Clarification

[Guest guest]

Hi all - I didn't mention this in my first email - I do not do phone consults or

prescribing

over the phone. I live in southwest Kansas and if you can drive to see me as a

patient, then

I will treat you. Kansas medical licensing requires in person history and

physical exams

and I prefer to comply with that rather than risk my license. I also am not

comfortable

offering treatment through emails here to people I do not have as regular

patients.

Bob Sager MD

[Guest guest]

I understand your concerns; practicing medicine is becoming a risky

business.

Do you feel comfortable sharing your knowledge regarding the OTC supplements

and their actions?

----- Original Message -----

From: " swmcsager " <drbob@...>

<low dose naltrexone >

Sent: Monday, May 31, 2004 9:06 AM

Subject: [low dose naltrexone] Clarification

> Hi all - I didn't mention this in my first email - I do not do phone

consults or prescribing

> over the phone. I live in southwest Kansas and if you can drive to see me

as a patient, then

> I will treat you. Kansas medical licensing requires in person history and

physical exams

> and I prefer to comply with that rather than risk my license. I also am

not comfortable

> offering treatment through emails here to people I do not have as regular

patients.

>

> Bob Sager MD

>

>

>

>

>

>

[Guest guest]

Hi, Matt. I'll do my best with the ones I think I know, although I

invite anyone to correct anything I get wrong.

I think that a " 3 log reduction " means a thousand-fold decrease in

detectable Ph chromosomes. (I assume that 1 log means a ten-fold

decrease and 2 log means 100-fold?) Again, if I've misstated this,

please someone jump in and set the record straight. I ain't no

Anjana.

PCRU means " PCR undetectable " -- essentially a zero reading from a

PCR test. I think PCR is the most sensitive of the tests and looks

at something like 100,000 cells, whereas a FISH test only looks at

something like 200 cells.

I don't know the answer to your 3 chromosome question.

I've heard about lower-than-400 doses and Gleevec holidays for

various reasons (e.g., side effects). I thought, though, that the

experts generally don't recommend less than 400 mg., so I don't know

if reduction below 400 is used as a long-term strategy in response

to something or if it's a temporary stop-gap measure.

I hope this is helpful.

Warm regards.

(Dov)

>

> I just joined this post a few weeks ago and am oustanded about how

> little I know about some of the topics you throw around. Can

someone

> help me with some terminology? Here are a few of the items I am

> confused about:

>

> Log Reductions

> PCRU

> 3 Chromosomes (is this the same as clonal mutations)

>

> I am also amazed that some people are taking less than 400 mg or

> alternating doses on different days. This is all new stuff and

new

> things I can bring up to my oncolgist when I go.

>

> Thanks for the help.

>

> Matt

> DX January of 2005

> Gleevec since March of 2005

> PCR at last test 0.05

> ville, Florida

>

[Guest guest]

> A couple of the side effects I have seem to be rarely

> discussed like nose bleeds and bloody diarrhea,>

Hi Matt,

Have you tried a lubricating nasal spray for the nose bleeds (there

are lots of different brands that you can get OTC) and have you tried

Imodium for the diarrhea? I find both have helped me in the past.

Keep in mind that with any drug you take, there will be side effects.

I think the key is in trying to manage the side effects in the best

way you can which may mean experimenting a bit with various remedies.

Take care,

Tracey

dx Jan 2002

[Guest guest]

Rick:

Thanks for the wonderful advice. I waiver between being a non-complainer

and " just grin and take it " kind of guy, but you are right. QOL is no small

matter. In fact, my 81 year old father called me this morning on my way to

work to talk about this same thing.

Thanks for the support.

Matt

In a message dated 11/1/2006 5:06:20 P.M. Eastern Standard Time,

utfin93@... writes:

Matt,

If your doctor will not help you manage your side effects I suggest you fire

him, or at least get a consult from a doctor that is experienced in managing

CML. We are expected to be on these medications for many years and quality

of life is no small concern. (A dose holiday should be a last resort.) I don't

know too much about the bleeding issues but I have had diarrhea/lower GI

discomfort as a side effect and know it can really get to you after a while. I

tried Immodium but that didn't really do enough for me. Recently I switched to

Lomotil and that seems to be much more effective for me at least.

Occasionally I take a stronger pain med if I am experiencing too much

discomfort. Also

might consider adiuretic if you are having any issues with edema. Bottom line

though is you deserve answers and consideration from your Dr not a blow-off.

Have you been to www.newcmldrug.Have you been to www.newcmldrug.<WBR>com ?

The folks in t

Good luck

Rick

[Guest guest]

Matt,

When I first started frequenting these boards, I'd already been a

CML patient for a while. I avoided the boards for a long time,

making believe I wasn't sick and telling myself that the boards were

for people who fetishized their illness. So, I was (and continue to

be) incredibly ignorant about a lot of things that people discuss.

Just hang out for a while and you'll start absorbing a lot of the

collective knowledge around here.

Whatever you decide to do, I hope you can manage the side effects.

I know it's very hard. For my own purposes, I'll be interested to

know if you go the Sprycel route and how that goes.

Warmest regards.

(Dov)

>

> :

>

> Yes, that was very helpful. I just need to understand the terms

used so I

> can follow some of the posts. Probably like most of us, I detest

going to the

> oncologist and getting blood drawn. So I go every other month

for tests and

> see him once every three months. My parents and my wife are

adamant that I

> either change medications or somehow get a handle on my side

effects.

>

> After taking my Gleevec Holiday in March, I am back having the

same side

> effects I was last year so I am looking at discussing options with

him at my

> next visit. I am trying to understand what those options are,

what other people

> are doing, and which side effects are medication and which are

CML, if that

> makes sense to you. A couple of the side effects I have seem to

be rarely

> discussed like nose bleeds and bloody diarrhea, which may be

simply because

> they are unpleasant to discuss. Both are side effects that MD

and

> Novartis report as potential side effects, but my oncologist

dismisses them as

> dry nose and hemorrhoids (I can assure you he is wrong in both

cases). So in

> any case, I am trying to get some information that I can use to

discuss with

> him, so the more I understand the more options I have. Possibly

another

> Gleevec Holiday or possibly a switch to another medication, which

could include

> Sprycel.

>

> Knowledge is power, isn't that what Sir Francis Bacon said?

>

> Thanks again for the help.

>

>

> With warm regards,

> Matt Maynor

> ville, FL

> DX January of 2005

> Gleevec Since May 2005

> mtmaynor@...

>

>

>

>

>

>

[Guest guest]

Hey Matt:

I have had the bloody stools and diarrhea and nose bleeds also taking Gleevec.

I ended up having a colonoscopy done this year which came out clean. ( ha, ha,

a pun!) Yeah they are gleevec side effects. Please feel greatful the Gleevec

is working for you. I have been on Gleevec since April 05 and am now my counts

are heading north and it appears that I am becoming Gleevec resistant. In two

weeks I will be back talking to the transplant doctor about my limited options.

Looks like sprycel or a mini transplant. I'll try the sprycel and pray it

works. I have two children at home and I have to work full time to support

them. I am a single parent. My back is really against the wall with this. Be

greatful the Gleevec works, side effects and all. When it stops working you

will find out how limited you really are. Good luck and God Bless.

Therese Stone

mtmaynor@... wrote:

:

Yes, that was very helpful. I just need to understand the terms used so I

can follow some of the posts. Probably like most of us, I detest going to the

oncologist and getting blood drawn. So I go every other month for tests and

see him once every three months. My parents and my wife are adamant that I

either change medications or somehow get a handle on my side effects.

After taking my Gleevec Holiday in March, I am back having the same side

effects I was last year so I am looking at discussing options with him at my

next visit. I am trying to understand what those options are, what other people

are doing, and which side effects are medication and which are CML, if that

makes sense to you. A couple of the side effects I have seem to be rarely

discussed like nose bleeds and bloody diarrhea, which may be simply because

they are unpleasant to discuss. Both are side effects that MD and

Novartis report as potential side effects, but my oncologist dismisses them as

dry nose and hemorrhoids (I can assure you he is wrong in both cases). So in

any case, I am trying to get some information that I can use to discuss with

him, so the more I understand the more options I have. Possibly another

Gleevec Holiday or possibly a switch to another medication, which could include

Sprycel.

Knowledge is power, isn't that what Sir Francis Bacon said?

Thanks again for the help.

With warm regards,

Matt Maynor

ville, FL

DX January of 2005

Gleevec Since May 2005

mtmaynor@...

[Guest guest]

Matt,

I could tell you were a guy who was comfortable with his

masculinity. After all, how many dads are confident enough to enjoy

pedicures with their little girls? From your description of

yourself, though, I now realize that no one would dare look sideways

at you. : ) (As a father of two daughters, I thought it was

sweet. You're obviously a good dad.)

Warmest regards.

(Dov)

>

> Theresa:

>

> Thanks, sometimes my onc. makes me think I am losing my mind or am

being a

> wimp (I am a big strong guy at 6'4 " so wimp does not sit well with

me). Nice

> to know someone else has the same side effects and I am not crazy.

>

> I too am the lone wage earner in my family and my salary was cut

about 3

> months after I was diagnosed and I have not found a job that will

replace my

> benefits that I would lose, so there I stay. You will be in my

prayers, which

> makes three prayers a night as I pray with each of my kids.

>

> Thanks again.

>

> Matt

> ville, FL

> DX January of 2005

> Gleevec since March 2005

> Last PCR 0.05

>

>

>

>

>

>

[Guest guest]

Tracey:

Thank you so much. In fact, I have tried lubricating drops. It is not like

my nose bleeds all the time, just on occasion I will be sitting at dinner or

brushing my teeth and will blow my nose and out will come all this blood.

No cuts, bruises, sores or lesions. After about 5 minutes the blood will stop

and I will get very week for several hours and it will be over. Same with

the diarrhea. No warning, no inflammation or hemorrhoids, but a mass amount

of blood once or twice, and then it is over. It only happens once a month or

so, but usually it is enough blood to freak out whoever I am with, whether

they be family or business meetings. Since I am not very forward about having

CML, I usually make up an excuse. They usually happen at the same time.

Oh well, I will continue to experiment. Thanks for your words of wisdom.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

_mtmaynor@..._ (mailto:mtmaynor@...)

In a message dated 11/1/2006 3:17:46 P.M. Eastern Standard Time,

traceyincanada@... writes:

Hi Matt,

Have you tried a lubricating nasal spray for the nose bleeds (there

are lots of different brands that you can get OTC) and have you tried

Imodium for the diarrhea? I find both have helped me in the past.

Keep in mind that with any drug you take, there will be side effects.

I think the key is in trying to manage the side effects in the best

way you can which may mean experimenting a bit with various remedies.

Take care,

Tracey

dx Jan 2002

[Guest guest]

:

Yes, I try to be a good Dad but always wonder if I am doing a good job.

Yes, a big guy like me in the pedicure shop was an unusual site, but I really

did not care as my daughter and I sat there holding hands. In fact, on the

Light the Night walk, she held my hand the whole way. She is so much wiser

than

my other kids and all at 7 years old.

However, just to make sure that I was not perceived in a feminine way, I

wore my " Beer is Life " shirt, my " Fish or get out of my Way " cap and my

camouflage hunting vest. If only I could install a gun rack in my Lexus and

maybe

tie my dog to the fender.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/1/2006 9:55:34 P.M. Eastern Standard Time,

deh12@... writes:

Matt,

I could tell you were a guy who was comfortable with his

masculinity. After all, how many dads are confident enough to enjoy

pedicures with their little girls? From your description of

yourself, though, I now realize that no one would dare look sideways

at you. : ) (As a father of two daughters, I thought it was

sweet. You're obviously a good dad.)

Warmest regards.

(Dov)

[Guest guest]

Therese:

I had never heard of fractures in the feet. I hope that you are able to

still be mobile. But the point that we all know but never say is that some of

our symptoms may be Gleevec and some may not. Over time, we each learn our

bodies and can tell which is which. I hope that you are not in too much pain

with your feet and yes, maybe Sprycel would be better for many of us, although

my PA in Texas says it has just as many side effects. However, when I look

at the percentage comparison on the RX sheet, it appears to me to have much

less percentage of patients having side effects and the journal on Jerry's

website shows that he virtually had no side effects and he was patient #2.

I hope things go better for you.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/2/2006 10:21:02 A.M. Eastern Standard Time,

kidme2003@... writes:

Hey Matt:

The Onc I have will sent me to all these other doctors with bleeding and all

the side effects telling me I should see a specialist for the problems. I

have seen a heart doctor, a stomach doctor, my reg practicioner all for

problems I know are from side effects from the Gleevec. Maybe becoming

resistant is

the best thing that could happen. I will get to try the other drug, it might

get along better with my body, who knows. The latest thing I deal with is

fractures in my feet. I think Gleevec has played a part in that also. I was

told

by my Onc's nurse " perhaps I was just getting old " .

Wow, what a revalation on her part! No I did not reach out and smack her! I

am sorry for your struggles with this. Life is hard enough without obstacles

like CML to climb.

Stay in touch and hang in there!

Therese

[Guest guest]

Great advice , I will give it a try.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/2/2006 12:01:41 A.M. Eastern Standard Time,

rbhuffman@... writes:

HI, Matt. My ONC asked me to try (Ayr)Saline Nasal Gel (OTC(over the

counter))for my Swollen dry nasal passages instead of saline spray

and it solved my problems in less than two weeks. As for not

getting response to your report of symptoms,this is what I did to

check for myself and my ONC. Go to

_http://www.rxlist.http://www.rxlishttp://wwhttp:/_

(http://www.rxlist.com/cgi/generic3/gleevec_ad.htm) and print the

list. Review the ones that are affecting you right now and then

show the list with your ONC and ask his advice. If he doesn't

address your direct concern it is time to seek someone who will.

Good luck,

H.

dxd 2/30

Gleevec 400mg 3/03

PCRU 6/03

Q-PCR 11/04 .0013 and holding

[Guest guest]

LOL

>

>

>

> :

>

> Yes, I try to be a good Dad but always wonder if I am doing a

good job.

> Yes, a big guy like me in the pedicure shop was an unusual site,

but I really

> did not care as my daughter and I sat there holding hands. In

fact, on the

> Light the Night walk, she held my hand the whole way. She is so

much wiser than

> my other kids and all at 7 years old.

>

> However, just to make sure that I was not perceived in a feminine

way, I

> wore my " Beer is Life " shirt, my " Fish or get out of my Way " cap

and my

> camouflage hunting vest. If only I could install a gun rack in my

Lexus and maybe

> tie my dog to the fender.

>

>

>

> With warm regards,

> Matt

> ville, FL

> DX January of 2005

> Gleevec Since May 2005

> Father of 3

> mtmaynor@...

>

>

> In a message dated 11/1/2006 9:55:34 P.M. Eastern Standard Time,

> deh12@... writes:

>

>

>

>

> Matt,

>

> I could tell you were a guy who was comfortable with his

> masculinity. After all, how many dads are confident enough to

enjoy

> pedicures with their little girls? From your description of

> yourself, though, I now realize that no one would dare look

sideways

> at you. : ) (As a father of two daughters, I thought it was

> sweet. You're obviously a good dad.)

>

> Warmest regards.

>

> (Dov)

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I haven't seen anything about the use of supplements as a way of reducing some

of the symptoms. I've taken a number of food supplements over the years and

wonder what experience others have.

Thanks,

Margaret

mtmaynor@... wrote:

Great advice , I will give it a try.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/2/2006 12:01:41 A.M. Eastern Standard Time,

rbhuffman@... writes:

HI, Matt. My ONC asked me to try (Ayr)Saline Nasal Gel (OTC(over the

counter))for my Swollen dry nasal passages instead of saline spray

and it solved my problems in less than two weeks. As for not

getting response to your report of symptoms,this is what I did to

check for myself and my ONC. Go to

_http://www.rxlist.http://www.rxlishttp://wwhttp:/_

(http://www.rxlist.com/cgi/generic3/gleevec_ad.htm) and print the

list. Review the ones that are affecting you right now and then

show the list with your ONC and ask his advice. If he doesn't

address your direct concern it is time to seek someone who will.

Good luck,

H.

dxd 2/30

Gleevec 400mg 3/03

PCRU 6/03

Q-PCR 11/04 .0013 and holding