Bad news

[Guest guest]

I did not get the original message Sara and would love to see the picture of

na. I remember and remember seeing an early pic of na. All

my thoughts and prayers go out to her and the family for the tragedy. She is

our newest angel.

mom to Rudy (ds) & 14 & TJ 17

[Guest guest]

OMG... Please tell we are sorry or her loss and will pray for her and

the family. I am so stunned for words.

... mom to and Dayton

Bad News

>

>

> I thought all of your should know that Machkovich has been taken off

> the list (at her own request) because her daughter, na (ds and twin)

> passed away on May 2, 2000 at age 22 months. na died of

> penicillin-resistant pneumococcal pnemonia which was not discovered until

> after her death. She suffered a lot in her last month of life and we all

> know she is in a better place know. I am attaching a picture of sweet

> na, so that we can all remember her as the sweet, happy angel that

she

> is.

>

> Please keep and her family in your prayers.

>

> Sara

>

> http://DSyndrome.com/Multiples

>

[Guest guest]

Thanks for letting us know Sara and thanks for posting

the picture.. Please let and her family know how

sorry I am to hear of their loss. na, and

family will be in my prayers.

Judi

__________________________________________________

[Guest guest]

Oh no that is just so sad. They will be having a difficult Christmas. My

thoughts and prayers are with the Machkovich family and I hope they find the

strength to get through this tragic time.

Carolyn

[Guest guest]

I didn't ge the original E mail either, but I went to E groups to the

archieves and could view the picture that way.

Such a tradegy, na, and their family are in our thoughts and

prayers.

We all have so many angels among us and watching over us.

~,moma to (DS) & Sloan

[Guest guest]

Hi All,

I hope everyone is enjoying the Holidays. I am so far behind reading this

list, but I am so curious to know what happened with 's family. For some

reason, I didn't get Sara's e-mail that told what happened, but did get all

the replies. Anyway, they are in my prayers. We are not able to access our

e-mail, other than going on long-distance, which I am now. I have called AOL

four times to remind them it is not fixed, yet.

Anyway, Merry Christmas to all of you.

Marcia

Mom to Sara (DS) and 6 and Lucas 10

[Guest guest]

y'all please pray. I was evesdropping when my parents

and my brother were arguring late few nights ago.

Anyways my brother killed someone when he was 15, and

he's 17 now. He's just now telling my parents. What

worse can happen after you kill someone? Anyways he's

had a rough life since he was 6 years old. I guess

I'm the lucky and the good child, even though I have

problems.

=====

Friends Till The End

__________________________________________________

[Guest guest]

Bets, I am so sorry ( Please keep us informed of the results that you find out!!! Do you know when the MRI is set up for yet??? Take care!!! REST!!!

{{{ Special Hugs }}}

Helen

HI ALLSORRY FOR ONE EMAIL BUT VERYUPSETWELL TODAY WAS A BAD DAY ANDKEPT FALLING AND THE PAIN WASHORRIBLECALLED DOC AND WAS TOLD TOCOME RIGHT INSHE EXAMINED ME AND WASPUZZLED IT IS NOT FMS!!SHE FEELS IT MAY BE M.SPLUS SOMETHING WRONG WITHMY BACKSO HAVE TO SEE A NEUROGOGISTAND HAVE AN MRI ASAP!!WHEN IT RAINS IT POURSJUST WANTED TO LET YOU ALLKNOW WHAT THE DOC SAID SHEIS VERY CONCERNED AND I AMNOW USING A CANE-SHE REALLYWANTS ME TO USE A WALKERBUT SAID TO WAIT UNTIL I SEENEUROLOGIST AND HAVE THEMRIHER OFFICE IS GOING TO CALLME WITH THE APPT DATESWILL KEEP YOU INFORMEDLOVE BETSY

Always put yourself in others' shoes. If you feel that it hurts you, it probably hurts the other person, too.

[Guest guest]

PLEASE DISREGARD THIS ONE!!! WENT TO WRONG LIST ( CALL ME BRAIN DEAD (

SORRY

HELEN

Bets, I am so sorry (  Please keep us informed of the results that you find out!!!  Do you know when the MRI is set up for yet???  Take care!!! REST!!!       {{{ Special Hugs }}}                   Helen

<center></center>

Always put yourself in others' shoes. If you feel that it hurts you, it probably hurts the other person, too.

[Guest guest]

a,

Sorry to hear that you can't make it this year --- If my memory

serves me correct -- you've been to them all -- just like me.

Hope everything is going OK for you. :-)

Hugs, Kathy

[Guest guest]

Hi, yea well things will be ok in time. I will miss all the fun, but it will

be there again next year. Maybe us midcoast folks can have our own picnic

some time.

aW

[Guest guest]

Despite all the prayers, the tumor was malignant. They did a lumpectomy

yesterday, also did inject dye to check lymph nodes which were clear,

however, the pathology report won't be in till next week. I am so shocked,

from what everyone was telling me, I thought this was only fibrous cyst and

nothing else. Even the surgeon who looked at the films with me last Monday

at the appt. told me it looked like an 8 or 9 out of 10 that it would be

benign.

The surgery was okay, went home about two hours later, just a little pain,

not that bad. I feel so despondent, everyone else had a good outcome, I feel

so let down that my ending wasn't a more happier one either.

Next week, I see the surgeon again, who will refer me to oncologist to see

what preventitive measures we will take with this.

Thanks all for your prayers and concern.

[Guest guest]

Hi ,

Glad to hear your surgery went well. Plus I'm so proud of you for

taking these steps even if its not good news. Do you know what I

mean? Can you imagine if you had NOT gotten the mammo and not

actually knowing of what was going on? You are doing something about

it. You concentrate thinking positive that you are a survivor and

take it one day at a time with lots of prayers that you could handle

whatever steps needed to your health issues. HUGS & Prayers.

Irma

> Despite all the prayers, the tumor was malignant. They did a

lumpectomy

> yesterday, also did inject dye to check lymph nodes which were

clear,

> however, the pathology report won't be in till next week. I am so

shocked,

> from what everyone was telling me, I thought this was only fibrous

cyst and

> nothing else. Even the surgeon who looked at the films with me

last Monday

> at the appt. told me it looked like an 8 or 9 out of 10 that it

would be

> benign.

>

> The surgery was okay, went home about two hours later, just a

little pain,

> not that bad. I feel so despondent, everyone else had a good

outcome, I feel

> so let down that my ending wasn't a more happier one either.

>

> Next week, I see the surgeon again, who will refer me to oncologist

to see

> what preventitive measures we will take with this.

>

> Thanks all for your prayers and concern.

>

>

>

>

>

[Guest guest]

!

I'm so sorry to hear this. It is frightening and devastating stuff. But you

*are* taking an aggressive approach, and you *did* catch it very early, it

sounds like. So the odds are this tumor is history in a sense.

Now your focus is on being a survivor, like my husband Rex. do your

homework. Ask questions. don't necessarily believe what you are told unless

it feels " right " along with what you learn on your own.

ahs taught you well. Treat it like an IEP or other issue. You want

answers and you want aggressive, compassionate, and effective ones!

Hang in there. You can do this. Malignancy doesn't mean it's necessarily

awful. It just changes the rules. You *will* win.

hugs

j

[Guest guest]

,

Joan said it well. Do your research and treat it aggressively. Our kids teach us

how to do things we never thought possible. You can do this!!!!

I am sorry you didn't get the news you wanted to hear. If you need someone to

talk to let me know I will call you. (((((HUGS)))))))

Pam

Joan <joan@...> wrote: !

I'm so sorry to hear this. It is frightening and devastating stuff. But you

*are* taking an aggressive approach, and you *did* catch it very early, it

sounds like. So the odds are this tumor is history in a sense.

Now your focus is on being a survivor, like my husband Rex. do your

homework. Ask questions. don't necessarily believe what you are told unless

it feels " right " along with what you learn on your own.

ahs taught you well. Treat it like an IEP or other issue. You want

answers and you want aggressive, compassionate, and effective ones!

Hang in there. You can do this. Malignancy doesn't mean it's necessarily

awful. It just changes the rules. You *will* win.

hugs

j

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

[Guest guest]

Oh , I will continue to pray and am thankful you caught this so

early, didnt you say it was only less than 1cm? And so glad the

lymph nodes were clear, like Joan says, you will win this and we are

all so behind you, as always, I am so glad you had this mamo. Am

proud of you for being strong, I know this is hard, I am so sorry you

have been going through this, I am praying and thinking of you!! Dawn

-- In @y..., Ltb3105@a... wrote:

> Despite all the prayers, the tumor was malignant. They did a

lumpectomy

> yesterday, also did inject dye to check lymph nodes which were

clear,

> however, the pathology report won't be in till next week. I am so

shocked,

> from what everyone was telling me, I thought this was only fibrous

cyst and

> nothing else. Even the surgeon who looked at the films with me

last Monday

> at the appt. told me it looked like an 8 or 9 out of 10 that it

would be

> benign.

>

> The surgery was okay, went home about two hours later, just a

little pain,

> not that bad. I feel so despondent, everyone else had a good

outcome, I feel

> so let down that my ending wasn't a more happier one either.

>

> Next week, I see the surgeon again, who will refer me to oncologist

to see

> what preventitive measures we will take with this.

>

> Thanks all for your prayers and concern.

>

>

>

>

>

[Guest guest]

Dear ,

So sorry to hear the results of your test. I also agree with

everything Joan said. I'm really sorry you are going through this, but you

will survive! My was diagnosed with leukemia 9 years ago and the

3 years of treatment were hard on her & all of us, but we survived & now the

doctor says we can consider her cured! You will be a survivor like

& Joan's Rex!

Many prayers & hugs.

[Guest guest]

In a message dated 7/13/02 10:54:44 AM Eastern Daylight Time, Ltb3105@...

writes:

> They did a lumpectomy

> yesterday, also did inject dye to check lymph nodes which were clear,

> however, the pathology report won't be in till next week

, I wish we could help. We care about you. Do you have someone to help

you thru this? Be strong. Keep us posted.

Diane {{{{{{{{{hugs}}}}}}}}}}}

[Guest guest]

In a message dated 7/14/02 9:03:09 AM Eastern Daylight Time,

dben937342@... writes:

> > They did a lumpectomy

> > yesterday, also did inject dye to check lymph nodes which were clear,

> > however, the pathology report won't be in till next week

>

> , I wish we could help. We care about you. Do you have someone to help

> you thru this? Be strong. Keep us posted.

> Diane {{{{{{{{{hugs}}}}}}}}}}}

I still haven't gotten 's post ( I despise AOL) on the latest news, but

got your reply Diane. , I am so sorry!!!! Sounds like more damn

waiting too!!! I'm so sorry for all of this!! I wish there was something

I could do to help!! All I can do from here is keep sending those prayers

and positive thoughts . That they caught this early, that it's

treatable, and that I wish you much love, support and strength to get you

through this. Keep positive thoughts and hold your family; all things that

have worked for me in my most challenging experiences!!!

Write when you can and know that we are with you!!!

Donna

[Guest guest]

Oh ,

I'm so sorry. :-( You didn't have a bad outcome though . You don't

know the outcome yet. It was caught early, ya know. Saying tons of prayers

for you .

Gail :-)

<< Despite all the prayers, the tumor was malignant. They did a lumpectomy

yesterday, also did inject dye to check lymph nodes which were clear,

however, the pathology report won't be in till next week. I am so shocked,

from what everyone was telling me, I thought this was only fibrous cyst and

nothing else. Even the surgeon who looked at the films with me last Monday

at the appt. told me it looked like an 8 or 9 out of 10 that it would be

benign.

The surgery was okay, went home about two hours later, just a little pain,

not that bad. I feel so despondent, everyone else had a good outcome, I

feel

so let down that my ending wasn't a more happier one either.

Next week, I see the surgeon again, who will refer me to oncologist to see

what preventitive measures we will take with this.

Thanks all for your prayers and concern.

>>

[Guest guest]

In a message dated 7/13/2002 10:54:43 AM Eastern Daylight Time,

Ltb3105@... writes:

> Despite all the prayers, the tumor was malignant.

Hi ,

Excuses my delay in responding. I was working but thought of you all weekend.

I am so sorry. Hopefully it is in the early stages and everything will be ok.

Keep me posted. I am still praying!!!

((((((((((((HUGS))))))))))))

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

((HUGS)) laura, my prayers are with you for a speedy

uneventful recovery. shawna.

--- Ltb3105@... wrote:

> Despite all the prayers, the tumor was malignant.

> They did a lumpectomy

> yesterday, also did inject dye to check lymph nodes

> which were clear,

> however, the pathology report won't be in till next

> week. I am so shocked,

> from what everyone was telling me, I thought this

> was only fibrous cyst and

> nothing else. Even the surgeon who looked at the

> films with me last Monday

> at the appt. told me it looked like an 8 or 9 out of

> 10 that it would be

> benign.

>

> The surgery was okay, went home about two hours

> later, just a little pain,

> not that bad. I feel so despondent, everyone else

> had a good outcome, I feel

> so let down that my ending wasn't a more happier one

> either.

>

> Next week, I see the surgeon again, who will refer

> me to oncologist to see

> what preventitive measures we will take with this.

>

> Thanks all for your prayers and concern.

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

I have been having great success on Zyflo. I called Abbott to confirm that they are discontinuing it. They are. I spoke to my allergist and told him. He said that he will be in touch with Dr. son at Scripps to advise him and see what he suggests. However, I not sure what anyone will be able to do. My allergist said for most people (not Samters people) Singular helps them, therefore this medication is one of choice for most asthmatics since it is easier to take than Zyflo and Accolate (with Singular, there are no blood tests needed to monitor liver functions).

I really think Zyflo helps only Samters people, a small minority. Abbott labs cares only about bottom line and Zyflo isn't a hot seller for them. I'm really upset and I don't know what I'm going to do. I will sign any petition. My allergist also recommended that all our doctors write to Abbott labs indicating that Zyflo helps us dramatically and nothing else will be able to replace it. Maybe then, Abbott will give the drug rights to some smaller company that will make it for us.

Lori in Arizona

bad news

I just looked at the FDA's discontinued drug list, and Zyflo is on it.Apparently, they've discontinued it as of June, and it will beavailable through wholesalers until december.This is the only drug that's had any major effect for me. I'm reallynot sure what to do, as I really don't want to go back to polyps andsteroids. I need to see who else here is having good success with thedrug, so I can consider setting up a petition.

[Guest guest]

I'm glad he's taking an interest in your case; I have had my doctor

write me a years prescription and I have also written an email to the

FDA. I hope that more people in the forums will call, if they've had

success with the drug. Abbott's number for the matter is

1-800-633-9110, and I spoke to MIke Marshall, one of four pharmacists

on staff. He declined to give an email address, and said that there

were still plenty of supplies left.

I think a petition is a good idea, but beforehand I'd like to get an

informal count of people in this forum who are using the drug

currently, and their success with it. If people are also enjoying

successful treatment with one of the two LT inhibitors, i'd like to

hear their strategies.

A ray of hope in the matter: Merck is currently producing a similar

drug, (more like Zyflo -than like accolate / singulair).

Its code name is MK-886. Also, Zeneca has a drug, referenced <a

href='http://thorax.bmjjournals.com/cgi/content/abstract/49/8/749'>ZD2138</a>

A third ray of hope is the herbal compound boswellia serrata,

(frankincense, whodathunkit!) which has been linked to lipoxygenase

inhibition.

My strategy for dealing with this is multi-pronged:

1.Obtain as much Zyflo as I can afford, refrigerate. If I can go

three years or so, I figure they'll have something new by then.

2.Continue to press abbott to reverse their decision. This should

include letters from doctor to FDA, Abbott, as well as a petition.

3.Start experimenting with singulair / accolate combinations.

4.try Boswellia.

5.Investigate CLA (conjugated linoleic acid) tablets. These may also

alter the arachidonic acid cascade.

6.Continue low-calorie, low fat diet, remove animal fats and milkfat

entirely.

We're lucky the science is as well established as it is. Samter's

sufferers are by no means a small population -- it's just that the

disease goes by several names. ASA, AIA, AIAR, triad, etc. Aspirin

sensitive asthma is thought to comprise 5-10% of asthma suffers, who

in turn make up about 48% of americans. That means there could be

more than 10 million of us out there, in varying degrees of sinus pain.

I would urge everyone who hasn't already to try Zyflo with their

doctor. Yes, it may be going away, but you'll see what you've been

missing -- and who knows, the spike in sales might turn some heads at

Abbott.

> I have been having great success on Zyflo. I called Abbott to

confirm that they are discontinuing it. They are. I spoke to my

allergist and told him. He said that he will be in touch with Dr.

son at Scripps to advise him and see what he suggests. However,

I not sure what anyone will be able to do. My allergist said for most

people (not Samters people) Singular helps them, therefore this

medication is one of choice for most asthmatics since it is easier to

take than Zyflo and Accolate (with Singular, there are no blood tests

needed to monitor liver functions).

>

> I really think Zyflo helps only Samters people, a small minority.

Abbott labs cares only about bottom line and Zyflo isn't a hot seller

for them.

>

> I'm really upset and I don't know what I'm going to do. I will sign

any petition. My allergist also recommended that all our doctors

write to Abbott labs indicating that Zyflo helps us dramatically and

nothing else will be able to replace it. Maybe then, Abbott will give

the drug rights to some smaller company that will make it for us.

>

> Lori in Arizona

> bad news

>

>

> I just looked at the FDA's discontinued drug list, and Zyflo is on it.

> Apparently, they've discontinued it as of June, and it will be

> available through wholesalers until december.

>

> This is the only drug that's had any major effect for me. I'm really

> not sure what to do, as I really don't want to go back to polyps and

> steroids. I need to see who else here is having good success with the

> drug, so I can consider setting up a petition.

>

>

>

[Guest guest]

Pranlukast is very similar to Singulair, antagonizing LTC, LTD, and

LTE leukotrienes. Zileuton (Zyflo) works one level up in the cascade,

inhibiting 5-lipoxygenase.

That said, I have been trying 20 mg of singulair daily for the past

two days, and while it's not everything the zyflo was, it does seem to

be keeping the worst symptoms at bay. I am trying to keep meat and

dairy out of my diet for the time being, as I've noticed that animal

and dairy fats seem to exacerbate the condition. (KFC, while tasty,

leads to a fairly strong attack). I'm interested in trying the

glucosamine, although I'm a bit curious as to why it works, given the

fact that it has no effect on the 5-LO pathway.

> > I have been having great success on Zyflo. I called Abbott to

> confirm that they are discontinuing it. They are. I spoke to my

> allergist and told him. He said that he will be in touch with Dr.

> son at Scripps to advise him and see what he suggests. However,

> I not sure what anyone will be able to do. My allergist said for most

> people (not Samters people) Singular helps them, therefore this

> medication is one of choice for most asthmatics since it is easier to

> take than Zyflo and Accolate (with Singular, there are no blood tests

> needed to monitor liver functions).

> >

> > I really think Zyflo helps only Samters people, a small minority.

> Abbott labs cares only about bottom line and Zyflo isn't a hot seller

> for them.

> >

> > I'm really upset and I don't know what I'm going to do. I will sign

> any petition. My allergist also recommended that all our doctors

> write to Abbott labs indicating that Zyflo helps us dramatically and

> nothing else will be able to replace it. Maybe then, Abbott will give

> the drug rights to some smaller company that will make it for us.

> >

> > Lori in Arizona

> > bad news

> >

> >

> > I just looked at the FDA's discontinued drug list, and Zyflo

is on it.

> > Apparently, they've discontinued it as of June, and it will be

> > available through wholesalers until december.

> >

> > This is the only drug that's had any major effect for me. I'm

really

> > not sure what to do, as I really don't want to go back to

polyps and

> > steroids. I need to see who else here is having good success

with the

> > drug, so I can consider setting up a petition.

> >

> >

> >