Re: Freaking out

[Guest guest]

At 01:15 PM 4/22/05 -0700, you wrote:

>Hi Group,

>

>I just got my latest PCR from MDACC and I have increased from .04 to .3, and

>quite honestly I am freaking out about this. I started increasing in

>December 2003 and stabilized in the last year only to jump up again. Two

>years ago I was at .0022. I am taking 400 mg Gleevec and I am wondering

>whether an increased dose would help. Any ideas?

>

>

>Dx 3-25-01

Hi ,

I would certainly ask your onc about an increase....not sure who is your

primary now....maybe Talpaz. Sometimes he seems a bit conservative to me in

some of the advise he has given others (maybe not???)......so you have

several opinions you could get. I would e-mail Dr. Druker for his

opinion.....but this is more than the 3-fold increase, and I would think

you either increase your dose now, or do another pcr in a month or so and

see if there was an error.

I will tell you another thing Dr. D would say to you.... " this is not panic

time " ......but I know that it is hard to not worry about this.

love,

Maui Nanc

[Guest guest]

hallo kristine

first i want to wish you happy holiday , i will be thinking about you at the

" seider " reading tonight

personally at your situation i would go for an increase at gleevec dosage unless

there is a reason not to do it that we dont know.

i feel there is no reason to panic but it is always good to be alert and

cautious.

wishing you all the best

giora

[ ] Freaking out

Hi Group,

I just got my latest PCR from MDACC and I have increased from .04 to .3, and

quite honestly I am freaking out about this. I started increasing in

December 2003 and stabilized in the last year only to jump up again. Two

years ago I was at .0022. I am taking 400 mg Gleevec and I am wondering

whether an increased dose would help. Any ideas?

Dx 3-25-01

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

[Guest guest]

Hello ,

Sorry about your increase, but I have heard through the grapevine

that MDACC like other places have had the odd troubles with their

PCR testing. So, I would be inclined to be re-tested and speak to

your doctor there. However, that being said since this is a trend

that started in 2003 I tend to agree with Giora and honestly, if it

were me I would probably consider an increase to 600 mg.

Enjoy your passover holidays,

Warmly,

Cheryl-Anne

--- In , " Lieberman " <kisocean@e...>

wrote:

>

> Hi Group,

>

> I just got my latest PCR from MDACC and I have increased from .04

to .3, and

> quite honestly I am freaking out about this. I started increasing

in

> December 2003 and stabilized in the last year only to jump up

again. Two

> years ago I was at .0022. I am taking 400 mg Gleevec and I am

wondering

> whether an increased dose would help. Any ideas?

>

>

> Dx 3-25-01

[Guest guest]

Hi ,

Sorry to hear about the increase in your counts. But, with our increased

options, I think is right about being more optimistic. You've had a

rough go -- including with your husband's health status -- asnd the years before

CML when you suffered through other serious health issues.

Increasing your dosage seems like a prudent idea to me, too. It took me forever

to get to CCR (19 months, I think) and my qPCR is still 2.0something or other.

But it's always been that high. I didn't get to CCR until my dosage was doubled

from 400 mg to 800. So, it makes sense to me that 600 mg may give you a good

bounce back to where you want to be.

Thinking of you and hoping you're preparing or attending a beautiful seder with

your family and friends.

Love,

L

[ ] Freaking out

Hi Group,

I just got my latest PCR from MDACC and I have increased from .04 to .3, and

quite honestly I am freaking out about this. I started increasing in

December 2003 and stabilized in the last year only to jump up again. Two

years ago I was at .0022. I am taking 400 mg Gleevec and I am wondering

whether an increased dose would help. Any ideas?

Dx 3-25-01

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

[Guest guest]

Sorry you aren't getting a lot of support. Try not to get discouraged.

You know how you are feeling, so don't let others cause you to doubt

yourself.

It's common for people with rheumatic diseases to go for long periods of

time with the wrong diagnosis or no consensus on the diagnosis.

I would suggest keeping a diary and make note of health changes when they

occur. It may help you and your physicians figure things out.

Venting is good. Come here any time to do that.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Freaking Out

>

>

>

> I have been really ill for a couple of years now. I have +ra factor.

> I can't seem to get any answers from the doctors. After all this

> time, I have at least come to some minor terms with the fact that I

> am ill. My family thinks that I'm " hysterical " and is constantly mad

> at me because of episodes where I am ill again and am unable to be at

> important events that I would go through any lengths to be at. My

> boyfriend doesn't get it. I am disabled for other reasons and am on

> medicaid. Just a little tidbit! I got to where it was so bad that I

> prepared myself that I was most likely dying. I did notice that

> while

> on birth control injections that I had a pattern of episodes that

> were

> more severe and realized that I do have something that features

> relapse and remission. The frequency seemed to taper down a bit since

> stopping injections and I decided to try to have some sort of life

> and

> am trying to change my attitude or outlook. I have no positive

> support

> and just wanted to vent, I guess. Have really been searching for

> information and wondered if any of you had to wait years before

> finding out anything? I left out specifics because I cant't type

> that

> long. It is an ordeal.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear ,

I'm really sorry you are having to deal with this. I know it's easier

said than done--but please don't panic. I think the first step would be

to get on a higher dose of Gleevec as there are a number of mutations

that do respond to higher doses. I would also arrange to get mutations

testing to see what you are dealing with--that should help you make a

decision on what direction to take. Just remember that there are

options available now and you're still in good shape. It might help

to remind yourself of some of the others who have been in worse places

disease-wise than you but are now doing very well. Dane was very

anxious last year and look how well he is doing now. Bobby just posted

on another list that she had found some old labs from early 2000--she

was at 12% blasts and high basophils when she entered the Gleevec

trial. She's had a long journey through many drug trials and is doing

great and feeling great on BMS. I know it's tough to deal with the

changes and the anxiety this causes--but you will get thru this and I'll

bet you are going to be just fine. Please let us know what's happening

with you.

Love,

Dorothy

Lieberman wrote:

>

> Hi Group,

>

> I just got my latest PCR from MDACC and I have increased from .04 to

> .3, and

> quite honestly I am freaking out about this. I started increasing in

> December 2003 and stabilized in the last year only to jump up again. Two

> years ago I was at .0022. I am taking 400 mg Gleevec and I am wondering

> whether an increased dose would help. Any ideas?

>

>

> Dx 3-25-01

>

>

>

[Guest guest]

Hi ,

My PCR scores improved a lot after I increased

from 600 to 800 mg. Just taking a few extra pills a

day may do the trick.

ho

[Guest guest]

Dear -

So sorry to hear about the increase. I hope it is a fluke and will go

right back down. Many doctors say that PCRs bounce around like the

stock market, and that short-term fluctuations should not cause panic.

Easier said that done, I know. The good thing about being on 400mg is

that we have the option to increase as a potential simple fix. Hang

in there.

~ in MI

[Guest guest]

Thanks, and I don't plan to!!! At least not the inside ever again. Really

nice guy, former vet who needs the $ and did a very nice job but the

water REALLY got me upset. I never even mentioned not to use water only told

him not to use any sprays or fragrances. Did think he'd be steam cleaning!!!!

All seems well now. We ran the fans all night and had the doors open all

day along with the sun along with a nice breeze. Everything is completely

dry and no smell at all. I always get so frantic, drive everyone nuts and

then all is well. I just don't like water. I get nervous just doing the wash

and taking a shower. Never had problems in my home my exposure was all at

the toxic dump they call a school!!!! Water leaks for over 8 years and all

they ever did was put the kitchen trash cans out to catch the water. I have

learned a big lesson and will never have anyone touch the inside of my car

again, EVER!

My suggestion is, don't use that guy , again.

B.

[Guest guest]

Sue, sometimes I use tea tree oil in water since it's an anti-fungal. Water

isn't necessarily the enemy - continued dampness is the problem. I'm finding

that the better I detox, the fewer " allergens " that I react to... liver

stagnation or liver " congestion " may be something to look into further.

Good luck! Sounds like it turned out okay!

Jeri

On Sun, Apr 11, 2010 at 8:04 PM, <ssr3351@...> wrote:

>

>

>

> Thanks, and I don't plan to!!! At least not the inside ever again. Really

> nice guy, former vet who needs the $ and did a very nice job but the

> water REALLY got me upset. I never even mentioned not to use water only

> told

> him not to use any sprays or fragrances. Did think he'd be steam

> cleaning!!!!

> All seems well now. We ran the fans all night and had the doors open all

> day along with the sun along with a nice breeze. Everything is completely

> dry and no smell at all. I always get so frantic, drive everyone nuts and

> then all is well. I just don't like water. I get nervous just doing the

> wash

> and taking a shower. Never had problems in my home my exposure was all at

> the toxic dump they call a school!!!! Water leaks for over 8 years and all

> they ever did was put the kitchen trash cans out to catch the water. I have

>

> learned a big lesson and will never have anyone touch the inside of my car

> again, EVER!

>

>

> My suggestion is, don't use that guy , again.

>

> B.

>

>

[Guest guest]

Do you spritz it on your car seats ??  Sometimes I spritz with antifungals my

living area, space, stuff and make sure it dries. 

 

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Jeri Zerr <jerizerr@...>

Sent: Mon, April 12, 2010 12:00:11 AM

Subject: Re: [] freaking out

 

Sue, sometimes I use tea tree oil in water since it's an anti-fungal. Water

isn't necessarily the enemy - continued dampness is the problem. I'm finding

that the better I detox, the fewer " allergens " that I react to... liver

stagnation or liver " congestion " may be something to look into further.

Good luck! Sounds like it turned out okay!

Jeri

[Guest guest]

What type of antifungal spray do you use? I've never heard of it before!!!

Do you spritz it on your car seats ?? Sometimes I spritz with antifungals

my living area, space, stuff and make sure it dries.

[Guest guest]

If I can leave I will spritz with water and Tea Tree Oil.  (strong odor ) (only

certain brand)   if not I use GSE in water.  I clean with borax, vinager,

 

http://www.teatreeplace.com/

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " ssr3351@... " <ssr3351@...>

Sent: Mon, April 12, 2010 9:13:45 PM

Subject: Re: [] freaking out

 

What type of antifungal spray do you use? I've never heard of it before!!!

Do you spritz it on your car seats ?? Sometimes I spritz with antifungals

my living area, space, stuff and make sure it dries.

[Guest guest]

Sorry forgot the GSE.............

http://www.pureliquidgold.com/

 

 

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " ssr3351@... " <ssr3351@...>

Sent: Mon, April 12, 2010 9:13:45 PM

Subject: Re: [] freaking out

 

What type of antifungal spray do you use? I've never heard of it before!!!

Do you spritz it on your car seats ?? Sometimes I spritz with antifungals

my living area, space, stuff and make sure it dries.

[Guest guest]

I never have, interesting idea though...

Have you ever used Thieves Oil ?

On Mon, Apr 12, 2010 at 12:42 PM, dragonflymcs <dragonflymcs@...>wrote:

>

>

> Do you spritz it on your car seats ?? Sometimes I spritz with antifungals

> my living area, space, stuff and make sure it dries.

>

>

> God Bless !!

> dragonflymcs

> Mayleen

>

> ________________________________

>

> From: Jeri Zerr <jerizerr@... <jerizerr%40gmail.com>>

> <%40>

> Sent: Mon, April 12, 2010 12:00:11 AM

> Subject: Re: [] freaking out

>

>

>

> Sue, sometimes I use tea tree oil in water since it's an anti-fungal. Water

> isn't necessarily the enemy - continued dampness is the problem. I'm

> finding

> that the better I detox, the fewer " allergens " that I react to... liver

> stagnation or liver " congestion " may be something to look into further.

>

> Good luck! Sounds like it turned out okay!

>

> Jeri

>

>

>

[Guest guest]

No because it has alot of VOC from the EO's I coukd not tolerate.  I use the

TT oil sparingly.  And I leave !!!

 

 

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Jeri Zerr <jerizerr@...>

Sent: Mon, April 12, 2010 11:00:48 PM

Subject: Re: [] freaking out

 

I never have, interesting idea though...

Have you ever used Thieves Oil ?

>

[Guest guest]

I've heard about the raisins but was told to use the white raisins. I

wonder if it matters?

I no longer take any pain killers for *anything*. Another friend explained

to me to soak raisins in gin. When in pain for whatever reason I only take

1 - 3 raisins (obviously not at work nor before work nor before driving

LOL). I have a small canning jar in my cabinet with these raisins soaked in

gin. When it runs low I simply add a few more raisins. Gin is made from

juniper berries - which have been scientifically proven to help reduce

pain.

The raisins absorb these qualities. Previously I've seen info on this

around the net - check around, you should be able to find something.

[Guest guest]

Interesting! I hadn't seen GSE before - we take it as a supplement

(reservatol) but hadn't seen it as a spray. Interesting, I'll look more into

GSE.

I also clean with vinegar and borax - and other homemade recipes. A friend

showed me to make a window and multi-surface cleaner using 5 parts water, 5

parts vinegar and 2 parts vodka. Works great! NO chemicals. I often add a

couple drops vanilla extract (I soak vanilla beans in vodka for 2 months

then use the extract without taking out the vanilla beans. This can be

topped off for 2 to 3 years... store in a dark cabinet!) as a great natural

scent.

I no longer take any pain killers for *anything*. Another friend explained

to me to soak raisins in gin. When in pain for whatever reason I only take

1 - 3 raisins (obviously not at work nor before work nor before driving

LOL). I have a small canning jar in my cabinet with these raisins soaked in

gin. When it runs low I simply add a few more raisins. Gin is made from

juniper berries - which have been scientifically proven to help reduce pain.

The raisins absorb these qualities. Previously I've seen info on this

around the net - check around, you should be able to find something.

Anyone with allergies and such needs to check to see what other ingredients

are in gin - I have a friend who can't have *any* particular grains which

naturally includes most alcohols as well.

YMMV, these are my experiences.

Jeri

(I'm very content - since I began using ph test strips and realized I was

very acidic I've been alkalyzing. I've also been taking a thyroid herb

blend since my basal temp was always in the low 97s (TSH tests normal always

for me). Now I've been taking an herbal detox (drinking lots of water!)

Something sure seems to have " balanced " - I've dropped 15 pounds in a few

weeks without *trying* to shed weight... My husband mentioned I looked great

last night... WOOHOO!!! LOL)

[Guest guest]

  Thanks for that info Geri, good to know of this.  I make the spray.  You

buy the GSE in concentarte drops.  I get a spray bottle add water and the

drops. The GSE bottle has a page on the inside of label for uses and

dilutions.  Also the website I sent to you.

 

 I use vinager as well for windows.  Thanks again !!

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Jeri Zerr <jerizerr@...>

Sent: Tue, April 13, 2010 10:31:06 AM

Subject: Re: [] freaking out

 

Interesting! I hadn't seen GSE before - we take it as a supplement

(reservatol) but hadn't seen it as a spray. Interesting, I'll look more into

GSE.

I also clean with vinegar and borax - and other homemade recipes. A friend

showed me to make a window and multi-surface cleaner using 5 parts water, 5

parts vinegar and 2 parts vodka. Works great! NO chemicals. I often add a

couple drops vanilla extract (I soak vanilla beans in vodka for 2 months

then use the extract without taking out the vanilla beans. This can be

topped off for 2 to 3 years... store in a dark cabinet!) as a great natural

scent.

I no longer take any pain killers for *anything*. Another friend explained

to me to soak raisins in gin. When in pain for whatever reason I only take

1 - 3 raisins (obviously not at work nor before work nor before driving

LOL). I have a small canning jar in my cabinet with these raisins soaked in

gin. When it runs low I simply add a few more raisins. Gin is made from

juniper berries - which have been scientifically proven to help reduce pain.

The raisins absorb these qualities. Previously I've seen info on this

around the net - check around, you should be able to find something.

Anyone with allergies and such needs to check to see what other ingredients

are in gin - I have a friend who can't have *any* particular grains which

naturally includes most alcohols as well.

YMMV, these are my experiences.

Jeri

(I'm very content - since I began using ph test strips and realized I was

very acidic I've been alkalyzing. I've also been taking a thyroid herb

blend since my basal temp was always in the low 97s (TSH tests normal always

for me). Now I've been taking an herbal detox (drinking lots of water!)

Something sure seems to have " balanced " - I've dropped 15 pounds in a few

weeks without *trying* to shed weight... My husband mentioned I looked great

last night... WOOHOO!!! LOL)

[Guest guest]

I think I missed something. What is GSE and what do you use it for?

Thank you!

Sue

Thanks for that info Geri, good to know of this. I make the spray. You

buy the GSE in concentarte drops. I get a spray bottle add water and the

drops. The GSE bottle has a page on the inside of label for uses and

dilutions. Also the website I sent to you.

[Guest guest]

I am sorry...........I 've been anserwing in a hurry lately.  GSE is

grapefruitseed extract.  I use Nutribiotic Brand.  (NOT AFFILIATED in any

way) 

http://www.pureliquidgold.com/

1. Broad Spectrum

Grapefruit seed extracts main advantage is it's extraordinary ability to perform

both (internally and externally) against a wide variety of known or unknown

infections caused by viruses, bacteria, funguses and parasites. 

http://www.pureliquidgold.com/benefits-of-grapefruit-seed-extract.htm

 

Hope this helps

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " ssr3351@... " <ssr3351@...>

Sent: Tue, April 13, 2010 6:20:00 PM

Subject: Re: [] freaking out

 

I think I missed something. What is GSE and what do you use it for?

Thank you!

Sue

Thanks for that info Geri, good to know of this. I make the spray. You

buy the GSE in concentarte drops. I get a spray bottle add water and the

drops. The GSE bottle has a page on the inside of label for uses and

dilutions. Also the website I sent to you.

[Guest guest]

Good call dragonfly, I use the same stuff. I soak my toothbrush and so many

other things. It is great. I have also learned much about and began to take

hemp seeds which you can get online as well. I will report on the helpfullness

in the future. They are a better source of fatty oils to replace omega 3. Also

supose to be great as a cholesteral medacine and many other benafits. 

http://www.ratical.org/renewables/hempseed1.html

 

 Its worth checking out.   

Â________________________________

From: dragonflymcs <dragonflymcs@...>

Sent: Tue, April 13, 2010 9:17:24 PM

Subject: Re: [] freaking out

 

I am sorry....... ....I 've been anserwing in a hurry lately.  GSE is

grapefruitseed extract.  I use Nutribiotic Brand.  (NOT AFFILIATED in any

way) 

http://www.pureliquidgold.com/

[Guest guest]

Thanks, I have a good health food type store in the area that may have it.

I am sorry.......I am 've been anserwing in a hurry lately. GSE is

grapefruitseed extract. I use Nutribiotic Brand. (NOT AFFILIATED in any way)

[Guest guest]

I just stopped at the health food store nearby. They only had the tablets

but no liquid. I have another place to look. How much liquid do you add to

water for the spray. What do you take the tablets for and do they really

work well?

Sue R.

My Pleasure, The liquid concentrate I use for the spray, they also sell

the tablets which you can take yourself. They are equal to 15 drops of the

concentrate.

[Guest guest]

My Pleasure,  The liquid concentrate I use for the spray, they also sell the

tablets which you can take yourself. They are equal to 15 drops of the

concentrate. 

 

  

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " ssr3351@... " <ssr3351@...>

Sent: Wed, April 14, 2010 11:20:00 AM

Subject: Re: [] freaking out

 

Thanks, I have a good health food type store in the area that may have it.

I am sorry....... I am 've been anserwing in a hurry lately. GSE is

grapefruitseed extract. I use Nutribiotic Brand. (NOT AFFILIATED in any way)