CT Scans

[Guest guest]

Take all the time you need , when the " fog " is lift and the moods

are in check. We will be GLAD to hear from you again! Hugs.

On Mon, 26 Jan 2009 8:30, lkozlik@... wrote:

> My moods are out of sync right now due to my bipolar. Because of that,

> I would prefer to lurk for awhile. Hope you and others on the list

> understand.

>

>

> Bilateral Cochlear CIs

> December 2004 and February 2006

> Deafblind/Postlingual

>

> ---- Alice <alice@...> wrote:

>> ,

>>

>> One way or the other, we are very interested in your CT Scan

>> results. Please feel free to post them unless you wish personally to

>> keep the results private. We're here to support you thru this. I'm

>> hoping that there is nothing to worry about but I do know what it

>> feels like to worry about the results.

>>

>> Alice

>> http://www..com

>>

>>

>> >

>> > I think after I have my CT scan on Wednesday I'll keep the results

>> to myself so I don't alarm anyone. On various forums it seems that all

>> I do lately is post messages that cause some kind of concern one way

>> or another, so I think I'm going to start being a lurker instead.

>> >

>> >

>> > Bilateral Cochlear CIs

>> > December 2004 and February 2006

>> > Deafblind/Postlingual

>> >

>>

>>

>

>

The Cat addicted to hearing, MEOW!!!

~ Kitty S. ~

Cochlear Volunteer

IMP'D-R: 09.07.06 L: 09.04.08 (Freedom CA)

ACT'D-R: 09.22.06 L: 09.15.08

HOSPITAL: Northwestern Memorial

SURGEON: Dr. Alan Micco

AUDI: Pamela J. Fiebig

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DeafCIEars-subscribe

[Guest guest]

I ditto that .  Remember, we all worry and care about you!!  Take care of

yourself!  Hugs from me too!

 

 

From: Kitty S.. CharidaRose@...

Take all the time you need , when the " fog " is lift and the moods

are in check. We will be GLAD to hear from you again! Hugs.

 

[Guest guest]

dear, we all understand. Yes to lurking but no to leaving the list or

Dolly Dolphin will chase you back onto the CI Hear.

Please take care of yourself and drink your mochas (hey please fork over

those mochas you owe ).

Dolly Dolphin

wrote:

My moods are out of sync right now due to my bipolar. Because of that, I would

prefer to lurk for awhile. Hope you and others on the list understand.

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

[Guest guest]

Dolly,

I am only too happy to fork over, what is the count now, something like

362 mochas. LOL I was going to have two this morning but decided to save

the one for when she wants it.

*---* *---* *---* *---* *---*

Law of the Result: When you try to prove to someone that a machine won't

work, it will.

& Dreamer Doll ke7nwn

E-mail-

rclark0276@...

Home Page-

http://webpages.charter.net/dog_guide/

[Guest guest]

, my good woman,

WE are all concerned about you, so don't just be a lurker. Are you

cycling to depressed stages? Your mail sounds like it.

We were just trying to convince you that you are worrying for nothing.

CT scans are easy as pie, nothing to worry about.

But we want to know how you are, so don't disappear. The snowball

fight is just starting and , Dreamer, Nimue and I need you and

Tigger on our side.

I think after I have my CT scan on Wednesday I'll keep the results to

myself so I don't alarm anyone. On various forums it seems that all I do

lately is post messages that cause some kind of concern one way or

another, so I think I'm going to start being a lurker instead.

____________________________________________________________

Stuck in a dead end job?? Click to start living your dreams by earning an online

degree.

http://thirdpartyoffers.juno.com/TGL2141/fc/PnY6rw2kE6lWUS7u7oqDkmNYZj6aLihmaVli\

pfjX3vbLA3poXJ19R/

[Guest guest]

,

Yes, I was rapid cycling into depression yesterday, but I'm fine now. The 362

mochas gave me helped. LOL!

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

---- M Jansen <nucleus24@...> wrote:

> , my good woman,

> WE are all concerned about you, so don't just be a lurker. Are you

> cycling to depressed stages? Your mail sounds like it.

> We were just trying to convince you that you are worrying for nothing.

> CT scans are easy as pie, nothing to worry about.

> But we want to know how you are, so don't disappear. The snowball

> fight is just starting and , Dreamer, Nimue and I need you and

> Tigger on our side.

>

>

>

> I think after I have my CT scan on Wednesday I'll keep the results to

> myself so I don't alarm anyone. On various forums it seems that all I do

> lately is post messages that cause some kind of concern one way or

> another, so I think I'm going to start being a lurker instead.

> ____________________________________________________________

> Stuck in a dead end job?? Click to start living your dreams by earning an

online degree.

>

http://thirdpartyoffers.juno.com/TGL2141/fc/PnY6rw2kE6lWUS7u7oqDkmNYZj6aLihmaVli\

pfjX3vbLA3poXJ19R/

>

>

[Guest guest]

,

Let's see... and Dreamer or you and Nuance. Who shall I pick? Decisions,

decisions. I'll give you a hint: Whoever will pay me the most money to be on

their team. LOL!

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

---- lkozlik@... wrote:

> ,

>

> Yes, I was rapid cycling into depression yesterday, but I'm fine now. The 362

mochas gave me helped. LOL!

>

>

> Bilateral Cochlear CIs

> December 2004 and February 2006

> Deafblind/Postlingual

>

> ---- M Jansen <nucleus24@...> wrote:

> > , my good woman,

> > WE are all concerned about you, so don't just be a lurker. Are you

> > cycling to depressed stages? Your mail sounds like it.

> > We were just trying to convince you that you are worrying for nothing.

> > CT scans are easy as pie, nothing to worry about.

> > But we want to know how you are, so don't disappear. The snowball

> > fight is just starting and , Dreamer, Nimue and I need you and

> > Tigger on our side.

> >

> >

> >

> > I think after I have my CT scan on Wednesday I'll keep the results to

> > myself so I don't alarm anyone. On various forums it seems that all I do

> > lately is post messages that cause some kind of concern one way or

> > another, so I think I'm going to start being a lurker instead.

> > ____________________________________________________________

> > Stuck in a dead end job?? Click to start living your dreams by earning an

online degree.

> >

http://thirdpartyoffers.juno.com/TGL2141/fc/PnY6rw2kE6lWUS7u7oqDkmNYZj6aLihmaVli\

pfjX3vbLA3poXJ19R/

> >

> >

[Guest guest]

I've had lots of CAT scans since having my two CIs. There is no problem

with it as related to a CI. it is an MRI that you can't have without having

the magnet in your head removed. HTH Jackie )

**************New Deals on Dell Netbooks – Now starting at $299 (A

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[Guest guest]

Thanks for letting me know that.  There is sooo much we are still learning. 

We thought it was just the MRI that he couldn't have, but others online are

talking about special precautions for a colonoscopy so we just wanted to make

sure.  Thanks so much.

Bea

________________________________

From: " Flashwun@... " <Flashwun@...>

Sent: Wednesday, April 8, 2009 12:00:14 PM

Subject: Re:CT scans

I've had lots of CAT scans since having my two CIs. There is no problem

with it as related to a CI. it is an MRI that you can't have without having

the magnet in your head removed. HTH Jackie )

************ **New Deals on Dell Netbooks – Now starting at $299 (A

HREF=http://pr.atwola. com/promoclk/ 100126575x121993 9010x1201342897/

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[Guest guest]

When I had a bout of vertigo a couple of years ago-I drove myself to the

ER-don't really know how I did that-they did a CAT scan of my head.  There is no

problem with this-I did take off my processors while I had the scan done though.

Meclizine was prescribed when I went to the ER.  I've had minor bouts of vertigo

since, but don't like taking this medication if it is early in the day-since it

makes me very sleepy.

Lil Klein ~ Hampshire, IL

[Guest guest]

As a normal control, probably no more than once a year. If your disease is progressing, perhaps more often -

In a message dated 4/10/2009 9:35:34 A.M. Eastern Daylight Time, cray136@... writes:

How often are CT scans needed? I am in complete remission after FCR however I am still low RBC11.7, HCT33.10 and PLT 106. I recently went to a new Onc. HEM. he did my first CT scan since 2004 in March 2009. Results were good but the spleen is slightly enlarged.

How often should we have scans? He wants to do another in August. That would be every six months. I hated drinking the barium. I didn't have a reaction to the dye but I was concerned about having a another scan so soon.

How often is normal? Typical? Standard?

Thanks for your help,

Carol Ray

58, dx CLL/SLL April fools/02, zap 70+, mutated, 2004 initial tx w Rituxan and with GM-CSF , 2005 2nd cycle of Rituxan and with GM-CSF, progression of disease Nov 2007 FCR & GM-CSF (trail with Dr. Keating)

Worried about job security? Check out the 5 safest jobs in a recession.

[Guest guest]

My former oncologist thought every two years was appropriate for just

monitoring. My current oncologist thinks less is more unless there is a

reason. In your case checking the spleen may be important.

Pat

Re: CT scans

As a normal control, probably no more than once a year. If your disease

is

progressing, perhaps more often -

In a message dated 4/10/2009 9:35:34 A.M. Eastern Daylight Time,

cray136@... writes:

How often are CT scans needed? I am in complete remission

after FCR however I am still low RBC11.7, HCT33.10 and PLT 106. I

recently

went to a new Onc. HEM. he did my first CT scan since 2004 in March

2009.

Results were good but the spleen is slightly enlarged.

How often should we have scans? He wants to do another in

August. That would be every six months. I hated drinking the

barium. I

didn't have a reaction to the dye but I was concerned about having

a another

scan so soon.

How often is normal? Typical? Standard?

Thanks for your help,

Carol Ray

58, dx CLL/SLL April fools/02,

zap 70+, mutated, 2004 initial tx w Rituxan and with GM-CSF ,

2005 2nd cycle of

Rituxan and with GM-CSF, progression of disease

Nov 2007 FCR & GM-CSF (trail with Dr.

Keating)

Worried about job security? Check out the 5 safest jobs in a recession.

[Guest guest]

Pat and ,

Thanks for your reply. It is amazing how comforting it can be to hear from others.

Thanks

Carol

Re: CT scansAs a normal control, probably no more than once a year. If your disease isprogressing, perhaps more often - In a message dated 4/10/2009 9:35:34 A.M. Eastern Daylight Time,cray136embarqmail writes:How often are CT scans needed? I am in complete remissionafter FCR however I am still low RBC11.7, HCT33.10 and PLT 106. I recentlywent to a new Onc. HEM. he did my first CT scan since 2004 in March 2009.Results were good but the spleen is slightly enlarged.How often should we have scans? He wants to do another inAugust. That would be every six months. I hated drinking the barium. Ididn't have a reaction to the dye but I was concerned about having a anotherscan so soon.How often is normal? Typical? Standard?Thanks for your help,Carol Ray58, dx CLL/SLL April fools/02,zap 70+, mutated, 2004 initial tx w Rituxan and with GM-CSF ,2005 2nd cycle ofRituxan and with GM-CSF, progression of diseaseNov 2007 FCR & GM-CSF (trail with Dr.Keating)Worried about job security? Check out the 5 safest jobs in a recession.

[Guest guest]

Carol,

An ultrasound by a skillful technician does

a good job of checking the size of the spleen, as does palpation if it extends

beyond the costal margin (rib cage). In my opinion a spleen enlargement is not

a good enough reason to have a CT. It is a valuable tool to detect lymph node

enlargement/progression where they cannot be palpated and should be reserved

for that. I recently read that the radiation of a CT equals 600 times that of a

chest x-ray. . . . When I was in an automobile accident three weeks ago, the ER

doc ordered a CT to check out the pain in my chest and I declined. We need to

limit our exposure to radiation to when it is absolutely necessary.

How often to have a CT has to be

determined on an individual basis.

Be well,

Margarete

[Guest guest]

On Apr 10, 2009, at 7:46 PM, Carol wrote:

>

>

> Pat and ,

> Thanks for your reply. It is amazing how comforting it can be to hear

> from others.

> Thanks

> Carol

>> Re: CT scans

>>

>> As a normal control, probably no more than once a year. If your

>> disease

>> is

>> progressing, perhaps more often -

>>

>> In a message dated 4/10/2009 9:35:34 A.M. Eastern Daylight Time,

>> cray136@... writes:

>>

>> How often are CT scans needed? I am in complete remission

>> after FCR however I am still low RBC11.7, HCT33.10 and PLT 106. I

>> recently

>> went to a new Onc. HEM. he did my first CT scan since 2004 in March

>> 2009.

>> Results were good but the spleen is slightly enlarged.

>>

>> How often should we have scans? He wants to do another in

>> August. That would be every six months. I hated drinking the

>> barium. I

>> didn't have a reaction to the dye but I was concerned about having

>> a another

>> scan so soon.

>> How often is normal? Typical? Standard?

>> Thanks for your help,

>>

>> Carol Ray

>> 58, dx CLL/SLL April fools/02,

>> zap 70+, mutated, 2004 initial tx w Rituxan and with GM-CSF ,

>> 2005 2nd cycle of

>> Rituxan and with GM-CSF, progression of disease

>> Nov 2007 FCR & GM-CSF (trail with Dr.

>> Keating)

>>

>> Worried about job security? Check out the 5 safest jobs in a

>> recession.

>>

>

[Guest guest]

Hi Carol,

I have CLL/SLL but I was treated with hyper-CVAD for my mantle cell lymphoma. I am in CR but my doctor at MDA has ordered a CT, PET, and BMB every 3 months for the next 2 years. A nurse gave me this tip: drink the barium through a straw and place the straw on one side of your mouth. This way the "Nasty" taste will only be limited to one side of you mouth. Don't pick a flavor that you like because you will not like it anymore. I heard that mixed berry is the most popular but I see people drinking a variety of flavors. Good Luck.

Prayers Heal, Holli Hurry! April 15th is almost here. File your Federal taxes FREE with TaxACT.

[Guest guest]

My trick with the barium is to make sure it's very cold and then drink it through a straw placed as far back in my mouth as possible. That way I taste the least possible amount of it anywhere on my tongue.Pat

On Sat, Apr 11, 2009 at 5:54 AM, <Micknut2@...> wrote:

Hi Carol,

I have CLL/SLL but I was treated with hyper-CVAD for my mantle cell lymphoma. I am in CR but my doctor at MDA has ordered a CT, PET, and BMB every 3 months for the next 2 years. A nurse gave me this tip: drink the barium through a straw and place the straw on one side of your mouth. This way the " Nasty " taste will only be limited to one side of you mouth. Don't pick a flavor that you like because you will not like it anymore. I heard that mixed berry is the most popular but I see people drinking a variety of flavors. Good Luck.

 

Prayers Heal, Holli

Hurry! April 15th is almost here. File your Federal taxes FREE with TaxACT.

[Guest guest]

Lynn,

Had a CT scan as part of initial staging (Dec 05) for a baseline, another in late 08 as prep for treatment (pre-treatment baseline/restaging), and expect one in Jan 10 post-RFC-Lite for post- treatment eval and restaging. Dye both times so far w/out problems.

Useful for CLL-related eval, and perhaps as important, a chance for an experienced radiologist to look for otherwise undetected problems, such as a secondary cancer. In my case, extensive diverticulosis and deteriorated spinal discs have motivated diet and exercise adjustments. CT's have enabled detection and tracking of those conditions.

Tim

[Guest guest]

Have you read this article about the Novantrone? http://clltopics.org/ClinTrials/MitoxantroneplusFCR.htm

There are significant potential complications with this treatment, so you might want to get a 2nd opinion before any further rounds. It's possible or likely that a CLL specialist would prefer to use FR or FCR.

We all need to be part of the decision making process for treating this disease. Given there is no proof that early treatment leads to better outcomes, and that your husband was feeling well and stable, perhaps there was no need to begin treatment. You and your husband can make an informed decision about what to do, rather than be pushed into treatment against your better instincts.

Ron

In a message dated 1/14/2010 6:55:23 A.M. Pacific Standard Time, writes:

I have a quick question about CT scan and the need at what point to have one done.My husband will finish his 6th cycle of Fludara and Novantrone today, at the end of 3rd cycle he had a scan, showing only 20% decrease of nodes. At that time the Dr. suggested 6 more cycles, saying he's slow to respond, now at the end of 6 he wants to scan, see what's going on. My thought is, we know he's slow to respond, you (Dr.) said so yourself, having read that some

[Guest guest]

You are so right about being pushed into treatment against better instincts. I am a shy person, husband even shyer. When i ask questions this Dr. doesn't listen, even shmirks at my queastions. I have been trying to get my husband to go to someone new, and i think after the last visit, he's ready to go. the reason for no Rituxan is he had a reaction to it preveously, Long story.

I was given a name of Dr, Bryrd in Columbus, OH, that I am working to get an appt with. thanks.

From: "Rekarp@..." <Rekarp@...> Sent: Thu, January 14, 2010 3:06:16 PMSubject: Re: CT Scans

Have you read this article about the Novantrone? http://clltopics. org/ClinTrials/ Mitoxantroneplus FCR.htm

There are significant potential complications with this treatment, so you might want to get a 2nd opinion before any further rounds. It's possible or likely that a CLL specialist would prefer to use FR or FCR.

We all need to be part of the decision making process for treating this disease. Given there is no proof that early treatment leads to better outcomes, and that your husband was feeling well and stable, perhaps there was no need to begin treatment. You and your husband can make an informed decision about what to do, rather than be pushed into treatment against your better instincts.

Ron

In a message dated 1/14/2010 6:55:23 A.M. Pacific Standard Time, groups (DOT) com writes:

I have a quick question about CT scan and the need at what point to have one done.My husband will finish his 6th cycle of Fludara and Novantrone today, at the end of 3rd cycle he had a scan, showing only 20% decrease of nodes. At that time the Dr. suggested 6 more cycles, saying he's slow to respond, now at the end of 6 he wants to scan, see what's going on. My thought is, we know he's slow to respond, you (Dr.) said so yourself, having read that some

[Guest guest]

,

The idea sounds like a wise one, and I second it.  I expect you’ll

both be glad you did.

Best wishes,

Karni

------------------------------

I was given a name of Dr, Bryrd in Columbus, OH, that I am

working to get an appt with. thanks.

[Guest guest]

,

Should you choose to visit Dr. Byrd in Columbus, you will find that he is kind, compassionate, determined for personal reasons to find cures for cancer and an extraordinary listener. I see him and no question is deemed foolish - quite to the contrary. I would encourage you to see him and best of luck to you.

From: Venne <stephanie_venne@...> Sent: Fri, January 15, 2010 12:52:07 AMSubject: Re: Re: CT Scans

You are so right about being pushed into treatment against better instincts. I am a shy person, husband even shyer. When i ask questions this Dr. doesn't listen, even shmirks at my queastions. I have been trying to get my husband to go to someone new, and i think after the last visit, he's ready to go. the reason for no Rituxan is he had a reaction to it preveously, Long story.

I was given a name of Dr, Bryrd in Columbus, OH, that I am working to get an appt with. thanks.

From: "Rekarpaol (DOT) com" <Rekarp@...>groups (DOT) comSent: Thu, January 14, 2010 3:06:16 PMSubject: Re: CT Scans

Have you read this article about the Novantrone? http://clltopics. org/ClinTrials/ Mitoxantroneplus FCR.htm

There are significant potential complications with this treatment, so you might want to get a 2nd opinion before any further rounds. It's possible or likely that a CLL specialist would prefer to use FR or FCR.

We all need to be part of the decision making process for treating this disease. Given there is no proof that early treatment leads to better outcomes, and that your husband was feeling well and stable, perhaps there was no need to begin treatment. You and your husband can make an informed decision about what to do, rather than be pushed into treatment against your better instincts.

Ron

In a message dated 1/14/2010 6:55:23 A.M. Pacific Standard Time, groups (DOT) com writes:

I have a quick question about CT scan and the need at what point to have one done.My husband will finish his 6th cycle of Fludara and Novantrone today, at the end of 3rd cycle he had a scan, showing only 20% decrease of nodes. At that time the Dr. suggested 6 more cycles, saying he's slow to respond, now at the end of 6 he wants to scan, see what's going on. My thought is, we know he's slow to respond, you (Dr.) said so yourself, having read that some

[Guest guest]

I too am a patient of Dr. Byrd and can not sing praises of him enough. He is the ONLY doctor of my group that I have total trust in. I feel he always has my best interest foremost. My biggest fear when diagnosed was having a BMB. I have to admit it still scares the heck out of me. I do not feel I ever have to worry about needless tests while in his care. Be lead by your instincts .. get to him on the first available date.

Dana Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Does anyone have any information about the effects of CT scans on the spread of

lung cancer? My mom is going through testing to see if the spot on her lung is

cancerous. She has already had a CT, CTA and Pet scan, and a bronchoscopy. The

CT, CTA and Pet scans, though inconclusive, seem to suggest lung cancer however

at the time she had the tests she was recovering from a chest infection which

the doctors thought could be causing the spot. The bronchoscopy wash/brush

turned up nothing and now we are looking at having another CT scan to see if the

spot grew or shrunk. If it shrunk, we will be in a wait and see but if it grew

then a needle biopsy will be done. Any advice?

Thanks,

le

[Guest guest]

Yes. Radiation is cumulative. Most physicians have no idea

how much radiation is involved in a CT scan, even

radiologists! Seriously! For example, my very knowledgeable

CLL doc guessed that an abdominal CT scan was the equivalent

of flying from LA to New York (where do otherwise very

bright people get this misinformation?)

I worked it out and found that it was actually the

equivalent of 666 flights from LA to NYC, all in a few

seconds.

An abdominal CT scan is the equivalent of 400 chest X-rays.

Some docs pass out CT scans like candy.

I insist on ultrasound or MRIs.

I did ask one drug company why they used CT scans rather

than MRIs, and the president of the company told me it was

because it was cheaper.

Yes, cheaper for the company, potentially fatal for the

patient.

chsngrnbos wrote:

/message/16237