Donna

[Guest guest]

Congradulations Kathy! . . . You've worked hard to get to this point! . . . I know it feels good to be tired from a days work, rather than being sick! I'm thrilled to hear you're doing so much better! I don't know how to change the settings for email . . . You might try switching to the Daily Digest option - that will make scanning and reading faster . . . Maybe Help desk could tell you what to do! Hugs, Rogene

[Guest guest]

Congradulations Kathy! . . . You've worked hard to get to this point! . . . I know it feels good to be tired from a days work, rather than being sick! I'm thrilled to hear you're doing so much better! I don't know how to change the settings for email . . . You might try switching to the Daily Digest option - that will make scanning and reading faster . . . Maybe Help desk could tell you what to do! Hugs, Rogene

[Guest guest]

Congradulations Kathy! . . . You've worked hard to get to this point! . . . I know it feels good to be tired from a days work, rather than being sick! I'm thrilled to hear you're doing so much better! I don't know how to change the settings for email . . . You might try switching to the Daily Digest option - that will make scanning and reading faster . . . Maybe Help desk could tell you what to do! Hugs, Rogene

[Guest guest]

Congradulations Kathy! . . . You've worked hard to get to this point! . . . I know it feels good to be tired from a days work, rather than being sick! I'm thrilled to hear you're doing so much better! I don't know how to change the settings for email . . . You might try switching to the Daily Digest option - that will make scanning and reading faster . . . Maybe Help desk could tell you what to do! Hugs, Rogene

[Guest guest]

Donna,

I printed off a packet of some of the responses on this board and a lot of the material from Dr. Kolb. She works all day so I just placed it at her door step. I also invited her into the group. So the rest is up to her. But I am praying that she will change her mind.

Penni

Re: Donna

Penni,

Let's work on that neighbor of yours Let's pray she don't do this implant catastrophe. Her poor children and husband will suffer.

Donna

[Guest guest]

Penni,

That is wonderful for you do. It is all you can do. In the very

least...you have tried and that is what matters.

>

> Donna,

>

> I printed off a packet of some of the responses on this board and

a lot of the material from Dr. Kolb. She works all day so I just

placed it at her door step. I also invited her into the group. So

the rest is up to her. But I am praying that she will change her

mind.

>

> Penni

> Re: Donna

>

>

>

> Penni,

>

> Let's work on that neighbor of yours Let's pray she don't do

this implant catastrophe. Her poor children and husband will suffer.

>

> Donna

>

[Guest guest]

Thanks Rogene

I will give it a try. I really hate trying to fix computer problems!

Hugs, Kathy

>

> Congradulations Kathy! . . .

>

> You've worked hard to get to this point! . . . I know it feels

good to be tired from a days work, rather than being sick! I'm

thrilled to hear you're doing so much better!

>

> I don't know how to change the settings for email . . . You

might try switching to the Daily Digest option - that will make

scanning and reading faster . . .

>

> Maybe Help desk could tell you what to do!

>

> Hugs,

>

> Rogene

>

[Guest guest]

Penni,

That is all you can do. Hope it works!!! Keep me posted about her.

Hugs,

Donna

[Guest guest]

Donna,

Thanks I will. Tom asked about you this morning. I told him you were doing good.

Penni

Re: Re: Donna

Penni,

That is all you can do. Hope it works!!! Keep me posted about her.

Hugs,

Donna

[Guest guest]

'Rogene,

Thank You so much for the advice.

Donna

[Guest guest]

Donna,

FYI. I don't exactly follow Dr. Kolb's diet. I was on the Maker's Diet before surgery and it really helped me so I continue to eat that way now.

Penni

Donna

Donna,

Are you following Dr. Kolb's recommended diet? . . . I know some women who did better after stopping her diet and going with The Maker's Diet.

Some diets are very stressful in themselves . . . Stress will counteract everything else you're trying to do -

Right now, you sound very stressed.

Take it one day, one thing at a time . . . It won't happen overnight, but eventually you will get your life back!

Hugs and prayers,

Rogene

[Guest guest]

I think I will try the maker diet, but how to find that?????? I tell you those implants are just killing me over here slowly. I feel like I am getting dizzy and blurred vision really bad lately. The numbness and tingling in my hands are horrible and this fatigue. I can still taste, those nasty implants even after 2 months post explant. It is a horrible dry taste in my mouth. I wonder if I am allergic to my contacts now? My eyes are so dry. I do need the diet and detox really bad. The muscle twitches drive me crazy. It is hard to even believe implants could be so deadly. Then people tell you oh no there so "safe" it's like whatever. I am living proof implants can make you sicker than sick. This is even hard to believe this is happening to me. I guess hard to live with so hard to believe. If you can let me know how to find the makers diet.. I appreciate you all letting me vent. I guess this whole mess hit me too fast and all at once and hard to live sick everyday. God Bless You All....

Big Hugs,

Donna

[Guest guest]

Rogene,

Thank You I need something just have not felt good at all lately. I talked to Dr. Kolb and we are going to try something else so hope it helps too. I will check out the maker diet for sure, it can't hurt that's for sure. Thanks again.

Hugs,

Donna

[Guest guest]

Donna . . . You can find "The Maker's Diet" or "The Great Physician's RX" . . .and the supplements Rubin recommends on www.appleadayandbeyond.com or on www.iherb.com - A little harder search there . . . Or you can probably find it on amazon.com . . . One of our ladies recently bought it for about two bucks. You'll be amazed at how much better you can feel when you get on a healthy diet. Hugs, Rogene

[Guest guest]

Donna, Just keep trying . . . I wish it was as easy as being able to tell someone "do this or that" but it's not . . . The reason women get sick varies, and what it takes to get better varies. . . If only the medical professions would study the women who are sick and find out why, and learn how to treat them! . . . Until then, it's try this, and try that . . . sooner or later, you'll find the key to the door and begin seeing more progress. I can't emphasize how important diet is. .That's one thing that never varies! . . You can't make a living thing out of rock or steel . . . yet we feed our bodies things that are just as empty in nutrients and expect it to stay healthy . . . Hugs, Rogene

[Guest guest]

My breast looked fine too. They were soft and the whole thing. The right one was slightly higher than the left. Dr. Kolb sayed it had infection and capsular contracture when I went to see her. I was falling apart quickly with my implants and I also had two kids to care for, they really don't understand when you are just sick. Do you get the low grade fever? I did everyday like clock work around dark. I also would bounce off the walls sometimes, brain fog, memory loss. I had irretable bowel syndrome, started my period faithfully every other week. I also had this right neck pain, all the way into my arm. Sharp pains would come and go through my breast but not that often. It was really hard to see with the naked eye, this is why I probably believed my PS when he said, No connection. The problem with mine was that they were leaking a slow leak, yet it won't deflate them it is a directional flow back and forth. If you feel poisoned then you probably are that is how I felt and I could taste the bio-toxin. Looking back on it all It is just common sense to me, I should have figured it out earlier, but hard when so many blame everyday stress, etc. for the whole problem. I just finally had to follow my own gut instincts. You could spit in a glass of water, let sit for about 30 minutes if strings are floating down, then yeast. I have bio-toxin disease from mold, systemic illness and A typical connective tissue disease from my saline implants, I only had for one year and 3 months. I was so healthy prior to implants, so when they start that there is no connection I will not listen to that. I know first hand that these implants can be defective when they are inserted, most PS don't know (or won't tell you) how to even detect it. If some days you feel better than others, that is probably when they are not leaking. This happened to me sometimes, I would have good days then horrible months. Dr. Kolb says, good days is when they are not leaking, bad days there leaking. When she did my explant, by the grace of God that week I was having good days, 3 to be exact. When she operated there was a big piece of my own body fat plugging the port to stop it from leaking and there was tons of gross stuff floating in both implants. The valves are very common to be defective and leak. I figured this might help you figure out more about your situation. Dr. Kolb did a donut lift on me when she removed my implants and I am totally happy with her work, she saved my life and does worry about what we look like after surgery as well. I would not let anyone tell you that you are crazy any longer, you can e-mail Dr. Kolb and she will return your questions. www.plastikos.com She does specialize in saline implants and knows that they are making tons of woman sick daily. She truly cares for her patients and stuff regular PS don't see, she can see with a naked eye. I know she told me everything that was wrong with my by just looking at me, then 2 days later she removed them and it was all true facts at that point. Good luck and if any further questions please write back and stay in touch. You really need to get these out of you before you are poisoned any further. Good Luck and God Bless!!!!!!!!!!!!!!!!

Donna

[Guest guest]

I had so many signs before implants and did it anyway. However, it is beside the point and the past. The low grade fever is just a feeling of having a fever, not burning up or anything you just feel feverish. I had that from Aug til May when I got them removed it has not happened one time since, so no connections right? I know for a fact that the support sites saved my life and just in time. I was going down quick, I would sleep OMG forever and wake up and 10 minutes later be yawning. I felt the worms crawling under my skin in different areas, burning feet, tingeling in hand and feet and joint burning and pain. Neck pain OMG it was horrid. I had 33 symptoms total so I have not listed them all. IF you have any questions regarding anything you feel please ask, you are not crazy and follow your gut. Go to a specialist and don't get messed around, it is worth the money and effort of traveling. I traveled for 8 hours to go see Dr. Kolb and she no doubt saved my life, I really believe that if I had went any longer I would not be here right now. I have noticed a big difference since removal, I still am dealing with some issues but I am only 7 months explant. Night and Day already. Sometimes you will be walking and just hit the corner of the wall, vertigo. I would take a shower and notice this mysterious rash felt heated and about 5 or 6 inches round would just appear for no reason. It was hard to balance myself and taking a shower was a task. Dizziness was a problem, along with breathing and sometimes heart palpatations, like a really bad anxiety attach. You feel like your alone in your mind and hard to get out the shell. If someone opens a pop can your ears are like bionic ears and can't stand loud noises. It is by far the hardest thing I ever had to go through. Thank God my boyfriend had decent credit and got a loan so I could go to Dr. Kolb, I found this site and scheduled surgery. I went 3 weeks later for removal and don't regret it. I was not looking back and Thank God everyday for my decision Since I know he led me to that surgeon. Good Luck and May God send you were you need to go so your health will return for your precious children and family. God Bless!!!!!!!!!!!!!!!!!!1

Donna

[Guest guest]

Thanks for the very helpful post to me. I do have a lot of the same

things you describe, some okay days, never great, and then bad days

(in a row?). I have even had some extremely bad days where I was so

passed out it was scary. Haven't even had time to check my temp,

most of the time I feel too lousy to even put ketchup on my fries

(that is a joke LOL)! I do feel poisoned, that is just a good

description, and I just found this board and feel like it sort of

saved my life. I hit a very low point last week with feeling like I

must be crazy to have this mysterious illness, but if all these

people have similar stories then I know that I am not losing it. I

am going to check into your doctor. I am realizing that I have to

do what is best and not go against my instincts this time (you know

I had terrible nightmares before getting implants, should have

listened!). Thanks again for your time in answering, really helpful!

- , BSBanshee1@... wrote:

>

> My breast looked fine too. They were soft and the whole thing.

The right

> one was slightly higher than the left. Dr. Kolb sayed it had

infection and

> capsular contracture when I went to see her. I was falling apart

quickly with my

> implants and I also had two kids to care for, they really don't

understand

> when you are just sick. Do you get the low grade fever? I did

everyday like

> clock work around dark. I also would bounce off the walls

sometimes, brain fog,

> memory loss. I had irretable bowel syndrome, started my period

faithfully

> every other week. I also had this right neck pain, all the way

into my arm.

> Sharp pains would come and go through my breast but not that

often. It was really

> hard to see with the naked eye, this is why I probably believed my

PS when he

> said, No connection. The problem with mine was that they were

leaking a slow

> leak, yet it won't deflate them it is a directional flow back and

forth. If

> you feel poisoned then you probably are that is how I felt and I

could taste

> the bio-toxin. Looking back on it all It is just common sense to

me, I should

> have figured it out earlier, but hard when so many blame everyday

stress, etc.

> for the whole problem. I just finally had to follow my own gut

instincts.

> You could spit in a glass of water, let sit for about 30 minutes

if strings are

> floating down, then yeast. I have bio-toxin disease from mold,

systemic

> illness and A typical connective tissue disease from my saline

implants, I only

> had for one year and 3 months. I was so healthy prior to

implants, so when they

> start that there is no connection I will not listen to that. I

know first

> hand that these implants can be defective when they are inserted,

most PS don't

> know (or won't tell you) how to even detect it. If some days you

feel better

> than others, that is probably when they are not leaking. This

happened to me

> sometimes, I would have good days then horrible months. Dr. Kolb

says, good

> days is when they are not leaking, bad days there leaking. When

she did my

> explant, by the grace of God that week I was having good days, 3

to be exact.

> When she operated there was a big piece of my own body fat

plugging the port to

> stop it from leaking and there was tons of gross stuff floating in

both

> implants. The valves are very common to be defective and leak. I

figured this might

> help you figure out more about your situation. Dr. Kolb did a

donut lift on

> me when she removed my implants and I am totally happy with her

work, she

> saved my life and does worry about what we look like after surgery

as well. I

> would not let anyone tell you that you are crazy any longer, you

can e-mail Dr.

> Kolb and she will return your questions. _www.plastikos.com_

> (http://www.plastikos.com) She does specialize in saline

implants and knows that they are

> making tons of woman sick daily. She truly cares for her patients

and stuff

> regular PS don't see, she can see with a naked eye. I know she

told me

> everything that was wrong with my by just looking at me, then 2

days later she removed

> them and it was all true facts at that point. Good luck and if

any further

> questions please write back and stay in touch. You really need to

get these out

> of you before you are poisoned any further. Good Luck and God

> Bless!!!!!!!!!!!!!!!!

>

> Donna

>

[Guest guest]

I am 15 years with saline implants and have felt pretty good; however, I have noticed some tenderness around my breasts - sometimes aching for no reason. I also have increased joint pain and lack of energy. For the most part, I am extremely healthy and very rarely get sick with anything, but I am beginning to suspect the implants are the cause of the above symptoms, and I am beginning to question if they are breaking down and I am somewhat septic.

Could you please give me the name, phone # and location of the Dr. Kolb people are referring to? Does she give phone consults? Ballpark, what is the cost of explant?

Thank you so much,

Sharon

[Guest guest]

Donna,

Thank you for your prompt reply and the information re Dr. Kolb. I will contact her.

God bless you and Happy New Year,

Sharon

[Guest guest]

Hi Sharon,

I am sure that Dr. Kolb will be glad to help you over the phone and she also is very good about emailing quickly.

Her contact info is as follows:

Dr. Kolb P/S

Plastikos

4370 town Square

Atlanta, GA 30338

(770)457-4677 WEB SITE. www.plastikos.com E-mail: drkolb@... Dr. Kolb has a clinic for treatment to help with your recovery after explant, including a neurologist and several other physicians.

Patty

Re: Re: Donna

I am 15 years with saline implants and have felt pretty good; however, I have noticed some tenderness around my breasts - sometimes aching for no reason. I also have increased joint pain and lack of energy. For the most part, I am extremely healthy and very rarely get sick with anything, but I am beginning to suspect the implants are the cause of the above symptoms, and I am beginning to question if they are breaking down and I am somewhat septic.

Could you please give me the name, phone # and location of the Dr. Kolb people are referring to? Does she give phone consults? Ballpark, what is the cost of explant?

Thank you so much,

Sharon

__________________________________________________

[Guest guest]

-Dear Friends,

Thanks for all your input I am in a panic now to say the least

My Onc at Pensacola had advised me that the " standard of care " was to

be tested every year and he thot that Cortes was wanting to test me

every 3 mos as part of a clinical trial. Which is all well and good

but I am 10 hrs from Houston and have 4 children and that trip is not

much fun. What I am really confused about is why Cortes never really

made a suggestion for my course of treatment after he received the

results of tests at MD , I only got a fumbled comment from

the Pensacola Onc that he presumed Cortes had put my weird

mutations " on the shelf " and to carry on with the standard of care

course.

Looking back over my results a Ault (DR> Cortes) side kick notes

in them that the mutations are due to clonal evolution and can be

kept in check with medication.

Anyway after considering your sound advice (which I value far more

than the Pen Onc (who incidentally has now resigned???)

I am going back to my newly assigned Onc in Pensacola next friday and

ask him what my course of action should be. I will also e=mail

Cortes and ask him what he thinks. Don't ask me why I havent worried

about all this til yesterday Call me an Ostrich.

One question though. If it is possible to start going into blast

phase in the short span of 2 weeks why dont we have our cbc's checked

more often. I reached CCR so am only monitored every 3 mos. It

scares me to think everything can go wrong so quickly.

I am so grateful to you all.

Regards Donna x-- In , " marri35 " <tmtip@...>

wrote:

>

> I totally agree... I think your cents are worth so much more... By

> pure necessity sometimes we 'figure' things out! Just imagine if

> everyone were put on those much smaller doses... GET me a

> calculator.. that wouldn't be in the drug company's best interest I

> suspect. Just a thought... maybe I'm way off base. I have " self

> adjusted " my doses of Sprycel..unfortunately... had great

difficulty

> finding decent care etc. and had horrible side effects. STill

early.

> Trying to get into CML guru eventually (no ins).

>

>

> >

> > Hey Group. . .

> > I have said this before and I will say it again. . .

> > " We are a Statistic to the Hematologist/Oncologist; but each

one

> of us is an Individual in our Survival and the choice(s) we make on

> our treatment is the most important decision we will make during

our

> lifetime " .

> > Due to 'side effects', I was unable to tolerate 400 or 600 m.g.

> of our gold on a daily basis; therefore, my daily dosage was 300

m.g.

> After reaching 0.00136 in 1/2005; I began to 'pulse'.

> > My reasoning was 'if it took 300 m.g. to reach '0'; I didn't

need

> that dosage daily to maintain my response'. My RT-PCR Test was

> 0.00021 on February 13th and I take 300 m.g.~~3 - 4 days a week and

> my side effects are greatly diminished from the H**L I went through

> after diagnosis.

> > " I am not a Doctor, never portrayed one on TV; nor do I aspire

to

> be a Physician in another life " . This is FYI~~my 2 cents only.

> > Take care, as always I have ALL in my prayers. . . " K "

> >

> >

> >

> > " K "

> > " I AIN'T FINISHED YET " !!!

> >

> >

> >

> >

[Guest guest]

Hi Donna,

Your post triggered quite a flow of responses but I don't think there

is a reason to panic. First you have to keep in mind none of us knows

the details of your tests or treatment and most (if not all the facts)

come from your drs. The decisions are still yours and chatting with

fellows cmlers may help sorting things out, but we certainly do not

replace your drs advices. Each case is different and the fact that you

had extra mutations on one test doesn't mean the cml is going to get

out of hand. Dr Cortes is one of the leading experts on cml, I don't

know him personally so I don't know how he communicates with his

patients. Sometime you have to insist a little with the drs to get

them to explain things. The article I posted about yesterday is

cosigned by Cortes, and it states that mutations in one test are often

not easy to interpret and can lead to overreacting. There have been a

few cases of people going from chronic phase to blast without warning

but it is very rare. Also do not hesitate discussing practical matters

with your oncologist and with Cortes, it may be possible to have the

BMB closer to home, I had samples shipped from California to France.

Ask him if you can correspond with him by email.

Marcos.

On Thu, Feb 21, 2008 at 2:49 PM, donnaberry99 <no_reply > wrote:

>

>

>

>

> -Dear Friends,

> Thanks for all your input I am in a panic now to say the least

> My Onc at Pensacola had advised me that the " standard of care " was to

> be tested every year and he thot that Cortes was wanting to test me

> every 3 mos as part of a clinical trial. Which is all well and good

> but I am 10 hrs from Houston and have 4 children and that trip is not

> much fun. What I am really confused about is why Cortes never really

> made a suggestion for my course of treatment after he received the

> results of tests at MD , I only got a fumbled comment from

> the Pensacola Onc that he presumed Cortes had put my weird

> mutations " on the shelf " and to carry on with the standard of care

> course.

> Looking back over my results a Ault (DR> Cortes) side kick notes

> in them that the mutations are due to clonal evolution and can be

> kept in check with medication.

> Anyway after considering your sound advice (which I value far more

> than the Pen Onc (who incidentally has now resigned???)

> I am going back to my newly assigned Onc in Pensacola next friday and

> ask him what my course of action should be. I will also e=mail

> Cortes and ask him what he thinks. Don't ask me why I havent worried

> about all this til yesterday Call me an Ostrich.

> One question though. If it is possible to start going into blast

> phase in the short span of 2 weeks why dont we have our cbc's checked

> more often. I reached CCR so am only monitored every 3 mos. It

> scares me to think everything can go wrong so quickly.

> I am so grateful to you all.

> Regards Donna x-- In , " marri35 " <tmtip@...>

> wrote:

> >

> > I totally agree... I think your cents are worth so much more... By

> > pure necessity sometimes we 'figure' things out! Just imagine if

> > everyone were put on those much smaller doses... GET me a

> > calculator.. that wouldn't be in the drug company's best interest I

> > suspect. Just a thought... maybe I'm way off base. I have " self

> > adjusted " my doses of Sprycel..unfortunately... had great

> difficulty

> > finding decent care etc. and had horrible side effects. STill

> early.

> > Trying to get into CML guru eventually (no ins).

> >

> >

> > >

> > > Hey Group. . .

> > > I have said this before and I will say it again. . .

> > > " We are a Statistic to the Hematologist/Oncologist; but each

> one

> > of us is an Individual in our Survival and the choice(s) we make on

> > our treatment is the most important decision we will make during

> our

> > lifetime " .

> > > Due to 'side effects', I was unable to tolerate 400 or 600 m.g.

> > of our gold on a daily basis; therefore, my daily dosage was 300

> m.g.

> > After reaching 0.00136 in 1/2005; I began to 'pulse'.

> > > My reasoning was 'if it took 300 m.g. to reach '0'; I didn't

> need

> > that dosage daily to maintain my response'. My RT-PCR Test was

> > 0.00021 on February 13th and I take 300 m.g.~~3 - 4 days a week and

> > my side effects are greatly diminished from the H**L I went through

> > after diagnosis.

> > > " I am not a Doctor, never portrayed one on TV; nor do I aspire

> to

> > be a Physician in another life " . This is FYI~~my 2 cents only.

> > > Take care, as always I have ALL in my prayers. . . " K "

> > >

> > >

> > >

> > > " K "

> > > " I AIN'T FINISHED YET " !!!

> > >

> > >

> > >

> > >

[Guest guest]

Donna, please don't panic. None of us intended to cause panic with

our responses we just wanted you to be aware of what the risks were

by not considering your unique situation.

There's every reason to believe that you will be fine with Gleevec

for many years to come BUT because your situation isn't " garden

variety " , you do need to keep a closer eye on things. This doesn't

mean that you'll definitely run into problems, it just means that you

need to be informed and monitored carefully.

The first two years are when you have the most likelihood of running

into problems so this is the time when you really need to be

monitored closely with fairly regular BMB's and other blood tests. To

tell you the truth, everyone should be watched carefully in these

first years, regardless of their situation.

Keep in mind too, that the number of people who do run into problems

during those first years is still a very small number of people so

don't panic, but at the same time, don't be complacent about your

situation.

Tracey

> > >

> > > Hey Group. . .

> > > I have said this before and I will say it again. . .

> > > " We are a Statistic to the Hematologist/Oncologist; but each

> one

> > of us is an Individual in our Survival and the choice(s) we make

on

> > our treatment is the most important decision we will make during

> our

> > lifetime " .

> > > Due to 'side effects', I was unable to tolerate 400 or 600

m.g.

> > of our gold on a daily basis; therefore, my daily dosage was 300

> m.g.

> > After reaching 0.00136 in 1/2005; I began to 'pulse'.

> > > My reasoning was 'if it took 300 m.g. to reach '0'; I didn't

> need

> > that dosage daily to maintain my response'. My RT-PCR Test was

> > 0.00021 on February 13th and I take 300 m.g.~~3 - 4 days a week

and

> > my side effects are greatly diminished from the H**L I went

through

> > after diagnosis.

> > > " I am not a Doctor, never portrayed one on TV; nor do I

aspire

> to

> > be a Physician in another life " . This is FYI~~my 2 cents only.

> > > Take care, as always I have ALL in my prayers. . . " K "

> > >

> > >

> > >

> > > " K "

> > > " I AIN'T FINISHED YET " !!!

> > >

> > >

> > >

> > >