Introduction

[Guest guest]

Hi Nikki--I have had CML for almost 2 years--I am 53 and currently on

Gleevec (the only drug I have taken) at 600 mg per day. I want to

avoid bone marrow transplant, or stem cell transplant--even though I

live in Seattle where the Fred Hutchinson Cancer Research Center

pioneered the bone marrow transplant, where they have the best success

rates in the World--I don't want it unless it is the absolute last

resort and that is because the mortality rates for BMT are so much

higher than for taking medication like Gleevec. If the Gleevec is

working for your fiance, then don't mess with it. We don't know how

long it will work the way it does--maybe forever--and if it doesn't

there are other drugs that may work too. So my feeling is that I would

personally avoid the BMT if at all possible, unless it is the last

resort. Of course, I suppose if you had the bone marrow transplant and

it didn't work, you could go back on the drug, like Gleevec again, but

it would seem like an awful lot of misery to go through to have

something not work. If you are considering bone marrow transplant, or

your boyfriend is, have his doctor give him the numbers (the odds of it

failing or succeeding in his situation, the mortality rates, etc), and

read up in the published literature (available online) about the

results demonstrated in studies. You should be able to get a much

clearer picture of what the benefits and risks are of bmt versus

gleevec. Above all, don't rely on what I or anybody else says--listen

to your doctor and read the published information from the top

scientific research institutions--see what the consensus is.

Good luck and welcome to the group,

Vicki

>

> Good Morning my name is Nikki and I joined the group to find out more

> about CML. My fiancé was diagnosed last year and I want to be a

support

> to him and assist him in finding out more about it. He has been told

> that a BMT is really the only way to 'cure' CML... I was curious

about

> other thoughts on this and the experiences of anyone who has had a

non-

> related BMT. He is currently on Gleevac, not sure of the doasage (I

> will ask him)and he is doing pretty good. But I am fearful of him

> having a BMT. Please help!! Thanks!

>

> NPC

>

[Guest guest]

Hi everyone,

I have been browsing this site for a couple of months now, and felt

it was time I said HELLO and introduced myself...you all seem such a

nice group with a great sense of humour.... Lottie you are an

inspiration.

My name is Sheryl, I am 59 years old and live in Australia, I have 3

wonderful & supportive sons , 3 wonderful daughters in law, 2

grandsons ages 7 & 4 and 2 more grandchildren on the way in late

September.

I was diagnosed with Chronic Stage CML in October 2005,( 16 months

after I lost my husband from a Brain Tumor). Life seemed pretty

unfair at this stage, especially for my boys and their families.

I had been feeling unwell for a few months, mainly back and leg

pain. I had a CT scan of my spine-and was dx with 3 bulging discs

and moderate stenosis, understandably all my aches and pains were

put down to this, after about 4 months of continued pain and then

other issues - rapid pulse, night sweats etc. etc, I was given a

blood test for possible Anaemia !!!!!. GP called, and I ended up in

hospital immediately having blood transfusions.... My WBC was 598,

(my onc/haem. said it was the second highest white count he had seen)

RBC 70, most other bloods were abnormal and my spleen was rather

enlarged. My Dr. thought I may have been in accelerated stage, but

BMB proved otherwise, .... I reckon I would have been late Chronic

stage though. I was given 2000mg hydrea daily until I was put onto

400mg glivec, then it was increased to 600mg. Luckily I responded

extremely well to glivec with minimal side effects, puffy eyelids

and eyebleeds are the worst side effect I have. I have not got all

my readings, I was just pleased to hear I was going great,......

first CCR.. then MMR....and now in March this year... PCRU !!!! my

lastest PCR test 3 weeks ago is still showing PCRU........I never

thought I would get there especially considering how unwell I was in

the beginning.

Thanks to support groups like this, I am feeling far more positive

for the future, so much info. and SUPPORT.

Take care

Sheryl

[Guest guest]

welcome sheryl so glad you're doing well it's such a scary time when you're

diognosed and to know you are pcru is such a confort stay well

aliza yaffa

rochester n.y.

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

-

hi Sheryl, sorry you had to find us,and sorry for the loss of your

husband , you have been thru so much as many people on this sight

have been,all i can say is these people here are so wonderful and so

knowledgable, any questions or fears just ask and someone will know

the answer tell your children you will be just fine [cause you will

be].

Esther

-- In , " shez27@... " <shez27@...> wrote:

>

> Hi everyone,

>

> I have been browsing this site for a couple of months now, and felt

> it was time I said HELLO and introduced myself...you all seem such

a

> nice group with a great sense of humour.... Lottie you are an

> inspiration.

>

> My name is Sheryl, I am 59 years old and live in Australia, I have

3

> wonderful & supportive sons , 3 wonderful daughters in law, 2

> grandsons ages 7 & 4 and 2 more grandchildren on the way in late

> September.

>

> I was diagnosed with Chronic Stage CML in October 2005,( 16 months

> after I lost my husband from a Brain Tumor). Life seemed pretty

> unfair at this stage, especially for my boys and their families.

> I had been feeling unwell for a few months, mainly back and leg

> pain. I had a CT scan of my spine-and was dx with 3 bulging discs

> and moderate stenosis, understandably all my aches and pains were

> put down to this, after about 4 months of continued pain and then

> other issues - rapid pulse, night sweats etc. etc, I was given a

> blood test for possible Anaemia !!!!!. GP called, and I ended up in

> hospital immediately having blood transfusions.... My WBC was 598,

> (my onc/haem. said it was the second highest white count he had

seen)

> RBC 70, most other bloods were abnormal and my spleen was rather

> enlarged. My Dr. thought I may have been in accelerated stage, but

> BMB proved otherwise, .... I reckon I would have been late Chronic

> stage though. I was given 2000mg hydrea daily until I was put onto

> 400mg glivec, then it was increased to 600mg. Luckily I responded

> extremely well to glivec with minimal side effects, puffy eyelids

> and eyebleeds are the worst side effect I have. I have not got

all

> my readings, I was just pleased to hear I was going great,......

> first CCR.. then MMR....and now in March this year... PCRU !!!! my

> lastest PCR test 3 weeks ago is still showing PCRU........I never

> thought I would get there especially considering how unwell I was

in

> the beginning.

> Thanks to support groups like this, I am feeling far more positive

> for the future, so much info. and SUPPORT.

>

> Take care

> Sheryl

>

[Guest guest]

HI SHERYL, WELCOME TO A GREAT GROUP OF SURVIVORS AND CARE GIVERS.  I AM 78, HAVE

HAD CML FOR 13 YEARS, I'M IN MY FIFTH TRIAL AND IN CCR.  YOU HAVE CERTAINLY HAD

A ROUGH COUPLE OF YEARS. BUT YOU SOUND LIKE YOU ARE HANDLING EVERYTHING WITH

GREAT COURAGE.  NICE TO HAVE YOU WITH US, BOBBY DOYLE

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

>

> Hi everyone,

>

> I have been browsing this site for a couple of months now, and felt

> it was time I said HELLO and introduced myself...you all seem such

a

> nice group with a great sense of humour.... Lottie you are an

> inspiration.

>

> My name is Sheryl, I am 59 years old and live in Australia, I have

3

> wonderful & supportive sons , 3 wonderful daughters in law, 2

> grandsons ages 7 & 4 and 2 more grandchildren on the way in late

> September.

>

> I was diagnosed with Chronic Stage CML in October 2005,( 16 months

> after I lost my husband from a Brain Tumor). Life seemed pretty

> unfair at this stage, especially for my boys and their families.

> I had been feeling unwell for a few months, mainly back and leg

> pain. I had a CT scan of my spine-and was dx with 3 bulging discs

> and moderate stenosis, understandably all my aches and pains were

> put down to this, after about 4 months of continued pain and then

> other issues - rapid pulse, night sweats etc. etc, I was given a

> blood test for possible Anaemia !!!!!. GP called, and I ended up in

> hospital immediately having blood transfusions. ... My WBC was 598,

> (my onc/haem. said it was the second highest white count he had

seen)

> RBC 70, most other bloods were abnormal and my spleen was rather

> enlarged. My Dr. thought I may have been in accelerated stage, but

> BMB proved otherwise, .... I reckon I would have been late Chronic

> stage though. I was given 2000mg hydrea daily until I was put onto

> 400mg glivec, then it was increased to 600mg. Luckily I responded

> extremely well to glivec with minimal side effects, puffy eyelids

> and eyebleeds are the worst side effect I have. I have not got

all

> my readings, I was just pleased to hear I was going great,......

> first CCR.. then MMR....and now in March this year... PCRU !!!! my

> lastest PCR test 3 weeks ago is still showing PCRU........ I never

> thought I would get there especially considering how unwell I was

in

> the beginning.

> Thanks to support groups like this, I am feeling far more positive

> for the future, so much info. and SUPPORT.

>

> Take care

> Sheryl

>

[Guest guest]

you sound like you have a handle on this, so form my perspective, keep us

informed regarding how the next cleanse goes.  I do not know if there was a

piece of parasite, that is a hard call...keep up the good work.  Plenty of

water, exercise, etc.

From: JEFF WOODHOUSE <jlslwood@...>

Subject: Introduction

gallstones

Date: Saturday, February 28, 2009, 5:22 PM

Hello,

I am very glad that I found this group. I have been reading the archives and

exploring the website, and I have learned a lot.

I have been working with an N.D since July because of digestive problems and

other things. She immediately had me eliminate gluten, dairy, etc. and put me on

supplements, including a daily colon cleansing product. I began to improve, but

in October I had an intestinal flu, and through that and symptoms that I

exhibited, she suspected I had a gallbladder/ gallstone problem. I did my first

cleanse (her protocol) in November and about 100 stones came out. I did the

next cleanse 2 weeks later and did not get a lot of stones out, but probably a

lot of sludge. I had these big things that looked like whole fruit skins come

out. I felt fairly good after that cleanse. I completed my third cleanse

about 6 weeks after that, which was about a month ago. I got out about 30 or

so stones and 2 very large ones. I have felt terrible after this last

cleanse--especially lots of lightheadedness. My doctor was going to have me do

a parasite cleanse after this

3rd cleanse, but since I have been feeling so bad, she wants me to complete

another cleanse. She thinks that toxins have gotten backed up into the

bloodstream, so she is having me try a new digestive enzyme that is very

powerful and breaks down food within 10-15 minutes. She believes that that will

carry the toxins out quickly after doing the cleanse. I am hoping that will be

helpful, but I am thinking that parasites are probably another reason why I

don't feel good, especially since there was a piece of one that came out in

cleanse #3.

I am doing cleanse #4 on Monday night. I have gathered some good ideas already

from this list to try so that the cleanse will be more successful. If any of

you have any suggestions, I would be interested.

Thanks,

[Guest guest]

What is the name of the digestive enzyme?

Best wishes to you,

Sent from my Verizon Wireless BlackBerry

Introduction

Hello,

I am very glad that I found this group. I have been reading the archives and

exploring the website, and I have learned a lot.

I have been working with an N.D since July because of digestive problems and

other things. She immediately had me eliminate gluten, dairy, etc. and put me on

supplements, including a daily colon cleansing product. I began to improve, but

in October I had an intestinal flu, and through that and symptoms that I

exhibited, she suspected I had a gallbladder/gallstone problem. I did my first

cleanse (her protocol) in November and about 100 stones came out. I did the

next cleanse 2 weeks later and did not get a lot of stones out, but probably a

lot of sludge. I had these big things that looked like whole fruit skins come

out. I felt fairly good after that cleanse. I completed my third cleanse

about 6 weeks after that, which was about a month ago. I got out about 30 or

so stones and 2 very large ones. I have felt terrible after this last

cleanse--especially lots of lightheadedness. My doctor was going to have me do

a parasite cleanse after this 3rd cleanse, but since I have been feeling so bad,

she wants me to complete another cleanse. She thinks that toxins have gotten

backed up into the bloodstream, so she is having me try a new digestive enzyme

that is very powerful and breaks down food within 10-15 minutes. She believes

that that will carry the toxins out quickly after doing the cleanse. I am

hoping that will be helpful, but I am thinking that parasites are probably

another reason why I don't feel good, especially since there was a piece of one

that came out in cleanse #3.

I am doing cleanse #4 on Monday night. I have gathered some good ideas already

from this list to try so that the cleanse will be more successful. If any of

you have any suggestions, I would be interested.

Thanks,

[Guest guest]

Jay,

Thanks for responding. Exercise is one of the things I am going to

try this time in order to get my system moving better. Water is good too.

Concerning the parasite, I send pictures to my N.D. of all gallstones

and weird things. I sent her a picture of it, and she blew it up many

times and said through her experience it was a parasite. It felt

totally different than a gallstone. So I am relying on her judgment.

Thanks,

[Guest guest]

,

The digestive enzyme is call Enriching Gifts Plant Enzymes. The

company has a website, and I have been to it, but the website address

is not printed on the bottle. It is supposed to break down thick

oatmeal into liquid in 10-15 minutes, and my N.D. also saw evidence on

a high powered microscope of what they do. I will take my N.D.'s

words for it--I don't want to waste any of the pills by putting them

in oatmeal, since they are rather expensive!

>

> What is the name of the digestive enzyme?

>

> Best wishes to you,

>

> Sent from my Verizon Wireless BlackBerry

>

[Guest guest]

And if its not too much trouble could you outline how to do the cleanse.

Brad

>

> What is the name of the digestive enzyme?

>

> Best wishes to you,

>

> Sent from my Verizon Wireless BlackBerry

>

> Introduction

>

>

> Hello,

>

> I am very glad that I found this group. I have been reading the

archives and exploring the website, and I have learned a lot.

>

> I have been working with an N.D since July because of digestive

problems and other things. She immediately had me eliminate gluten,

dairy, etc. and put me on supplements, including a daily colon

cleansing product. I began to improve, but in October I had an

intestinal flu, and through that and symptoms that I exhibited, she

suspected I had a gallbladder/gallstone problem. I did my first

cleanse (her protocol) in November and about 100 stones came out. I

did the next cleanse 2 weeks later and did not get a lot of stones

out, but probably a lot of sludge. I had these big things that looked

like whole fruit skins come out. I felt fairly good after that

cleanse. I completed my third cleanse about 6 weeks after that,

which was about a month ago. I got out about 30 or so stones and 2

very large ones. I have felt terrible after this last

cleanse--especially lots of lightheadedness. My doctor was going to

have me do a parasite cleanse after this 3rd cleanse, but since I have

been feeling so bad, she wants me to complete another cleanse. She

thinks that toxins have gotten backed up into the bloodstream, so she

is having me try a new digestive enzyme that is very powerful and

breaks down food within 10-15 minutes. She believes that that will

carry the toxins out quickly after doing the cleanse. I am hoping

that will be helpful, but I am thinking that parasites are probably

another reason why I don't feel good, especially since there was a

piece of one that came out in cleanse #3.

>

> I am doing cleanse #4 on Monday night. I have gathered some good

ideas already from this list to try so that the cleanse will be more

successful. If any of you have any suggestions, I would be interested.

>

> Thanks,

>

>

>

>

>

[Guest guest]

Oh my - you have a great doc!

So what did it look like?

Could you tell us the details of that very effective cleanse and also which

parasitic you used?

Thanks!

Sent from my Verizon Wireless BlackBerry

Re: Introduction

Jay,

Thanks for responding. Exercise is one of the things I am going to

try this time in order to get my system moving better. Water is good too.

Concerning the parasite, I send pictures to my N.D. of all gallstones

and weird things. I sent her a picture of it, and she blew it up many

times and said through her experience it was a parasite. It felt

totally different than a gallstone. So I am relying on her judgment.

Thanks,

[Guest guest]

for exercise - I like yoga, pilates, spinning, etc...

From: ontarioguy2334 <ontarioguy2334@...>

Subject: Re: Introduction

gallstones

Date: Sunday, March 1, 2009, 7:12 AM

And if its not too much trouble could you outline how to do the

cleanse.

Brad

>

> What is the name of the digestive enzyme?

>

> Best wishes to you,

>

> Sent from my Verizon Wireless BlackBerry

>

> Introduction

>

>

> Hello,

>

> I am very glad that I found this group. I have been reading the

archives and exploring the website, and I have learned a lot.

>

> I have been working with an N.D since July because of digestive

problems and other things. She immediately had me eliminate gluten,

dairy, etc. and put me on supplements, including a daily colon

cleansing product. I began to improve, but in October I had an

intestinal flu, and through that and symptoms that I exhibited, she

suspected I had a gallbladder/ gallstone problem. I did my first

cleanse (her protocol) in November and about 100 stones came out. I

did the next cleanse 2 weeks later and did not get a lot of stones

out, but probably a lot of sludge. I had these big things that looked

like whole fruit skins come out. I felt fairly good after that

cleanse. I completed my third cleanse about 6 weeks after that,

which was about a month ago. I got out about 30 or so stones and 2

very large ones. I have felt terrible after this last

cleanse--especially lots of lightheadedness. My doctor was going to

have me do a parasite cleanse after this 3rd cleanse, but since I have

been feeling so bad, she wants me to complete another cleanse. She

thinks that toxins have gotten backed up into the bloodstream, so she

is having me try a new digestive enzyme that is very powerful and

breaks down food within 10-15 minutes. She believes that that will

carry the toxins out quickly after doing the cleanse. I am hoping

that will be helpful, but I am thinking that parasites are probably

another reason why I don't feel good, especially since there was a

piece of one that came out in cleanse #3.

>

> I am doing cleanse #4 on Monday night. I have gathered some good

ideas already from this list to try so that the cleanse will be more

successful. If any of you have any suggestions, I would be interested.

>

> Thanks,

>

>

>

>

>

[Guest guest]

Brad,

Here's the protocol:

1st day: Take 30 drops of PhosFood (phosphoric acid) in apple juice

3X. Eat light vegetarian diet.

2nd day: Take 30 drops of PhosFood in apple juice 3X. Eat light

vegetarian diet.

3rd day: Take 30 drops of PhosFood in apple juice 3X and eat same

diet. 1.5 hours before going to bed drink 12 oz of oil (doesn't have

to be olive--I have been using macadamia nut oil). Drink 4 oz. each

1/2 hour. Take Epsom Salts or stool softener (she has her own) so

won't be constipated. In morning stones are supposed to come out.

My stones take longer to come out than this. I think with most people

the amount of oil is supposed to be enough to push the stones out, but

I think I am more congested. So the stones come out, but they are

delayed by 12-48 hours. This time I am going to continue taking stool

softener in the morning after I take the oil until they come out. The

stones are often very soft and squashed, probably because of the

PhosFoods.

> >

> > What is the name of the digestive enzyme?

> >

> > Best wishes to you,

> >

> > Sent from my Verizon Wireless BlackBerry

> >

> > Introduction

> >

> >

> > Hello,

> >

> > I am very glad that I found this group. I have been reading the

> archives and exploring the website, and I have learned a lot.

> >

> > I have been working with an N.D since July because of digestive

> problems and other things. She immediately had me eliminate gluten,

> dairy, etc. and put me on supplements, including a daily colon

> cleansing product. I began to improve, but in October I had an

> intestinal flu, and through that and symptoms that I exhibited, she

> suspected I had a gallbladder/gallstone problem. I did my first

> cleanse (her protocol) in November and about 100 stones came out. I

> did the next cleanse 2 weeks later and did not get a lot of stones

> out, but probably a lot of sludge. I had these big things that looked

> like whole fruit skins come out. I felt fairly good after that

> cleanse. I completed my third cleanse about 6 weeks after that,

> which was about a month ago. I got out about 30 or so stones and 2

> very large ones. I have felt terrible after this last

> cleanse--especially lots of lightheadedness. My doctor was going to

> have me do a parasite cleanse after this 3rd cleanse, but since I have

> been feeling so bad, she wants me to complete another cleanse. She

> thinks that toxins have gotten backed up into the bloodstream, so she

> is having me try a new digestive enzyme that is very powerful and

> breaks down food within 10-15 minutes. She believes that that will

> carry the toxins out quickly after doing the cleanse. I am hoping

> that will be helpful, but I am thinking that parasites are probably

> another reason why I don't feel good, especially since there was a

> piece of one that came out in cleanse #3.

> >

> > I am doing cleanse #4 on Monday night. I have gathered some good

> ideas already from this list to try so that the cleanse will be more

> successful. If any of you have any suggestions, I would be interested.

> >

> > Thanks,

> >

> >

> >

> >

> >

[Guest guest]

,

It was just a piece of a parasite, she said. It was 1 inch or so

long, was multi colored (mostly green and yellow) and was shiny. It

felt like plastic and was like a tube. I thought at first it was just

a mangled piece of gallstone and was not going to take a picture of

it, but I am glad that I did. I have not done a parasite cleanse yet.

That was just with the liver cleanse. I do use a regular colon

cleansing product, though. I detailed the cleanse protocol in another

message I sent to Brad, which is what I used with that 1st cleanse

where I got 100 stones out. They were all green colored, but they did

not come out until 6:00 p.m. of the day when they are supposed to come

out. They mostly came out all at the same time. The other two

cleanses have been brown colored gallstones.

>

> Oh my - you have a great doc!

> So what did it look like?

> Could you tell us the details of that very effective cleanse and

also which parasitic you used?

>

> Thanks!

>

>

> Sent from my Verizon Wireless BlackBerry

>

> Re: Introduction

>

>

> Jay,

> Thanks for responding. Exercise is one of the things I am going to

> try this time in order to get my system moving better. Water is good

too.

>

> Concerning the parasite, I send pictures to my N.D. of all gallstones

> and weird things. I sent her a picture of it, and she blew it up many

> times and said through her experience it was a parasite. It felt

> totally different than a gallstone. So I am relying on her judgment.

>

> Thanks,

>

>

>

>

>

>

>

>

>

[Guest guest]

- the one you just sent was the gallstone one?

I take colon clenz from time to time and take milk thistle for a month several

bottles a year - the one with tumeric. The gb cleanse you posted sounds almost

more gentle than the olive oil/lemon/coke one!

Ok, for parasite what will you take?

I usually take parastroy - have not in awhile so I need to do one soon.

Sent from my Verizon Wireless BlackBerry

Re: Introduction

>

>

> Jay,

> Thanks for responding. Exercise is one of the things I am going to

> try this time in order to get my system moving better. Water is good

too.

>

> Concerning the parasite, I send pictures to my N.D. of all gallstones

> and weird things. I sent her a picture of it, and she blew it up many

> times and said through her experience it was a parasite. It felt

> totally different than a gallstone. So I am relying on her judgment.

>

> Thanks,

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Yes, the one that I sent was the gallstone one.

I will be taking Energique Parasite Detox (homeopathic) and Zymex II.

I do not yet know the protocol for it. It will be individualized for

me--probably more gentle since I can't handle a lot at a time.

> >

> > Oh my - you have a great doc!

> > So what did it look like?

> > Could you tell us the details of that very effective cleanse and

> also which parasitic you used?

> >

> > Thanks!

> >

> >

> > Sent from my Verizon Wireless BlackBerry

> >

> > Re: Introduction

> >

> >

> > Jay,

> > Thanks for responding. Exercise is one of the things I am going to

> > try this time in order to get my system moving better. Water is good

> too.

> >

> > Concerning the parasite, I send pictures to my N.D. of all gallstones

> > and weird things. I sent her a picture of it, and she blew it up many

> > times and said through her experience it was a parasite. It felt

> > totally different than a gallstone. So I am relying on her judgment.

> >

> > Thanks,

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jan,

Nice to have someone from around me join.  I live in Elgin.  I have been looking

at setting up a support group in Austin with the CMTA.  Let me know if you are

interested.

 Kris

________________________________

From: Jan <djwilson50@...>

Sent: Thursday, May 28, 2009 8:23:19 PM

Subject: Introduction

Hello, I live in Austin and had an EMG 7 years ago that confirmed (at least to

my neurologist ) that I had CMT though I always knew that I had inherited it

from my father.  He was diagnosed in the early 50's after my younger brother was

born with severe spinal bifida.  This was after my older sister had had many

problems walking and required foot surgery when she was very young. After a

family history was gathered it was discovered that this had been in my father's

family for years.  It was never determined whether my younger brother was

afflicted with CMT since he had so many other problems but my father, my sister

and myself all inherited it.  My sister who is 61 now uses a cane and my father,

who had foot drop problems in his 50's, had to use a motorized scooter in his

early 70's. 

I have been very lucky in that I have not been severely affected.  Other than

surgeries for finger contractions, thumb surgery, and knee replacement and

shoulder surgery(from arthritis) I have been doing very well.  In the past

couple of years I have been plagued with restless leg syndrome which the drug

Requip helps tremendously.  I have pes cavus and hammer toes and wear orthotics.

 One of the reasons I think I have done so well is that I have always stayed

active.  For the last 27 years I have gone to a Jazzercise class 2 to 3 times a

week, I have also gone to yoga classes (mainly when recuperating from

surgeries).  I love to dance and with the floor exercises I also get weight

training.  I retired from my job as an Academic Counselor at the University of

Texas 10 years ago when my younger brother was dying and never went back.   I am

59 years old and married with 3 grown children and 4 grandchildren, so far none

has any of the signs, though

my 21 year old daughter had surgery for scoliosis when she was 16.  She has not

been tested and with insurance the way it is that kind of diagnosis can be bad.

 

There was a peripheral neuropathy support group in Austin a few years ago but it

has since disbanded.  Of about 25 to 30 members there was only one other who had

CMT.  My major problem is fatigue but I will keep dancing until I cannot and

then I will find something new, like aquatic dancing. 

 

Thanks for the great internet support group.

Jan  

[Guest guest]

Welcome to you and your wife.  I am glad the xolair shots are working and I am

sorry about her hair loss problem.  I do hope that you and she can find a 

reason and she can get some help.

 

I do have a question:  why are the shots so painful for her?  I am curious as to

why they might be painful.  I have been taking the injections for over three

years now and would not describe them painful in anyway.  In fact, my arm was

sorer from the flu shot than it ever is from the xolair.  How many does she take

at a time? The one thing that I do know is that the injection must be given very

slowly.......

 

Continued good results with the xolair....and I do hope she finds an answer for

the hair loss.

 

Adah

From: sisy_phus1@... <sisy_phus1@...>

Subject: [ ] Introduction

Date: Friday, October 9, 2009, 8:02 PM

 

Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

I did see that the group last discussed the subject in March and I read Addy and

Pat's responses. I appreciate the information. I shared the posts with my wife

and we'll follow up on the endocrinology angle.

She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

Thanks again for the information. Good health to all.

Andy

[Guest guest]

I have significant hair loss but I think my hypertension meds have impacted

mine. I am very thin in the from and on the sides.

Gwendolyn Rafter,MAOM,MBA/HRM

From: sisy_phus1@... <sisy_phus1@...>

Subject: [ ] Introduction

Date: Friday, October 9, 2009, 9:02 PM

 

Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

I did see that the group last discussed the subject in March and I read Addy and

Pat's responses. I appreciate the information. I shared the posts with my wife

and we'll follow up on the endocrinology angle.

She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

Thanks again for the information. Good health to all.

Andy

[Guest guest]

Welcome, Welcome. Welcome to our group

I have been on Xolair since 2003 and have never had any pain whatsoever during

the shots. A REGULAR allergy shot and steroid shots still hurt but with xolair I

have never felt a thing.

What does your doctor say about all the pain? Does your wife give herself the

injections? Some doctors still allow their patients to self inject.

As for baldness.... at 55, my hair hasn't turned loose, but sure has turned

gray. I get a haircut every 3 weeks and it is really thick.

Once again,

Welcome!

Doug

Group founder

On xolair since September 2003

First patient in the State of Arkansas to get xolair

[Guest guest]

Welcome!

I'm sorry to hear that your wife is experiencing such difficulty.

We have had a VERY small number of folks report experiencing

pain with Xolair shots. Like Adah, I wonder if the shots are

being administered slowly enough.

Do try to rule out other possibilities for the hair loss,

especially since your wife noticed it prior to starting Xolair.

Let us know how she is doing and what you find out.

Addy

Group Co-owner

>

> Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

>

> I did see that the group last discussed the subject in March and I read Addy

and Pat's responses. I appreciate the information. I shared the posts with my

wife and we'll follow up on the endocrinology angle.

>

> She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

>

> Thanks again for the information. Good health to all.

>

> Andy

>

[Guest guest]

Lots of things can influence hair loss.

LMA

________________________________

From: Gwendolyn Rafter <gwen5052@...>

Sent: Fri, October 9, 2009 9:30:24 PM

Subject: Re: [ ] Introduction

I have significant hair loss but I think my hypertension meds have impacted

mine. I am very thin in the from and on the sides.

Gwendolyn Rafter,MAOM, MBA/HRM

From: sisy_phus1 (DOT) com <sisy_phus1 (DOT) com>

Subject: [ ] Introduction

Date: Friday, October 9, 2009, 9:02 PM

Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

I did see that the group last discussed the subject in March and I read Addy and

Pat's responses. I appreciate the information. I shared the posts with my wife

and we'll follow up on the endocrinology angle.

She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

Thanks again for the information. Good health to all.

Andy

[Guest guest]

Good day all. I've had to post out of order because I receive the following

message when I try to Reply to any post.

Cannot retrieve message #### for

Anyway, Lucy experiences pain with the shots (two). She does not

self-administer. She receives the shots at the doctor's office. I realize

everyone has different pain thresholds but there may be something to the comment

that the injections are not being administered appropriately i.e. not slowly

enough.

Lucy's not on hypertension drugs so we'll continue to seek an answer to the hair

issue. I will share whatever we find out.

[Guest guest]

Hi. My daughter gets three shots every two weeks. There are 5 different

nurses who give the shots and you cant pick who it is. With one nurse my

daughter never has any pain..with the other four she does..I would say it is

the way they give her the injections.

as far as hair loss, my daughter is hypothyroid and has some(not much

though)hair lose. I hope your wife finds the reason. good luck. jean

On Sun, Oct 11, 2009 at 7:23 PM, Andy <sisy_phus1@...> wrote:

>

>

> Good day all. I've had to post out of order because I receive the following

> message when I try to Reply to any post.

>

> Cannot retrieve message #### for

>

> Anyway, Lucy experiences pain with the shots (two). She does not

> self-administer. She receives the shots at the doctor's office. I realize

> everyone has different pain thresholds but there may be something to the

> comment that the injections are not being administered appropriately i.e.

> not slowly enough.

>

> Lucy's not on hypertension drugs so we'll continue to seek an answer to the

> hair issue. I will share whatever we find out.

>

>

>

[Guest guest]

I guess I was fortunate.  My xolair doctor (at the six months appointment after

starting xolair) asked me about the shots and actually asked for an evaluation

of how I was treated by his staff.  I told him the two nurses who gave the shots

correctly and then I told him about the one nurse who gave it to me too fast, it

hurt, and I had a huge bruise for a week.  Guess what...he assigned one of the

nurses to me that gave me the shots correctly.  Now, if she can't, she makes

sure that one of the others who gives it correctly gives me the shot.  I have

had no pain and no problems since. 

 

However, you are your child's advocate unless she is old enough to speak out for

herself.  The next time she has a doctor's appointment I would simply say, " Why

is it that when Nurse #1 gives the shot, my daughter has no pain, but when any

of the other nurses give her the shot she has intense pain. "   Maybe he will

respond in a positive way and your daughter can get her shots only by the one

nurse, or maybe it will be a clue to him that his other nurses need to be

retrained on giving the xolair shots.  I am just throwing out some ideas for

you.

 

By the way I am a 71 year old lady who learned a long time ago to be my own

advocate, but in as tactful, non-confrontational way as possible.  I am not

afraid to ask questions that let my providers know I am informed.

 

Best wishes....the shots (other than the initial stick) shouldn't hurt......

 

Adah

>

>

> Good day all. I've had to post out of order because I receive the following

> message when I try to Reply to any post.

>

> Cannot retrieve message #### for

>

> Anyway, Lucy experiences pain with the shots (two). She does not

> self-administer. She receives the shots at the doctor's office. I realize

> everyone has different pain thresholds but there may be something to the

> comment that the injections are not being administered appropriately i.e.

> not slowly enough.

>

> Lucy's not on hypertension drugs so we'll continue to seek an answer to the

> hair issue. I will share whatever we find out.

>

>

>