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Hi ,

I was diagnosed with RA the first part of July. The Dr is still trying to

pinpoint all causes of pain. I'm getting to the point I wonder how many more

diagnosis I can really bare to hear.

I think when you are first diagnosed you have a grieving process to go

through. Same as you do if you lose someone .

I felt the same as you when I first joined this group. My biggest concern was

what was my quality of life going to be? How was I going to take care of my

kids?

Fortunately for both of us we found this group! Following everyones posts and

participating every now and again has helped me out in a big way!

Secondly I have a cousin ( married in to the family) that has RA. She had

been diagnosed 40 years ago. She has just got to the point she can't hold

anything in her hands anymore. Up to last year she was still baling hay! Her

advice for me was to keep moving no matter how bad it hurts. So that's what I

have been doing ever since. I don't know how old you are , but I'm 34 and I know

I have atleast 40 years left in me.

Keep your chin up and Hopefully you'll get on the right meds right away.

Kim (Caldwell, TX)

Lick <leslielick777@...> wrote:

Hi ,

Thank you for responding so quickly. It's good to hear from members of the group

who can help educate me, and help me get a handle on this. THe thought of what

RA can do to your body is beyond comprehension just as the treatments that the

Rheumy wants to start. THe side affects alone sound almost as bad as the RA. I

don't quite know how to feel about that yet. It's all so sudden and frightening.

THanks again for the support and I look forward to more discussions.

Have a good evening.

Les

<dakirb1@...> wrote:

>Hi ,

welcome to the group! Yes, the doctors want to dive right in with

treatment, I know that's how it happened to me. My head was spinning

so fast from the information overload the first few weeks after I was

diagnosed in spring 2005. I hope your doc gets you on an aggresive

treatment plan soon. I have joint erosion my my dominant right wrist,

I've learned to use my left hand for most chores but the left wrist

has active RA in it too...my doc says I probably had RA for years in

my body and didn't know it-the level of inflammation was off the

charts in the beginning. Keep us posted on your appts. '

> Hi everyone,

>

> I hope this is a pain free day for all of you.

>

> I want to start by saying that I have just been diagnosed with RA

only

> 2 days ago. It hasn't even sunk in yet. I have been given a lot of

> paperwork to read and digest, but find it's a lot to absorb.

>

> I haven't started treatment yet because I have to have more blood

work

> drawn and chest x-ray and TB test, then they want to start me on the

> Methotrexate protecol as long as the tests come back clean.

>

> The other factor for delay is that I have had AVN (avascular

necrosis)

> in 2 bones, (scaphoid and lunate bones) on one wrist and have to

have

> it fused soon, and a torn ligaments and other problems in the other

> wrist that may need surgery as well. My rheumatologist tells me

that I

> can not start treatment until the wrist issues are resolved. So, I

> may be having to rush to surgery which I had planned to put off

until

> mid next year after saving up for it. The doctor says that the

longer

> I wait the more severe my condition may become and so she is very

> anxious to begin treatment ASAP.

>

> Is this a normal reaction? Is it really that necessary to rush to

> treat? Yes, I'm in pain in many, many areas of my body, but have

been

> living with it for many years as well. I just don't know how to

> respond or react to such scary news.

>

> Thanks for letting me be a part of this group and I look forward to

> learning more from this group.

>

> All my best,

> Les

>

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>

>THe thought of what RA can do to your body is beyond comprehension

just as the treatments that the Rheumy wants to start. THe side

affects alone sound almost as bad as the RA. I don't quite know how

to feel about that yet. It's all so sudden and frightening.

>

> THanks again for the support and I look forward to more discussions.

>

--

I was diagnosed just under a year ago. I understand completely what

you're going through.

Just wanted to let you know it does indeed get better!

One thing to remember is that the side effects of the medications will

not necessarily affect you. In fact, most of the side effects only

affect a small number of users. On the flip side of that, eventual

joint damage with RA is almost a certainty.

Currently I'm take 15mg MTX weekly. I also take Leucovorin (folinic

acid) along with the MTX. I am lucky in that I don't suffer from any

noticeable side effects of the MTX. I do get my blood work done every

6-10 weeks to make sure the MTX isn't affecting my liver. So far, my

labs have been completely normal. If there ever is a problem, my

doctor would stop the meds, so that my levels could come back to normal.

As I posted a few days ago, I'm doing MUCH better than I was a year

ago. But my doctor thinks there's still room for improvement. I'll

probably be going on Enbrel in the next week or two, pending insurance

approval.

It sounds like you're doing the best things you can for

yourself--educating yourself through groups like this and other

websites and getting yourself a good doctor (rheumatologist) that

wants to treat the disease agressively.

Good luck and hang in there!

dordale :)

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-Thanks dordale,

I truly appreciate the advice and good wishes. It is a great help to

know there are others out there and that I can gain needed knowledge

from the group and other websites. I also belong to the Keinbocks

disease support group since that's where my problems first began 7

years ago. I can't believe that after all this time trying to manage

my pain from AVN in my wrist bones to just finding out that I probably

had RA all along, but no one knew to check for it, and that it may be

the primary reason why I developed the dead bones (Kienbock's) disease.

Anyway, thanks again, and I'll continue to lurk around this group and

search the web for additional info.

All my best to you.

Les

>

> >

> >THe thought of what RA can do to your body is beyond comprehension

> just as the treatments that the Rheumy wants to start. THe side

> affects alone sound almost as bad as the RA. I don't quite know how

> to feel about that yet. It's all so sudden and frightening.

> >

> > THanks again for the support and I look forward to more discussions.

> >

>

> --

>

> I was diagnosed just under a year ago. I understand completely what

> you're going through.

>

> Just wanted to let you know it does indeed get better!

>

> One thing to remember is that the side effects of the medications will

> not necessarily affect you. In fact, most of the side effects only

> affect a small number of users. On the flip side of that, eventual

> joint damage with RA is almost a certainty.

>

> Currently I'm take 15mg MTX weekly. I also take Leucovorin (folinic

> acid) along with the MTX. I am lucky in that I don't suffer from any

> noticeable side effects of the MTX. I do get my blood work done every

> 6-10 weeks to make sure the MTX isn't affecting my liver. So far, my

> labs have been completely normal. If there ever is a problem, my

> doctor would stop the meds, so that my levels could come back to normal.

>

> As I posted a few days ago, I'm doing MUCH better than I was a year

> ago. But my doctor thinks there's still room for improvement. I'll

> probably be going on Enbrel in the next week or two, pending insurance

> approval.

>

> It sounds like you're doing the best things you can for

> yourself--educating yourself through groups like this and other

> websites and getting yourself a good doctor (rheumatologist) that

> wants to treat the disease agressively.

>

> Good luck and hang in there!

> dordale :)

>

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Sorry about your diagnosis, Les, and about your wrist problems, too. Why do

your docs think you have AVN in the one wrist?

Yes, it's normal to want to begin treatment for RA with DMARDs right away.

You don't want to give the disease a chance to gear up and get out of

control.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] newly diagnosed

> Hi everyone,

>

> I hope this is a pain free day for all of you.

>

> I want to start by saying that I have just been diagnosed with RA only

> 2 days ago. It hasn't even sunk in yet. I have been given a lot of

> paperwork to read and digest, but find it's a lot to absorb.

>

> I haven't started treatment yet because I have to have more blood work

> drawn and chest x-ray and TB test, then they want to start me on the

> Methotrexate protecol as long as the tests come back clean.

>

> The other factor for delay is that I have had AVN (avascular necrosis)

> in 2 bones, (scaphoid and lunate bones) on one wrist and have to have

> it fused soon, and a torn ligaments and other problems in the other

> wrist that may need surgery as well. My rheumatologist tells me that I

> can not start treatment until the wrist issues are resolved. So, I

> may be having to rush to surgery which I had planned to put off until

> mid next year after saving up for it. The doctor says that the longer

> I wait the more severe my condition may become and so she is very

> anxious to begin treatment ASAP.

>

> Is this a normal reaction? Is it really that necessary to rush to

> treat? Yes, I'm in pain in many, many areas of my body, but have been

> living with it for many years as well. I just don't know how to

> respond or react to such scary news.

>

> Thanks for letting me be a part of this group and I look forward to

> learning more from this group.

>

> All my best,

> Les

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Several of my drs have told me that Plaquenil is a very safe drug. You must

however have regular eye exams. I have a history of eye problems, including

glaucoma, but even my opthamologist is not concerned about me taking it as long

as I see him regularly.

Of course you will discuss the pros and cons of each drug with your own dr. !

Patsy (63) El Mirage, AZ

DX 2005 Stage 1 PBC

RA/SLE/AIH

---- Parrish Blaszka <parrish_blaszka@...> wrote:

Hi,

I am new to the group (just joined last night). After

a couple months of join pain, limited movement

(primarily in my wrists & hands), swelling, I was

diagnosed with RA. My RF & bloodwork came back

negative as did my x-rays. However, MRIs of my wrists

did show sufficient evidence to my rheumatologist that

RA was likely.

I am only 30 and feeling a bit of the " why me " . There

is no genetic link nor other reason that I can

attribute my getting RA to.

Right now, I am trying to sort through the best

medication option. I am likely debating between MTX or

Plaquenil. My concern is that since I am only 30, I am

looking at being on some medication for at least the

next 50 years (I hope!). Most of my concerns are

around long-term use and the risks associated.

Would appreciate some insight into either medication.

Good, bad, otherwise.

Sorry to totally unload on you all. Just feeling a bit

overwhelmed at the moment.

Thanks!

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>

> I'm p.o.a. for a lady who the doctors just told me she has this. She

> seems perfectly fine to me, she don't look, or act sick. Would anyone

> mind sharing with me how life has changed for you. I know nothing

> about this.

>

> Thanks

> D

>

I was diagnosed with CML the first of May this

year. I only problem I had was fuzzy eye sight

at distance. I felt perfectly fine. I was put

on Gleevec and had some side affects, but they

are pretty well gone. I just listened to a

teleconference about Gleevec. The doctor seemed

to think a person can usually lead a normal

life with the exception of blood test, bone

marrow biopsy's. Anyway, I'm not a doctor, but

think Gleevec is the best thing that has

happened for people with CML.

MB

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I think the bleeding part means if she has cuts or scrapes they might bleed

easily. I take the gleevec in pill form. I think that the only way it comes.

Good Luck,

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Thanks for the reply, she told me her eyes had gotten blurry, I

thought it was the onset of macular degeneration.

The doctor said she can bleed easy. Are they talking outwardly or

internally?

The medicine you are on is it a pill? since she's 91, he didn't make

it sound like they want to do anything harsh.

thanks

d

> >

> > I'm p.o.a. for a lady who the doctors just told me she has this. She

> > seems perfectly fine to me, she don't look, or act sick. Would anyone

> > mind sharing with me how life has changed for you. I know nothing

> > about this.

> >

> > Thanks

> > D

> >

> I was diagnosed with CML the first of May this

> year. I only problem I had was fuzzy eye sight

> at distance. I felt perfectly fine. I was put

> on Gleevec and had some side affects, but they

> are pretty well gone. I just listened to a

> teleconference about Gleevec. The doctor seemed

> to think a person can usually lead a normal

> life with the exception of blood test, bone

> marrow biopsy's. Anyway, I'm not a doctor, but

> think Gleevec is the best thing that has

> happened for people with CML.

> MB

>

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Hi D,

I was dx with CML in March of this year. I am on 400mg Gleevec. I went through

alot emotionally with this but with time I got over it. I consider myself one of

the fortunate ones. First 2 months on Gleevec I was physically ill most of the

time. By that I mean, flu like symptoms and just feeling awful. Had to leave

work a few times because of this and also cut down to 6 hrs per day. Had severe

headaches and knee pain before I was dx'd. Now, 7 months later, I feel

wonderful. Headaches and knee pain gone. I've been back to work for 8 hours a

few months ago. I started working out again and live is good. Go for monthly

blood draws of which have been good. Will get the results of my FISH on 10-30.

Last FISH was 78% which isn't good. I know my percentage has dropped because I

feel so good. I've lost alot of weight but plan to put some on in the near

future. Taking the daily Gleevec is second nature to me now and my routine is

back on track. So with this said I wish everyone is as

fortunate as I am and wish everyone a healthy journey while dealing with CML.

Pam

ddlamonica <ddlamonica@...> wrote: I'm

p.o.a. for a lady who the doctors just told me she has this. She

seems perfectly fine to me, she don't look, or act sick. Would anyone

mind sharing with me how life has changed for you. I know nothing

about this.

Thanks

D

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

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Hi,

I am glad for those that do not have or seem to have any problems with

taking Gleevec. I was dxed in April of 04, and if memory serves me right I

am in complete remission..well, as long as I remain taking Gleevec. I had

severe side effects at first, you name it, I had it. All except for problems

with my hair. I used to work as a credit card fraud investigator, but due to

the side effects of the Gleevec, I lost my position. I tried to go back to

work in July of 04, but it was a disaster, and I have not worked since.

Shortly after that the lady I lived with for a long time, and had married

five months before being dxed decided to bail, which lead me to where I am

now.

So far I have been lucky in the fact I had private disability insurance

through my employer, and I am still considered a employee, they just removed

me from the payroll and consider me a retiree. This December I will turn 40.

Unfortunately for me, though the side effects are almost all managed by

other medications, I still suffer from fatigue, diarrhea, muscle cramps,

nausea, and bone pain. I have also developed some memory issues, though I

cannot for sure say that is caused by Gleevec. I have a team of three

doctors I see in Louisville and they have advised me that about half of the

patients they treat do indeed live pretty normal lives, but then there are

those like me that do not. I am presently waiting(to tie up loose ends) to

move back from Ohio to Indiana back once again to my mothers house. After

another failed attempt of having a relationship. My condition is not the

total cause of my present relationship failing but it played a major factor,

because the lack of income. I make half of what I did make while I could

work.

I am presently awaiting a judges decision about drawing SSD. The insurance

company that pays my benefits has hired a third party company named Allsup

to represent me. I rarely missed a day of work before being dxed, and loved

my job. I keep hoping one day I can try again to go back to work(my former

employer has sort of given me that option thankfully) but if things remain

the way they are it is not going to happen. I am sorry to put a damper on

things, and this is not a pity party for me, just stating the facts as they

concern me personally. Once again I do not begrudge those that have no

problems with Gleevec, I would say your lucky but none of us have that much

luck since we have CML. Take care,

Terry

On 10/21/06, p miller <pmiller789@...> wrote:

>

> Hi D,

> I was dx with CML in March of this year. I am on 400mg Gleevec. I went

> through alot emotionally with this but with time I got over it. I consider

> myself one of the fortunate ones. First 2 months on Gleevec I was physically

> ill most of the time. By that I mean, flu like symptoms and just feeling

> awful. Had to leave work a few times because of this and also cut down to 6

> hrs per day. Had severe headaches and knee pain before I was dx'd. Now, 7

> months later, I feel wonderful. Headaches and knee pain gone. I've been back

> to work for 8 hours a few months ago. I started working out again and live

> is good. Go for monthly blood draws of which have been good. Will get the

> results of my FISH on 10-30. Last FISH was 78% which isn't good. I know my

> percentage has dropped because I feel so good. I've lost alot of weight but

> plan to put some on in the near future. Taking the daily Gleevec is second

> nature to me now and my routine is back on track. So with this said I wish

> everyone is as

> fortunate as I am and wish everyone a healthy journey while dealing with

> CML.

> Pam

>

> ddlamonica <ddlamonica@...>

> wrote: I'm p.o.a. for a lady who the

> doctors just told me she has this. She

> seems perfectly fine to me, she don't look, or act sick. Would anyone

> mind sharing with me how life has changed for you. I know nothing

> about this.

>

> Thanks

> D

>

>

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com <http:///>. Check

> it out.

>

>

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I sounds like you had the same symptoms as I did. I have been on Gleevec

since the first of May. It took a little time for my body to become adjusted to

the medication. I go to a cancer clinic and was told that CML is not

something you pass onto your family. I was also told that the cause of it is

not

something you have done in the past, so please don't beat yourself up about it.

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Margaret,

I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor

but I can tell you, and I think almost everyone in the group will agree,

that the drug Gleevec is the first, and most effective treatment. Having

said that, I do need to tell you there is not a " cure " for CML, but with the

advances in medications, you will very likely live a normal life span. The

problem is that Gleevec effects those who take it in different ways. I for

instance have had to stop working and am on private disability, and awaiting

approval for SSD. Then there are those that have little to no side effects

and live normal lives. You are at the right place for answers to almost any

question you might have. There are allot of people within the group that are

very very knowledgeable. One major piece of advice I can give you is find an

oncologist ASAP. Also make sure you control your treatment and the

oncologist has a decent bed side manner. Take care and hang in there,

Terry

On 10/22/06, mpraymond06 <mpraymond@...> wrote:

>

>

> I just found out I have CML with 138,000 white blood cells, haven't

> seen an oncologist yet.

>

> I'm wondering what's the most effective treatment? Can it be passed on

> to my children/grandchildren? How does your life change with

> treatment?

>

> The only symptoms I had was vision programs and fatigue. I also seem

> to have a lot of foam-like mucus in my nose and throat every morning.

> Anyone else with this?

>

> Thanks for responding. I'm still in the dark, trying to learn from the

> web but need more information from other CML folks.

>

> Thanks much,

> Margaret

>

>

>

>

>

>

>

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Hey All:

I have written once in a while on the site and am a regular reader in a qwest

of knowledge. I was DX in April 05 and have been on Gleevec since May of 05.

As far as my counts, things look great, like everyone I have ups and downs

with side effects of the drug. I need to get input on bone problems anyone is

experiencing while taking this drug. In the last 4 months I have experienced

stress fractures in both feet and have a strange pain in my left hip that feels

like bone pain. Is Gleevec creating bone problems with extended use? I know

some have written about bone density tests. Do we need a supplement for bones

while on this drug?

Anyone with any experience with this issue please respond. I need to know

what direction to go with these problems. Thanks.

Therese Stone

jeffsm1@... wrote:

I sounds like you had the same symptoms as I did. I have been on

Gleevec

since the first of May. It took a little time for my body to become adjusted to

the medication. I go to a cancer clinic and was told that CML is not

something you pass onto your family. I was also told that the cause of it is not

something you have done in the past, so please don't beat yourself up about it.

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Dear Terry,

Thank you so much for responding. I've been in the dark, trying to read what I

can over the web but personal stories always mean the most.

I will see the oncologist on the 24th and find out what the course of

treatment is. It sounds like Gleevec will likely be the drug. I really fear the

side effects but then the condition is worse. Was sorry to hear that you are on

disability, I know that must be very difficult. I've been thinking about

retireing so this may push me into it.

Again, I very much appreciate your response.

Please take care.

Margaret

Terry Dailey <terrydailey@...> wrote:

Margaret,

I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor

but I can tell you, and I think almost everyone in the group will agree,

that the drug Gleevec is the first, and most effective treatment. Having

said that, I do need to tell you there is not a " cure " for CML, but with the

advances in medications, you will very likely live a normal life span. The

problem is that Gleevec effects those who take it in different ways. I for

instance have had to stop working and am on private disability, and awaiting

approval for SSD. Then there are those that have little to no side effects

and live normal lives. You are at the right place for answers to almost any

question you might have. There are allot of people within the group that are

very very knowledgeable. One major piece of advice I can give you is find an

oncologist ASAP. Also make sure you control your treatment and the

oncologist has a decent bed side manner. Take care and hang in there,

Terry

On 10/22/06, mpraymond06 <mpraymond@...> wrote:

>

>

> I just found out I have CML with 138,000 white blood cells, haven't

> seen an oncologist yet.

>

> I'm wondering what's the most effective treatment? Can it be passed on

> to my children/grandchildren? How does your life change with

> treatment?

>

> The only symptoms I had was vision programs and fatigue. I also seem

> to have a lot of foam-like mucus in my nose and throat every morning.

> Anyone else with this?

>

> Thanks for responding. I'm still in the dark, trying to learn from the

> web but need more information from other CML folks.

>

> Thanks much,

> Margaret

>

>

>

>

>

>

>

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Hi Margaret,

Don't get yourself to worked up just yet about the side effects, because

honestly you may very well be lucky enough not to have allot of them, or

maybe none at all. If you do, just do not freak out, because we are all here

for you. I am in the process of moving but when I get back to Indiana if you

need to chat just let me know. I unfortunately have allot of time on my

hands, but would be glad to try and help as best as I can. I do not have

allot of technical knowledge about test results, but I do have the life

experience(as allot of us in the group) of living with CML and being on

Gleevec. I presently take 400mg's a day. I take mine at night before bed to

help manage side effects. The one thing I can tell you for sure is to *never

* take it on an empty stomach, and try to drink as much water as you can.

Just hang in there,

Terry

On 10/23/06, Margaret Peake <mpraymond@...> wrote:

>

> Dear Terry,

>

> Thank you so much for responding. I've been in the dark, trying to read

> what I can over the web but personal stories always mean the most.

>

> I will see the oncologist on the 24th and find out what the course of

> treatment is. It sounds like Gleevec will likely be the drug. I really fear

> the side effects but then the condition is worse. Was sorry to hear that you

> are on disability, I know that must be very difficult. I've been thinking

> about retireing so this may push me into it.

>

> Again, I very much appreciate your response.

>

> Please take care.

> Margaret

>

> Terry Dailey <terrydailey@...> wrote:

> Margaret,

> I am sorry for your diagnosis. I was dxed in April of 04. I am not a

> doctor

> but I can tell you, and I think almost everyone in the group will agree,

> that the drug Gleevec is the first, and most effective treatment. Having

> said that, I do need to tell you there is not a " cure " for CML, but with

> the

> advances in medications, you will very likely live a normal life span. The

> problem is that Gleevec effects those who take it in different ways. I for

> instance have had to stop working and am on private disability, and

> awaiting

> approval for SSD. Then there are those that have little to no side effects

> and live normal lives. You are at the right place for answers to almost

> any

> question you might have. There are allot of people within the group that

> are

> very very knowledgeable. One major piece of advice I can give you is find

> an

> oncologist ASAP. Also make sure you control your treatment and the

> oncologist has a decent bed side manner. Take care and hang in there,

>

> Terry

>

> On 10/22/06, mpraymond06 <mpraymond@...> wrote:

> >

> >

> > I just found out I have CML with 138,000 white blood cells, haven't

> > seen an oncologist yet.

> >

> > I'm wondering what's the most effective treatment? Can it be passed on

> > to my children/grandchildren? How does your life change with

> > treatment?

> >

> > The only symptoms I had was vision programs and fatigue. I also seem

> > to have a lot of foam-like mucus in my nose and throat every morning.

> > Anyone else with this?

> >

> > Thanks for responding. I'm still in the dark, trying to learn from the

> > web but need more information from other CML folks.

> >

> > Thanks much,

> > Margaret

> >

> >

> >

> >

> >

> >

> >

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Hi Margaret,

My name is Troy and I am a daily reader on this site, but not a frequent

participant. It is a great site! I was lucky enough to find an incredible

doctor who is very knowledgeable about CML. With the information/guidance I

receive from him and this site, my journey has been much easier!!

Like allot of the people here, I am a newbie to this CML stuff! I was

diagnosed on July 5th of this year. I went in for a routine physical on July

3rd. My GP had the lab run a CBC and on July 5th he called me into his office

to inform me my WBC was 127,000. Two hours later I met my onc. He performed the

BMB and in about 5 days I had my diagnosis. The worst part for me was waiting

the 5 - 7 days to find out if in fact I had leukemia and if so, what type. It

was confirmed that the #9 and #22 chromosome had a make out session in my body

and created an ugly little baby called the Philadelphia chromosome. All of this

without my consent mind you!!!

I started Gleevec on July 31st. I started with 800mg, but my body couldn't

tolerate it. After coming off Gleevec twice, we dropped my dosage to 600mg and

I am doing fine now! When I say, we dropped the dosage, I mean we. Dr. Doss,

my onc, keeps me very involved in my treatment program. We make decisions

together. At first, my side effects were pretty bad I had bone pain, nausea,

diarrhea, loss of appetite, etc. I was starting to hate this little orange pill

that I was told was going to save my life!!!!

Margaret, I am writing all this to say, stick with it!!! Hopefully, you will

be like me and many others and have few side effects from CML or Gleevec. I

have been on Gleevec for 3 months now and, with the exception of moderate

fatigue, I am doing great! So far, the initial fear and uncertainty was the

worst part. Sure, when I sit and think about having CML it still gets a little

spooky, but then I remind myself, I have CML, it doesn't have me!!!! I am a

biker who plans to die of old age, sitting on his Road King and enjoying the

view from the Continental Divide!! Up to this point, CML has been a huge

inconvenience and major pain in the butt!!!!

Hang in there Margaret!!! The best is still yet to come, CML or not!!!!!

Regards,

Troy

Margaret Peake <mpraymond@...> wrote:

Dear Terry,

Thank you so much for responding. I've been in the dark, trying to read what I

can over the web but personal stories always mean the most.

I will see the oncologist on the 24th and find out what the course of treatment

is. It sounds like Gleevec will likely be the drug. I really fear the side

effects but then the condition is worse. Was sorry to hear that you are on

disability, I know that must be very difficult. I've been thinking about

retireing so this may push me into it.

Again, I very much appreciate your response.

Please take care.

Margaret

Terry Dailey <terrydailey@...> wrote:

Margaret,

I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor

but I can tell you, and I think almost everyone in the group will agree,

that the drug Gleevec is the first, and most effective treatment. Having

said that, I do need to tell you there is not a " cure " for CML, but with the

advances in medications, you will very likely live a normal life span. The

problem is that Gleevec effects those who take it in different ways. I for

instance have had to stop working and am on private disability, and awaiting

approval for SSD. Then there are those that have little to no side effects

and live normal lives. You are at the right place for answers to almost any

question you might have. There are allot of people within the group that are

very very knowledgeable. One major piece of advice I can give you is find an

oncologist ASAP. Also make sure you control your treatment and the

oncologist has a decent bed side manner. Take care and hang in there,

Terry

On 10/22/06, mpraymond06 <mpraymond@...> wrote:

>

>

> I just found out I have CML with 138,000 white blood cells, haven't

> seen an oncologist yet.

>

> I'm wondering what's the most effective treatment? Can it be passed on

> to my children/grandchildren? How does your life change with

> treatment?

>

> The only symptoms I had was vision programs and fatigue. I also seem

> to have a lot of foam-like mucus in my nose and throat every morning.

> Anyone else with this?

>

> Thanks for responding. I'm still in the dark, trying to learn from the

> web but need more information from other CML folks.

>

> Thanks much,

> Margaret

>

>

>

>

>

>

>

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Guest guest

Thanks so much. It means a lot to hear from people who are doing well in spite

of CML. I'm mostly " up " about it too but have to admit I have my moments when I

feel sorry for myself. It was especially nice to get your email as I'm getting

ready to leave for the oncologist this morning.

Margaret

& Troy W <trocan722@...> wrote:

Hi Margaret,

My name is Troy and I am a daily reader on this site, but not a frequent

participant. It is a great site! I was lucky enough to find an incredible doctor

who is very knowledgeable about CML. With the information/guidance I receive

from him and this site, my journey has been much easier!!

Like allot of the people here, I am a newbie to this CML stuff! I was diagnosed

on July 5th of this year. I went in for a routine physical on July 3rd. My GP

had the lab run a CBC and on July 5th he called me into his office to inform me

my WBC was 127,000. Two hours later I met my onc. He performed the BMB and in

about 5 days I had my diagnosis. The worst part for me was waiting the 5 - 7

days to find out if in fact I had leukemia and if so, what type. It was

confirmed that the #9 and #22 chromosome had a make out session in my body and

created an ugly little baby called the Philadelphia chromosome. All of this

without my consent mind you!!!

I started Gleevec on July 31st. I started with 800mg, but my body couldn't

tolerate it. After coming off Gleevec twice, we dropped my dosage to 600mg and I

am doing fine now! When I say, we dropped the dosage, I mean we. Dr. Doss, my

onc, keeps me very involved in my treatment program. We make decisions together.

At first, my side effects were pretty bad I had bone pain, nausea, diarrhea,

loss of appetite, etc. I was starting to hate this little orange pill that I was

told was going to save my life!!!!

Margaret, I am writing all this to say, stick with it!!! Hopefully, you will be

like me and many others and have few side effects from CML or Gleevec. I have

been on Gleevec for 3 months now and, with the exception of moderate fatigue, I

am doing great! So far, the initial fear and uncertainty was the worst part.

Sure, when I sit and think about having CML it still gets a little spooky, but

then I remind myself, I have CML, it doesn't have me!!!! I am a biker who plans

to die of old age, sitting on his Road King and enjoying the view from the

Continental Divide!! Up to this point, CML has been a huge inconvenience and

major pain in the butt!!!!

Hang in there Margaret!!! The best is still yet to come, CML or not!!!!!

Regards,

Troy

Margaret Peake <mpraymond@...> wrote:

Dear Terry,

Thank you so much for responding. I've been in the dark, trying to read what I

can over the web but personal stories always mean the most.

I will see the oncologist on the 24th and find out what the course of treatment

is. It sounds like Gleevec will likely be the drug. I really fear the side

effects but then the condition is worse. Was sorry to hear that you are on

disability, I know that must be very difficult. I've been thinking about

retireing so this may push me into it.

Again, I very much appreciate your response.

Please take care.

Margaret

Terry Dailey <terrydailey@...> wrote:

Margaret,

I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor

but I can tell you, and I think almost everyone in the group will agree,

that the drug Gleevec is the first, and most effective treatment. Having

said that, I do need to tell you there is not a " cure " for CML, but with the

advances in medications, you will very likely live a normal life span. The

problem is that Gleevec effects those who take it in different ways. I for

instance have had to stop working and am on private disability, and awaiting

approval for SSD. Then there are those that have little to no side effects

and live normal lives. You are at the right place for answers to almost any

question you might have. There are allot of people within the group that are

very very knowledgeable. One major piece of advice I can give you is find an

oncologist ASAP. Also make sure you control your treatment and the

oncologist has a decent bed side manner. Take care and hang in there,

Terry

On 10/22/06, mpraymond06 <mpraymond@...> wrote:

>

>

> I just found out I have CML with 138,000 white blood cells, haven't

> seen an oncologist yet.

>

> I'm wondering what's the most effective treatment? Can it be passed on

> to my children/grandchildren? How does your life change with

> treatment?

>

> The only symptoms I had was vision programs and fatigue. I also seem

> to have a lot of foam-like mucus in my nose and throat every morning.

> Anyone else with this?

>

> Thanks for responding. I'm still in the dark, trying to learn from the

> web but need more information from other CML folks.

>

> Thanks much,

> Margaret

>

>

>

>

>

>

>

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This is Muse speaking.

Who are the moderators here? I wish to ask a question about changing the setup,

so that I can send my little love graphics through when I talk. PLEASE

MUSE

Ms. Muse

" I believe that unarmed truth and unconditional love will have final word in

reality. This is why right, temporarily defeated, is stronger than evil

triumphant. "

Luther King, Jr.

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Hi Therese --

I am currently in the process of letting a foot fracture heal -- it broke

somewhat spontaneously -- just while walking and a slight misstep. This is the

third fracture I have had in the past two years. I have been on 400 mgs Gleevec

for 3 years. I am becoming more and more convinced that the fractures are

related to the Gleevec and/or the cml. Anyone have any thoughts on this??

in Minn

Re: [ ] newly diagnosed

Hey All:

I have written once in a while on the site and am a regular reader in a qwest

of knowledge. I was DX in April 05 and have been on Gleevec since May of 05.

As far as my counts, things look great, like everyone I have ups and downs

with side effects of the drug. I need to get input on bone problems anyone is

experiencing while taking this drug. In the last 4 months I have experienced

stress fractures in both feet and have a strange pain in my left hip that feels

like bone pain. Is Gleevec creating bone problems with extended use? I know some

have written about bone density tests. Do we need a supplement for bones while

on this drug?

Anyone with any experience with this issue please respond. I need to know what

direction to go with these problems. Thanks.

Therese Stone

jeffsm1@...<mailto:jeffsm1@...> wrote:

I sounds like you had the same symptoms as I did. I have been on Gleevec

since the first of May. It took a little time for my body to become adjusted

to

the medication. I go to a cancer clinic and was told that CML is not

something you pass onto your family. I was also told that the cause of it is

not

something you have done in the past, so please don't beat yourself up about

it.

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Hi all and especially Margaret!

I, too, read these emails all the time and never respond. My husband was

diagnosed with CML on July 17th of this year. It was a VERY HARD SUMMER for

us. We had our first baby on April 30th, so when our baby was 2.5 months

old, my husband was diagnosed. But--not from a routine physical exam. He had

brusing around the time our baby was due--needless to say he put off going

to the doc since we were about to have a baby. Then, after our baby was

born, the bruising disappeared. But then something worse happend...my

husband (--age 33, NEVER sick before, rarely even gets a cold), had

numbness on his left hand and the left side of his face. We went to the E.R.

After running bloodtests, CT Scans and MRIs what they found was alarming:

's White Blood Cell count was 449,00, and he had a blood clot on his

brain--the blood clot was causing him to have a stroke on the left side of

his body. Yes, it was confirmed he had CML within hours, but more alarming

and urgent was the blood clot. They were hoping that once he went through

leukopherysis treatments and went on esclated doses of hydrea, that the

blood clot would break up on it's own--it did not, in fact it grew. His

pupils began to hurneate, and by the next day we had 2 top neurosurgeons

frantically telling me they had to do emergency brain surgery--suddenly the

word " leukemia " did not worry me at all...if only my husband ONLY had

leukemia.

All in all, after 3 emergency brain surgeries in 5 days, they were able to

extract the blood clot. Slowly regained most feeling on the left side

of his body, and then started Gleevec. He did well for about 6-7 weeks, but

was on other meds as well because of all of the brain surgeries, so was

experiening some side affects, but who was to say WHAT medication it was

from.

Last month he was in the hospital the entire month--his White Blood Cell

count dropped to a mere 500...he was severly neutropenic and was susceptible

to virtually ANY infection. After being OFF Gleevec for the entire month,

his counts are now well within the normal range and he is back on

Gleevec--starting at 100mg/day and over the next month we hope to work up to

400mg/day which is where he will stay. We love his new onc, and we also got

referrals to the Cuty of Hope Cancer Research CEnter and have been lucky

enough to see a team of leukemia specialists there--all of whom were

involved in the trials of Gleevec.

All in all I just want you to know that is doing EXCELLENT now---in

such a short time. We have talked to so many people who really are leading

pretty " normal " lives, but who are on Gleevec and who have CML. Yes, life

will never go back to exactly the way it was, I mean, has a form of

cancer. But having lost both of my parents to cancer at a very young

age...wow...living with CML seems a blessing--afterall, my husband is ALIVE

and able to raise our son who is now 6 months old! We, too, were very scared

at first, but knowledge is power and the more we have learned through

websites like this one, the " Easier " it is to handle.

Good luck, Margaret, and to all of you who are battling CML--seems like more

and more, with each passing day, you are WINNING the fight!

Stay strong,

Cervera

>From: & Troy W <trocan722@...>

>Reply-

>

>Subject: Re: [ ] newly diagnosed

>Date: Mon, 23 Oct 2006 17:17:55 -0700 (PDT)

>

>Hi Margaret,

>

> My name is Troy and I am a daily reader on this site, but not a frequent

>participant. It is a great site! I was lucky enough to find an incredible

>doctor who is very knowledgeable about CML. With the information/guidance

>I receive from him and this site, my journey has been much easier!!

>

> Like allot of the people here, I am a newbie to this CML stuff! I was

>diagnosed on July 5th of this year. I went in for a routine physical on

>July 3rd. My GP had the lab run a CBC and on July 5th he called me into

>his office to inform me my WBC was 127,000. Two hours later I met my onc.

>He performed the BMB and in about 5 days I had my diagnosis. The worst

>part for me was waiting the 5 - 7 days to find out if in fact I had

>leukemia and if so, what type. It was confirmed that the #9 and #22

>chromosome had a make out session in my body and created an ugly little

>baby called the Philadelphia chromosome. All of this without my consent

>mind you!!!

>

> I started Gleevec on July 31st. I started with 800mg, but my body

>couldn't tolerate it. After coming off Gleevec twice, we dropped my dosage

>to 600mg and I am doing fine now! When I say, we dropped the dosage, I

>mean we. Dr. Doss, my onc, keeps me very involved in my treatment program.

> We make decisions together. At first, my side effects were pretty bad I

>had bone pain, nausea, diarrhea, loss of appetite, etc. I was starting to

>hate this little orange pill that I was told was going to save my life!!!!

>

> Margaret, I am writing all this to say, stick with it!!! Hopefully, you

>will be like me and many others and have few side effects from CML or

>Gleevec. I have been on Gleevec for 3 months now and, with the exception

>of moderate fatigue, I am doing great! So far, the initial fear and

>uncertainty was the worst part. Sure, when I sit and think about having

>CML it still gets a little spooky, but then I remind myself, I have CML, it

>doesn't have me!!!! I am a biker who plans to die of old age, sitting on

>his Road King and enjoying the view from the Continental Divide!! Up to

>this point, CML has been a huge inconvenience and major pain in the

>butt!!!!

>

> Hang in there Margaret!!! The best is still yet to come, CML or

>not!!!!!

>

> Regards,

>

> Troy

>

>Margaret Peake <mpraymond@...> wrote:

> Dear Terry,

>

>Thank you so much for responding. I've been in the dark, trying to read

>what I can over the web but personal stories always mean the most.

>

>I will see the oncologist on the 24th and find out what the course of

>treatment is. It sounds like Gleevec will likely be the drug. I really fear

>the side effects but then the condition is worse. Was sorry to hear that

>you are on disability, I know that must be very difficult. I've been

>thinking about retireing so this may push me into it.

>

>Again, I very much appreciate your response.

>

>Please take care.

>Margaret

>

>Terry Dailey <terrydailey@...> wrote:

>Margaret,

>I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor

>but I can tell you, and I think almost everyone in the group will agree,

>that the drug Gleevec is the first, and most effective treatment. Having

>said that, I do need to tell you there is not a " cure " for CML, but with

>the

>advances in medications, you will very likely live a normal life span. The

>problem is that Gleevec effects those who take it in different ways. I for

>instance have had to stop working and am on private disability, and

>awaiting

>approval for SSD. Then there are those that have little to no side effects

>and live normal lives. You are at the right place for answers to almost any

>question you might have. There are allot of people within the group that

>are

>very very knowledgeable. One major piece of advice I can give you is find

>an

>oncologist ASAP. Also make sure you control your treatment and the

>oncologist has a decent bed side manner. Take care and hang in there,

>

>Terry

>

>On 10/22/06, mpraymond06 <mpraymond@...> wrote:

> >

> >

> > I just found out I have CML with 138,000 white blood cells, haven't

> > seen an oncologist yet.

> >

> > I'm wondering what's the most effective treatment? Can it be passed on

> > to my children/grandchildren? How does your life change with

> > treatment?

> >

> > The only symptoms I had was vision programs and fatigue. I also seem

> > to have a lot of foam-like mucus in my nose and throat every morning.

> > Anyone else with this?

> >

> > Thanks for responding. I'm still in the dark, trying to learn from the

> > web but need more information from other CML folks.

> >

> > Thanks much,

> > Margaret

> >

> >

> >

> >

> >

> >

> >

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Hi

Have you heard about the recent research indicating that Gleevec actually

may interfere with bone growth? I don't know if this means it's more likely

that you will get a fracture, or that it may not heal as well, or that

you're more susceptible to osteoporosis in the long run. The study,

published in NEJM, was prompted by the observation that some patients taking

Gleevec had low serum phosphate levels (hypophosphatemia). Phosphate plays a

role in metabolism, nerve and muscle function, and the formation of bones

and teeth. You may want to have your health care providers check your

phosphate levels and have a chat with them about your fractures. Are you

taking calcium supplements? I believe some doctors are strongly encouraging

that now because of the phosphate findings, but as always, talk to your

providers.

G.

www.upstairswindow.org

www.cmlsupport.com

Re: [ ] newly diagnosed

Hi Therese --

I am currently in the process of letting a foot fracture heal -- it broke

somewhat spontaneously -- just while walking and a slight misstep. This is

the third fracture I have had in the past two years. I have been on 400 mgs

Gleevec for 3 years. I am becoming more and more convinced that the

fractures are related to the Gleevec and/or the cml. Anyone have any

thoughts on this??

in Minn

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Thanks for the story of your husband's courage. Staying strong is a priority. I

am still waiting to go on Gleevec as per yesterday's visit with the oncologist.

It's good to hear that life can be near normal.

God's speed to you and your family.

Margaret

Cervera <weez_555@...> wrote:

Hi all and especially Margaret!

I, too, read these emails all the time and never respond. My husband was

diagnosed with CML on July 17th of this year. It was a VERY HARD SUMMER for

us. We had our first baby on April 30th, so when our baby was 2.5 months

old, my husband was diagnosed. But--not from a routine physical exam. He had

brusing around the time our baby was due--needless to say he put off going

to the doc since we were about to have a baby. Then, after our baby was

born, the bruising disappeared. But then something worse happend...my

husband (--age 33, NEVER sick before, rarely even gets a cold), had

numbness on his left hand and the left side of his face. We went to the E.R.

After running bloodtests, CT Scans and MRIs what they found was alarming:

's White Blood Cell count was 449,00, and he had a blood clot on his

brain--the blood clot was causing him to have a stroke on the left side of

his body. Yes, it was confirmed he had CML within hours, but more alarming

and urgent was the blood clot. They were hoping that once he went through

leukopherysis treatments and went on esclated doses of hydrea, that the

blood clot would break up on it's own--it did not, in fact it grew. His

pupils began to hurneate, and by the next day we had 2 top neurosurgeons

frantically telling me they had to do emergency brain surgery--suddenly the

word " leukemia " did not worry me at all...if only my husband ONLY had

leukemia.

All in all, after 3 emergency brain surgeries in 5 days, they were able to

extract the blood clot. Slowly regained most feeling on the left side

of his body, and then started Gleevec. He did well for about 6-7 weeks, but

was on other meds as well because of all of the brain surgeries, so was

experiening some side affects, but who was to say WHAT medication it was

from.

Last month he was in the hospital the entire month--his White Blood Cell

count dropped to a mere 500...he was severly neutropenic and was susceptible

to virtually ANY infection. After being OFF Gleevec for the entire month,

his counts are now well within the normal range and he is back on

Gleevec--starting at 100mg/day and over the next month we hope to work up to

400mg/day which is where he will stay. We love his new onc, and we also got

referrals to the Cuty of Hope Cancer Research CEnter and have been lucky

enough to see a team of leukemia specialists there--all of whom were

involved in the trials of Gleevec.

All in all I just want you to know that is doing EXCELLENT now---in

such a short time. We have talked to so many people who really are leading

pretty " normal " lives, but who are on Gleevec and who have CML. Yes, life

will never go back to exactly the way it was, I mean, has a form of

cancer. But having lost both of my parents to cancer at a very young

age...wow...living with CML seems a blessing--afterall, my husband is ALIVE

and able to raise our son who is now 6 months old! We, too, were very scared

at first, but knowledge is power and the more we have learned through

websites like this one, the " Easier " it is to handle.

Good luck, Margaret, and to all of you who are battling CML--seems like more

and more, with each passing day, you are WINNING the fight!

Stay strong,

Cervera

>From: & Troy W

>Reply-

>

>Subject: Re: [ ] newly diagnosed

>Date: Mon, 23 Oct 2006 17:17:55 -0700 (PDT)

>

>Hi Margaret,

>

> My name is Troy and I am a daily reader on this site, but not a frequent

>participant. It is a great site! I was lucky enough to find an incredible

>doctor who is very knowledgeable about CML. With the information/guidance

>I receive from him and this site, my journey has been much easier!!

>

> Like allot of the people here, I am a newbie to this CML stuff! I was

>diagnosed on July 5th of this year. I went in for a routine physical on

>July 3rd. My GP had the lab run a CBC and on July 5th he called me into

>his office to inform me my WBC was 127,000. Two hours later I met my onc.

>He performed the BMB and in about 5 days I had my diagnosis. The worst

>part for me was waiting the 5 - 7 days to find out if in fact I had

>leukemia and if so, what type. It was confirmed that the #9 and #22

>chromosome had a make out session in my body and created an ugly little

>baby called the Philadelphia chromosome. All of this without my consent

>mind you!!!

>

> I started Gleevec on July 31st. I started with 800mg, but my body

>couldn't tolerate it. After coming off Gleevec twice, we dropped my dosage

>to 600mg and I am doing fine now! When I say, we dropped the dosage, I

>mean we. Dr. Doss, my onc, keeps me very involved in my treatment program.

> We make decisions together. At first, my side effects were pretty bad I

>had bone pain, nausea, diarrhea, loss of appetite, etc. I was starting to

>hate this little orange pill that I was told was going to save my life!!!!

>

> Margaret, I am writing all this to say, stick with it!!! Hopefully, you

>will be like me and many others and have few side effects from CML or

>Gleevec. I have been on Gleevec for 3 months now and, with the exception

>of moderate fatigue, I am doing great! So far, the initial fear and

>uncertainty was the worst part. Sure, when I sit and think about having

>CML it still gets a little spooky, but then I remind myself, I have CML, it

>doesn't have me!!!! I am a biker who plans to die of old age, sitting on

>his Road King and enjoying the view from the Continental Divide!! Up to

>this point, CML has been a huge inconvenience and major pain in the

>butt!!!!

>

> Hang in there Margaret!!! The best is still yet to come, CML or

>not!!!!!

>

> Regards,

>

> Troy

>

>Margaret Peake wrote:

> Dear Terry,

>

>Thank you so much for responding. I've been in the dark, trying to read

>what I can over the web but personal stories always mean the most.

>

>I will see the oncologist on the 24th and find out what the course of

>treatment is. It sounds like Gleevec will likely be the drug. I really fear

>the side effects but then the condition is worse. Was sorry to hear that

>you are on disability, I know that must be very difficult. I've been

>thinking about retireing so this may push me into it.

>

>Again, I very much appreciate your response.

>

>Please take care.

>Margaret

>

>Terry Dailey wrote:

>Margaret,

>I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor

>but I can tell you, and I think almost everyone in the group will agree,

>that the drug Gleevec is the first, and most effective treatment. Having

>said that, I do need to tell you there is not a " cure " for CML, but with

>the

>advances in medications, you will very likely live a normal life span. The

>problem is that Gleevec effects those who take it in different ways. I for

>instance have had to stop working and am on private disability, and

>awaiting

>approval for SSD. Then there are those that have little to no side effects

>and live normal lives. You are at the right place for answers to almost any

>question you might have. There are allot of people within the group that

>are

>very very knowledgeable. One major piece of advice I can give you is find

>an

>oncologist ASAP. Also make sure you control your treatment and the

>oncologist has a decent bed side manner. Take care and hang in there,

>

>Terry

>

>On 10/22/06, mpraymond06 wrote:

> >

> >

> > I just found out I have CML with 138,000 white blood cells, haven't

> > seen an oncologist yet.

> >

> > I'm wondering what's the most effective treatment? Can it be passed on

> > to my children/grandchildren? How does your life change with

> > treatment?

> >

> > The only symptoms I had was vision programs and fatigue. I also seem

> > to have a lot of foam-like mucus in my nose and throat every morning.

> > Anyone else with this?

> >

> > Thanks for responding. I'm still in the dark, trying to learn from the

> > web but need more information from other CML folks.

> >

> > Thanks much,

> > Margaret

> >

> >

> >

> >

> >

> >

> >

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:

Thank you for your response. I talked to the nurse yesterday at my onc's

office and told her what was happening with my feet and bones. I was slightly

appalled with her answer. She told my that none of the info out on Gleevec

suggested that it would cause this problem. This comment I couldn't believe, I

was told by her it could be related to getting older! I am 48 years old and

very active. I never had any problems like this until I started on the Gleevec.

I believe it is related to the Gleevec also. I don't know if we need a

supplement to help with the bones or not. I now am dealing with stress

fractures on both feet and trying to work full time. I was also told by the

same nurse that the the fish test I did three weeks ago had changed but they had

to sent it out to get it read. They did not know how to read it. I am really

questioning this onc right now.

If you find out any info on this please share and I will do the same. Thank

you.

Therese

Finsand <chrisfinsand2@...> wrote:

Hi Therese --

I am currently in the process of letting a foot fracture heal -- it broke

somewhat spontaneously -- just while walking and a slight misstep. This is the

third fracture I have had in the past two years. I have been on 400 mgs Gleevec

for 3 years. I am becoming more and more convinced that the fractures are

related to the Gleevec and/or the cml. Anyone have any thoughts on this??

in Minn

Re: [ ] newly diagnosed

Hey All:

I have written once in a while on the site and am a regular reader in a qwest of

knowledge. I was DX in April 05 and have been on Gleevec since May of 05.

As far as my counts, things look great, like everyone I have ups and downs with

side effects of the drug. I need to get input on bone problems anyone is

experiencing while taking this drug. In the last 4 months I have experienced

stress fractures in both feet and have a strange pain in my left hip that feels

like bone pain. Is Gleevec creating bone problems with extended use? I know some

have written about bone density tests. Do we need a supplement for bones while

on this drug?

Anyone with any experience with this issue please respond. I need to know what

direction to go with these problems. Thanks.

Therese Stone

jeffsm1@...<mailto:jeffsm1@...> wrote:

I sounds like you had the same symptoms as I did. I have been on Gleevec

since the first of May. It took a little time for my body to become adjusted to

the medication. I go to a cancer clinic and was told that CML is not

something you pass onto your family. I was also told that the cause of it is not

something you have done in the past, so please don't beat yourself up about it.

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Guest guest

That's an incredible story, . Thank you for sharing that with

us. I hope that you and your husband can just focus now on enjoying

being with your baby. I remember well the joyful times surrounding

having our children (my wife and I have two daughters, ages 10 and 6)

and I can't imagine what it would be like to have that special time

be " intruded " on by what happened to your husband. I admire your

courage and strength. Warmest regards. (Dov)

> > >

> > >

> > > I just found out I have CML with 138,000 white blood cells,

haven't

> > > seen an oncologist yet.

> > >

> > > I'm wondering what's the most effective treatment? Can it be

passed on

> > > to my children/grandchildren? How does your life change with

> > > treatment?

> > >

> > > The only symptoms I had was vision programs and fatigue. I

also seem

> > > to have a lot of foam-like mucus in my nose and throat every

morning.

> > > Anyone else with this?

> > >

> > > Thanks for responding. I'm still in the dark, trying to learn

from the

> > > web but need more information from other CML folks.

> > >

> > > Thanks much,

> > > Margaret

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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Hi all,

It seems obvious to me just from reading the reponses that there very well

could be something to this. Especially when you have people that are active

had have not had allot of bone breaks in the past. I have been lucky so far

and have not had any problems with bone breaks. For a while I did return to

some light martial arts training after being dxed, but that got to be too

tiring so I stopped, and now I am glad I did. When I was in my teens I was

the king of breaking bones..hehe. I broke both hands(one twice) I

broke several fingers with one that nearly had to be amputated because of a

regular doctors mistake, and I broke my foot. All this happened between 15

to 17. These were all martial arts related. I am glad I have stopped doing

that sort of training.

Therese, not to try an alarm you or anything, but I would get out of that

Onco's as soon as you can find another one. I cannot believe they cannot

read FISH test in their office??? I fired my first Onco, and am happy with

the doctors I have now. The first Onco I had seemed to have the bed side

manner of the crypt keeper..hehehe. He always rushed me in and out, could

not answer any questions I had concerning Gleevec. He would simply look at

me blankly and say " I don't know " . The topper was when I was sitting in an

exam room waiting for him, and he was on the phone across the hall.(he had

left the door to my exam room open) I could hear him trying to cover his

rear on forgetting to visit a patient at the hospital, and also finding a

way to cover a mistake he had made with another patient. Needless to say

that was the last time I went to him. The only good thing I can say about

that office was his nurses were some of the best I have encountered when it

came to being compassionate, and when he did my first BMB he did a great

job, other than that the guy had no clue..hehe.

The onco I am with has their own in office lab, and aside from having a bad

run in with one of the four doctors on my team(he isn't on my team any

longer) I give them an A+. I have noticed though that they are getting more

patients and are a bit slower, but overall I cannot complain. Take care and

I hope things get better for you,

Terry

On 10/25/06, Therese Stone <kidme2003@...> wrote:

>

> :

>

> Thank you for your response. I talked to the nurse yesterday at my onc's

> office and told her what was happening with my feet and bones. I was

> slightly appalled with her answer. She told my that none of the info out on

> Gleevec suggested that it would cause this problem. This comment I couldn't

> believe, I was told by her it could be related to getting older! I am 48

> years old and very active. I never had any problems like this until I

> started on the Gleevec.

>

> I believe it is related to the Gleevec also. I don't know if we need a

> supplement to help with the bones or not. I now am dealing with stress

> fractures on both feet and trying to work full time. I was also told by the

> same nurse that the the fish test I did three weeks ago had changed but they

> had to sent it out to get it read. They did not know how to read it. I am

> really questioning this onc right now.

>

> If you find out any info on this please share and I will do the

> same. Thank you.

>

> Therese

>

> Finsand <chrisfinsand2@...> wrote:

> Hi Therese --

> I am currently in the process of letting a foot fracture heal -- it broke

> somewhat spontaneously -- just while walking and a slight misstep. This is

> the third fracture I have had in the past two years. I have been on 400 mgs

> Gleevec for 3 years. I am becoming more and more convinced that the

> fractures are related to the Gleevec and/or the cml. Anyone have any

> thoughts on this??

>

> in Minn

> Re: [ ] newly diagnosed

>

> Hey All:

>

> I have written once in a while on the site and am a regular reader in a

> qwest of knowledge. I was DX in April 05 and have been on Gleevec since May

> of 05.

>

> As far as my counts, things look great, like everyone I have ups and downs

> with side effects of the drug. I need to get input on bone problems anyone

> is experiencing while taking this drug. In the last 4 months I have

> experienced stress fractures in both feet and have a strange pain in my left

> hip that feels like bone pain. Is Gleevec creating bone problems with

> extended use? I know some have written about bone density tests. Do we need

> a supplement for bones while on this drug?

>

> Anyone with any experience with this issue please respond. I need to know

> what direction to go with these problems. Thanks.

>

> Therese Stone

>

> jeffsm1@...<mailto:jeffsm1@...> wrote:

> I sounds like you had the same symptoms as I did. I have been on Gleevec

> since the first of May. It took a little time for my body to become

> adjusted to

> the medication. I go to a cancer clinic and was told that CML is not

> something you pass onto your family. I was also told that the cause of it

> is not

> something you have done in the past, so please don't beat yourself up

> about it.

>

>

>

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