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

September 11, 2008

Hi, Vicki.

It is so Ironic that you posted about the skin rash and boils. I

have always had them on and off in my armpits and upper arms,

however, I am now pickled with them. Some of them are huge and some

of them burst and leave me with gaping holes which continue to drain

fluid. My CML Specialist suggested that I have one of the large ones

drained and tested for bacteria because he suspects that I might need

a round of antibiotics. Could you please give me a little more info

on what happened to your skin and how you finally got rid of the

boils? Were yours as bad as mine have now become? I think it is a

bacterial infection, at this point, and that is why they are more

prominent. I think I will make appt. with dermatologist tomorrow.

Thanks so much.

> >

> > 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

> >

>

September 12, 2008

Hi !

I had several bouts with these boils--one run was on my scalp of all

places--it drove me crazy and was so painful! That was the first

episode.

Then I had a run on my face--that was horrible. Looked like the

worst case of acne ever, and on a 40+ year-old woman (a few years

ago) that was terrible, too. The third was on my upper, outer

thighs and it was very painful since I sleep on my side.

The bacteria was some type of Staphylococcus, I forget which variety

it was. I think I took Augmentin for one episode, and Keflex for the

other two. I took them for at least 3 weeks, and one round I think

was for six weeks. Two of these episodes were before I was

diagnosed with leukemia, the third was after--that was the one on my

thighs.

My arms now get sores on them which don't heal, but I wouldn't

really classify them as boils. They don't sound nearly as bad as

yours are--they don't drain--they are just scabby. My arms start

out bumpy and then get scabby and then I have red marks where these

were that NEVER seem to go away.

I think your doctor's idea of doing a culture is a great one. That

way they will know a good specific antibiotic which will kill that

specific type of bug! Then ask about the Bactroban in your nose.

That was what helped me not be a carrier of the Staph anymore and

now I rarely have any boils of any kind--just the weird arm scabs

that I told you about above. I think that is related definitely to

the Gleevec, since it seems to make the skin on my arms especially

very bumpy and also thin and fragile--my legs too, but less so.

Good luck, and keep me posted! Stay well.

Vicki

> > >

> > > 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

> > >

> >

>

September 12, 2008

Granny takes Gleevec 400 mg. and she has gotten staph on her leg and had to have

antibiotic by drip for four days in a row. She also gets places on her legs that

look like little broken blood vessels and then she also gets boil type places,

that do ooze, on her legs. Her medical doctor just put her on antibiotics by

mouth, this time and she is healing up nicely.

[ ] Re: A newbie to some, and and old friend to

others........(VICKI)