help!

April 11, 2004

hi! im new in this group. im a 27 year old female, asian. i think i

have gallstones because of the symptomps i experience which is very

annoying. can someone please tell me the simplest way to get rid of

these stones without surgery. thanks a lot!

February 19, 2006

Hi All,

I am having another BMB sometime this week probably and am really anxious

because it hurts so much. However, I don't want to be given sedation

intraveneously either because I hate needles :-(

Does anyone know of something that I can take beforehand in tablet form that I

can ask the doctor about? Any suggestions otherwise?

Jackie

February 19, 2006

Hi Jackie ( & all),

You might want to ask your doctor about the " fentanyl lollipop " . It's

an opium lollipop that really takes the 'edge' off of getting a BMB! My

first 3 BMB's were with sedation (it took longer to prep me than do the

actual BMB), my last two with the lollipop.

To your good marrow,

Gale Bacon

dx'd 3/00, interferon/hydrea for 14 mos.

Gleevec 400mgs daily

molecular remission 4.5 years and counting!

Zavie's zero club #212? (Zavie, I can't remember my #).

February 19, 2006

Thank you Gale, yes I will ask about this.

Re: [ ] help!

Hi Jackie ( & all),

You might want to ask your doctor about the " fentanyl lollipop " . It's

an opium lollipop that really takes the 'edge' off of getting a BMB! My

first 3 BMB's were with sedation (it took longer to prep me than do the

actual BMB), my last two with the lollipop.

To your good marrow,

Gale Bacon

dx'd 3/00, interferon/hydrea for 14 mos.

Gleevec 400mgs daily

molecular remission 4.5 years and counting!

Zavie's zero club #212? (Zavie, I can't remember my #).

February 19, 2006

Hi Gale,

You are # 112. I reached # 102 on September 10, 2001 and you got # 112

on September 17, 2001.

Zavie

Re: [ ] help!

Hi Jackie ( & all),

You might want to ask your doctor about the " fentanyl lollipop " . It's

an opium lollipop that really takes the 'edge' off of getting a BMB! My

first 3 BMB's were with sedation (it took longer to prep me than do the

actual BMB), my last two with the lollipop.

To your good marrow,

Gale Bacon

dx'd 3/00, interferon/hydrea for 14 mos.

Gleevec 400mgs daily

molecular remission 4.5 years and counting!

Zavie's zero club #212? (Zavie, I can't remember my #).

June 5, 2006

I would have to concur with others on this board whose advice has been put

quite simply: Get away from the source cause of the symptoms of illness, or

anticipate the symptoms will become increasingly worse. It's as simple as

that. All else and all other obstacles are tangential.

I know its tough to do in many cases. Where do you go? Where does the

money to move come from? Can I get out of my lease? I am too tired to think.

I

can't act. What can I take? What must I leave? Etc, etc, etc.

However, the reality of the matter is, if mold in your environment is making

you sick and you stay in that environment, then take all of the symptoms,

problems and questions listed above, mulitiply them by 1000 and that is what you

life will soon be like if you do not get away from what is making you ill.

Do WHATEVER it takes to get away from what is making you sick.

Sharon

June 5, 2006

Hi there. I can't move. We were very lucky to find someone to rent to us. My son

is legally blind and autistic and I am stuggling to survive as his caregiver. I

had to give up my career to care for him. Isn't there a way to remove the mold?

We just moved in May 1st and I can't leave.

LiveSimply <quackadillian@...> wrote: *****MOVE*******

Now, while you still can....

But while you are there, get the mold tested.

http://indoorairresearch.net has good prices. Take a number of bulk samples,

or tape lifts following their instructions.

Have someone else take the samples, fill out their chain-of-custody form,

numbering each sample consecutively, while you take photos of them doing it

- and then they should send them in.

(with instructions in the form to send the results to you)

June 5, 2006

Wow! Thanks I will ask the allergist. He hasn't be supportive of any natural

methods so far but I can always try another doctor.

LiveSimply <quackadillian@...> wrote: If you have insurance, or even if

you don't, ask your doctor about

cholestyramine. I found out about cholestyramine from someone here and it

was incredibly helpful for me in getting the toxins in my body down to the

level where I could get it together to move out. I was in really terrible

shape. I could barely walk up the stairs to my apartment and I was so

scrambled and confused I would constantly forget where I was and what I was

doing. Like an 80 year old man.

Cholestyramine binds mycotoxins in the digestive system (the bile) where

they accumulate.

Check out http://moldwarriors.com and http://chronicneurotoxins.com for lots

of info on it.

Ive also found that alpha-lipoic acid, n-acetyl cysteine, milk thistle

extract and garlic helped me.. (along with the other, less unusual

antioxidants like vitamins C, E selenium and zinc, daily as well as vitamin

A, D and K supplements because cholestyramine removes them from your body..)

****ask your doctor****

June 5, 2006

That is awful!

renee <rzornrn@...> wrote: So true, we left everything behind and spent

almost 300,000 to get it back and it took 2 years to get it back. It was worth

it not to take it with us otherwise we could get sick again.

[] Re: Help!

LiveSimply wrote:

> *****MOVE*******

> Now, while you still can....

Livesimply-

If you're gonna tell somebody to move because their story is

consistent with high TM exposure, be sure to tell them how easy it is

to take their problems with them with contaminated possessions.

Based on your own valuable experience with the difficulty this

causes, you wouldn't want others to make this needless and expensive

mistake.

-

FAIR USE NOTICE:

June 5, 2006

<green_eyed_indian_princess@...> wrote:

>

> Hi there. I can't move. We were very lucky to find someone to rent

to us. My son is legally blind and autistic and I am stuggling to

survive as his caregiver. I had to give up my career to care for

him. Isn't there a way to remove the mold? We just moved in May 1st

and I can't leave.

>

It's hard to draw a middle ground between trying to scare you out

of there by our horrible stories - and trying to be supportive of a

decision to stay in an environment that may very possibly be worse

than any alternative: A lot of us were driven out to sleep in our

cars in the dead of winter because we could not survive for another

hour inside.

But if I were in that position and was trying to stay, I would rig

up a Hepa air filter with an exhaust ductwork " downstream " to pull

filtered air from the bathroom and out through the window - and then

I would seal the door shut with tape.

Hopefully, creating a low pressure system in a closed bathroom

would draw spores in the walls back toward the filter to trap them,

and the VOC's can go out the window.

I would devise some alternate toilet facilities so that the sealed

bathroom can stay sealed. It sounds unthinkable to go to extremes

like this, but when you've seen what it is like to choose a freezing

cold car out in front of your nice warm - but killer house, crapping

in a bucket isn't so bad by comparison.

Your sons bedding is contaminated. I would cover the bed with

plastic and wash a cotton mattress pad to put over it. All bedding

and clothing should be washed in a laundromat - not your house, so

he can have a lower degree of exposure, ESPECIALLY while sleeping.

I would have the situation assessed by an environmental specialist

who expresses knowledge of the difficulty of successful remediation.

I would not trust anyone who says it is easy or cheap.

Your landlord will probably try to convince you that he knows a

contractor who can just go in, clean up the mold, spray with bleach

and your problems will be over.

For many, that's where the nightmare begins.

I would get " Mold Warriors " as quickly as possible. It's a hard

read, but his is a hard problem.

-

June 5, 2006

hi, sounds like your son is very sensativity to molds. can you keep a

window open in his room? maybe a fan blowing fresh air in? depending

on where you live the outside air may be cleaner than and better for

him than the moldy inside air.I'm baseing this on what you said about

the strong moldy smell. that sounds like theres a big problem. its

hard to say if the mold is cleanable and or repairable, it depends on

extent of damage and types of mold. if your son was not haveing

problems before you stired it up, maybe its cleanable. if you try

cleaning it,wear a mask, use rags that you can throw away and try not

to stir it up. dont sweep it if its dry looking. if you clean what

you can see and strong smell doesnt go away you have a bigger

problem. before you clean, take a piece of clear tape and stick it to

the mold. different colors can mean different molds, try to get a

little of each on the tape. stick this tape in a ziplock bag. it cost

around $50.00 to get this tested to find out what kind of molds you

have. a mold remediation company should tell you were a lab is to

have it tested or usually you can send it to them and they will send

it to their testing lab. you and your landlord need to know the

types of mold there and just how dangerous it is. I'm very worried

about your son and hope the very best for you. I would save every

penny I could to get out of there asap. its important to keep

everything documented in case you deside to talk to a lawyer.

landlords can be sued for injury caused by mold exposure. and if your

son is not able to tell you how he's felling, keep a close eye out

for symptoms. if you at least know what types of molds are there, it

may help you notice the symptoms. constant dierrhia is not good.

bloody noses, caughing up blood, blood in stool, strange colored

urine can all be signs. high white blood cell counts can be signs of

systemic infections. sores around and in the nose can mean a constant

irrataion,sore throat, swelling of lymph glands,sores on skin,

rashes,rubbing ears a lot, felling better when outside, not being

able to stay awake for very long, hair falling out more than usual.

these are some things to keep a eye out for. hope this helps a

little.

-- In

,

<green_eyed_indian_princess@...> wrote:

>

> Hi there. I can't move. We were very lucky to find someone to rent

to us. My son is legally blind and autistic and I am stuggling to

survive as his caregiver. I had to give up my career to care for him.

Isn't there a way to remove the mold? We just moved in May 1st and I

can't leave.

>

> LiveSimply <quackadillian@...> wrote: *****MOVE*******

>

> Now, while you still can....

>

> But while you are there, get the mold tested.

>

> http://indoorairresearch.net has good prices. Take a number of bulk

samples,

> or tape lifts following their instructions.

>

> Have someone else take the samples, fill out their chain-of-custody

form,

> numbering each sample consecutively, while you take photos of them

doing it

> - and then they should send them in.

>

> (with instructions in the form to send the results to you)

>

June 5, 2006

, heres a link to types of mold, just click on the type and it

gives infomation on it and some symptoms and illnesses it causes.

some of the more common molds found inside are:

aspergillus,pinicillium, cladasporium, alternaria, chaetomium,

fusarium, stachybotrys. many molds can be allergenic, pathogenic and

some can put out mycotoxins.

http://www.emlab.com/app/fungi/Fungi.po

-- In ,

<green_eyed_indian_princess@...> wrote:

>

> Hi there. I can't move. We were very lucky to find someone to rent

to us. My son is legally blind and autistic and I am stuggling to

survive as his caregiver. I had to give up my career to care for him.

Isn't there a way to remove the mold? We just moved in May 1st and I

can't leave.

>

> LiveSimply <quackadillian@...> wrote: *****MOVE*******

>

> Now, while you still can....

>

> But while you are there, get the mold tested.

>

> http://indoorairresearch.net has good prices. Take a number of bulk

samples,

> or tape lifts following their instructions.

>

> Have someone else take the samples, fill out their chain-of-custody

form,

> numbering each sample consecutively, while you take photos of them

doing it

> - and then they should send them in.

>

> (with instructions in the form to send the results to you)

>

June 5, 2006

I agree, your son could be in alot of danger, I would, at the least

pitch a tent outside and try to keep him out of that house as much as

possable, and its not going to help him if you get sick too. you

might just have to risk pissing the landlord off and make him

understand that your son is allready ill from the mold and will get

worse and he may be looking at a lawsuit if he doesn't deal with the

mold, NOW! and tell him to put you up in a motel while hes fixing it.

sorry, but you have a lot to lose and I've heard that " I can't do

nothing about it " line before from a landlord and I informed him that

he wouldn't get another penny from me because I would need it to

move. I took pictures of the mold and did the tape in the ziplock bag

and kept it in case I needed to use it. none of us here can tell you

if you have a big mold problem or one that could be dealth with, but

we can tell you that based on your sons asthmatic reactions that

chances are good that he will suffer worse if you dont get him out of

there. as far as your belongings its hard to say, you really need to

know what types of molds are there. and if theres molds that are

putting out toxins, your son could have things going on that you cant

see and it doesn't take stirring up the mold to make it active,some

molds are putting out toxins while wet and growing, some put them out

when dry and they become air borne. a windy day can do

that.

>

> I would have to concur with others on this board whose advice has

been put

> quite simply: Get away from the source cause of the symptoms of

illness, or

> anticipate the symptoms will become increasingly worse. It's as

simple as

> that. All else and all other obstacles are tangential.

>

> I know its tough to do in many cases. Where do you go? Where

does the

> money to move come from? Can I get out of my lease? I am too

tired to think. I

> can't act. What can I take? What must I leave? Etc, etc, etc.

>

> However, the reality of the matter is, if mold in your environment

is making

> you sick and you stay in that environment, then take all of the

symptoms,

> problems and questions listed above, mulitiply them by 1000 and

that is what you

> life will soon be like if you do not get away from what is making

you ill.

> Do WHATEVER it takes to get away from what is making you sick.

>

> Sharon

>

October 29, 2006

Hi All,

I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg) adn

Hydroxyurea (550mg).

I am feeling worse: I have bone/joint pain, dizzy, weak, shortness of breath,

slight fever, sinus drainage, and diarrrea.

Is it the CML or the Gleevec?

I'm taking tylenol for the pain and sometimes Darvocett once a day.

I hate to ask but is this what life is going to be like with CML and Gleevec?

Will some of these symptoms go away when my wbc is normal?

Thanks,

Margaret

Margaret ,

mpraymond@...

margaret-raymond@...

Margaret ,

mpraymond@...

margaret-raymond@...

Margaret ,

mpraymond@...

margaret-raymond@...

October 29, 2006

Hang in there Margaret,

Gleevec side effects usually manifest themselves very early in the

treatment and then tend to go away. Give yourself a month on Gleevec and

then evaluate.

Keep your doctor informed of the side effects.

Go very easy on the Tylenol.

What was the reason for starting at the 600 mg dose rather than the

standard 400 mg dose?

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

PCRU 5/02 at RVH

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ] Fwd: help!

Hi All,

I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg)

adn Hydroxyurea (550mg).

I am feeling worse: I have bone/joint pain, dizzy, weak, shortness of

breath, slight fever, sinus drainage, and diarrrea.

Is it the CML or the Gleevec?

I'm taking tylenol for the pain and sometimes Darvocett once a day.

I hate to ask but is this what life is going to be like with CML and

Gleevec?

Will some of these symptoms go away when my wbc is normal?

Thanks,

Margaret

Margaret ,

mpraymond@...

margaret-raymond@...

Margaret ,

mpraymond@...

margaret-raymond@...

Margaret ,

mpraymond@...

margaret-raymond@...

October 29, 2006

At 05:42 AM 10/29/06 -0800, you wrote:

>I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg) adn

>Hydroxyurea (550mg).

Hi Margaret,

It is pretty unusual to still be on hydroxyurea when you start taking

Gleevec......

I think you are on too much medication between the two drugs at once and

your blood counts

could go very low. You need to be in contact with your oncologist (or

whoever covers for him over the weekend).........or go to an ER to get your

blood levels checked out right away. Your hemoglobin could be dropping too

low.....that would make you short of breath.

C.

October 29, 2006

Margaret:

Good luck on your journey, you will find that the side effects severity will

lessen after about 30 days. Just hang in there until your body gets used to

it. I find that I still have the side effects but either they are not as

severe as they were or I am more used to it. Regardless give your self some

time and your pains will lesson. In the mean time, here are a few things that

I have found that help me:

* Take Gleevec in gelatin capsules (size 000) which can be found at your

health food stores or on line. They help lessen the diarrhea and stomach

cramps. Just open the capsule, slide your tablets in and close it.

* Always take Gleevec on a full stomach and drink plenty of water when

you take it. Never take it on an empty stomach.

* You should always take the medication when you are going to be upright

for at least two hours. You will find that taking the medication and then

lying down usually makes it worse.

* Novartis specifically recommends that you not take too much Tylenol (or

certain vitamins). It can hurt your body. I take mine sparingly.

* You can split your dosage between two times a day. That helps some,

but for me it just made me sick two times a day. I take mine after breakfast

each morning.

* Be careful with things that are processed in the liver, like alcohol.

I cannot drink much anymore, even though I was the beer chugging champ in

college. Other things process in the liver, but you can research those or get

them from someone more knowledgeable than me.

* If you feel feverish or flu-like, take Alieve. It helps me more than

Tylenol or Advil.

* If you feel naseaus, you can take compazine or phenergan or other meds

designed for stomach ailments. I took them originally, but weened myself off

compazine after a few months in an effort to lessen my meds. In the

beginning, it really helped.

* You can take muscle relaxers to help with bone pain. I take Flexerill,

but there are stronger drugs out there. I have also found that heat really

helps and I always drive with my seat warmer on and have a heating pad right

next to my bed.

* I have not found anything that helps with sinus pain. I do use vVks

spray at night.

* It is important to sweat and to get plenty of rest. Sweat allows the

excess toxins to leave your body and rest allows your body to heal.

* I am just starting to research some alternative things that might help.

Massage is out for me as I bruise too easily, but I have heard others that

it really helps.

* Find support, either on line, at church or via the LLS. All are

helpful and the more people you can talk to the better.

* Contact the Leukemia Society and ask to be put on their mailing list

and as for the " First Responder " or " First something " program. It puts you in

contact with people that have been on Gleevec for a lot longer than I have.

They will set this up for you and have someone call. They also have programs

on managing side effects and new treatments. Sign up for what you have time

for.

MD , where I receive treatment, will confer with your doctor if they

call. They say that the first year of treatment is the hardest and most

important. They recommend that you start at 800 mg if you can stand it for at

least the first year. My oncologist started me at 600 mg and I upped it to

800 for as long as I could stand it. Although I have not reached 0.000 on my

PCR, I have reduced it down to 0.05 from 99.9% 18 months ago. After I reached

my on year anniversary, they lowered the dose to 400 mg, which is the lowest

dose they consider theraputic. If you do well in the first year, the longer

prognosis is considered better, at least from all that I have read.

I have read other clinics and sites suggest other things, but this is what I

follow and I am sure you will get other opinions too. It is important to

not give up and try to find short term goals to set for yourself. Maybe a

weekend trip in a few months or a special dinner or anything that will lift your

spirits. DO NOT THINK OF THE LONG TERM GOAL, just set the short term goals

and eventually it will lead to setting long term goals. Right now, just focus

on getting better and managing your side effects.

That is the best that I can do. Hope it is helpful in some small way. Like

I said, you may find what works for me does not help you. But at least you

know what other people are doing.

Matt

October 29, 2006

thanks, I'll see him tomorrow morning and already feel a little better. Maybe I

didnt eat enough when I took my am gleevec?

I appreciate your responses

Margaret

Cogan <ncogan@...> wrote:

At 05:42 AM 10/29/06 -0800, you wrote:

>I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg) adn

>Hydroxyurea (550mg).

Hi Margaret,

It is pretty unusual to still be on hydroxyurea when you start taking

Gleevec......

I think you are on too much medication between the two drugs at once and

your blood counts

could go very low. You need to be in contact with your oncologist (or

whoever covers for him over the weekend).........or go to an ER to get your

blood levels checked out right away. Your hemoglobin could be dropping too

low.....that would make you short of breath.

C.

Margaret ,

mpraymond@...

margaret-raymond@...

October 29, 2006

I used both hyrea and gleevec for about a week at my first Gleevec days. Just

fyi.

Cogan <ncogan@...> wrote:

At 05:42 AM 10/29/06 -0800, you wrote:

>I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg) adn

>Hydroxyurea (550mg).

Hi Margaret,

It is pretty unusual to still be on hydroxyurea when you start taking

Gleevec......

I think you are on too much medication between the two drugs at once and

your blood counts

could go very low. You need to be in contact with your oncologist (or

whoever covers for him over the weekend).........or go to an ER to get your

blood levels checked out right away. Your hemoglobin could be dropping too

low.....that would make you short of breath.

C.

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

Everyone is raving about the all-new .

October 29, 2006

Margaret,

Hang in there, make sure to eat well before taking your Gleevec, and maybe

try to take it before bed. Also if your having that much pain ask for

something stronger. I did the same thing you did, but I was lucky in the

fact that I talked with my doctor and he put me on something that now has my

pain managed. Like Zavie said, most likely your side effects will subside

after a while. Even if they don't, just talk with your doctor and get the

right meds for your side effects.

I cannot stress enough about eating before you take your gleevec. Take Care,

Terry

On 10/29/06, yusuf ÿffffe7ipe <cipeyusuf@...> wrote:

>

> I used both hyrea and gleevec for about a week at my first Gleevec days.

> Just fyi.

>

> Cogan <ncogan@...> wrote:

> At 05:42 AM 10/29/06 -0800, you wrote:

> >I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg) adn

> >Hydroxyurea (550mg).

>

> Hi Margaret,

>

> It is pretty unusual to still be on hydroxyurea when you start taking

> Gleevec......

> I think you are on too much medication between the two drugs at once and

> your blood counts

> could go very low. You need to be in contact with your oncologist (or

> whoever covers for him over the weekend).........or go to an ER to get

> your

> blood levels checked out right away. Your hemoglobin could be dropping too

> low.....that would make you short of breath.

>

> C.

>

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

> Everyone is raving about the all-new .

>

October 30, 2006

Thank you so much for taking the time to respond to my concerns. Yours as other

is much more helpful than what I can find from medical types. I found that the

" flu " was short-lived but I was really sick for 3-4 hours, maybe I didn't eat

enough for my morning gleevec...I had a bowl of cereal... I " ll see the Onco

tomorrow and with your information, I have lots of questions to ask. I've only

been once so all this is very new and scary.

Margaret

mtmaynor@... wrote: