Re: Tasigna -

[Guest guest]

Hang in there girl, you are NOT the only one. I have been through the

winger with symptoms and have been hospitalized, ER's, etc for 2 years now. I

have been the healthiest the last 6 months as I quit work and went on

disability. 2 months ago, I switched from Gleevec to Spyrcel. I am enjoying

less

symptoms and the ones that do remain, there are not as severe as on Gleevec.

As far as disability goes. I was approved right away but I was very

involved with it. I called the lady who was making my case at least weekly. I

wanted to make sure she knew I was a person and not just a case in a folder on

her desk. I explained every detail of the symptoms. I am NOT disabled due to

having cancer, I am disabled due to side effects, ( and I made that clear).

I also have a lot of pain from osteoporosis as well as bulging disk and a

tear in my lumbar spine area. If your doctors will support you then I would

continue fighting for it. My 3 doctors (medical, oncologist and CML

specialist)

encouraged me to stop working as I was literally ending up dehydrated and in

the hospital more then monthly. I pay the price for doing anything fun or

out of the daily schedule. Such as if we took the kids to Disneyland, I had

to be in my wheel chair as I couldn't stand the walking with pain and the

extreme fatigue. I would also with that, pay for it the first 2 days home. Be

an advocate for yourself and get what you need.

This is a tough disease and it seems like there are people to sail through

it and that it wonderful, God Bless them but there are some that seem to have

every noted side effects under the sun. Unfortunately that sucks! But those

are the cards I have been dealt with and I intend to make the best of it. I

certainly don't feel up to Par everyday and I have days when I am depressed

and angry, I go through the " why me's " just like everyone else. We have to

be strong, continue with a positive attitude and most of all have hope!

Just remember that you are never alone with this. We are all here just an

email away. If you are having a bad day, get on a write back it on here. Its

very therapeutic. That is why I started my blog on caringbridge. If I need

to talk, I can get on and write and it does help.

Drop me a line whenever you'd like. I hope your spirits pick up soon.

Brighter days are ahead!

hugs and hope

35

CML 5/13/05

Spyrcel 100mg

Wife and mother of 3 (12,8,6)

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi ,

Thank you so much for taking your time to write to me. I sincerely

appreciate it. It is amazing how you know EXACTLY how I feel. I have

been dealing with this for almost 4 years (Dec), but although many

say that Gleevec gets better with time, I wasn't seeing that.

I have agonized over switching, since I have been PCRU on Gleevec

since about month 9 of my diagnosis, but I feel like I've been just

holding on by my fingernails lately, and have certainly not

been " living. "

I think the kicker for me was finally being able to have a serum

level test done on Gleevec and finding out some very scary, high

results, with only a 400mg/day dose. This finally made my Dr. take

notice that I wasn't a hypochondriac! (kidding.. but I don't think

he really understood how I really felt inside- Who could? Unless you

are another patient)

I, too, have young kids. I have two daughters, age 8 and 11. I have

been a stay at home Mom since they were born, but had

always " planned " on going back to work when they were older. Since

diagnosis and being sick, that just hasn't happened. I also didn't

qualify for any disability as I wasn't working at the time of Dx. I

was raising babies!

I know how you feel about doing tons of stuff you normally can't do

when you are on the drug. You almost made me cry when you brought

that up because I have seen SUCH an incredible change in just a

week! When I was sick, I could only realistically do " one or two

things " during the day, so I could conserve my energy. Like go

grocery shopping and do a load of laundry-- DONE!

Now, being off for one week, it is crazy. Yesterday, I swept and

mopped the floors, vacummed, cleaned 2 bathrooms, changed beds, did 3

loads of laundry, and put them AWAY! I feel like I'm nesting when

you get pregnant! lol

I am also " clear " in the head, and don't feel like I'm in a fog. I'm

not shivering with chills, and wearing multiple layers of clothes, my

face doesn't look like I'm on steroids, and I can LAUGH again! My

girls and husband are just ASTOUNDED! I am also sleeping good with

no sweats and waking up feeling rested and ready to take on the day.

I haven't felt like this in 5 years. I am shaking my head because

it's so cool!

It's sad that we have to deal with this just to live and raise a

family. I am going to switch drugs. Just haven't decided which one

yet.

Big hugs and smiles for making me feel like I wasn't so alone in this

crazy fight. Will keep you all posted.

Many thanks!

Lynn

Dx'd 12/03

PCRU

>

> Hi all-

>

> Just wanted to add my 2 cents to this communication as I haven't

been on for

> a while.

>

> As many of you know, I had horrendous side effects with Gleevec

(800 mg) but

> had really good results. I stuck it out with numerous

hospitalizations to

> the point of IV's at home 2x weekly. I had every side effects

imaginable

> including losing my pigmentation in my skin as well as strawberry

hair turned

> platinum blonde. I was walking around trying to breath with no

energy to do

> simple things, like shower and retaining so much fluid. I had

effusions and

> didn't know it. I had to file disability and was approved

quickly. All this at

> 34 years old. I really wanted to stay on Gleevec as it was giving

me great

> results and a great remission status.

>

> However, I have switched to Spyrcel (100 mg daily). WHAT a

difference!!!!

> I still have side effects such as fatigue and foggy memory, mild

nausea and

> diarrhea (every now and then) but nothing is as bad as it was on

Gleevec.

> All this being said, I no longer feel like I am just " existing " I

feel like I

> am Living again! I also dropped 16 pounds within 2 weeks which

was ALL fluid.

>

> What I am trying to babble along and say is if you aren't handling

Gleevec,

> give Spyrcel a try. I was completely against changing but I am SO

thankful

> that I did. I was so worried about all the effusions that everyone

was

> talking about with Spyrcel. I haven't had any as well as a matter

of fact, I don't

> have the fluid retention that I had with Gleevec and 3 months

later, I am

> still 16 pounds lighter then I was when I was on Gleevec. No more

of all that

> fluid and trying to breath with so much fatigue.

>

> If you aren't tolerating Gleevec, switch drugs and see how you

do! What do

> you have to lose? Give it 90 days and see how you feel. It has

giving me my

> life back. I cant tell you how much I enjoy things now.

> The good things about this disease is that we have choices now with

these

> drugs. I thought Gleevec was all I needed, but I am SO thankful

that Spyrcel

> has come along. Don't suffer, Live!

>

> my 2 cents!

>

> hugs and hope

>

> CML 5/13/05

> Spyrcel 100 mg daily

> Wife and mother of 3 (12,8,6)

>

>

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

>

>

[Guest guest]

Lynne and ,

Thank you so much for this thread. I've been depressed lately feeling that

there's something wrong with me that I'm having all these issues with Gleevec

and no one else does. The disability people are at it again trying to tell me

I'm the only Gleevec patient with these problems and they had me believing it

was just me. My doctor made me feel somewhat better at my last appointment when

he assured me it wasn't just me and that there were others out there with the

same problems but it realy feels good to hear it from someone else.

Thank you!!!

:}

snickersunny <no_reply > wrote:

Hi ,

Thank you so much for taking your time to write to me. I sincerely

appreciate it. It is amazing how you know EXACTLY how I feel. I have

been dealing with this for almost 4 years (Dec), but although many

say that Gleevec gets better with time, I wasn't seeing that.

I have agonized over switching, since I have been PCRU on Gleevec

since about month 9 of my diagnosis, but I feel like I've been just

holding on by my fingernails lately, and have certainly not

been " living. "

I think the kicker for me was finally being able to have a serum

level test done on Gleevec and finding out some very scary, high

results, with only a 400mg/day dose. This finally made my Dr. take

notice that I wasn't a hypochondriac! (kidding.. but I don't think

he really understood how I really felt inside- Who could? Unless you

are another patient)

I, too, have young kids. I have two daughters, age 8 and 11. I have

been a stay at home Mom since they were born, but had

always " planned " on going back to work when they were older. Since

diagnosis and being sick, that just hasn't happened. I also didn't

qualify for any disability as I wasn't working at the time of Dx. I

was raising babies!

I know how you feel about doing tons of stuff you normally can't do

when you are on the drug. You almost made me cry when you brought

that up because I have seen SUCH an incredible change in just a

week! When I was sick, I could only realistically do " one or two

things " during the day, so I could conserve my energy. Like go

grocery shopping and do a load of laundry-- DONE!

Now, being off for one week, it is crazy. Yesterday, I swept and

mopped the floors, vacummed, cleaned 2 bathrooms, changed beds, did 3

loads of laundry, and put them AWAY! I feel like I'm nesting when

you get pregnant! lol

I am also " clear " in the head, and don't feel like I'm in a fog. I'm

not shivering with chills, and wearing multiple layers of clothes, my

face doesn't look like I'm on steroids, and I can LAUGH again! My

girls and husband are just ASTOUNDED! I am also sleeping good with

no sweats and waking up feeling rested and ready to take on the day.

I haven't felt like this in 5 years. I am shaking my head because

it's so cool!

It's sad that we have to deal with this just to live and raise a

family. I am going to switch drugs. Just haven't decided which one

yet.

Big hugs and smiles for making me feel like I wasn't so alone in this

crazy fight. Will keep you all posted.

Many thanks!

Lynn

Dx'd 12/03

PCRU

>

> Hi all-

>

> Just wanted to add my 2 cents to this communication as I haven't

been on for

> a while.

>

> As many of you know, I had horrendous side effects with Gleevec

(800 mg) but

> had really good results. I stuck it out with numerous

hospitalizations to

> the point of IV's at home 2x weekly. I had every side effects

imaginable

> including losing my pigmentation in my skin as well as strawberry

hair turned

> platinum blonde. I was walking around trying to breath with no

energy to do

> simple things, like shower and retaining so much fluid. I had

effusions and

> didn't know it. I had to file disability and was approved

quickly. All this at

> 34 years old. I really wanted to stay on Gleevec as it was giving

me great

> results and a great remission status.

>

> However, I have switched to Spyrcel (100 mg daily). WHAT a

difference!!!!

> I still have side effects such as fatigue and foggy memory, mild

nausea and

> diarrhea (every now and then) but nothing is as bad as it was on

Gleevec.

> All this being said, I no longer feel like I am just " existing " I

feel like I

> am Living again! I also dropped 16 pounds within 2 weeks which

was ALL fluid.

>

> What I am trying to babble along and say is if you aren't handling

Gleevec,

> give Spyrcel a try. I was completely against changing but I am SO

thankful

> that I did. I was so worried about all the effusions that everyone

was

> talking about with Spyrcel. I haven't had any as well as a matter

of fact, I don't

> have the fluid retention that I had with Gleevec and 3 months

later, I am

> still 16 pounds lighter then I was when I was on Gleevec. No more

of all that

> fluid and trying to breath with so much fatigue.

>

> If you aren't tolerating Gleevec, switch drugs and see how you

do! What do

> you have to lose? Give it 90 days and see how you feel. It has

giving me my

> life back. I cant tell you how much I enjoy things now.

> The good things about this disease is that we have choices now with

these

> drugs. I thought Gleevec was all I needed, but I am SO thankful

that Spyrcel

> has come along. Don't suffer, Live!

>

> my 2 cents!

>

> hugs and hope

>

> CML 5/13/05

> Spyrcel 100 mg daily

> Wife and mother of 3 (12,8,6)

>

>

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

>

>

[Guest guest]

Thanks . I'm working 2 full days a week (used to work 5+ before CML)

and I've tried to work more days and can't do it. The lady from disability

actually gave me a hard time because we went to DisneyWorld in Sept. I was so

mad. She was like, well how can you go to disney with such fatigue. I was

like..I purchased a Rascall type scooter and drove it on the plane and all

through Disney feeling like a goon but darnit my kid went to Disney and we all

had a blast. I even asked my in-laws to come so that they could watch my son

while I rested so that I could do all the fun things he wanted to when he wanted

to.

Andy and I had always planned on taking our kids to Disney once a year at

least until they were in school. We always talked about it. We went on our

first anniversary to Disney, even before Wyatt was concieved and we had always

said that we wanted to bring our kids back every year.

When I was DX Wyatt was 22 months and we went the following May. We had the

best time and made so many wonderful memories. Granted the side effects didn't

take a vacation but it was so nice to just be kind of like a normal family for a

little while. The disability lady actually asked me how I dealt with the

diareah on the long plane ride...I'm like...it's a little over 2 hours to

Florida from Logan and they have a bathroom. Then she asked how I delt with it

in Disney...uh duh they have bathrooms...and lots of them!!!! UGH!!!! Anyway, I

really felt like I was a bad person for going to Disney. It's basically the

only vacation we do and we use our tax money to pay for it each year, KWIM?

UGH! Anyway, thanks for letting me vent about them. We just switched to Unim

from Assurant and I'm crossing my fingers that the new disability person will be

nicer and more understanding.

Thanks again!

:}

vegasrnjen@... wrote:

Hang in there girl, you are NOT the only one. I have been through the

winger with symptoms and have been hospitalized, ER's, etc for 2 years now. I

have been the healthiest the last 6 months as I quit work and went on

disability. 2 months ago, I switched from Gleevec to Spyrcel. I am enjoying less

symptoms and the ones that do remain, there are not as severe as on Gleevec.

As far as disability goes. I was approved right away but I was very

involved with it. I called the lady who was making my case at least weekly. I

wanted to make sure she knew I was a person and not just a case in a folder on

her desk. I explained every detail of the symptoms. I am NOT disabled due to

having cancer, I am disabled due to side effects, ( and I made that clear).

I also have a lot of pain from osteoporosis as well as bulging disk and a

tear in my lumbar spine area. If your doctors will support you then I would

continue fighting for it. My 3 doctors (medical, oncologist and CML specialist)

encouraged me to stop working as I was literally ending up dehydrated and in

the hospital more then monthly. I pay the price for doing anything fun or

out of the daily schedule. Such as if we took the kids to Disneyland, I had

to be in my wheel chair as I couldn't stand the walking with pain and the

extreme fatigue. I would also with that, pay for it the first 2 days home. Be

an advocate for yourself and get what you need.

This is a tough disease and it seems like there are people to sail through

it and that it wonderful, God Bless them but there are some that seem to have

every noted side effects under the sun. Unfortunately that sucks! But those

are the cards I have been dealt with and I intend to make the best of it. I

certainly don't feel up to Par everyday and I have days when I am depressed

and angry, I go through the " why me's " just like everyone else. We have to

be strong, continue with a positive attitude and most of all have hope!

Just remember that you are never alone with this. We are all here just an

email away. If you are having a bad day, get on a write back it on here. Its

very therapeutic. That is why I started my blog on caringbridge. If I need

to talk, I can get on and write and it does help.

Drop me a line whenever you'd like. I hope your spirits pick up soon.

Brighter days are ahead!

hugs and hope

35

CML 5/13/05

Spyrcel 100mg

Wife and mother of 3 (12,8,6)

************************************** See what's new at http://www.aol.com