Hello

[Guest guest]

hey, yes and thank you .Have missed you, what have you been up to? How is your health?

Hello

I have not been around inawhile and wanted to say hello. Still surviving, hope you all are, did I read right? Are congrats in order?

[Guest guest]

Doing pretty good. Cold weather is painful to think about- I get cranky when my back spasms get to acting up. I am sorry about that... that is one thing I cannot hide no matter what and if I take my mucle relaxant I am out sleeping. As long as those stretches and walking and stuff are done I am better but I have not been very good about it lately. I left my plants out last night and the frost got them Thanks for the link to TN docs, I added my FP who has been unreal in helping me with my thyroid, although I have been gaining weight and stressed... that generic synthroid stinks. I see him again in week or so and will tell him about that link.

When is the little one due? ?That is wonderful news WE HAVE A LITTLE SUPPORT MASCOT!!!!JOSEPH PALANCA <juliejp61@...> wrote:

hey, yes and thank you .Have missed you, what have you been up to? How is your health?

Hello

I have not been around inawhile and wanted to say hello. Still surviving, hope you all are, did I read right? Are congrats in order?

[Guest guest]

Rhonda, Snythroid does! The worst treatment, in my own - is just a treatment of t4 alone. They are saying in the next decade ,all doctors will start to add this to the treatment regimen, as they should follow almost exactly the ratios of what our real thyroids produce, not just a small portion of it. Thyroid treatment is vastly outdated. Either ask if you can go on a mix of t3/t4, like armour, or add a t3 like cytomel to your t4 (synthroid) treatment. progesterone therapy helps the thyroid as well, as does coconut oil! I saw you are gaining weight (arg) have you ever tested your hormones by saliva? Love Hello

I have not been around inawhile and wanted to say hello. Still surviving, hope you all are, did I read right? Are congrats in order?

[Guest guest]

Hello Dear Friends:

I keep getting this meaaage every other day. Kathi would not do this to me!

Do any of you ladies know who is doing this. It started after I joined this group....help.

Much love...Lea

Re: Hello

[Guest guest]

-

Lea

I can't click on anything you posted below to see what you have been

getting. Can you tell us? And who is Kathi? It sure sounds like

something that has been upsetting you. Is it coming directly to

your email? Can you just hit the delete button? I hope you are

able to get it stopped soon.

hugs,

kathy

-- In , " Lea " <devans@c...> wrote:

> Hello Dear Friends:

>

> I keep getting this meaaage every other day. Kathi would not do

this to me!

> Do any of you ladies know who is doing this. It started after I

joined this group....help.

>

> Much love...Lea

> Re: Hello

>

>

>

[Guest guest]

Dear Lea, I believe I have some information about that attachment

Until I have a moment to look it up please do not open that document

I will be back in a few minutes, I am going to check with Norton to

identify it for sure. Survivor

, " Lea " <devans@c...> wrote:

> Hello Dear Friends:

>

> I keep getting this meaaage every other day. Kathi would not do

this to me!

> Do any of you ladies know who is doing this. It started after I

joined this group....help.

>

> Much love...Lea

> Re: Hello

>

>

>

[Guest guest]

Iris, that is so sweet about your new granddaughter! I know you are

so proud, and spoiling her rotten:)

Sorry to hear your in a flare, that is not good news, hope that goes

away soon. I'm taking the MTX pills, have never taken the injections,

so I can answer that one. That is a long wait until April:(

I will keep you, and the family in my prayers, and your flare goes

away soon, hugs T

> Hello everyone.

> I hope that a merry Christmas was to be had by all! I've been

absent due to flare-up of carpal

> tunnel, shoulder and neck pain. I was blessed this Nov. 1 to have a

new granddaughter. I am so

> proud of my daughter as she is turning out to be a wonderful

mother. She and her husband are

> totally in love with their little girl! (By the way, I am still

thinking of that cat when I say

> her name)

>

> My PCP has referred me to a new rheumy who can not see me until

April. In the meantime I am

> totally out of MTX injectable. Will I get the same relief from the

oral. If you guys would let me

> know your experiences, I would appreciate it.

>

> Happy New Year! Iris

>

> __________________________________________________

>

[Guest guest]

As I understand it, MTX effects are about the same with orals or injectables

until you reach about 1 cc. The only reason I switched from pills was the

expense, completely out of sight. It's about the same as my Prednesone. My

Rheumy wants me off of it, so wrote me a prescription for 1 mg pills. I get

100 ea 5 mg's for $7.78, and 100 ea 1 mg's for $23.90. That's obviously a

cheat of some kind.

Once I went to a new Rheumy for a second opinion, and he told me that most

of my problems weren't from RA because RA is ONLY in the joint and not any

place else! He was freshly graduated from Rheumy school, so he needs a lot

of seasoning.

We were invited to a family Christmas dinner, but I took a turn for the

worse, so the rest went and brought home a plate for me. That seems to

happen more often than I would like, but we just have to put up with it. I'm

more used to it than I should be, but I could be miserable at home alone

rather than make everyone else miserable there.

Dennis

[ ] Hello

>

> Hello everyone.

> I hope that a merry Christmas was to be had by all! I've been absent due

> to flare-up of carpal

> tunnel, shoulder and neck pain. I was blessed this Nov. 1 to have a new

> granddaughter. I am so

> proud of my daughter as she is turning out to be a wonderful mother. She

> and her husband are

> totally in love with their little girl! (By the way, I am still thinking

> of that cat when I say

> her name)

>

> My PCP has referred me to a new rheumy who can not see me until April. In

> the meantime I am

> totally out of MTX injectable. Will I get the same relief from the oral.

> If you guys would let me

> know your experiences, I would appreciate it.

>

> Happy New Year! Iris

[Guest guest]

Hello Iris--I'm so glad to see you back again!!

Congratulations on the new granddaughter--what's her name?

I had emailed you awhile back, but it " bounced " and was returned.

I've been thinking about you and wondering how you are. Email me if

you'd like to see new pictures of the triplets & big brother!

Blessings,

Judi

[Guest guest]

Hi ,

Yes, I think you're talking about costochondritis, which is inflammation of the

joints between the sternum and the ribs. And yes, it is very painful. One can

ease a lot of joint pain by immobilizing the affected joint, but you can't

immobilize these ones because you have to keep breathing - it's a bugger!

Painkillers help to a degree, but the best thing is if you can get the disease

process under control. Since taking Enbrel all this rib pain - and all the

others - has gone away for me.

n

[ ] Hello

It has been awhile...... Anyway I was wondering if

anyone gets pain in their sternum/ribs area. Mine is

killing me today, and it hurts to breath.

Thanks! Jess

[Guest guest]

Hi Kathie,

It's nice to see you here and get a recap of your story. It sounds

like you're doing great!

I was just wondering since your white count is on the low end, what

is your ANC usually? Also, do you know if your marrow is

hypocellular (you would see this on your BMB report). I would imagin

that it is since your counts are low.

I just had a BMB last week and it was hypocellular so I'm curious to

see how many others are in the same boat and if it's correlated to

the low counts. My reds are OK but my whites have been sliding for

the last few months.

Take care,

Tracey

dx Jan 2002

[Guest guest]

Hi Kathie,

In regards to your low counts and especially the Hgb that you're prodding upward

with Procrit:

I've been on and off Procrit since 2002 when I was on 800 mg IM. Then, last

September my Hgb tanked to 5.9 and my Hcrt to 18. I hadn't had Procrit for 3

months and, though I blame myself for this as well as the doc, hadn't had a

blood draw during that time either. I should have known better given my history

and so should have the doc. I no longer see her, btw.

Now, I'm with an excellent heme/onc and on 600 mg IM. I've had to have Procrit

-- sometimes the usual 40,000 units and other times 60,000 units. During this

time (last Nov.) we discovered that I was having internal bleeding and I had a

colonoscopy and a scope dropped down my throat, too. I had two stomach bleeds

and redness throughout the stomach and around the esophagus which everyone

assumed (there's that WORD) was caused by Gleevec. Today, my doc asked me to

take stool samples again to see if I'm bleeding again. The treatment for that

at this point has been to take a double dose of Prilosec daily (anti-acid

reflux) and three iron pills a day.Today my Hgb was 9.3 whereas it was over 12 a

month ago.

You might want to check to see if you have some internal bleeding since you say

your Hgb is steadily going downhill. It's worth a check. If I am bleeding

again, I'll report here what treatment I'm prescribed. It's silly to pump

Procrit in if it's just bleeding out.

Be well. Glad you're here.

Warmly,

L

[ ] Hello

Dear CML Brothers and Sisters:

I want to thank Amy for creating this group and I hope that it will

function as the old site did before all the problems which I didn't

follow and still don't understand. What I know is that most of the

people whose technical expertise I have come to trust and to value

are now putting their energies into this group and so I am happy to

be able to be a member and to contribute when I have something to add.

Let me reintroduce myself. I am a 55 year old happily married woman

who is a textbook author and was a college professor. I was

diagnosed with CML in Dec 03 when a routine CBC done as part of an

annual physical revealed a WBC of 78,000. I began taking Gleevec on

Dec. 26 of that year and thanks to the Internet I insisted on 800 mg

dosage as I had read that M.D. was now using that as the

standard dosage for all new CML patients (I now know that this dosage

is controversial, but it's working for me). I am blessed to have

experience very minor side effects except for losing my pigment and

having a HGB that continues to tank even with Arnesp shots at max

dosage. I have yet to need a transfusion, but there is definately a

slow downward trend. My WBC runs between 2.1 and 2.4. So because of

these counts I have routine CBC's every other week. At some point I

know that my dose may have to be lowered or I may have to take

a " Gleevec vacation " but I am thankful that I have been able to

tolerate the higher dose and I have been fortunate to have responded

well to the Gleevec on a molacular level and was delighted to be able

to apply to Zavie for a Zero Club number several months after

beginning treatment (#767). My most recent BMB was in January and my

PCR continues to improve, it is now at .0048. I have health

insurance through the university from which I retired which has been

excellent. I see Dr. Giles at M.D. on a consulting basis

(this is where my BMB is done) and am attended by two local hemo-

oncs, one in Florida where we are now residents, and one in Kentucky

where we have recently moved from but still maintain a residence so

we can visit our kids and grandkids.

I can't tell you how grateful I have been for the CML warriors who

have graciously answered my questions and let me learn through their

responses to others. I am so sad that the larger group is no longer

tenable, and I will do what I can to help to make this place a safe

haven of support for all of us who are currently fighting this

disease, and those unfortunate souls who will join our ranks.

I continue to beleive that CML will become a real CHRONIC disease

which is manageable with drugs and I continue to pray that this will

happen within all of our lifetime.

Sincerely,

Kathie in Kentucky

[Guest guest]

Welcome to the goup, Pat. You are a strong woman to have to deal

with this disease and take care of your husband. Sorry to hear

about the trouble Humira gave you. But, at least you have a

treatment that is helping you. Trust me, no one in here minds it if

you sign with hugs. Many of us do!!

We have been discussing the issue with fatigue, but no miracle cure

yet!! I hope we hear more from you...Take care...Marina

> Hello Everyone,

>

> My name is Pat and I am new to the list. I have been diagnosed for

> several years now and am presently being treated for my RA by

> being infused with Remicade every 8 weeks and taking low dose

> Methotrexate every week. So far I have had no ill effects from

> this treatment. After original diagnosis I began being treated with

> Humira. My joints never felt so good. However, after several months

> of injecting myself with this medicine I began having breathing

> problems and was so tired I didn't even care if I did breathe. I

> changed doctors and treatment and am grateful for the medication

> that I am receiving.

>

> I take care of my husband who became a paraplegic last November

> and I sometimes don't know if I will have the energy to do

everything

> for him that needs to be done every day and night. I am very tired

most

> of the time. I know having to get up 3 times during the night to

turn him

> isn't helping with the fatigue but it is something that has to be

done. I

> am wondering if there is anyone in this group that is taking

medication

> that helps with fatigue?

>

> Hope to get better acquainted with all of you and thanks for the

support.

>

> I always sign my mail with hugs, I hope you don't mind.

>

> Hugs,

> Pat

>

>

[Guest guest]

I really think that Enbrel helps me with fatigue. Sue

On Monday, April 11, 2005, at 09:58 PM, pathinze wrote:

> I know having to get up 3 times during the night to turn him

> isn't helping with the fatigue but it is something that has to be

> done. I

> am wondering if there is anyone in this group that is taking medication

> that helps with fatigue?

[Guest guest]

Hey ,

Your trip to Germany sounds great. I love the stories about your

daughter - congratulations on her reading!

Will you be coming to Montreal this summer, I hope we can meet up

agin if you do.

Congrats also on the new " ugly " home I am sure it will be quite

beautiful by the time you are finsihed with it.

Cheers,

Cheryl-Anne

>

> Hi all -

> Just a note so say 'hi'. I have been off-line for a long time -

went

> to Cologne Germany for business and have been utterly swamped ever

> since. Both at work and at home. Eight days was an eternity of time

> away from my daughter (age 3.5). She and my husband handled it just

> fine though. She is a trooper. And now she can actually read so I

was

> able to send her an e-mail each day, which she absolutely loved.

And

> for my first whole week home, she said every few hours " mom, I am

SO

> glad to have you back home! " Awwww...so sweet!

>

> My 4 month visit last with Dr. Schiffer was uneventful, the fish is

> still zero. He was happy to report that I am a boring patient.

(Never

> been called *that* before:-) At Karmanos, the trial patients are

> expected to start on the BMS and the AMN both some time this week.

> They are swamped there because of a sudden rise in transplantees,

did

> not get into why on that.

>

> On top of all that, we just bought a 'fixer-upper' on a whim, after

> just completing the 3-year rehab on our current home (We're home

> improvement junkies). So we have our work cut out for us. It is a

very

> ugly home but has great potential. And is on a beautiful lot in an

> area with the best school system, so our little smartie will have

lots

> of options.

>

> I missed you all during my time off-line!

>

> Prayers and warm thoughts,

> in MI

> dx 12/01

> 400mg 1/02

> CCR for 3 years

> PCRU since 9/02

[Guest guest]

Viki,

I'm glad to see you found us so quickly (I invited

Viki this afternoon)

A word of caution you about racking up a bunch of

diagnoses . . . They could come back to haunt you

should you need to get an individual insurance policy.

Very few medical professionals understand what we're

dealing with . . . Could you put off your appointment

for a week or so while the ladies here tell you about

their experience? There really isn't a test to

identify someone with implant related illnesses, or

" scientific " proof that the illnesses are implant

related. All you can do is get them out (properly) and

see if your symptoms fade away.

If you'll go the archive section (first link below)

and read the stories of women who participate here,

you'll begin to understand how much you have in common

with the other implanted womn! . . .

You can also follow the messages as women discover

implants are the cause of their health problems, find

a doctor, get explanted and begin their journey to

recovery.

Hugs and prayers!

Rogene

[Guest guest]

Dear Viki,

I too only had my saline implants a short time (almost 2 years), but

became suddenly extremely disabled by them. It took me 6 months of

battling with my doctors who told me that I was crazy to believe

that my implants where the cause. The Lord brought me to this

wonderful group of women who had similar symptoms and had either

recovered, or at least improved, after they had their implants

removed. Thousands of women are getting sick, but you don't hear

about them as much as I wish you would.

I had mine removed this last December, and am now completely

better. I even went running this weekend and it felt great!

Follow your heart and your instinct.

Bless you,

Tammy (a)

--- In , " vksegger " <vksegger@y...>

wrote:

> Thank you for inviting me here. I am going to an

> immunologist/infectious disease doctor tomorrow based on

an " unusually

> high " Epstein-Barr titer. I had my saline implants done on

> 29.Feb.2004. Starting in Feb. 2005, I was terribly

fatigued..couldn't

> get up after 10 hours of sleep. Then came " attacks " . My whole

body

> would flush, everything goes numb, and then I convulse. A nuclear

> cardio workup showed nothing. After that, a day in the ER with no

> ability to move my legs (felt like nerves were exposed), and just

sick

> sick sick. CAT scan of brain, normal. Both legs ultrasound,

normal.

> Full abdominal ultrasound, normal.

>

> This all began full force 8. May (Happy Mother's Day?)..I still

have

> days where I am unable to walk much, a short 2mile drive to school

has

> me lay down for hours. In reading many stories, I think maybe the

path

> to choose is explant. Thank you for your time.

> Viki

[Guest guest]

Dearest Viki:

I'm so sorry that you too have been damaged by these devices. There are many

wonderful women in this group who have been through what you have been

through. Just stay with us and we will all give you support.

There is an archive of information on this site and it will help you to make

a decision on being explanted.

Take care...love....Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`````````

Hello

> Thank you for inviting me here. I am going to an

> immunologist/infectious disease doctor tomorrow based on an " unusually

> high " Epstein-Barr titer. I had my saline implants done on

> 29.Feb.2004. Starting in Feb. 2005, I was terribly fatigued..couldn't

> get up after 10 hours of sleep. Then came " attacks " . My whole body

> would flush, everything goes numb, and then I convulse. A nuclear

> cardio workup showed nothing. After that, a day in the ER with no

> ability to move my legs (felt like nerves were exposed), and just sick

> sick sick. CAT scan of brain, normal. Both legs ultrasound, normal.

> Full abdominal ultrasound, normal.

>

> This all began full force 8. May (Happy Mother's Day?)..I still have

> days where I am unable to walk much, a short 2mile drive to school has

> me lay down for hours. In reading many stories, I think maybe the path

> to choose is explant. Thank you for your time.

> Viki

>

>

>

>

>

> Opinions expressed are NOT meant to take the place of advice given by

> licensed health care professionals. Consult your physician or licensed

> health care professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

> Find out what the facts are, and make your own decisions about how to live

> a happy life and how to work for a better world. " - Linus ing,

> two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

>

[Guest guest]

HI,

My name is toni. I had mine 5 years before my sister-in-lay saw the mtv special. All of the doctors I talked to about explant acted like I was completly nuts. I just smiled and acted like an idiot and contunued to say that i wanted them out. So because i insisted, they took them out as well as the capsule. I am about 95% better although some doctors wont admit that it could have been the implants making me sick in the first place. My internist sent a paper to the CDC about me. and has opened his mind to the fact that implants can make people sick. I still have some of the effects of having them in. It seems like my life has become a big game of "Stump the Doctor". The latest is the Sleep doctor. He said that he can't figure out why I don't go into REM sleep. My brain wakes up every 3 to 6 secconds. Welcome to the fun of implants.

I wish you luck in your decision and I hope that you are able to recover as well as I have. My little girl told her teacher that she had her mommy back.

If you decide to have them removed please expect to be treated like a loonie but it will be worth it.

toniToni Frampton toni_frampton@...

[Guest guest]

Toni,

Many of us who have had implants are left with a sleep

disorder (that leads to fibromyalgia), and most with a

thyroid disorder.

I've had my implants out 12 years and am still taking

a sleep med (Temazapam). I've been able to stop taking

thyroid medication though.

Something that can help with sleep and muscle pain is

supplementing with Magnesium . . . Take two parts

Calicum to one part magnesium. I really recommend the

Garden of Life Calcium product . . . best price I've

found is at www.appleadayandbeyond.com.

Hugs,

Rogene

[Guest guest]

I just wanted to share that I have been taking Enzymatic Therapy Revitalizing Sleep Formula and it is helping greatly with the sleep problem. (No hangover the next day either) I have tried I think every sleeping pill on the market and nothing has ever worked for me. In fact some of them kept me awake! One thing is for sure, we can't heal well unless we get proper sleep, whatever it takes. Love, Anita Re: Hello Toni,Many of us who have had implants are left with a sleepdisorder (that leads to fibromyalgia), and most with athyroid disorder. I've had my implants out 12 years and am still takinga sleep med (Temazapam). I've been able to stop takingthyroid medication though.Something that can help with sleep and muscle pain issupplementing with Magnesium . . Take two partsCalicum to one part magnesium. I really recommend theGarden of Life Calcium product . . . best price I'vefound is at www.appleadayandbeyond.com.Hugs,Rogene

[Guest guest]

Anita,

That is great news. Thank you so much for your tidbits of

information that are so helpful! You are absolutely right about the

sleep. It is so important. I am glad you found something that

finally worked well for you. Enzymatic Therapy is a good company.

I hope you are feeling better and better. And I am hoping your son

is doing better now too since you started up with the IV's again.

Please keep me updated! I want to get together with you very

much...I am just having a terrible time fitting things into my

schedule. Please keep me posted!

Love,

Patty

> I just wanted to share that I have been taking Enzymatic Therapy

Revitalizing Sleep Formula and it is helping greatly with the sleep

problem. (No hangover the next day either) I have tried I think

every sleeping pill on the market and nothing has ever worked for

me. In fact some of them kept me awake! One thing is for sure, we

can't heal well unless we get proper sleep, whatever it takes.

Love, Anita

>

> Re: Hello

>

> Toni,

>

> Many of us who have had implants are left with a sleep

> disorder (that leads to fibromyalgia), and most with a

> thyroid disorder.

>

> I've had my implants out 12 years and am still taking

> a sleep med (Temazapam). I've been able to stop taking

> thyroid medication though.

>

> Something that can help with sleep and muscle pain is

> supplementing with Magnesium . . . Take two parts

> Calicum to one part magnesium. I really recommend the

> Garden of Life Calcium product . . . best price I've

> found is at www.appleadayandbeyond.com.

>

> Hugs,

>

> Rogene

>

>

>

[Guest guest]

Hi Patty, When are you leaving and how long will you be gone? I will be praying for you. We'll get together when you get home. Love, Anita Re: Hello> > Toni,> > Many of us who have had implants are left with a sleep> disorder (that leads to fibromyalgia), and most with a> thyroid disorder. > > I've had my implants out 12 years and am still taking> a sleep med (Temazapam). I've been able to stop taking> thyroid medication though.> > Something that can help with sleep and muscle pain is> supplementing with Magnesium . . . Take two parts> Calicum to one part magnesium. I really recommend the> Garden of Life Calcium product . . . best price I've> found is at www.appleadayandbeyond.com.> > Hugs,> > Rogene> > >

[Guest guest]

Hi ,

There are lots of options out there now compared to just a couple of years ago.

One of them is the allograft. I can at least refer you to another website in

the UK where a woman has written about her experience with a mini allograft.

She's doing quite well. It would give you first hand information. Go to

www.cmlsupport.org and scroll down the first page and look on the left for

" Sandy's diary of her mini allograft. Since the UK people I talk with use some

different terminology than we do I'm not entirely sure if this is the same thing

as an autlogenous transplant but I think it is.

I'm sure others on this site will chime in with other information. There is the

BMS trial and AMN107 trial as well as at least one vaccine trial I know of.

There are people who can speak to unrelated donor transplants, too.

Best luck,

L

[ ] Hello

Hello everyone,

I'm new to the group and even though you all seem

wonderful i wish i wasn't a part of it. My husband was diagnosed with

cml March'04 when he began to have pains in his left side. Misdiagnosed

with kidney stones for 2 wks. till a cat scan revealed a hugh

spleen .Wbc was 150k and peaked at 250k before it began to subside. He

started on Hydrea and Gleevec(400mg)immediately. He achieved remission

in about 6 months. We have been to Vanderbilt several times and talked

to Dr. Jagasia. He was very helpful in explaining things to us. My

husbands siblings are not a match for a transplant but they are

searching the registry. We are not sure if this is what we want to do

but it is nice to know your options. Karl is in cytogenic remission per

last bone marrow aspiration and is not doing too awful bad with side

effects. Dr. Jagasia has mentioned an autologenous transplant. Do any

of you know or have experience of this ?

God Bless,

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

[Guest guest]

Welcome to the group Loretta. I hope you like it here. We have a lot

of great people here and we all have so much in common.

I understand the unrelenting pain and having to take so many meds. But

at least they help.

a

On Jun 27, 2005, at 4:52 PM, teaforeight wrote:

> I have just joined this group and I am looking forward to getting to

> know you all.  I have an autoimmune disease andFibromyalgia and also

> migrains. I am on alot of meds for pain and to control the migrains. I

> get so tired and hurt and it never seems to end.  I am sure you all

> know what this is like. Loretta

>

>

>

>

>

>

>

>