Information

[Guest guest]

Hi there,

Dr. Fosnot info:

21202 Costanso Street, Woodland Hills, CA 91364

818-884-9110

(I live in Woodland Hills (which is right next to Tarzana...)

Happy Holidays!

Sarit

--- Steve and Doris <sjsmith@...> wrote:

> > I have most of the info typed into my son's laptop. WHICH by the way, is a

> wonderful

>

> investment for those traveling long distances ....

>

> We stayed about 15 min away from Tarzana. It was a place recommended

> by relatives who live in the area.... full kitchen, separate BR, comp.

> breakfast ...

> and clean ...

> - I did jot down shopping malls - whew! there sure are alot of Westfield

> malls

> in the area! and Trader Joes on every corner! )

> - I marked down 'places to stay' that I saw from the road and found in local

> adverts.

> - Rent a car from Hertz that has the Global Pos. System in it. Well worth the

> money!

> - I can get Federal discounts. Good for me, not so good for you.

> I did find that being a AAA member was very beneficial. My sister was able

> to get

> me a nice travel book on Southern Calif from her AAA office.

> Nice maps ....good discounts on everything from tickets to rental cars.

> - watch where you go swimming.

>

> Again, I should be able to work on the pkt more after Jan 10 (this is when

> the last auction

> for my son's ABA program will be held).

> The information is there - I just have to organize it.

> Let me know if you need the information soon .... or by a certain time ...

>

> OR if you're a 'Valley Local' and have addtl information ) )

> I have located a website on San Diego which gives directions

> for LegoLand. I have no information on Disney Land or San Diego

> at this time ...

>

> Just Dr G and the Neurospect.

>

> This year's visit will include some 'vacation' time ....

>

> hey - does anyone have Dr Fosnot's # ?

> I need to try and schedule an appt ....

>

> Doris

> -land

>

> http://nids.net

> http://steve_doris.tripod.com

>

>

>

> > Message: 10

> > Date: Tue, 18 Dec 2001 19:05:02 -0600

> > From: " Sheldon " <nsheldon@...>

> > Subject: RE: neurospect and info pkt

> >

> > Doris-

> > I was looking for close hotels, shopping malls, play areas, etc.

> > Could you put me on a " want " list when you're finished?

> > Thanks

> > Staci

> >

> > neurospect and info pkt

> >

> > 1- BCBS paid for the entire neurospect

> > 2- I am slowly (very slowly) putting together a pkt

> > with info on hotels, motels, shopping areas,

> > locations of Dr G and neurospect ....

> > The board will probably beat me )

> >

> > I have the info in a folder that I can retrieve

> >

> > What info were you looking for ?

> >

> > doris

> > sville MD

> >

> > Responsibility for the content of this message lies strictly with

> > the original author, and is not necessarily endorsed by or the

> > opinion of the Research Institute.

> >

> >

> >

[Guest guest]

Hello,

YOu can appeal for more money with your insurance company. Also,

possibly check in with your early intevention office to see if they

have any suggestions. You can always do a fund raiser too. We put

the payments on a 0% APR credit card. There are also a couple

organizations that can help out with medical bills like this. If

you go to our links section under insurance/insurance help, they're

in there. They are state specific though, so it depends where you

live. Good luck.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com/hannahs_noggin/

--- In Plagiocephaly , " jclarey12 " <jclarey12@y...>

wrote:

>

> We seem to have been lucky by getting the ok from our insurance

> compnay for $1000 but we still need to come up with another $1500

out

> of pocket, which like everyone else money is very tight and we do

not

> have it and would like to know if anyone has had any luck with

> supplemental insurance or any other advice for getting some help

with

> raising the money for a band.

>

> Thanks,

[Guest guest]

>

>

>

>

> My name is Gillian and I have had MS for 24 years. I am now 68 years old

> (just!) and for 9 years have had chronic progressive MS. I use a power

> chair at home and a scooter when out. I had remissions for years and have

> gone through fatigue, optic problems, depression, numbness on my left side.

> I used a hyberbaric oxygen chamber for several years and it was helpful for

> double vision and fatigue. I was walking with a stick at that time.

>

> I now have acupuncture, massage or shiatsu,( whichever my therapist thinks

> best at the time) every fortnight and fortunately have none of the above

> ailments any more. However I can hardly put one foot in front of another as

> my legs are so stiff and heavy and I wonder if LDN would help me?

>

> I take the anti depressant, Lustral daily and also Troseuim which helps the

> bladder problem. Fortunately I have never had pain. When I feel a bad cold

> coming on or flu in particular, I take a low dose of steroids. I see that

> you are advised not to take steroids when using LDN but I wonder about the

> other two drugs I take.

>

> I take evening primrose capsules, Vit C, Cal.mag. and a general vitamin

> supplement.

>

> Your advise would be very much appreciated.

>

>

> Gilly

>

========

LDN's main purpose is to halt disease progression and if you are lucky you might

get some symptom improvement. LDN has helped many with urinary frequency. LDN

is trial and error...it works differently in every individual. If I were you,

I'd try it. Since you have stiffness you probably should start out with 3.0mg

instead of the full 4.5mg.

For your stiffness/spasticity you have you might try a combination supplement of

Calcium/Magnesium/Zinc. It has helped my spasticity slightly. Nothing

dramatic.

Go for the LDN...make sure you use one of the reputable compounding pharmacies

on the LDN website if you are in the USA. If you do not use one of the

pharmacies on the LDN site make sure your pharmacy uses Pure Naltrexone Powder

and does not use calcium carbonate as your capsule filler. Calcium carbonate

can at times cause LDN to release slow and LDN must release fast. The best

fillers for LDN are...Acidophilus(milk free), Lactose, Gelatin or

Avicel(cellulose). There have been no complaints of side effects from

Acidophilus and Gelatin fillers so far. Avicel has caused some people nausea,

headache and vomiting and Lactose stomach upset.

[Guest guest]

Thanks for sharing the site. I am familiar with it since I bought their

book " Good Living with Fibromyalgia " which has been very useful. Have

to check out the free literature available on the site next when I have

a chance.

Debbie L

>

> I was surfing the web and found the Arthritis

> Foundation website. http://www.arthritis.org/

> They offer so much free information along with other

> information that might help deal with this disease.

> The free information is located in the " store " under

> " free literature " . There is information on

> medications, exercise, etc. Hope this helps.

>

> Joanne

>

[Guest guest]

It's a great site! My rheumatologist recommended me to

it the moment I was diagnosed with FMS. They offer

great pace classes and hydrotherapy as well. I've

been a member of the Arthritis Foundation since 2000.

--- deebs87 <dlohf@...> wrote:

> Thanks for sharing the site. I am familiar with it

> since I bought their

> book " Good Living with Fibromyalgia " which has been

> very useful. Have

> to check out the free literature available on the

> site next when I have

> a chance.

> Debbie L

>

>

>

> >

> > I was surfing the web and found the Arthritis

> > Foundation website. http://www.arthritis.org/

> > They offer so much free information along with

> other

> > information that might help deal with this

> disease.

> > The free information is located in the " store "

> under

> > " free literature " . There is information on

> > medications, exercise, etc. Hope this helps.

> >

> > Joanne

> >

>

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Isn't it amazing the amount of information we pass on to each other that our

doctors don't know or tell us about. Sometimes they depend on us to keep up

with the latest information. What happens when we take something that has a

contraindication? It probably keeps us from reaching our full potential. I

have seen over and over again, that it up to us to keep abreast of what is going

on in the CML world.

So, to everyone who shares their information with us, thank you. It's good to

know you are out there with answers. Dory is right, not every large city has a

CML specialist and not every oncologist can keep up with the 200 hundred kinds

of cancer. It is good if you have a specialist, but how many do not have the

opportunity to visit one because of logistics or children they can't leave at

home.

Last week my research nurse told me to keep the covers on the bottles once they

were emptied. I usually discard them and just keep the empties, so that way, I

can see through the zip lock bag where they are and how many I have left. Seems

the pharmacist who collects the bottles and counts them wants to get pregnant

and complained that she was afraid to touch the empty bottles. Isn't that a

little scary for her? If you have any drugs that you no longer use (any kind),

your pharmacists is supposed to have a special way to dispose of them. Do not

flush them down your toilet or throw them in the garbage. There is a study that

is ongoing about the chemicals in our drinking water. Some people have

allergies and are drinking water with all kinds of meds they would not

ordinarily take. When you take any meds, it is flushed through the kidneys and

goes back into the water eventually. Think about it.

Blessings,

Lottie

Blessings,

Lottie

[Guest guest]

Lottie,

When I was Dx about 5 months ago I asked specifically if there were

any medicines,vits,minerals or over the counter things to avoid.My Dr.s

office told me NO.This is very scary. I am taking 600 mg Gleevec

daily.Does anyone know the things to avoid for this medication? I heard

about Grapefruit juice but that is it.Thanks for the help.

SharonS

> Isn't it amazing the amount of information we pass on to each other

that our doctors don't know or tell us about.

In , " Lottie Duthu " <lotajam@...> wrote:

[Guest guest]

Hi Sharon,

St. s Wart is another one. Tylenol is another. Also, they don't want you

to have alcohol. I think it's because they don't want you to tax the liver.

Personally I don't see the big harm in having a glass of wine once in a

while.

If you want to make yourself totally nuts, you can look up all the items you

shouldn't be taking with Gleevec. Here is a partial list.

What other drugs will affect imatinib?

Many drugs can interact with imatinib. Below is just a partial list. Tell

your doctor if you are using:

* cyclosporine (Gengraf, Neoral, Sandimmune);

* dexamethasone (Decadron, Hexadrol);

* fentanyl (Actiq, Duragesic, Ionsys);

* sirolimus (Rapamune), tacrolimus (Prograf);

* St. 's wort;

* a blood thinner such as warfarin (Coumadin);

* an antibiotic such as azithromycin (Zithromax), ciprofloxacin

(Cipro), clarithromycin (Biaxin), erythromycin (E-Mycin, E.E.S., Ery-Tab,

Erythrocin), griseofulvin (Fulvicin, Grifulvin, Grisactin), itraconazole

(Sporanox), ketoconazole (Nizoral), metronidazole (Flagyl, Protostat),

rifampin (Rifadin, Rimactane, Rifater);

* antidepressants such as citalopram (Celexa), escitalopram (Lexapro),

fluoxetine (Prozac, Sarafem), fluvoxamine (Luvox), paroxetine (Paxil), or

sertraline (Zoloft);

* a barbiturate such as amobarbital (Amytal) or phenobarbital

(Luminal, Solfoton);

* a calcium channel blocker such as diltiazem (Tiazac, Cartia,

Cardizem), nifedipine (Procardia, Adalat), verapamil (Calan, Covera,

Isoptin, Verelan), and others;

* cholesterol-lowering medicines such as lovastatin (Mevacor),

simvastatin (Zocor), pravastatin (Pravachol), fluvastatin (Lescol),

atorvastatin (Lipitor), or cerivastatin (Baycol).

* ergot medicine such as ergotamine (Ergomar, Cafergot) or

dihydroergotamine (D.H.E. 45, Migranal Nasal Spray);

* HIV medication such as nevirapine (Viramune), delavirdine

(Rescriptor), efavirenz (Sustiva), indinavir (Crixivan), ritonavir (Norvir),

saquinavir (Invirase), or nelfinavir (Viracept);

* sedatives such as alprazolam (Xanax) or triazolam (Halcion); or

* seizure medication such as carbamazepine (Carbatrol, Tegretol) or

phenytoin (Dilantin).

After a while you get to know what affects you. In my case, I take Coumadin

daily. Gleevec also acts as a blood thinner, so I need to get tested more

often and alter my dose of Coumadin. I don't alter the Gleevec dose. When I

have a headache (not very often) I take a regular Tylenol. It doesn't seem

to make any difference.

I would try and find a doctor who is experienced in treating CML. This will

come in handy if you run into problems.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

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

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: October 5, 2008 10:00 PM

Subject: [ ] Re: Information

Lottie,

When I was Dx about 5 months ago I asked specifically if there were

any medicines,vits,minerals or over the counter things to avoid.My Dr.s

office told me NO.This is very scary. I am taking 600 mg Gleevec

daily.Does anyone know the things to avoid for this medication? I heard

about Grapefruit juice but that is it.Thanks for the help.

SharonS

> Isn't it amazing the amount of information we pass on to each other

that our doctors don't know or tell us about.

In groups (DOT) <mailto:%40> com, " Lottie Duthu "

<lotajam@...> wrote:

[Guest guest]

Thanks Zavie,

I will print this out for reference. I am taking Zocor and it is on

this list. Wonder if I need to change to something else? Will it

affect the useage of gleevec or is it not advised becuase of side

effects of mixing meds? Any ideas why it is to be avoided? I also

take prevacid and wondered about that.I take alot of heavy narcotics

also.My CML Dr. didn't say anything about the list of meds I am

currently taken.I will print this out and ask him.

Thanks

SharonS

In , " Zavie " <zmiller@...> wrote:

>

> Hi Sharon,

>

> St. s Wart is another one. Tylenol is another. Also, they don't

want you

> to have alcohol. I think it's because they don't want you to tax

the liver.

> Personally I don't see the big harm in having a glass of wine once

in a

> while.

>

> If you want to make yourself totally nuts, you can look up all the

items you

> shouldn't be taking with Gleevec. Here is a partial list.

>

> What other drugs will affect imatinib?

> Many drugs can interact with imatinib. Below is just a partial

list. Tell

> your doctor if you are using:

> * cyclosporine (Gengraf, Neoral, Sandimmune);

> * dexamethasone (Decadron, Hexadrol);

> * fentanyl (Actiq, Duragesic, Ionsys);

> * sirolimus (Rapamune), tacrolimus (Prograf);

> * St. 's wort;

> * a blood thinner such as warfarin (Coumadin);

> * an antibiotic such as azithromycin (Zithromax), ciprofloxacin

> (Cipro), clarithromycin (Biaxin), erythromycin (E-Mycin, E.E.S.,

Ery-Tab,

> Erythrocin), griseofulvin (Fulvicin, Grifulvin, Grisactin),

itraconazole

> (Sporanox), ketoconazole (Nizoral), metronidazole (Flagyl,

Protostat),

> rifampin (Rifadin, Rimactane, Rifater);

> * antidepressants such as citalopram (Celexa), escitalopram

(Lexapro),

> fluoxetine (Prozac, Sarafem), fluvoxamine (Luvox), paroxetine

(Paxil), or

> sertraline (Zoloft);

> * a barbiturate such as amobarbital (Amytal) or phenobarbital

> (Luminal, Solfoton);

> * a calcium channel blocker such as diltiazem (Tiazac, Cartia,

> Cardizem), nifedipine (Procardia, Adalat), verapamil (Calan, Covera,

> Isoptin, Verelan), and others;

> * cholesterol-lowering medicines such as lovastatin (Mevacor),

> simvastatin (Zocor), pravastatin (Pravachol), fluvastatin (Lescol),

> atorvastatin (Lipitor), or cerivastatin (Baycol).

> * ergot medicine such as ergotamine (Ergomar, Cafergot) or

> dihydroergotamine (D.H.E. 45, Migranal Nasal Spray);

> * HIV medication such as nevirapine (Viramune), delavirdine

> (Rescriptor), efavirenz (Sustiva), indinavir (Crixivan), ritonavir

(Norvir),

> saquinavir (Invirase), or nelfinavir (Viracept);

> * sedatives such as alprazolam (Xanax) or triazolam (Halcion);

or

> * seizure medication such as carbamazepine (Carbatrol,

Tegretol) or

> phenytoin (Dilantin).

>

> After a while you get to know what affects you. In my case, I take

Coumadin

> daily. Gleevec also acts as a blood thinner, so I need to get

tested more

> often and alter my dose of Coumadin. I don't alter the Gleevec

dose. When I

> have a headache (not very often) I take a regular Tylenol. It

doesn't seem

> to make any difference.

>

> I would try and find a doctor who is experienced in treating CML.

This will

> come in handy if you run into problems.

>

> Zavie

>

>

>

>

> Zavie (age 70)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> 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

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf

Of

> serenitywon

> Sent: October 5, 2008 10:00 PM

>

> Subject: [ ] Re: Information

>

> Lottie,

> When I was Dx about 5 months ago I asked specifically if there were

> any medicines,vits,minerals or over the counter things to avoid.My

Dr.s

> office told me NO.This is very scary. I am taking 600 mg Gleevec

> daily.Does anyone know the things to avoid for this medication? I

heard

> about Grapefruit juice but that is it.Thanks for the help.

> SharonS

>

> > Isn't it amazing the amount of information we pass on to each

other

> that our doctors don't know or tell us about.

>

> In groups (DOT) <mailto:%40> com, " Lottie

Duthu "

> <lotajam@> wrote:

>

>

>

>

[Guest guest]

Hi Sharon, I'm no longer on Gleevec, but there is a list somewhere out there

on-line.

Google it and see if it comes up.

Blessings,

Jeanie<3

In a message dated 10/5/2008 7:21:41 P.M. Pacific Daylight Time,

serenitywon@... writes:

Lottie,

When I was Dx about 5 months ago I asked specifically if there were

any medicines,vits,any medicines,vits,<WBR>minerals or over the counter thin

office told me NO.This is very scary. I am taking 600 mg Gleevec

daily.Does anyone know the things to avoid for this medication? I heard

about Grapefruit juice but that is it.Thanks for the help.

SharonS

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out!

(http://local.mapquest.com/?ncid=emlcntnew00000001)

[Guest guest]

Hi Sharon,

As Zavie posted, there are loads of drugs that interact with Gleevec

but this doesn't necessarily mean that you can't take them. In each

case you need to find out how the drug is metabolized which will then

show you how it can interact.

In some cases the additional drug will increase Gleevec plasma

concentrations (making it stronger and perhaps toxic), in other cases

the additional drug will reduce the effectiveness of Gleevec which

obviously isn't a good thing either.

In most cases you can manage the different drugs with dose

adjustments to the additional drug.....either taking less than the

standard dose or more depending on the case. You should never adjust

your dose of Gleevec but rather adjust the dosing of the additional

drug.

One of the websites that I use to determine how drugs are metabolized

is www.drugs.com

In addition to prescription drugs, last year I posted how Vit C can

interact with Gleevec making it less effective so you should probably

avoid that vitamin altogether.

Take care,

Tracey

>

[Guest guest]

Hi Sharon I was on Zocor that works in the liver so does Gleevec. I changed to

Zetia tabs 10MG ,my  count improved some . Good luck Dx 12/23/05 600 Gleevec

[ ] Re: Information

>

> Lottie,

> When I was Dx about 5 months ago I asked specifically if there were

> any medicines,vits, minerals or over the counter things to avoid.My

Dr.s

> office told me NO.This is very scary. I am taking 600 mg Gleevec

> daily.Does anyone know the things to avoid for this medication? I

heard

> about Grapefruit juice but that is it.Thanks for the help.

> SharonS

>

> > Isn't it amazing the amount of information we pass on to each

other

> that our doctors don't know or tell us about.

>

> In groups (DOT) <mailto:% 40groups. com> com, " Lottie

Duthu "

> <lotajam@> wrote:

>

>

>

>