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http://www.emedicine.com/NEURO/topic513.htm

> Hello, my name is Diane and i have a son who has a rare form of

MD.

> This form of MD is called Emery-Dreifuss MD. This is very similar

to

> Limb-Girdle MD. Most people with this diseas experience

contractures

> and heart conduction problems. My son is 16 years old and up until

> now it had been thought that he had Limb-Girdle MD. Due to a

recent

> visit to Children's Hospital of Phiadelphia it has been confirmed

> with 100 percent certainty that he has EDMD. People with this form

> of MD are missing a protein called Emerin. They can be easily

tested

> for this by a simple buccal smear, (just a swab of the mouth)

which

> test DNA for missing Emerin protein. However this being rare it is

> verty difficult to find anyone whom also is affected by this. My

son

> is in a very unfortunate unique situation at present and i am

> desperatly in search of someone with this same rare form of MD. If

> you have EDMD or no of someone, please i would love to talk with

> you. dedeh56@y... My son has a very severe neck contracture,

> wich is going to involve two different surgeries. Doctors have

never

> seen this kind of situation with such severe contracture. My son

is

> left looking at the ceiling. The first surgery they are going to

cut

> muscle and tendons (release them) He will be left in halo for 6

> weeks then will undergo second surgery to extend things further to

> previous unit rod in my sons back, up to skull. We are hoping for

a

> better quality of life for my son, he is a bright student. Anyone

> out there please e-mail me. Would love to talk with someone who

can

> relate to this situation. My son has been affected with MD since

age

> 2. Well, i thank you very much. I will check into this forum from

> time to time and would like to meet you all. I also might mention

> that i am hosting a chat on MDA web EDMD moms and caregivers on

> Sundays weekly 7-9 Eastern time, all are welcome!!!! Again ty

> Diane-coffeclubmom-dedeh56.

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Carolyn

Welcome to Mitoldies. I think you have come to the right spot.

There is a conference in Sept. of 2004 in Pittsburgh. I will be going and

hope to meet you and others from the group.

One of my best friends has post-polio syndrome. There is some thought that

post polio might be caused by damage to the mitochondria from the polio. I

haven't heard of any research on this lately.

I am 61, single, still teach special ed students, live independently and

have mito. Now, that is really me in a nutshell.

Glad you are here.

laurie

>

> Reply-To:

> Date: Sat, 05 Jul 2003 22:35:21 -0000

> To:

> Subject: Hello

>

> I recently joined your group and was asked to tell a little

> about myself. I am 58 years old, single, live independently in my own

> home with a dog and two cats and have had muscle weakness since

> birth. Back then not much was known about my condition other than it

> was labelled some form of muscular dystrophy. My parents were told

> just to treat me as a " normal " child-- and they did, though I think

> they were very frightened and concerned. Though I could never run,

> jump or walk up stairs like other children, I did graduate from

> college and then went on to become an Occupational Therapist. I

> worked as an OT in a psychiatric hospital for 30 years until 4 years

> ago when, as I was getting weaker and more exhausted, I " retired " on

> disability. A year before I retired, I finally was referred to a MDA

> clinic where (to their surprize) my muscle biopsy showed the

> typical " ragged red fibers " of mitochondrial myopathy, though mine

> seems to be an atypical form.

> In many ways having this diagnosis has been somewhat of a

> relief. For the first time some of the subtle problems that had

> always bothered me were now making sense (i.e. exhaustion, " brain

> fogging " , intestinal slowness, mild hearing loss, etc). Also I hope,

> for the first time, to be able to correspond with, and if there is

> ever any convention, meet someone with my condition. For the last

> ten years before my diagnosis, I found myself identifying with those

> who have post-polio syndrome as they are also experiencing, though

> for a different reason, many of the same symptoms as those with

> mito. Now, thanks to this group and the MDA Mito Chat, perhaps I can

> receive support and learn from and be of help to someone with my

> diagnosis.

> Thank you for sponsoring this group.

> Carolyn

>

>

>

>

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Carolyn,

Welcome to Mitoldies. I think you will find this to be a very supportive and knowledgeable (through experience) group. I joined the group, I think, three years ago and it has been a blessing for me.

To sum myself up, I am 26 years old, live independently, taught special education for 3 years, until I had to cut back hours due to health and fatigue. I now work as a reading associate, doing the same duties as a teacher, with less pay! :-) This is only 2 1/2 hours, supposedly a day. I was diagnosed with mitochondrial cytopathy in 1995 at age 18. My diagnosis only took 4 1/2 years, which is quite quick compared to a lot of the people on the group.

I really identify with your air hunger. Lying on my side or with my head propped up helps a lot.

Again, welcome to the group.

Smiles,

a

I recently joined your group and was asked to tell a little about myself. I am 58 years old, single, live independently in my own home with a dog and two cats and have had muscle weakness since birth. Back then not much was known about my condition other than it was labelled some form of muscular dystrophy. My parents were told just to treat me as a "normal" child-- and they did, though I think they were very frightened and concerned. Though I could never run, jump or walk up stairs like other children, I did graduate from college and then went on to become an Occupational Therapist. I worked as an OT in a psychiatric hospital for 30 years until 4 years ago when, as I was getting weaker and more exhausted, I "retired" on disability. A year before I retired, I finally was referred to a MDA clinic where (to their surprize) my muscle biopsy showed the typical "ragged red fibers" of mitochondrial myopathy, though mine seems to be an atypical form. In many ways having this diagnosis has been somewhat of a relief. For the first time some of the subtle problems that had always bothered me were now making sense (i.e. exhaustion, "brain fogging", intestinal slowness, mild hearing loss, etc). Also I hope, for the first time, to be able to correspond with, and if there is ever any convention, meet someone with my condition. For the last ten years before my diagnosis, I found myself identifying with those who have post-polio syndrome as they are also experiencing, though for a different reason, many of the same symptoms as those with mito. Now, thanks to this group and the MDA Mito Chat, perhaps I can receive support and learn from and be of help to someone with my diagnosis. Thank you for sponsoring this group. Carolyn

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Hi Joe:

My name is Monika and I am caregiver to my husband Bert who was

diagnosed with stage III colon cancer, cecum colon, last

July/August...four nodes positive but nothing else (thank God).

First, let me say you have come to an excellent support group and I'm

so glad that you bounced right in and are also ready and kind enough

to lend support as well. I know that for the first two or three

months while I was on this board, I couldn't give much support to

anybody as I was still reeling from the diagnosis of colon cancer for

Bert and that of lung cancer for my mother. I've come a long way, I

HOPE, since then and am now able to share some of our experiences

with others.

Bert is currently still on chemo and is being treated with

5fu/leuc/oxaliplatin because of having four nodes involved places him

at high risk for recurrence. While constipation was never a problem,

diarrhea sure was...so bad in fact that original 5fu/leuc chemo

doseage had to be reduced and he spent one week in October in the

hospital for chemo infection in the colon and all of the month of

December pretty much in bed due to severe, severe diarrhea. Since

switching to a new oncologist, adding oxal to the treatment combo and

have the 5fu via gradual pump infusion over a period of 46 hours,

he's done so much better. Our oncologist told us that if

constipation should come about (and believe me, we laughed at the

time considering all that Bert had been through), DucalaX (sp?)

suppositories work quite well and are gentle on the system. Also,

Metamucil, which would help tremendously for regularity, or just some

good old whole ground flaxseed meal, available in any whole foods

market or health food store. You may also just want to check with

your oncologist for his recommendations as I know there are plenty of

remedies out there. My mom suffered constipation on her chemo for

lung cancer and she was put on Metamucil. While it took a while for

it to kick in, when it did, it did!!!!

Hope this helps a little bit and again, welcome to our group. You

seem to have a great attitude and that's so important when fighting

this dragon...more than 50% of the battle is attitude! And you

certainly have mighty strong reasons to win the fight and

prevail...your family!!!!

Please keep us posted on how you do.

Fondly,

Monika

> I'm not quite sure how I stumbled onto this group, but I did,

> and looking at the messages, I am glad that I did.

> My name is Joe, I am 40 and have stage IV rectal cancer, with

> tumors in the liver known. As of last read, only in the right

> lobe. Crossing my fingers that they are nowhere else, because my

> hope is to get six months of chemo out of the way and have them

> out. I have 4 kids, 3 through 12, and they and my wife need me to

> be around.

> Hopefully I can offer some support, let as many of you as

> possible know that you are not alone. I just had my first chemo

> session (FOFOX); thought I was in good shape, because Days 1-3 went

> OK. Seems like as soon as they disconnected the mobile 5-FU pump,

> everything went downhill due to GI stuff (nausea, diarrhea and

> constipation, very likely complicated by the fact that my bottom

> doesn't work quite right after surgery), thrush, and fatigue. I

was

> for all purposes nonfunctional on days 4-6. By Day 7, things

> started to get a little better. Days 8 and 9 am having good 1/2

> days (mornings had GI spasms gone by day 8). Hoping we can get

this

> fine tuned for the next 11 treatments.

> If I can offer anybody anything at this point, please let me

> know...I'll be glad to share any experiences, good or bad, and what

> helped them if they were bad. If anybody has the time to share any

> tips for getting halfway regular after having rectal resection,

> would appreciate it. Just about when starting chemo, I got

> constipated, I tried just Colaise for 2 days, which didn't work, so

> I tried Senecot-S and it resulted in violent spasms of first rock

> hard stuff then diarreha, which I then had to take Immodium to get

> rid of. Got a hemhorroid in the process as well. Off everything

> now, but afraid of constipation setting in again. Any ideas -

> thanks. Take Care - Joe

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Hi Joe:

My name is Monika and I am caregiver to my husband Bert who was

diagnosed with stage III colon cancer, cecum colon, last

July/August...four nodes positive but nothing else (thank God).

First, let me say you have come to an excellent support group and I'm

so glad that you bounced right in and are also ready and kind enough

to lend support as well. I know that for the first two or three

months while I was on this board, I couldn't give much support to

anybody as I was still reeling from the diagnosis of colon cancer for

Bert and that of lung cancer for my mother. I've come a long way, I

HOPE, since then and am now able to share some of our experiences

with others.

Bert is currently still on chemo and is being treated with

5fu/leuc/oxaliplatin because of having four nodes involved places him

at high risk for recurrence. While constipation was never a problem,

diarrhea sure was...so bad in fact that original 5fu/leuc chemo

doseage had to be reduced and he spent one week in October in the

hospital for chemo infection in the colon and all of the month of

December pretty much in bed due to severe, severe diarrhea. Since

switching to a new oncologist, adding oxal to the treatment combo and

have the 5fu via gradual pump infusion over a period of 46 hours,

he's done so much better. Our oncologist told us that if

constipation should come about (and believe me, we laughed at the

time considering all that Bert had been through), DucalaX (sp?)

suppositories work quite well and are gentle on the system. Also,

Metamucil, which would help tremendously for regularity, or just some

good old whole ground flaxseed meal, available in any whole foods

market or health food store. You may also just want to check with

your oncologist for his recommendations as I know there are plenty of

remedies out there. My mom suffered constipation on her chemo for

lung cancer and she was put on Metamucil. While it took a while for

it to kick in, when it did, it did!!!!

Hope this helps a little bit and again, welcome to our group. You

seem to have a great attitude and that's so important when fighting

this dragon...more than 50% of the battle is attitude! And you

certainly have mighty strong reasons to win the fight and

prevail...your family!!!!

Please keep us posted on how you do.

Fondly,

Monika

> I'm not quite sure how I stumbled onto this group, but I did,

> and looking at the messages, I am glad that I did.

> My name is Joe, I am 40 and have stage IV rectal cancer, with

> tumors in the liver known. As of last read, only in the right

> lobe. Crossing my fingers that they are nowhere else, because my

> hope is to get six months of chemo out of the way and have them

> out. I have 4 kids, 3 through 12, and they and my wife need me to

> be around.

> Hopefully I can offer some support, let as many of you as

> possible know that you are not alone. I just had my first chemo

> session (FOFOX); thought I was in good shape, because Days 1-3 went

> OK. Seems like as soon as they disconnected the mobile 5-FU pump,

> everything went downhill due to GI stuff (nausea, diarrhea and

> constipation, very likely complicated by the fact that my bottom

> doesn't work quite right after surgery), thrush, and fatigue. I

was

> for all purposes nonfunctional on days 4-6. By Day 7, things

> started to get a little better. Days 8 and 9 am having good 1/2

> days (mornings had GI spasms gone by day 8). Hoping we can get

this

> fine tuned for the next 11 treatments.

> If I can offer anybody anything at this point, please let me

> know...I'll be glad to share any experiences, good or bad, and what

> helped them if they were bad. If anybody has the time to share any

> tips for getting halfway regular after having rectal resection,

> would appreciate it. Just about when starting chemo, I got

> constipated, I tried just Colaise for 2 days, which didn't work, so

> I tried Senecot-S and it resulted in violent spasms of first rock

> hard stuff then diarreha, which I then had to take Immodium to get

> rid of. Got a hemhorroid in the process as well. Off everything

> now, but afraid of constipation setting in again. Any ideas -

> thanks. Take Care - Joe

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Welcome Joe-

You came to a great spot. There are a bunch of wonderful people

here.

I can't offer any suggestions about recuperating from the rectal

surgery as I still have my ileostomy.

I am on oxaliplatin/Xeloda. I find that day 3 and 4 post

oxaliplatin are the most difficult. Although I rarely vomited, I was

quite nauseous. I tried out a variety of antiemetics before I found

one that just about completely. For me it was Emend, a drug that

works only on the late onset nausea after chemotherapy along with

occasional Atavin (lorazapam). That pretty much completely eliminates

my nausea., Everyone is different, and you might find that other

drugs work better for you. My oncologist gave me a few samples of a

variety of antinausea drugs to try out until I landed on what works

best for me.

Best wishes for a great response,

Kris

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Welcome Joe-

You came to a great spot. There are a bunch of wonderful people

here.

I can't offer any suggestions about recuperating from the rectal

surgery as I still have my ileostomy.

I am on oxaliplatin/Xeloda. I find that day 3 and 4 post

oxaliplatin are the most difficult. Although I rarely vomited, I was

quite nauseous. I tried out a variety of antiemetics before I found

one that just about completely. For me it was Emend, a drug that

works only on the late onset nausea after chemotherapy along with

occasional Atavin (lorazapam). That pretty much completely eliminates

my nausea., Everyone is different, and you might find that other

drugs work better for you. My oncologist gave me a few samples of a

variety of antinausea drugs to try out until I landed on what works

best for me.

Best wishes for a great response,

Kris

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Welcome Joe

You have come to the right place. As for the constipation. Try Milk of

Magnesia and increase your intake of fiber rich foods like fruits veggies and

whole

grains.

I am sure your oncologist or nutritionist can recommend other treatments.

Another possibility is Xeloda which is 5FU in pill form and easier on the

system.

As for the hemrhoids there is a rectal prescription cream your oncologist can

prescribe for that. Our oncologist said it should work after 1 application.

My husband is 44 and our kids are 12 and 17. I was finally able to get my own

Dr. to schedule a colonoscopy for me as ||I have a family history of polyps.

I don't know when the medical community will realize how many get cancer well

before the magic 50.

Again welcome. ||It stinks to HAVE to be here but this is a good supportive

place where you can share your hopes fears and emotions.

I pray all will go well for you keep us informed

God Bless

Narice

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Well, I'm another Joe (age 60) who has stage IV metatasitc colon

cancer -- nodules in the lung and liver. I had a colon resection and

had 10.5 cm of my sigmoid colon removed. My surgeon was able to to

the whole resect with a laparoscope! Just a few small scars left.

I have been through five full sessions of the FolFox regimen and I

am currently on my 6th.

I had problems with constipation and I was lucky enough to get

relief from taking senna. I take one pill in the AM, and 2 pills in

the PM while I am receiving chemo and continue until my normal

function returns -- usually 3 days after the chemo. The best advice

I got throughout the whole process is to keep drinking fluids. Force

yourself. I keep gatoraide and other stuff around (at room temp) and

drink at least two 20oz bottles a day, along with coffee, tea (Earl

Grey, hot) during the work day.

I find that the constipation is not severe enough to be a big issue,

just a minor irritation.

Before I got on the senna and extra fluid routine, I was suffering

during and after the chemo session. I truly sympathize with your

condition.

How are you coping with the cold sensitivity and peripheral

neuropathy from the Oxaliplatin?

-joe-

> I'm not quite sure how I stumbled onto this group, but I did,

> and looking at the messages, I am glad that I did.

> My name is Joe, I am 40 and have stage IV rectal cancer, with

> tumors in the liver known. As of last read, only in the right

> lobe. Crossing my fingers that they are nowhere else, because my

> hope is to get six months of chemo out of the way and have them

> out. I have 4 kids, 3 through 12, and they and my wife need me to

> be around.

> Hopefully I can offer some support, let as many of you as

> possible know that you are not alone. I just had my first chemo

> session (FOFOX); thought I was in good shape, because Days 1-3

went

> OK. Seems like as soon as they disconnected the mobile 5-FU pump,

> everything went downhill due to GI stuff (nausea, diarrhea and

> constipation, very likely complicated by the fact that my bottom

> doesn't work quite right after surgery), thrush, and fatigue. I

was

> for all purposes nonfunctional on days 4-6. By Day 7, things

> started to get a little better. Days 8 and 9 am having good 1/2

> days (mornings had GI spasms gone by day 8). Hoping we can get

this

> fine tuned for the next 11 treatments.

> If I can offer anybody anything at this point, please let me

> know...I'll be glad to share any experiences, good or bad, and

what

> helped them if they were bad. If anybody has the time to share

any

> tips for getting halfway regular after having rectal resection,

> would appreciate it. Just about when starting chemo, I got

> constipated, I tried just Colaise for 2 days, which didn't work,

so

> I tried Senecot-S and it resulted in violent spasms of first rock

> hard stuff then diarreha, which I then had to take Immodium to get

> rid of. Got a hemhorroid in the process as well. Off everything

> now, but afraid of constipation setting in again. Any ideas -

> thanks. Take Care - Joe

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Well, I'm another Joe (age 60) who has stage IV metatasitc colon

cancer -- nodules in the lung and liver. I had a colon resection and

had 10.5 cm of my sigmoid colon removed. My surgeon was able to to

the whole resect with a laparoscope! Just a few small scars left.

I have been through five full sessions of the FolFox regimen and I

am currently on my 6th.

I had problems with constipation and I was lucky enough to get

relief from taking senna. I take one pill in the AM, and 2 pills in

the PM while I am receiving chemo and continue until my normal

function returns -- usually 3 days after the chemo. The best advice

I got throughout the whole process is to keep drinking fluids. Force

yourself. I keep gatoraide and other stuff around (at room temp) and

drink at least two 20oz bottles a day, along with coffee, tea (Earl

Grey, hot) during the work day.

I find that the constipation is not severe enough to be a big issue,

just a minor irritation.

Before I got on the senna and extra fluid routine, I was suffering

during and after the chemo session. I truly sympathize with your

condition.

How are you coping with the cold sensitivity and peripheral

neuropathy from the Oxaliplatin?

-joe-

> I'm not quite sure how I stumbled onto this group, but I did,

> and looking at the messages, I am glad that I did.

> My name is Joe, I am 40 and have stage IV rectal cancer, with

> tumors in the liver known. As of last read, only in the right

> lobe. Crossing my fingers that they are nowhere else, because my

> hope is to get six months of chemo out of the way and have them

> out. I have 4 kids, 3 through 12, and they and my wife need me to

> be around.

> Hopefully I can offer some support, let as many of you as

> possible know that you are not alone. I just had my first chemo

> session (FOFOX); thought I was in good shape, because Days 1-3

went

> OK. Seems like as soon as they disconnected the mobile 5-FU pump,

> everything went downhill due to GI stuff (nausea, diarrhea and

> constipation, very likely complicated by the fact that my bottom

> doesn't work quite right after surgery), thrush, and fatigue. I

was

> for all purposes nonfunctional on days 4-6. By Day 7, things

> started to get a little better. Days 8 and 9 am having good 1/2

> days (mornings had GI spasms gone by day 8). Hoping we can get

this

> fine tuned for the next 11 treatments.

> If I can offer anybody anything at this point, please let me

> know...I'll be glad to share any experiences, good or bad, and

what

> helped them if they were bad. If anybody has the time to share

any

> tips for getting halfway regular after having rectal resection,

> would appreciate it. Just about when starting chemo, I got

> constipated, I tried just Colaise for 2 days, which didn't work,

so

> I tried Senecot-S and it resulted in violent spasms of first rock

> hard stuff then diarreha, which I then had to take Immodium to get

> rid of. Got a hemhorroid in the process as well. Off everything

> now, but afraid of constipation setting in again. Any ideas -

> thanks. Take Care - Joe

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Joe: Welcome aboard,this is the place to be. You sure got your initiation in

a hurry.

Things do get better. I don't have an answer to all your questions but I do

know that

someone in this group does. Here you can laugh,cry,share,vent,let it all hang

out

and that's why it's great you found us. we don't read every day but we catch

up

when we can. Hugs and prayers that all goes well, Hanf tough,believe in

yourself

and everyone will pull for you. nick & jane

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Hello Joe,

Welcome. Sorry you have cause to be here but glad you found us.

My husband has colon cancer with liver and abd mets. He was told

when first recurred that they would do surgery after a course of

chemo and radiation. He did the course of camp/5fu/leu. It did not

do anything to the tumors. He felt lousey while on chemo. After

having no change by the chemo they still wouldn't do surgery so he

quit chemo. I admire your fighting spirit. Push for surgery that is

your best chance for cure of this nasty disease. You sound like you

want to be here for a long time. Your family is lucky to have you in

their life and willing to endure to be the " miracle " for them.

We have 2 boys ages 4 and 11. He has not had any chemo since

November 03. He has said that he is willing to take Xeloda but for 3

weeks has found a convenient excuse not to go to his appointment. I

have given it into God's hands. I was so frustrated when he wouldn't

even try to fight, I felt like we were not important enough to him to

fight for us. I have since realized through the help of this group

and my christian friends that it is his choice and it is not a

reflection on me and the boys but his willingness to endure the side

effects that he was dealing with. He wants to enjoy what time he has

left and I have dedicated myself to help him in this as much as I can.

Keep up the good fight and stay positive. We are glad to welcome you

and will be praying for you and your family.

Becky Beach

caregiver to Jeff, diag 8/01 recur 5/03 with liver and abd mets

> I'm not quite sure how I stumbled onto this group, but I did,

> and looking at the messages, I am glad that I did.

> My name is Joe, I am 40 and have stage IV rectal cancer, with

> tumors in the liver known. As of last read, only in the right

> lobe. Crossing my fingers that they are nowhere else, because my

> hope is to get six months of chemo out of the way and have them

> out. I have 4 kids, 3 through 12, and they and my wife need me to

> be around.

> Hopefully I can offer some support, let as many of you as

> possible know that you are not alone. I just had my first chemo

> session (FOFOX); thought I was in good shape, because Days 1-3 went

> OK. Seems like as soon as they disconnected the mobile 5-FU pump,

> everything went downhill due to GI stuff (nausea, diarrhea and

> constipation, very likely complicated by the fact that my bottom

> doesn't work quite right after surgery), thrush, and fatigue. I

was

> for all purposes nonfunctional on days 4-6. By Day 7, things

> started to get a little better. Days 8 and 9 am having good 1/2

> days (mornings had GI spasms gone by day 8). Hoping we can get

this

> fine tuned for the next 11 treatments.

> If I can offer anybody anything at this point, please let me

> know...I'll be glad to share any experiences, good or bad, and what

> helped them if they were bad. If anybody has the time to share any

> tips for getting halfway regular after having rectal resection,

> would appreciate it. Just about when starting chemo, I got

> constipated, I tried just Colaise for 2 days, which didn't work, so

> I tried Senecot-S and it resulted in violent spasms of first rock

> hard stuff then diarreha, which I then had to take Immodium to get

> rid of. Got a hemhorroid in the process as well. Off everything

> now, but afraid of constipation setting in again. Any ideas -

> thanks. Take Care - Joe

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Hi Mark's Wife

Jeff is holding his own. He seems to be stable, although this could

change at a moments notice. His jaundice has gone away since his

liver stent replacement. The liver specialist who changed the stents

said it looked like " Jeff still has a good healthy chunk of liver " ,

very technical terms, LOL. ;) That was good news as we were all

worried that his liver might be failing since it had only been about

8 weeks from the stent replacement to onset of jaundice this last

time.

He is currently taking 80 mg oxycontin 2x per day and 30mg morphine

every 4 hours for pain. His pelvic tumors cause him severe pain down

his legs and he can't stand for longer than a couple of minutes

without the pain increasing. But still he is doing ok otherwise.

Course he hasn't had any ct scans or pets since dec 03 so we don't

know how or where the cancer might be spreading or how it is

progressing. I think for Jeff, he would rather not know.

The boys have been aware of it all throughout. They have been to

most of the doctors appointments. (I homeschooled until this last

year, so they were at home through it all) My oldest, (11)Tyler has

had some counseling at school, which he really liked and seemed to

help him. We have talked about it alot. Tyler has asked why this is

happening. We are Christians and I don't want to offend anyone but

we truly believe there is a reason for all of us going through this.

Tyler and I talked about it and he seems to understand that it is not

anything he has done (some kind of punishment for something he might

have done) which is quite common I understand for children with

ailing parents. Tyler accepted Christ when he was 9 so he really is

very aware of God in his life and how God has gotten us through this

and will not give us more than we can bear. I praise God for that

everyday. Tyler really is taking this great. The only thing we do

have a problem with is that Dad(Jeff) can't do the things with Tyler

that he would like to. Like golf, basketball, hunting, etc...

Our youngest, (4)Cameron, thinks doctors and hospitals are everyday

occurances. He was only 1 1/2 years old when Jeff was first

diagnosed. I think he will take this the hardest as he is Daddy's

buddy. I am praying that Jeff will be around for a long time so that

Cameron will have more time with him. But it is all in God's hands

and we will take it as it comes.

We have a great church family and if need be the boys can be

counseled by their youth counselor. He is a great guy and the boys

really love him.

I hope Mark is doing better. I will be praying for you and your

family. I know how much this can be as a caregiver and a mother to

young children. I pray you have a support system, God, family,

friends, church etc...

May God keep you in His hands.

Becky Beach

caregiver to Jeff, diag 8/01 recurred 5/03 with liver and abd mets

> Becky,

> Just wanted to let you know that I'm thinking of you everyday.I

hope Jeff is doing O.K. and you and the boys are fine.What tools are

you using for the children to educate them on the cancer? ( books

etc.) My son is 5 and we have never discussed the possible outcome of

the cancer.Have you?Just letting you know that you are in my prayers.

> Peace,

> Mark's Wife

> Re: Hello

>

>

> Hello Joe,

>

> Welcome. Sorry you have cause to be here but glad you found us.

>

> My husband has colon cancer with liver and abd mets. He was told

> when first recurred that they would do surgery after a course of

> chemo and radiation. He did the course of camp/5fu/leu. It did

not

> do anything to the tumors. He felt lousey while on chemo. After

> having no change by the chemo they still wouldn't do surgery so

he

> quit chemo. I admire your fighting spirit. Push for surgery

that is

> your best chance for cure of this nasty disease. You sound like

you

> want to be here for a long time. Your family is lucky to have you

in

> their life and willing to endure to be the " miracle " for them.

>

> We have 2 boys ages 4 and 11. He has not had any chemo since

> November 03. He has said that he is willing to take Xeloda but

for 3

> weeks has found a convenient excuse not to go to his

appointment. I

> have given it into God's hands. I was so frustrated when he

wouldn't

> even try to fight, I felt like we were not important enough to

him to

> fight for us. I have since realized through the help of this

group

> and my christian friends that it is his choice and it is not a

> reflection on me and the boys but his willingness to endure the

side

> effects that he was dealing with. He wants to enjoy what time he

has

> left and I have dedicated myself to help him in this as much as I

can.

>

> Keep up the good fight and stay positive. We are glad to welcome

you

> and will be praying for you and your family.

>

> Becky Beach

> caregiver to Jeff, diag 8/01 recur 5/03 with liver and abd mets

>

>

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Guest guest

Hi Mark's Wife

Jeff is holding his own. He seems to be stable, although this could

change at a moments notice. His jaundice has gone away since his

liver stent replacement. The liver specialist who changed the stents

said it looked like " Jeff still has a good healthy chunk of liver " ,

very technical terms, LOL. ;) That was good news as we were all

worried that his liver might be failing since it had only been about

8 weeks from the stent replacement to onset of jaundice this last

time.

He is currently taking 80 mg oxycontin 2x per day and 30mg morphine

every 4 hours for pain. His pelvic tumors cause him severe pain down

his legs and he can't stand for longer than a couple of minutes

without the pain increasing. But still he is doing ok otherwise.

Course he hasn't had any ct scans or pets since dec 03 so we don't

know how or where the cancer might be spreading or how it is

progressing. I think for Jeff, he would rather not know.

The boys have been aware of it all throughout. They have been to

most of the doctors appointments. (I homeschooled until this last

year, so they were at home through it all) My oldest, (11)Tyler has

had some counseling at school, which he really liked and seemed to

help him. We have talked about it alot. Tyler has asked why this is

happening. We are Christians and I don't want to offend anyone but

we truly believe there is a reason for all of us going through this.

Tyler and I talked about it and he seems to understand that it is not

anything he has done (some kind of punishment for something he might

have done) which is quite common I understand for children with

ailing parents. Tyler accepted Christ when he was 9 so he really is

very aware of God in his life and how God has gotten us through this

and will not give us more than we can bear. I praise God for that

everyday. Tyler really is taking this great. The only thing we do

have a problem with is that Dad(Jeff) can't do the things with Tyler

that he would like to. Like golf, basketball, hunting, etc...

Our youngest, (4)Cameron, thinks doctors and hospitals are everyday

occurances. He was only 1 1/2 years old when Jeff was first

diagnosed. I think he will take this the hardest as he is Daddy's

buddy. I am praying that Jeff will be around for a long time so that

Cameron will have more time with him. But it is all in God's hands

and we will take it as it comes.

We have a great church family and if need be the boys can be

counseled by their youth counselor. He is a great guy and the boys

really love him.

I hope Mark is doing better. I will be praying for you and your

family. I know how much this can be as a caregiver and a mother to

young children. I pray you have a support system, God, family,

friends, church etc...

May God keep you in His hands.

Becky Beach

caregiver to Jeff, diag 8/01 recurred 5/03 with liver and abd mets

> Becky,

> Just wanted to let you know that I'm thinking of you everyday.I

hope Jeff is doing O.K. and you and the boys are fine.What tools are

you using for the children to educate them on the cancer? ( books

etc.) My son is 5 and we have never discussed the possible outcome of

the cancer.Have you?Just letting you know that you are in my prayers.

> Peace,

> Mark's Wife

> Re: Hello

>

>

> Hello Joe,

>

> Welcome. Sorry you have cause to be here but glad you found us.

>

> My husband has colon cancer with liver and abd mets. He was told

> when first recurred that they would do surgery after a course of

> chemo and radiation. He did the course of camp/5fu/leu. It did

not

> do anything to the tumors. He felt lousey while on chemo. After

> having no change by the chemo they still wouldn't do surgery so

he

> quit chemo. I admire your fighting spirit. Push for surgery

that is

> your best chance for cure of this nasty disease. You sound like

you

> want to be here for a long time. Your family is lucky to have you

in

> their life and willing to endure to be the " miracle " for them.

>

> We have 2 boys ages 4 and 11. He has not had any chemo since

> November 03. He has said that he is willing to take Xeloda but

for 3

> weeks has found a convenient excuse not to go to his

appointment. I

> have given it into God's hands. I was so frustrated when he

wouldn't

> even try to fight, I felt like we were not important enough to

him to

> fight for us. I have since realized through the help of this

group

> and my christian friends that it is his choice and it is not a

> reflection on me and the boys but his willingness to endure the

side

> effects that he was dealing with. He wants to enjoy what time he

has

> left and I have dedicated myself to help him in this as much as I

can.

>

> Keep up the good fight and stay positive. We are glad to welcome

you

> and will be praying for you and your family.

>

> Becky Beach

> caregiver to Jeff, diag 8/01 recur 5/03 with liver and abd mets

>

>

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Guest guest

Hi Mark's Wife

Jeff is holding his own. He seems to be stable, although this could

change at a moments notice. His jaundice has gone away since his

liver stent replacement. The liver specialist who changed the stents

said it looked like " Jeff still has a good healthy chunk of liver " ,

very technical terms, LOL. ;) That was good news as we were all

worried that his liver might be failing since it had only been about

8 weeks from the stent replacement to onset of jaundice this last

time.

He is currently taking 80 mg oxycontin 2x per day and 30mg morphine

every 4 hours for pain. His pelvic tumors cause him severe pain down

his legs and he can't stand for longer than a couple of minutes

without the pain increasing. But still he is doing ok otherwise.

Course he hasn't had any ct scans or pets since dec 03 so we don't

know how or where the cancer might be spreading or how it is

progressing. I think for Jeff, he would rather not know.

The boys have been aware of it all throughout. They have been to

most of the doctors appointments. (I homeschooled until this last

year, so they were at home through it all) My oldest, (11)Tyler has

had some counseling at school, which he really liked and seemed to

help him. We have talked about it alot. Tyler has asked why this is

happening. We are Christians and I don't want to offend anyone but

we truly believe there is a reason for all of us going through this.

Tyler and I talked about it and he seems to understand that it is not

anything he has done (some kind of punishment for something he might

have done) which is quite common I understand for children with

ailing parents. Tyler accepted Christ when he was 9 so he really is

very aware of God in his life and how God has gotten us through this

and will not give us more than we can bear. I praise God for that

everyday. Tyler really is taking this great. The only thing we do

have a problem with is that Dad(Jeff) can't do the things with Tyler

that he would like to. Like golf, basketball, hunting, etc...

Our youngest, (4)Cameron, thinks doctors and hospitals are everyday

occurances. He was only 1 1/2 years old when Jeff was first

diagnosed. I think he will take this the hardest as he is Daddy's

buddy. I am praying that Jeff will be around for a long time so that

Cameron will have more time with him. But it is all in God's hands

and we will take it as it comes.

We have a great church family and if need be the boys can be

counseled by their youth counselor. He is a great guy and the boys

really love him.

I hope Mark is doing better. I will be praying for you and your

family. I know how much this can be as a caregiver and a mother to

young children. I pray you have a support system, God, family,

friends, church etc...

May God keep you in His hands.

Becky Beach

caregiver to Jeff, diag 8/01 recurred 5/03 with liver and abd mets

> Becky,

> Just wanted to let you know that I'm thinking of you everyday.I

hope Jeff is doing O.K. and you and the boys are fine.What tools are

you using for the children to educate them on the cancer? ( books

etc.) My son is 5 and we have never discussed the possible outcome of

the cancer.Have you?Just letting you know that you are in my prayers.

> Peace,

> Mark's Wife

> Re: Hello

>

>

> Hello Joe,

>

> Welcome. Sorry you have cause to be here but glad you found us.

>

> My husband has colon cancer with liver and abd mets. He was told

> when first recurred that they would do surgery after a course of

> chemo and radiation. He did the course of camp/5fu/leu. It did

not

> do anything to the tumors. He felt lousey while on chemo. After

> having no change by the chemo they still wouldn't do surgery so

he

> quit chemo. I admire your fighting spirit. Push for surgery

that is

> your best chance for cure of this nasty disease. You sound like

you

> want to be here for a long time. Your family is lucky to have you

in

> their life and willing to endure to be the " miracle " for them.

>

> We have 2 boys ages 4 and 11. He has not had any chemo since

> November 03. He has said that he is willing to take Xeloda but

for 3

> weeks has found a convenient excuse not to go to his

appointment. I

> have given it into God's hands. I was so frustrated when he

wouldn't

> even try to fight, I felt like we were not important enough to

him to

> fight for us. I have since realized through the help of this

group

> and my christian friends that it is his choice and it is not a

> reflection on me and the boys but his willingness to endure the

side

> effects that he was dealing with. He wants to enjoy what time he

has

> left and I have dedicated myself to help him in this as much as I

can.

>

> Keep up the good fight and stay positive. We are glad to welcome

you

> and will be praying for you and your family.

>

> Becky Beach

> caregiver to Jeff, diag 8/01 recur 5/03 with liver and abd mets

>

>

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Guest guest

Hello a,

We have talked to his onc and family doctor about using a patch but

they have both said that it would not be enough to control the pain.

I am going to try and talk to them again about this for the

breakthrough pain. But right now his regular pain med is not

controlling his pain sufficiently anyway. They both told him that

the next step up for him would be a subcutaneous morphine pump. Jeff

is putting this off as it will really keep him from going out of the

house.

Thanks for the info though. I am going to research some more on this

as I feel the doctors aren't doing enough for him in pain

management. If they can't help us I am going to push for him to see

a pain management specialist.

Becky Beach

caregiver to Jeff diag 8/01 recur with liver and abd mets 5/03

>

> Hi Mark's Wife

>

> Jeff is holding his own. He seems to be stable, although this

could

> change at a moments notice. His jaundice has gone away since his

> liver stent replacement. The liver specialist who changed the

stents

> said it looked like " Jeff still has a good healthy chunk of liver " ,

> very technical terms, LOL. ;) That was good news as we were all

> worried that his liver might be failing since it had only been

about

> 8 weeks from the stent replacement to onset of jaundice this last

> time.

>

> He is currently taking 80 mg oxycontin 2x per day and 30mg morphine

> every 4 hours for pain. His pelvic tumors cause him severe pain

down

> his legs and he can't stand for longer than a couple of minutes

> without the pain increasing. But still he is doing ok otherwise.

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Guest guest

Hello a,

We have talked to his onc and family doctor about using a patch but

they have both said that it would not be enough to control the pain.

I am going to try and talk to them again about this for the

breakthrough pain. But right now his regular pain med is not

controlling his pain sufficiently anyway. They both told him that

the next step up for him would be a subcutaneous morphine pump. Jeff

is putting this off as it will really keep him from going out of the

house.

Thanks for the info though. I am going to research some more on this

as I feel the doctors aren't doing enough for him in pain

management. If they can't help us I am going to push for him to see

a pain management specialist.

Becky Beach

caregiver to Jeff diag 8/01 recur with liver and abd mets 5/03

>

> Hi Mark's Wife

>

> Jeff is holding his own. He seems to be stable, although this

could

> change at a moments notice. His jaundice has gone away since his

> liver stent replacement. The liver specialist who changed the

stents

> said it looked like " Jeff still has a good healthy chunk of liver " ,

> very technical terms, LOL. ;) That was good news as we were all

> worried that his liver might be failing since it had only been

about

> 8 weeks from the stent replacement to onset of jaundice this last

> time.

>

> He is currently taking 80 mg oxycontin 2x per day and 30mg morphine

> every 4 hours for pain. His pelvic tumors cause him severe pain

down

> his legs and he can't stand for longer than a couple of minutes

> without the pain increasing. But still he is doing ok otherwise.

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Guest guest

Hello a,

We have talked to his onc and family doctor about using a patch but

they have both said that it would not be enough to control the pain.

I am going to try and talk to them again about this for the

breakthrough pain. But right now his regular pain med is not

controlling his pain sufficiently anyway. They both told him that

the next step up for him would be a subcutaneous morphine pump. Jeff

is putting this off as it will really keep him from going out of the

house.

Thanks for the info though. I am going to research some more on this

as I feel the doctors aren't doing enough for him in pain

management. If they can't help us I am going to push for him to see

a pain management specialist.

Becky Beach

caregiver to Jeff diag 8/01 recur with liver and abd mets 5/03

>

> Hi Mark's Wife

>

> Jeff is holding his own. He seems to be stable, although this

could

> change at a moments notice. His jaundice has gone away since his

> liver stent replacement. The liver specialist who changed the

stents

> said it looked like " Jeff still has a good healthy chunk of liver " ,

> very technical terms, LOL. ;) That was good news as we were all

> worried that his liver might be failing since it had only been

about

> 8 weeks from the stent replacement to onset of jaundice this last

> time.

>

> He is currently taking 80 mg oxycontin 2x per day and 30mg morphine

> every 4 hours for pain. His pelvic tumors cause him severe pain

down

> his legs and he can't stand for longer than a couple of minutes

> without the pain increasing. But still he is doing ok otherwise.

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Guest guest

I hope you get an appt. with the specialist soon. That is a part of Nicks

problem,

pain,but not that bad. He cannot walk long,but he drives and stops every so

often

and reclines. We only go short distances. The pain meds are every 6 hours and

can cause dizzness and make you sleepy,so we have cut out any long trips and

we have tried to be sure we are careful in all the meds he is taking. I know

how

you feel and sometimes its hard to keep a Walmart Face(Happy Face) sometimes

I get angry with him,with myself and with the world then I read his and

realize we

are not alone,millions of people have cancer. Hundreds are wrose off,and we

have

familt friends and hope. You are like that,I think of people like you as I do

stars.

On a clear night each star is a prayer being sent up there and each flower is

a sign

of hope and rebirth. We are lucky,no snow.no blizzards,no terrible tornadoes

or floods.God has blessed us,and we hope he blesses you also. hang tough. Hugs

and good thoughts Nick & jane

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Sorry to hear about the new complications. I hope the chane over to

avastin will help, but I would talk to your oncologist about the

possible side effects of avastin. My onc and I decided not to try it

for now, but my current treatment seems to be working well. If that

changes, maybe avastin is next.

Is it possible to drain out all the " floaters " and give your system

a chance to catch up with the remaing cancer?

Best of luck to you;

We need you to keep posting good info.

the other -joe-

> All,

> Took a couple of days off from the board due to a

> hospitalization. A fever popped up and I ended up staying in for

3

> days. It happened to coincide with when I was supposed to have my

> scans, so I had them and got the results. Would be interested in

> any opinions.

> The scans showed that the lesions in my liver were reduced by

> 50%. Great news. Dancing in the streets. However, the scans

also

> showed a " funny " pocket of stuff outside of where my rectum is

> hooked back together and where a leak and abcess and infection had

> previously occurred - the docs thought that it might again be the

> source of the infections, so they needle biopsied it. No

infection,

> but they found more cancer. Bummer. The docs were really

> surprised, since rarely do they see stuff react well in one area

but

> pop up in another area. The radiologist also said that there was

> nothing solid there - just a pocket of fluid like stuff with some

> floaters.

> The onc thinks that its a recurrent type of thing; the GI

thinks

> it has probably been there all along (it wasn't biopsied during

the

> leakage - just cultured). At any rate, the onc wants to cut off

> folfox and start folfiri with avastin. Probably partially because

> of that, partially because he didn't use it initially because he

> wanted the surgery to heal more (avastin has been suspected of

> causing some wounds to become undone) and partially because my GI

> tract is totally messed up to the point that I have more or less

> chronic diaherria and pretty large amounts of gas and will take a

> week or two off anyway. We'll talk more to the onc on Monday.

> Anybody had anything like this - and, can it be treated

> separately with something like targetted radiation? Thanks.

>

> Joe

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Sorry to hear about the new complications. I hope the chane over to

avastin will help, but I would talk to your oncologist about the

possible side effects of avastin. My onc and I decided not to try it

for now, but my current treatment seems to be working well. If that

changes, maybe avastin is next.

Is it possible to drain out all the " floaters " and give your system

a chance to catch up with the remaing cancer?

Best of luck to you;

We need you to keep posting good info.

the other -joe-

> All,

> Took a couple of days off from the board due to a

> hospitalization. A fever popped up and I ended up staying in for

3

> days. It happened to coincide with when I was supposed to have my

> scans, so I had them and got the results. Would be interested in

> any opinions.

> The scans showed that the lesions in my liver were reduced by

> 50%. Great news. Dancing in the streets. However, the scans

also

> showed a " funny " pocket of stuff outside of where my rectum is

> hooked back together and where a leak and abcess and infection had

> previously occurred - the docs thought that it might again be the

> source of the infections, so they needle biopsied it. No

infection,

> but they found more cancer. Bummer. The docs were really

> surprised, since rarely do they see stuff react well in one area

but

> pop up in another area. The radiologist also said that there was

> nothing solid there - just a pocket of fluid like stuff with some

> floaters.

> The onc thinks that its a recurrent type of thing; the GI

thinks

> it has probably been there all along (it wasn't biopsied during

the

> leakage - just cultured). At any rate, the onc wants to cut off

> folfox and start folfiri with avastin. Probably partially because

> of that, partially because he didn't use it initially because he

> wanted the surgery to heal more (avastin has been suspected of

> causing some wounds to become undone) and partially because my GI

> tract is totally messed up to the point that I have more or less

> chronic diaherria and pretty large amounts of gas and will take a

> week or two off anyway. We'll talk more to the onc on Monday.

> Anybody had anything like this - and, can it be treated

> separately with something like targetted radiation? Thanks.

>

> Joe

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Sorry to hear about the rough time you've had. I was just wondering

how sure they are that the stuff by your surgical site is tumor. I

had a biopsy of lymph node as well as of aa pocket of stuff next to

my rectal anastamosis site 2 mths post op. I was listening to the

pathologist as she read the slides right in the CT suite. There was

no question in her mind that I had carcinoma in a lymph node, but she

read out the stuff by my rectum as " probable " carcinoma. On a CT 2

mth later it was gone, with no chemotherapy or other treatment having

been given.

They do do radiation of tumor in the pelvis, but they are very

reluctant to do it if you have had radiation of the pelvic area

previously. This is because radiation does cause some damage to

normal tissue that may be cumulative, causing more side effects over

the long term if radiation is repeated. They usually will only

consider repeat radiation if you are having significant symptoms.

I hope things get better soon.

Kris

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Sorry to hear about the rough time you've had. I was just wondering

how sure they are that the stuff by your surgical site is tumor. I

had a biopsy of lymph node as well as of aa pocket of stuff next to

my rectal anastamosis site 2 mths post op. I was listening to the

pathologist as she read the slides right in the CT suite. There was

no question in her mind that I had carcinoma in a lymph node, but she

read out the stuff by my rectum as " probable " carcinoma. On a CT 2

mth later it was gone, with no chemotherapy or other treatment having

been given.

They do do radiation of tumor in the pelvis, but they are very

reluctant to do it if you have had radiation of the pelvic area

previously. This is because radiation does cause some damage to

normal tissue that may be cumulative, causing more side effects over

the long term if radiation is repeated. They usually will only

consider repeat radiation if you are having significant symptoms.

I hope things get better soon.

Kris

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Guest guest

Sorry to hear about the rough time you've had. I was just wondering

how sure they are that the stuff by your surgical site is tumor. I

had a biopsy of lymph node as well as of aa pocket of stuff next to

my rectal anastamosis site 2 mths post op. I was listening to the

pathologist as she read the slides right in the CT suite. There was

no question in her mind that I had carcinoma in a lymph node, but she

read out the stuff by my rectum as " probable " carcinoma. On a CT 2

mth later it was gone, with no chemotherapy or other treatment having

been given.

They do do radiation of tumor in the pelvis, but they are very

reluctant to do it if you have had radiation of the pelvic area

previously. This is because radiation does cause some damage to

normal tissue that may be cumulative, causing more side effects over

the long term if radiation is repeated. They usually will only

consider repeat radiation if you are having significant symptoms.

I hope things get better soon.

Kris

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Is Avastin advisable in your case? It can cause internal bleeding and with

the fluid build up in these floater cells I would worry about that almost as

much as this set back.

Would Erbitux be a better choice for now until you know more.

Sorry Joe but I'd want another opinion on this one.

God Bless,

Narice

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