Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

new member

Rate this topic

Recommended Posts

Guest guest

Many of the women with CPT II deficiency report an exacerbation of muscle

symptoms during menses, especially in their legs. This was certainly true

for me pre-menopause.

Barbara

_____

From: [mailto: ] On Behalf

Of ohgminion

Sent: Wednesday, June 29, 2005 2:25 PM

To:

Subject: Re: New Member

I don't have problems with my cycle, and actualy have (greatly)

improved symptoms when pregnant. However, I've been on birth control

pills, pregnant, or nursing since I first had mito symptoms (and five

years before that), so I haven't really had the chance to see what

I'm like off of them.

I had HORRIBLE cycles when I was a kid, between 12 and 18 years old -

heavy bleeding and cycles from 20 to 50 days, seemingly random. That

only improved when I went on the pill. If your daughters are having

these type issues, the mere loss of blood could be a factor for their

worsening symptoms. I also had bad cramps during those years as

well, and haven't had any since being on the pill. If there are

communication issues with either of your daughters, it's possible

they're having some pain during menses and that's wearing them down

to cause symptoms. For some reason I know women who put up with the

pain, but I even know people who take off work for a few days each

month from pain and discomfort...

I also had respiratory distress as an infant (was born 2 months

early, I'm in my 30's so it was before they were able to address

those issues correctly), some doctors have wondered if that triggered

or " set me up " for mito disease.

Just some thoughts,

RH

> Caitlyn,

> Welcome to the group. I am a and am 28. I started

having

> symptoms when I was in my early teens and was diagnosed at age 18.

You

> are right about the heat taking a toll on the body. I know you

want to

> enjoy being outside, just remember to pace yourself. You have

found a

> great group of people here.

> Smiles,

> a

>

> On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 "

> writes:

> I am a new member. Just joined this group a couple of days ago and

> thought I should introduce myself. My name is Caitlin. I am 22

years

> old and from central PA. I have not officially been diagnosed with

a

> mito disorder but one is suspected.

> I have had cyclic vomiting syndrome since I was 4 and was diagnosed

> with that when I was 8. There is a Dr in California, Dr. Boles who

> believes that cyclic vomiting syndrome (CVS) is mitochondrial

related.

> He has a study going on and I met the criteria for the first phase

of

> the study. There are three phases of the study and they are either

on

> the second or third, I can't remember. I had my COQ10 level checked

and

> it was below normal thus leading us to suspect even more that I

have a

> mito disorder.

> I have always needed a lot of sleep. Even as a baby I slept a lot.

I am

> tired pretty much all of the time. Heat makes me even more tired. I

try

> to stay cool in the summer because I know if I do have mito that

> extreme temperatures are pretty bad but it is hard because I love

going

> out in the summer. I've written a lot so I will go for now.

> Caitlin

>

>

Share this post


Link to post
Share on other sites
Guest guest

Joanne,

I would enjoy corresponding with your daughters. I just visited

your caring bridge page today. You have a beautiful family.

Smiles,

a

www.caringbridge.org/ia/kristina

On Wed, 29 Jun 2005 10:16:10 -0700 (PDT) Joanne Kocourek

servedogmom@...> writes:

Hi a,

Welcome. I have two affected daughters, lies (soon to be 20) and

(15). lies became quite symptomatic with the onset of

puberty and was diagnosed, in Cleveland and Atlanta when she was 13.

Retrospectively she did have soft signs since early childhood but puberty

seemed to trigger a major crisis. has been significantly

symptomatic since she was 9 weeks old (a resusciated SIDS type event),

but was originally diagnosed with Congenital Central Hypoventilation

Syndrome. She was then diagnosed with mtiochondrial disease following

li9es diagnosis. also has become far more symptomatic with

the onset of puberty. Both girls tend to have a marked increase in

signs/symptoms prior to each monthly cycle. More organ system

involvement has become apparent over time. Neither, lies or

do well with the summer heat and humidity, They have learned to pace

themselves and sleep for hours to compensate when they hjave overdone the

activity. Both

girls now have service dogs that help them maintain some independence.

They also serve to help conserve energy in regards to retrieveing,

picking things up, etc.

My girls are not yet comfortable with list serves, but do correspond

directly with other young adults by email. If you are interested, I'd be

happy to share your email address with them.

a C Koch kckoch76@...> wrote:

Caitlyn,

Welcome to the group. I am a and am 28. I started having

symptoms when I was in my early teens and was diagnosed at age 18. You

are right about the heat taking a toll on the body. I know you want to

enjoy being outside, just remember to pace yourself. You have found a

great group of people here.

Smiles,

a

Share this post


Link to post
Share on other sites
Guest guest

Hi a,

I'm sure they would be delighted. 's email

address is: Brooklynandklk@... lies' email

address is: girlwithdog85@... I'd suggest you

send a brief post introducing yourself. They are

pretty good about responding. loves PenPals

and will send a copy of her school newsletter (she is

homeschooled) to anyone that expresses an interest.

Her preference tends to be " snail mail " . If that is

ok with you, I'm sure she would be happy to

correspond. Hope you enjoy lots of travel related

info. Between out of State medical care and my work

related meetings, it seems we are on the go alot.

Thank you for offering. That is really sweet. They

know so few young adults that can relate to having

medical challenges. They greatly appreciated the

opportunity to meet at the UMDF Conference a

year ago. might not remember, but they were

thrilled to make her acquaintance.

--- a C Koch kckoch76@...> wrote:

> Joanne,

> I would enjoy corresponding with your

> daughters. I just visited

> your caring bridge page today. You have a beautiful

> family.

>

> Smiles,

> a

> www.caringbridge.org/ia/kristina

>

> On Wed, 29 Jun 2005 10:16:10 -0700 (PDT) Joanne

> Kocourek

> servedogmom@...> writes:

> Hi a,

>

> Welcome. I have two affected daughters, lies

> (soon to be 20) and

> (15). lies became quite symptomatic

> with the onset of

> puberty and was diagnosed, in Cleveland and Atlanta

> when she was 13.

> Retrospectively she did have soft signs since early

> childhood but puberty

> seemed to trigger a major crisis. has been

> significantly

> symptomatic since she was 9 weeks old (a resusciated

> SIDS type event),

> but was originally diagnosed with Congenital Central

> Hypoventilation

> Syndrome. She was then diagnosed with mtiochondrial

> disease following

> li9es diagnosis. also has become far

> more symptomatic with

> the onset of puberty. Both girls tend to have a

> marked increase in

> signs/symptoms prior to each monthly cycle. More

> organ system

> involvement has become apparent over time. Neither,

> lies or

> do well with the summer heat and humidity, They

> have learned to pace

> themselves and sleep for hours to compensate when

> they hjave overdone the

> activity. Both

> girls now have service dogs that help them maintain

> some independence.

> They also serve to help conserve energy in regards

> to retrieveing,

> picking things up, etc.

>

> My girls are not yet comfortable with list serves,

> but do correspond

> directly with other young adults by email. If you

> are interested, I'd be

> happy to share your email address with them.

>

> a C Koch kckoch76@...> wrote:

> Caitlyn,

> Welcome to the group. I am a and am

> 28. I started having

> symptoms when I was in my early teens and was

> diagnosed at age 18. You

> are right about the heat taking a toll on the body.

> I know you want to

> enjoy being outside, just remember to pace yourself.

> You have found a

> great group of people here.

> Smiles,

> a

>

> [Non-text portions of this message have been

> removed]

>

>

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

Share this post


Link to post
Share on other sites
Guest guest

I am not trying to be cruel to the new members but my husband was diagnosed

with STAGE 4 and his only symptom was severe lower back pain like sciatica. We

would probably still be seeing chiropractors and orthopedic guys.

The liver swelled as did his legs and ankles before our old Dr. even thought

something might be wrong and ordered tests. Phil threw up coffee ground like

substance and bile and was FINALLY admitted to the hospital and diagnosed 36

hours later on June 19, 2003.

The idiot General Physician wanted to send him home with TYLENOL for pain

and recommended no chemo and told us there was no hope.

Well, as a Texas TV judge said once " We smelled the fragrant aroma of Bovine

fecal matter!! "

We are now 2 years with Dr. Jan Rothman of Regional Cancer Center Erie, PA

and have recently added Dr. Geller a liver specialist at UPMC in Pittsburgh

to the team in April.

You can read Phil's journey in the Our Stories section of the groups YAHOO

web site.

Now as for your own situation GET A COLONOSCOPY NOW!!!!!! It won't change

whatever is going on but it will get it taken care of. Don't guess at things

just do it. I promise you

WILL NEVER REGRET IT!!

Good Luck and Keep in Touch

Narice

Share this post


Link to post
Share on other sites
Guest guest

I am not trying to be cruel to the new members but my husband was diagnosed

with STAGE 4 and his only symptom was severe lower back pain like sciatica. We

would probably still be seeing chiropractors and orthopedic guys.

The liver swelled as did his legs and ankles before our old Dr. even thought

something might be wrong and ordered tests. Phil threw up coffee ground like

substance and bile and was FINALLY admitted to the hospital and diagnosed 36

hours later on June 19, 2003.

The idiot General Physician wanted to send him home with TYLENOL for pain

and recommended no chemo and told us there was no hope.

Well, as a Texas TV judge said once " We smelled the fragrant aroma of Bovine

fecal matter!! "

We are now 2 years with Dr. Jan Rothman of Regional Cancer Center Erie, PA

and have recently added Dr. Geller a liver specialist at UPMC in Pittsburgh

to the team in April.

You can read Phil's journey in the Our Stories section of the groups YAHOO

web site.

Now as for your own situation GET A COLONOSCOPY NOW!!!!!! It won't change

whatever is going on but it will get it taken care of. Don't guess at things

just do it. I promise you

WILL NEVER REGRET IT!!

Good Luck and Keep in Touch

Narice

Share this post


Link to post
Share on other sites
Guest guest

That was a good example. I too had no symptoms, except for a little gas and was

at stage 3. Our bodies are amazing and do not always send the proper signals in

time for treatment.

Good luck and prayers to your husband

Carolyn

Re: Re: New Member

I am not trying to be cruel to the new members but my husband was diagnosed

with STAGE 4 and his only symptom was severe lower back pain like sciatica. We

would probably still be seeing chiropractors and orthopedic guys.

The liver swelled as did his legs and ankles before our old Dr. even thought

something might be wrong and ordered tests. Phil threw up coffee ground like

substance and bile and was FINALLY admitted to the hospital and diagnosed 36

hours later on June 19, 2003.

The idiot General Physician wanted to send him home with TYLENOL for pain

and recommended no chemo and told us there was no hope.

Well, as a Texas TV judge said once " We smelled the fragrant aroma of Bovine

fecal matter!! "

We are now 2 years with Dr. Jan Rothman of Regional Cancer Center Erie, PA

and have recently added Dr. Geller a liver specialist at UPMC in Pittsburgh

to the team in April.

You can read Phil's journey in the Our Stories section of the groups YAHOO

web site.

Now as for your own situation GET A COLONOSCOPY NOW!!!!!! It won't change

whatever is going on but it will get it taken care of. Don't guess at things

just do it. I promise you

WILL NEVER REGRET IT!!

Good Luck and Keep in Touch

Narice

Share this post


Link to post
Share on other sites
Guest guest

That was a good example. I too had no symptoms, except for a little gas and was

at stage 3. Our bodies are amazing and do not always send the proper signals in

time for treatment.

Good luck and prayers to your husband

Carolyn

Re: Re: New Member

I am not trying to be cruel to the new members but my husband was diagnosed

with STAGE 4 and his only symptom was severe lower back pain like sciatica. We

would probably still be seeing chiropractors and orthopedic guys.

The liver swelled as did his legs and ankles before our old Dr. even thought

something might be wrong and ordered tests. Phil threw up coffee ground like

substance and bile and was FINALLY admitted to the hospital and diagnosed 36

hours later on June 19, 2003.

The idiot General Physician wanted to send him home with TYLENOL for pain

and recommended no chemo and told us there was no hope.

Well, as a Texas TV judge said once " We smelled the fragrant aroma of Bovine

fecal matter!! "

We are now 2 years with Dr. Jan Rothman of Regional Cancer Center Erie, PA

and have recently added Dr. Geller a liver specialist at UPMC in Pittsburgh

to the team in April.

You can read Phil's journey in the Our Stories section of the groups YAHOO

web site.

Now as for your own situation GET A COLONOSCOPY NOW!!!!!! It won't change

whatever is going on but it will get it taken care of. Don't guess at things

just do it. I promise you

WILL NEVER REGRET IT!!

Good Luck and Keep in Touch

Narice

Share this post


Link to post
Share on other sites
Guest guest

Welcome Maridiana! You and I had the same stats. I

started out at 249.5, call it 250. I had to lose 24

pounds. Thats not too bad but I know that losing can

be so hard. Remember you can do it. Maybe you won't

have to lose that much as I hear SF and Fremont are

not real sticklers about the 10% thing as Richmond is.

That is where I went.

I am not sure how SF works because all three of the

facilities handles thing differently. Maybe some

people that went through SF will chime in shortly and

advise you. Nonetheless, I wish you the best.

Pam Marsh

--- maridianas maridianas@...> wrote:

> Hi!

> I am new to this website and actually gald that this

> is here. I

> have been so confused since this all started and

> have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am

> waiting for the

> orientation class and all the following classes to

> be scheduled.

>

> I am about 250 and not maitaining that 250 so I

> decided to go ahead

> and start now since almost everyone in my family is

> within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I

> am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

>

>

>

>

>

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

Share this post


Link to post
Share on other sites
Guest guest

Welcome Maridiana! You and I had the same stats. I

started out at 249.5, call it 250. I had to lose 24

pounds. Thats not too bad but I know that losing can

be so hard. Remember you can do it. Maybe you won't

have to lose that much as I hear SF and Fremont are

not real sticklers about the 10% thing as Richmond is.

That is where I went.

I am not sure how SF works because all three of the

facilities handles thing differently. Maybe some

people that went through SF will chime in shortly and

advise you. Nonetheless, I wish you the best.

Pam Marsh

--- maridianas maridianas@...> wrote:

> Hi!

> I am new to this website and actually gald that this

> is here. I

> have been so confused since this all started and

> have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am

> waiting for the

> orientation class and all the following classes to

> be scheduled.

>

> I am about 250 and not maitaining that 250 so I

> decided to go ahead

> and start now since almost everyone in my family is

> within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I

> am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

>

>

>

>

>

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

Share this post


Link to post
Share on other sites
Guest guest

Welcome Maridiana! You and I had the same stats. I

started out at 249.5, call it 250. I had to lose 24

pounds. Thats not too bad but I know that losing can

be so hard. Remember you can do it. Maybe you won't

have to lose that much as I hear SF and Fremont are

not real sticklers about the 10% thing as Richmond is.

That is where I went.

I am not sure how SF works because all three of the

facilities handles thing differently. Maybe some

people that went through SF will chime in shortly and

advise you. Nonetheless, I wish you the best.

Pam Marsh

--- maridianas maridianas@...> wrote:

> Hi!

> I am new to this website and actually gald that this

> is here. I

> have been so confused since this all started and

> have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am

> waiting for the

> orientation class and all the following classes to

> be scheduled.

>

> I am about 250 and not maitaining that 250 so I

> decided to go ahead

> and start now since almost everyone in my family is

> within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I

> am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

>

>

>

>

>

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

Share this post


Link to post
Share on other sites
Guest guest

Hi : I am new to this site also, so I just wanted to say Hi. As

far as the classes, just go to all the appoitments and take it a day

at a time. Your question will be answered at the meetings and all of

this will fall into place.

Luci-

-- In gastric-bypass-support-kaiser-

patients , " maridianas " wrote:

> Hi!

> I am new to this website and actually gald that this is here. I

> have been so confused since this all started and have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am waiting for the

> orientation class and all the following classes to be scheduled.

>

> I am about 250 and not maitaining that 250 so I decided to go ahead

> and start now since almost everyone in my family is within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi : I am new to this site also, so I just wanted to say Hi. As

far as the classes, just go to all the appoitments and take it a day

at a time. Your question will be answered at the meetings and all of

this will fall into place.

Luci-

-- In gastric-bypass-support-kaiser-

patients , " maridianas " wrote:

> Hi!

> I am new to this website and actually gald that this is here. I

> have been so confused since this all started and have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am waiting for the

> orientation class and all the following classes to be scheduled.

>

> I am about 250 and not maitaining that 250 so I decided to go ahead

> and start now since almost everyone in my family is within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi : I am new to this site also, so I just wanted to say Hi. As

far as the classes, just go to all the appoitments and take it a day

at a time. Your question will be answered at the meetings and all of

this will fall into place.

Luci-

-- In gastric-bypass-support-kaiser-

patients , " maridianas " wrote:

> Hi!

> I am new to this website and actually gald that this is here. I

> have been so confused since this all started and have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am waiting for the

> orientation class and all the following classes to be scheduled.

>

> I am about 250 and not maitaining that 250 so I decided to go ahead

> and start now since almost everyone in my family is within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome !!!

> Hi!

> I am new to this website and actually gald that this is here. I

> have been so confused since this all started and have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am waiting for the

> orientation class and all the following classes to be scheduled.

>

> I am about 250 and not maitaining that 250 so I decided to go ahead

> and start now since almost everyone in my family is within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome !!!

> Hi!

> I am new to this website and actually gald that this is here. I

> have been so confused since this all started and have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am waiting for the

> orientation class and all the following classes to be scheduled.

>

> I am about 250 and not maitaining that 250 so I decided to go ahead

> and start now since almost everyone in my family is within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome !!!

> Hi!

> I am new to this website and actually gald that this is here. I

> have been so confused since this all started and have no idea what

> happens next.

>

> I was just approved on July 22, 2005 and I am waiting for the

> orientation class and all the following classes to be scheduled.

>

> I am about 250 and not maitaining that 250 so I decided to go ahead

> and start now since almost everyone in my family is within the 300-

> 350 range.

>

> I was just curious if anyone is at the step that I am at and what

> comes next as far as timeframe and schedule.

>

> I am out of the South San Francisco Kaiser.

>

>

> Thank you and bestwishes to all of you,

>

>

Share this post


Link to post
Share on other sites
Guest guest

Thanks for the welcome! I had no idea that there was somewhere that I could get so much information regarding WLS, especially at Kaiser. I was referred to SSF and I know that it is a long process. I just wish it would be sooner since it took so long for me to be referred by my PCP. I had been referred twice and the first time my PCP did not follow through and kept postponing this process. I am glad that my new PCP was so supportive after viewing my history.

I see that the process can be quick for some and long for others. It kind of makes it hard to plan something like this around work.

Thanks for all your support,

Maridiana

Pamela A Marsh wrote:

Welcome Maridiana! You and I had the same stats. Istarted out at 249.5, call it 250. I had to lose 24pounds. Thats not too bad but I know that losing canbe so hard. Remember you can do it. Maybe you won'thave to lose that much as I hear SF and Fremont arenot real sticklers about the 10% thing as Richmond is.That is where I went. I am not sure how SF works because all three of thefacilities handles thing differently. Maybe somepeople that went through SF will chime in shortly andadvise you. Nonetheless, I wish you the best.Pam Marsh__________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Thanks for the welcome! I had no idea that there was somewhere that I could get so much information regarding WLS, especially at Kaiser. I was referred to SSF and I know that it is a long process. I just wish it would be sooner since it took so long for me to be referred by my PCP. I had been referred twice and the first time my PCP did not follow through and kept postponing this process. I am glad that my new PCP was so supportive after viewing my history.

I see that the process can be quick for some and long for others. It kind of makes it hard to plan something like this around work.

Thanks for all your support,

Maridiana

Pamela A Marsh wrote:

Welcome Maridiana! You and I had the same stats. Istarted out at 249.5, call it 250. I had to lose 24pounds. Thats not too bad but I know that losing canbe so hard. Remember you can do it. Maybe you won'thave to lose that much as I hear SF and Fremont arenot real sticklers about the 10% thing as Richmond is.That is where I went. I am not sure how SF works because all three of thefacilities handles thing differently. Maybe somepeople that went through SF will chime in shortly andadvise you. Nonetheless, I wish you the best.Pam Marsh__________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Please accept my sympathy on your husband's passing. No, I never heard of a

case like that. My father had Lung Cancer that moved fast but I haven't heard

of it with colon cancer.

My husband was diagnosed a late Stage 4 but only had back pain then very bad

vomiting got him into the hospital where he was diagnosed June 19, 2003. At

that time they didn't think he'd be here more than 2 or 3 months.

Cases like yours make me all the more humbled. This could have been us but

for the grace of God.

I wish things had gone differently for you. Please feel free to come here

and cry, scream, vent, whatever. Sometimes life makes no sense and this is

unfortunately one of those times.

In the meantime my heart goes out to you

with Hugs and Prayers Narice

In a message dated 8/17/2005 1:32:31 PM Eastern Standard Time,

bama_1992@... writes:

Hi

My name is priscilla and i have just lost my 46 year old husband to

colon cancer. He wasn't even sick so it's been such a shock to us

all. He went into the hospital because we thought he had heatstroke

and ten days later he was dead.

I still am having a hard time understanding how he died so quickly and

he was such a strong healthy man. WE live on a farm in Canada and we

were just baling hay three days before he went into the hospital. he

had no symptoms or family history. Everyone we talk to has never

heard of a case like this before but that doesn't help me or my

children.

Has anyone else ever heard of something like this happening? or did I

just miss something.

Priscilla

Share this post


Link to post
Share on other sites
Guest guest

Please accept my sympathy on your husband's passing. No, I never heard of a

case like that. My father had Lung Cancer that moved fast but I haven't heard

of it with colon cancer.

My husband was diagnosed a late Stage 4 but only had back pain then very bad

vomiting got him into the hospital where he was diagnosed June 19, 2003. At

that time they didn't think he'd be here more than 2 or 3 months.

Cases like yours make me all the more humbled. This could have been us but

for the grace of God.

I wish things had gone differently for you. Please feel free to come here

and cry, scream, vent, whatever. Sometimes life makes no sense and this is

unfortunately one of those times.

In the meantime my heart goes out to you

with Hugs and Prayers Narice

In a message dated 8/17/2005 1:32:31 PM Eastern Standard Time,

bama_1992@... writes:

Hi

My name is priscilla and i have just lost my 46 year old husband to

colon cancer. He wasn't even sick so it's been such a shock to us

all. He went into the hospital because we thought he had heatstroke

and ten days later he was dead.

I still am having a hard time understanding how he died so quickly and

he was such a strong healthy man. WE live on a farm in Canada and we

were just baling hay three days before he went into the hospital. he

had no symptoms or family history. Everyone we talk to has never

heard of a case like this before but that doesn't help me or my

children.

Has anyone else ever heard of something like this happening? or did I

just miss something.

Priscilla

Share this post


Link to post
Share on other sites
Guest guest

Welcome Deb

Do you know what stage the cancer is and what chemo they want to use?

Thanks for letting us know where you are for 2 reasons

First we can help you find help in your area and second there are at least 2

other Deb's on this board!!!

Welcome again and feel free to ask questions and chime in anytime.

Narice

Share this post


Link to post
Share on other sites
Guest guest

Hi, Deb from Kansas, I am so sorry you had to find our group due to

your husband having colon cancer. But you came to a good place. People

here are very caring and knowledable on anything you will need to know.

Your husband had a rough time with his surgery. I think it was a

rather long surgery. Mine lasted two hours. The good news is that the

tumor weas contained in one area for your husband. Did he have postive

lymph nodes? How many lymph nodes did they test?

I am going to add your husband to my prayers. What is his name?

Please come here often and post. Prayers for you and your husband.

Ingrid

> Hi, everyone. On August 19 we found out that my husband has colon

> cancer. His CEA was 3.9, and his surgery was August 26, 2005. The

> surgery lasted for 3 hours and 15 minutes. Not sure if that was a

> good time or not. From the position of his body during the operation,

> fluids drained into his chest and he was almost in heart failure, but

> thank God they pulled him out of it. He had a " failed epidural " which

> is still sore. He is having a very difficult recovery because when he

> had the colonoscopy he also had a gastric exam. After a couple weeks

> the GI doc put him on medication for h-pylori in the stomach. My son

> had

> been told that the CT scan showed the tumor was confined to the

> colon,

> but when the surgeon opened him up, cancer cells were found in the

> fat surrounding the colon. So he needs chemotherapy and radiation

> concurrently for 5 weeks, then additional radiation for 6 months.

>

> Thanks for letting me join your group. Prayers needed here.

> ~Deb from Kansas

Share this post


Link to post
Share on other sites
Guest guest

Hi Deb from Kansas, The fact that your husband is a stage 11 and no

lymph node involvement is a very good factor.

As for the chemo your being overly concerned. Yes, chemo can be

rough but for most the side effects are bearable. I was on Folfox

(Oxyplatinym(sp?) 5-FU and Leacovarin) which I suspect will be

recomended to your husband. Of course you will not know for sure till

you talk to your Oncoligist.

They control the nausea and vomitting with anti-nausea medication

which works very well. If your husband has any diareaha that can be

controlled very easily also. They take his blood counts before each

chemo treatment. If they are low then he will not have the chemo.

They are very careful of this. There are medications that help bring

the blood counts back up if they drop too low. If he has the OXY then

he may or may not have the hand foot syndrome. Most do have it. Those

side effects ussually disappear once chemo is finsihed. On some that

has lingered for several months but it does eventially go away.

He will be able to eat normally on chemo. Some even work while on

chemo. So do not get yourself too worried yet. Many here have

tolerated the chemo regiments quite well. Some expeirence fatigue and

that is common. It may last for a day or too but will get better on

your off chemo days. If fatigue persits it ussually indicates low

blood counts.

Chemo is not like it used to be. They have come a long ways with it

and have done a lot to control the side effects. Your ONC will

explain all that to you. Until your husband starts chemo you will not

know for sure how he will tolerate it and what side effects he will

have. All people are different and many react differently.

When will your husband be seeing the ONC?

Just take it one day at a time and let him go through the healing

process for now. They do want him healed before they start any chemo.

Best to you and your husband, Ingrid

> > > Hi, everyone. On August 19 we found out that my husband has

> colon

> > > cancer. His CEA was 3.9, and his surgery was August 26, 2005.

> The

> > > surgery lasted for 3 hours and 15 minutes. Not sure if that was

a

> > > good time or not. From the position of his body during the

> operation,

> > > fluids drained into his chest and he was almost in heart

> failure, but

> > > thank God they pulled him out of it. He had a " failed epidural "

> which

> > > is still sore. He is having a very difficult recovery because

> when he

> > > had the colonoscopy he also had a gastric exam. After a couple

> weeks

> > > the GI doc put him on medication for h-pylori in the stomach.

My

> son

> > > had

> > > been told that the CT scan showed the tumor was confined to the

> > > colon,

> > > but when the surgeon opened him up, cancer cells were found in

> the

> > > fat surrounding the colon. So he needs chemotherapy and

> radiation

> > > concurrently for 5 weeks, then additional radiation for 6

> months.

> > >

> > > Thanks for letting me join your group. Prayers needed here.

> > > ~Deb from Kansas

Share this post


Link to post
Share on other sites
Guest guest

Deb, Everyone is different and everyone reacts differently to

radiation and chemo. All we can do is tell you what we have

expierenced. I am hoping and praying that it all goes easy for your

husband. God Bless both of you. Ingrid

> > Hi Deb from Kansas, The fact that your husband is a stage 11 and

no

> > lymph node involvement is a very good factor.

> > As for the chemo your being overly concerned. Yes, chemo can be

> > rough but for most the side effects are bearable. I was on Folfox

> > (Oxyplatinym(sp?) 5-FU and Leacovarin) which I suspect will be

> > recomended to your husband. Of course you will not know for sure

> till

> > you talk to your Oncoligist.

> > They control the nausea and vomitting with anti-nausea

medication

> > which works very well. If your husband has any diareaha that can

be

> > controlled very easily also. They take his blood counts before

each

> > chemo treatment. If they are low then he will not have the chemo.

> > They are very careful of this. There are medications that help

> bring

> > the blood counts back up if they drop too low. If he has the OXY

> then

> > he may or may not have the hand foot syndrome. Most do have it.

> Those

> > side effects ussually disappear once chemo is finsihed. On some

> that

> > has lingered for several months but it does eventially go away.

> > He will be able to eat normally on chemo. Some even work while

on

> > chemo. So do not get yourself too worried yet. Many here have

> > tolerated the chemo regiments quite well. Some expeirence fatigue

> and

> > that is common. It may last for a day or too but will get better

on

> > your off chemo days. If fatigue persits it ussually indicates low

> > blood counts.

> > Chemo is not like it used to be. They have come a long ways

with

> it

> > and have done a lot to control the side effects. Your ONC will

> > explain all that to you. Until your husband starts chemo you will

> not

> > know for sure how he will tolerate it and what side effects he

will

> > have. All people are different and many react differently.

> > When will your husband be seeing the ONC?

> > Just take it one day at a time and let him go through the

healing

> > process for now. They do want him healed before they start any

> chemo.

> > Best to you and your husband, Ingrid

> >

> > ---------------------------------

> > Yahoo! for Good

> > Click here to donate to the Hurricane Katrina relief effort.

> >

> >

Share this post


Link to post
Share on other sites
Guest guest

Barb,

Welcome to the group. I have never been a " joiner " either but this

group keeps me sane. I too, have been on disability since 2004 and hate

every minute of not working. I am not a nurse, but I worked in medicine

for over 20 years as an MA, receptionist, transcriptionist, office

manager, etc. I was diagnosed with MS for 9 months, then went to s

Hopkins and was given a dx of possbile NS. So who knows but this group

will keep you going. Sorry you are here because of your illness but we

look forward to getting to know you.

Terri G.

>

> I saw the group on line. I have had Neurosarcoidosis since 2000.

> Probably before that but they had to go through a couple other

> diagnoses first. I have been on Disability since June of 2004. I was a

> nurse and it is getting harder and harder for me to walk. So, I had to

> quit working. I use a cane but I fall frequently. Stairs are a real

> bummer. I am on lots of meds, many of the meds didn't work for me.

> Thank goodness I have good doctors. Since I left work I have felt

alone

> in spite of my family. I have never been a Joiner, it really isn't

like

> me to be part of a group like this but I thought, " what could it

hurt? "

> to see how other people with the same illness are handling it. So here

> I am, taking a chance.

> Barb J.

>

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...