Re: A newbie to some, and and old friend to others........

[Guest guest]

Dear Cmler 2,

Finally I have done it! I have joined this group, as suggestion of dear lottie.

I have also received a call letting me know the difficulties from her

stay in Houston, TX. on a borrowed cell phone.

Has anyone heard from her recently? I know she mentioned the roof of her home

has

been damaged, and that she and Jimmy were heading back home to buy a battery

generator, because Houma, will not have any electric for 30 days or more.

The reason for my inquiry, is that my Church is willing to do a fund raiser to

help Lottie and Jimmy, and their needs. I spoke of her being a Cmler like

myself,

and when I spoke with her I asked her if she was in need of ANYTHING to make

life just a little easier, and she told me she appreciated the offer, but

declined.

What I want to do is to know when they returned will they need anything, to help

lottie

from being in pain, and nausea with everything that she has gone through. So,

if any

of you really know lottie, and how we can get back in touch, would you please

email

me and let me know, how best to contact them?????

Okay, I have been a Cmler for almost 8 years. November 8, 2000, did I learn the

shocking

news! Boy did it change the quality of life for me. Interferon was the going

drug, to

stop the overage of white cells. So, I DID about 3 +1/2 years, syringing this.

I really had a very difficult time on this drug, which seemed to leave scars of

what could go

wrong with Chemotherapy cancer drug. I ended up being a cancer anorexia

patient,

unable to mix he antibiotics with Interferon. Then came the Gleevec, and I was

placed on

this at a very slow pace. I was then a 115Lbs. women, before Interferon, then

losing

some 70Lbs, on Levinquin 500mgs. and Interferon. I looked like a Halloween

Skeleton,

but survived mostly from a strong spirituality and a reason to believe that I

will survive.

I have 3 children, an adolescent, and 2 teenagers. All of them I had adopted

from

the Asian countries. They are the happiest people in my life, and the best

children

God has blessed me with, they are why I am still here, plus taking Gleevec

400mgs.

What I still don't like about Gleevec, is the swelling, when in humid weather

conditions.

I live in the Midwestern state, and this past summer wasn't too bad with the

humidity,

however if I go outdoors with this type of weather I will swell up really bad,

that I can

proclaim the body of the cartoon character of HULK. Yes, I feel like I am

busting through

my clothing! Where I live is the 4 seasons. The winters in the MIdwest can be

brutal with

the very sub-below cold snap that comes from the Canadian tradewinds, or MN, and

that

can bring on bone pain.

Currently I have only been on 400mgs. for only 2+3/4 years. As I stated, I

started on

Gleevec slowly. My Oncologist had to be very careful about the standard dose

that I never

started the standard dosage even at 300 mgs. I started it at 100mgs., because I

still

needed desperately to gain weight. It took me 2 years to just put back the

weight that I

lost, before I could up the dosages on Gleevec.

I believe the 1st time I got into remission was taking Gleevec at 200mgs., then

for

some unknown reason I was ordered to bump up on 300mgs.

The 300 mgs. brought on severe nauseated, and I was always sick. Then after 1

year

on 300mgs., I was diagnosis with Acute Pancretitis, and hospitalized. The

Internal

Medical Physician, had stopped the Gleevec 300 mgs. for 10 days, and that's when

I went from remission to showing 6% of cancer cells. I was devastated to learn

on a

PCR/BCR/ABL that the cancer returned. I went into Internet to find everything I

could read

to help me understand how this could happen.

I read into the Leukemia/Lymphoma Society website, that said that should the

cancer

return, one has less than 5 years to live. Which I thought at that time was

really the

dumbest thing I could have found on the Internet, and especially from that

web-site.

So, I forward the society memo to everyone in my family and friends who still

support me

with prayers for me and my family. I also changed my diet. I no longer consume

meat or

dairy products, and I had to take enzymes to combat the problem with acidic

stomach

problems which brought on the acute pancretitis. My dietary consumption is

mostly

vegetable with fresh fish where ever I can buy it from. I won't say that I am a

vegeterian,

nor a vegan. I am just someone who doesn't care much for meat, and I am lactose

intolerance, so dumping dairy was not a problem in the least!

While I was on the Leukemia/Lymphoma web-site a blog kept flashing on the side

for advertisement for Asian CMLER. So, I joined. I became familiarized with

the monitors

there and felt I WAS REALLY MISSING MUCH F.Y.I's not knowing how to read the

CBC's. For many years while I was in a live support group with the

Leukemia/Lymphoma

Society, I had asked to join up with other CMLERS, and they never forward me ANY

info

on anyone. My support group which met at a Wellness Home, was primarily folks

who

had Lymphoma, and other cancers, but for the 1st five years I was clueless

about anyone

else who was dealing with the side-effects, and the same drug, so it was

difficult.

Having the Internet, and all it's changes in Computer Technology, has certainly

advanced

us on where or how we need to communicate. beside the typical cell or home land

telephones. My kids use Internet mostly for postings from each one of their

educators at

school to get the latest updates on homework, and or work sheets each teacher

may

want the student to download. Although, I am not as savy as my children are

when it

comes to fully utilizing a computer, I do not have too much time posting or

writing about

my life as a CMLER, but I can tell you I am still surviving!

What I WANT to ask some of the Cmler 2 group, is while one is on Gleevec

400mgs., and

you suffer other side-effects,( bloating, swelling) then need antibiotics, which

one does

one prefer over the others. I am finding it is almost impossible for me to go

on any of the

antibiotics we have in U.S.A, because i do not have enough stomach acid to

manage the

stomach problems that antibiotics wipe out which is the natural flora, or the

right bacteria

to help one heal. Does anyone ever experience boils, or swollen lymph nodes?

Is it true, when reading the CBC. that Neutrophils, and Basofils would tell us

by %,

percentage what part of our blood would tolerate certain drugs or show us how

high

monthly are allergies rise or fall when taking our medication?

My Oncology office does not provide us with printed results of our CBC. They

tell us

it is because they are going paperless, and every record is going onto a medical

CD, so

they are not giving us paper stats, just writing them down. They only tell us

what they

think we are interested in and it is the white blood cells, the red blood cells,

and the

hemoglobin, and maybe if someone is more concern they tell you what your

platelets

are of concerns, but that's it! Would it be harmful if I requested a printed

copy of

all of the CBC testing results? I do not think I could remember monthly what

the % or

numbers run, so that I would know, what is important in knowing??!!

Just so you know by changing my diet, in less than 1 year, I am back in a total

remission.

I made a visit to MSKCC in N.Y.C., after compiling F.Y.I's from the other

webwsite of the

Asian Cmlers. I met up with some arrogant Physicians who insulted my current

Physicians

who are well known in these neck of the Midwest, I am again in total remission.

While I allowed for a BMA to be performed by MSKCC, it was the most painful

experiences.

And so I vowed, that if I ever return back to MSKCC for more blood testings in

the future,

they would have to obtain a BMA from my current home Oncologist.

Also, can someone tell me about very low platelets, what harm does the lower

number

mean in terms of a Cmlers health?

Recently I have broke my right toe, so I am in a heavy boot, not a cast yet! It

has been

almost 6 weeks in this state, I have not been able to do my daily walking as

my exercise,

nor drive my children anywhere as I cannot drive. I think I am gaining more

weight as I am

unable to get any type of exercise while waiting for the foot to heal, and the

swelling

seems worst on some days over the others. I finally made a visit to my G.P., to

ask for

advice about the boils in the groin area, and she insisted I take Zithromax, the

antibiotics.

i do not do well on generic drugs, so I asked her to state no substitute on the

prescription. What I would like to know from the Cmlers 2, is Zithromax the

wrong type

of antibiotics for a CMLER as I am experiencing having to eat more, while on

this drug and

I feel like I am experiencing asthma or more sinus problems from this

antibiotics?

Could this be possible, or does it seem like I have more bacterial problems to

start with?

Just so you folks know, I am highly allergic to penicilian, cipro, sulfate base

drugs, dyes,

rythomycian, which makes up for most of the antibiotics. I think once you take

the

Chemotherapy you mess up all your organs, and compromise your health when you

use antibiotics. Does anyone have any solutions while on Gleevec 400mgs. or

suggestions?

Please respond soon! Thank you, Dory Doggie

[Guest guest]

Hi Dory!

You have had a long haul, that's for sure! I live in Seattle, so am

blessed with a nice breeze most of the time which really helps when

feeling " puffy. " I have sweats too, so I know where you're coming

from.

For your antibiotic related problems, you might try eating yogurt

(there is even a soy yogurt for you since you are nondairy). It has

beneficial bacteria in it. Or you could try one of the drinks,

Danactive or one of those--they all have various types of probiotics

in them (that's the good bacteria that your gut needs to stay

healthy). I would take them a few hours before or a few hours after

your antibiotic dosage to do the most good. You can also buy

probiotic capsules at the healthfood store and they work very well,

too.

I have had problems with those skin infections or boils too. It

seems like you have to really do a long course of antibiotics, 2-3

weeks or more, to get rid of them effectively. The lab will have to

do a test (called culture and sensitivity) to discover what

antibiotic your paticular bacteria is sensitive to, and that is how

they determine which one to put you on. Another thing my doctor did

was she had me put a dab of antibiotic ointment called " Bactroban "

in each nostril every day for one week out of every month. I was a

Staphylococcus carrier, apparently, and that really helped. It

cleared everything up and I haven't had much of a problem since

then. Good luck with yours!

This group is wonderful--so supportive, and such a good source of

accurate information! Everybody really looks out for everybody else

and you can always bring your questions or concerns here and know

that they will be addressed with care.

Welcome and good luck. I also have a 13 year old, a 9 year old

(both boys) and a 24 year old and 29 year old (both girls). So I

can relate!

Hang in there and stay well.

Best wishes,

Vicki

Seattle, WA

Gleevec 600 mg/day

Diagnosed in 09/2006

--- In , " hellodoggie0009 " <hellodoggie0009@...>

wrote:

>

> Dear Cmler 2,

>

> Finally I have done it! I have joined this group, as suggestion

of dear lottie.

>

> I have also received a call letting me know the difficulties from

her

> stay in Houston, TX. on a borrowed cell phone.

>

> Has anyone heard from her recently? I know she mentioned the roof

of her home has

> been damaged, and that she and Jimmy were heading back home to buy

a battery

> generator, because Houma, will not have any electric for 30 days

or more.

>

> The reason for my inquiry, is that my Church is willing to do a

fund raiser to

> help Lottie and Jimmy, and their needs. I spoke of her being a

Cmler like myself,

> and when I spoke with her I asked her if she was in need of

ANYTHING to make

> life just a little easier, and she told me she appreciated the

offer, but declined.

>

> What I want to do is to know when they returned will they need

anything, to help lottie

> from being in pain, and nausea with everything that she has gone

through. So, if any

> of you really know lottie, and how we can get back in touch, would

you please email

> me and let me know, how best to contact them?????

>

> Okay, I have been a Cmler for almost 8 years. November 8, 2000,

did I learn the shocking

> news! Boy did it change the quality of life for me. Interferon

was the going drug, to

> stop the overage of white cells. So, I DID about 3 +1/2 years,

syringing this.

>

> I really had a very difficult time on this drug, which seemed to

leave scars of what could go

> wrong with Chemotherapy cancer drug. I ended up being a cancer

anorexia patient,

> unable to mix he antibiotics with Interferon. Then came the

Gleevec, and I was placed on

> this at a very slow pace. I was then a 115Lbs. women, before

Interferon, then losing

> some 70Lbs, on Levinquin 500mgs. and Interferon. I looked like a

Halloween Skeleton,

> but survived mostly from a strong spirituality and a reason to

believe that I will survive.

>

> I have 3 children, an adolescent, and 2 teenagers. All of them I

had adopted from

> the Asian countries. They are the happiest people in my life, and

the best children

> God has blessed me with, they are why I am still here, plus taking

Gleevec 400mgs.

>

> What I still don't like about Gleevec, is the swelling, when in

humid weather conditions.

> I live in the Midwestern state, and this past summer wasn't too

bad with the humidity,

> however if I go outdoors with this type of weather I will swell up

really bad, that I can

> proclaim the body of the cartoon character of HULK. Yes, I feel

like I am busting through

> my clothing! Where I live is the 4 seasons. The winters in the

MIdwest can be brutal with

> the very sub-below cold snap that comes from the Canadian

tradewinds, or MN, and that

> can bring on bone pain.

>

> Currently I have only been on 400mgs. for only 2+3/4 years. As I

stated, I started on

> Gleevec slowly. My Oncologist had to be very careful about the

standard dose that I never

> started the standard dosage even at 300 mgs. I started it at

100mgs., because I still

> needed desperately to gain weight. It took me 2 years to just put

back the weight that I

> lost, before I could up the dosages on Gleevec.

>

> I believe the 1st time I got into remission was taking Gleevec at

200mgs., then for

> some unknown reason I was ordered to bump up on 300mgs.

> The 300 mgs. brought on severe nauseated, and I was always sick.

Then after 1 year

> on 300mgs., I was diagnosis with Acute Pancretitis, and

hospitalized. The Internal

> Medical Physician, had stopped the Gleevec 300 mgs. for 10 days,

and that's when

> I went from remission to showing 6% of cancer cells. I was

devastated to learn on a

> PCR/BCR/ABL that the cancer returned. I went into Internet to

find everything I could read

> to help me understand how this could happen.

>

> I read into the Leukemia/Lymphoma Society website, that said that

should the cancer

> return, one has less than 5 years to live. Which I thought at

that time was really the

> dumbest thing I could have found on the Internet, and especially

from that web-site.

> So, I forward the society memo to everyone in my family and

friends who still support me

> with prayers for me and my family. I also changed my diet. I no

longer consume meat or

> dairy products, and I had to take enzymes to combat the problem

with acidic stomach

> problems which brought on the acute pancretitis. My dietary

consumption is mostly

> vegetable with fresh fish where ever I can buy it from. I won't

say that I am a vegeterian,

> nor a vegan. I am just someone who doesn't care much for meat,

and I am lactose

> intolerance, so dumping dairy was not a problem in the least!

>

> While I was on the Leukemia/Lymphoma web-site a blog kept flashing

on the side

> for advertisement for Asian CMLER. So, I joined. I became

familiarized with the monitors

> there and felt I WAS REALLY MISSING MUCH F.Y.I's not knowing how

to read the

> CBC's. For many years while I was in a live support group with the

Leukemia/Lymphoma

> Society, I had asked to join up with other CMLERS, and they never

forward me ANY info

> on anyone. My support group which met at a Wellness Home, was

primarily folks who

> had Lymphoma, and other cancers, but for the 1st five years I

was clueless about anyone

> else who was dealing with the side-effects, and the same drug, so

it was difficult.

>

> Having the Internet, and all it's changes in Computer Technology,

has certainly advanced

> us on where or how we need to communicate. beside the typical cell

or home land

> telephones. My kids use Internet mostly for postings from each

one of their educators at

> school to get the latest updates on homework, and or work sheets

each teacher may

> want the student to download. Although, I am not as savy as my

children are when it

> comes to fully utilizing a computer, I do not have too much time

posting or writing about

> my life as a CMLER, but I can tell you I am still surviving!

>

> What I WANT to ask some of the Cmler 2 group, is while one is on

Gleevec 400mgs., and

> you suffer other side-effects,( bloating, swelling) then need

antibiotics, which one does

> one prefer over the others. I am finding it is almost impossible

for me to go on any of the

> antibiotics we have in U.S.A, because i do not have enough stomach

acid to manage the

> stomach problems that antibiotics wipe out which is the natural

flora, or the right bacteria

> to help one heal. Does anyone ever experience boils, or swollen

lymph nodes?

>

> Is it true, when reading the CBC. that Neutrophils, and Basofils

would tell us by %,

> percentage what part of our blood would tolerate certain drugs or

show us how high

> monthly are allergies rise or fall when taking our medication?

>

> My Oncology office does not provide us with printed results of our

CBC. They tell us

> it is because they are going paperless, and every record is going

onto a medical CD, so

> they are not giving us paper stats, just writing them down. They

only tell us what they

> think we are interested in and it is the white blood cells, the

red blood cells, and the

> hemoglobin, and maybe if someone is more concern they tell you

what your platelets

> are of concerns, but that's it! Would it be harmful if I

requested a printed copy of

> all of the CBC testing results? I do not think I could remember

monthly what the % or

> numbers run, so that I would know, what is important in knowing??!!

>

> Just so you know by changing my diet, in less than 1 year, I am

back in a total remission.

>

> I made a visit to MSKCC in N.Y.C., after compiling F.Y.I's from

the other webwsite of the

> Asian Cmlers. I met up with some arrogant Physicians who insulted

my current Physicians

> who are well known in these neck of the Midwest, I am again in

total remission.

> While I allowed for a BMA to be performed by MSKCC, it was the

most painful experiences.

> And so I vowed, that if I ever return back to MSKCC for more blood

testings in the future,

> they would have to obtain a BMA from my current home Oncologist.

>

> Also, can someone tell me about very low platelets, what harm does

the lower number

> mean in terms of a Cmlers health?

>

> Recently I have broke my right toe, so I am in a heavy boot, not a

cast yet! It has been

> almost 6 weeks in this state, I have not been able to do my

daily walking as my exercise,

> nor drive my children anywhere as I cannot drive. I think I am

gaining more weight as I am

> unable to get any type of exercise while waiting for the foot to

heal, and the swelling

> seems worst on some days over the others. I finally made a visit

to my G.P., to ask for

> advice about the boils in the groin area, and she insisted I take

Zithromax, the antibiotics.

> i do not do well on generic drugs, so I asked her to state no

substitute on the

> prescription. What I would like to know from the Cmlers 2, is

Zithromax the wrong type

> of antibiotics for a CMLER as I am experiencing having to eat

more, while on this drug and

> I feel like I am experiencing asthma or more sinus problems from

this antibiotics?

> Could this be possible, or does it seem like I have more bacterial

problems to start with?

>

> Just so you folks know, I am highly allergic to penicilian, cipro,

sulfate base drugs, dyes,

> rythomycian, which makes up for most of the antibiotics. I think

once you take the

> Chemotherapy you mess up all your organs, and compromise your

health when you

> use antibiotics. Does anyone have any solutions while on Gleevec

400mgs. or

> suggestions?

>

> Please respond soon! Thank you, Dory Doggie

>