.

My husband was diagnosed with colon cancer in July of 97.  At that time,
the surgeon thought that they had gotten it all.  Just in case, Robert went
through 12 months of chemo - 5FU.  In November of 98, his CEA went up; a
colonoscopy confirmed that he had another tumor right where the first one
was.  Also, he had two very small spots on his lung and one spot on his
liver.

While we were on vacation in Nov 98, he started to have severe pain in his
groin.  His urologist diagnosed it as epididimitis (sp?), and removed what
he thought was causing the pain during the cancer operation.  This surgery
did not do anything for the pain.  We were sent to a pain clinic for
treatment, but nothing worked, and the pain continued to increase.  All
this time, we were told that this pain did not have anything to do with the
cancer.

In Feb of 2000, Robert underwent exploratory surgery for intestinal
blockage;  it was discovered that the cancer had invaded the bowel wall. 
Also, the surgeon was able to see that the lymph node was very enlarged. 
The pain was probably caused by the node pressing on nerves in this area. 
At that time, Robert started on oral morphine - about 300 mg a day.  It
took care of the pain, but he really could not function because of the side
effects.  He sat in a chair all day, and even slept in the chair.

In March, Robert had a morphine pump installed.  It administers a small
amount of morphine directly into the spinal cord.  Right now the dosage is
.125 mg a day, with no side effects.  His quality of life is 100% better. 
He is 65, much older than Rich, but his stamina is greatly improved.  We
love to travel, and in January I thought our traveling days were over.  In
2  weeks, we will leave for a two week cruise of the British Isles.

Our onc explains it to us this way:  He will aggressively try all therapies
until we tell him to stop in the hope that some new treatment will become
available.  In the meantime, we are taking advantage of every day.  Many
studies have proven that chronic pain can shorten life expectancy.  I hope
that you will aggressively treat this symptom.  I don't think that it is
really important to find out exactly what is causing the pain; just find a
doctor that understands that getting rid of the pain is important.

I hope that I have answered some of your questions.  If you want more
specific information, let me know.

My prayers are with you.
Ruth

>>> vicci@wave.net 05/25/00 12:32PM >>>
Dear Ruth,
We (Erica, Rich and myself) were just wondering why he is in so much pain.
The lymph node involvement is probably the answer.  Rich was just asking
us,"Is this cancer growing all thru me and causing all this pain?"  We just
didn't know that was a possibility.  We are very new to this as everyone
was just hoping and praying that the first round of chemo and radiation
would kick it out of his body.  We are soooooo full of questions and no one
is answering our questions head on.  They (nurses, hospice, dr's. etc)
don't seem to know or won't tell us what's going on in his body.  That will
definitely be one of our questions to the Dr. today.  As long as I have
been on this MOL line I really don't remember hearing about how this cancer
works inside the body.  It just progresses or people get better, I guess. 
We hope, wish, pray for the better for everyone and take strength from each
other.  That's pretty awesome in itself.  
Ruth, can you tell me more about husband?  When was he diagnosed, was it
adenocarcinoma of the colon, what has happened thru his cancer journey?
How do you hold up?  What options were given to him as far as how the
cancer would be treated?  And anything else you think I would find helpful.
I've latched onto you now girl.  I guess I'm looking for a guiding force
and I'll be picking brains all over this MOL list.  You take care and I'll
write later today to let you all know what we've found out.  Love Vicci

----------
From: Ruth Bass <rbass@cunardmail.com>
To: mol-cancer@lists.meds.com 
Subject: Re: [MOL] Vicci!  RE    RICH
Date: Wednesday, May 24, 2000 5:29 AM

Dear Vicci:

My husband also has metastatic colon cancer and was suffering terribly from
 the pain caused by involvement of the lymph nodes.  He lived on morphine. 
In March he had a morphine pump installed which constantly emits a very
small dosage of morphine directly into the spinal column.  This has been a
miracle in controlling the pain, without any of the side effects of
morphine.  Ask the doctor if Rich might be a candidate for this procedure.

Ruth

>>> vicci@wave.net 05/24/00 02:32AM >>>
Dear Lil,
Just getting up the nerve to let you all know what's been going on.  It's
not good news and I just hate it.
Rich had the video assisted thorocoscopy and they did a lung biopsy.  The
colon cancer has spread to his right bottom lung and chest wall.  He was in
the hospital for 13 days after this procedure.  They had to scrape along
his rib cage to reach the bottom of the lung and the doctor is pretty sure
that most of his pain is from that.  Altho he has been in progressively
worse pain for the last couple of months.  All his CEA's were normal so
dr's. didn't do any more checking until he couldn't take the pain anymore. 
Then they did a CT of his upper chest.  They had just been doing the gut
area.  Everything down there has been checking out ok on the CT scan.  But
I'm not so sure anymore.  I think that CT scans don't pick up everything. 
We can second guess all their methods but it won't change what's happening
now.  He is on Oxycontin (400 mgs) every 8 hours right now.  Was every 12
hours but he can't seem to make it thru to 12 hours.  He's on dialadid for
breakthru pain and ativan to calm him when that doesn't work, a sleeping
pill to help him try to sleep thru the night.  
I want to scream and shout and beat something.  He's not even 30 yet.  He
knows the probable outcome and he said he's not afraid to die.  BUT he's
fighting with all his might.  He's been out of the hospital for 11 days and
Erica, his significant other, and I have been run ragged trying to keep him
as comfortable as possible.  He's not down and out tho.  He's showing
everyone that he's in TOTAL control.  The first few days we were blown away
as to his behavior.  Never sitting, always on the move.  The drugs, I would
have thought, would knock him out.  No way.  Not this guy.  He's moving
furniture, cleaning closets, waking the baby at 6 am and changing his
diaper, mowing my lawn and vacuuming and doing dishes.  It's like he's on
Methamphetimene (sp) instead of Morphine.  We just try to get him to take
it a little easy but if he's feeling a pain level of under 7, he's on the
move.  A nurse told us it was the way he shows he's still in control. 
After Erica and I heard that we understood more.  This has been an
education for sure.  His heart is very healthy they tell us.  Liver good
too.  All organs are good except the bottom right lung and chest wall.     
    (Don't know if I really believe that)
They won't give us a time becuz he's so young that anything could happen.
Yes, I've been reading about the new CA 155 (can't find the paper for the
right numbers) but it was in our local paper two days ago and also John
called from his truck and told me to run down and buy the USA today.  It
had a bigger and better article in it.  Saw it on MOL yesterday.  So we've
already sent the USA article to his doctor and we see her on Thursday. 
We've had lots of people out from the hospital to make sure he is doing ok
and we've just had a hell of a time trying to get him painfree or
tolerable.  
I don't think about what this all means or I would be crying 24-7, and
right now I have to be strong for him and do all that I can to see that he
gets all the best medical treatment out there including the clinical
trials.  He's back on 5-FU  with a new drug "camptosar" ?  They (including
a second opinion at Oregon Health Sciences University in Portland) thought
that this would be the best way to go for right now.  But I'm anxious to
hear from the dr. about this new CA155.
It's probably the clinical trial that I asked her about before he started
this new round of chemo.  I may call the drug makers myself.  Rich has lost
a lot of weight and we've been complaining of this for the past year.  #140
when he went into the hospital and #120 right now.  He's just starting to
eat again and the chemo keeps things flowing.  It would give a normal
person diarrhea but since Rich has trouble making things move, it make his
bowels run just right.
Instead of being plugged up like he has been for the last two years. 
I need all the sound advise that I can get right now.  We're NOT giving up,
we'll never give up so keep us in your prayers and we'll get ready for the
fight of our life.        Richard   diagnosed June 19, 1998 adenocarcinoma
of the colon.

Nancy, I'm thinking of you and Don and the family.  Take good care of
yourself and get some rest.  

Lil, I see you're going somewhere.  Sorry I don't remember where.  Have a
great time.  Thanks for asking about Rich, I just didn't want to write this
but I had to let you all know.  

Where's Marty and Barb?

Hi Joicy girl.........thinking of you!

Not many people know me as I don't post very often BUT I've been a member
of this MOL group since June 19, 1998, the day my son was diagnosed.
I guess I lurk most of the time.  But I haven't signed off and I'm in it
for the long run.  I'm still trying to run my business and do whatever else
needs to be done and my days are getting longer again.  It's 12:24 am and
I'm off to bed.  
Take care and love to all........Vicci

  

----------
From: Lillian <firefly@islc.net>
To: Nancy J. <mol-cancer@lists.meds.com>
Subject: [MOL] Vicci!
Date: Tuesday, May 23, 2000 1:37 PM

How is our Rich doing, you have been mighty quiet there friend.  Can we do
anything to help?  Love you, lillian


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