Re: searching for answers

[Guest guest]

Do you have copies of your medical records from

the military? If not, you need to get them. Be sure

to get all labs, inpatient, outpatient, and clinic

notes. <br><br>You can get them faster by contacting

your Congressman. <br><br>For more info on

this:<br><br><a href=http://www.geocities.com/hepvet

target=new>http://www.geocities.com/hepvet</a><br><br>Hope this

helps!<br><br>LeighAnn

[Guest guest]

stay away from the chiropractor. after my lumbar laminectomy when all other therapies didn't work they sent me to a chiropractor for my lumbar area. he told me I was totally out of wack....my neck was crooked. he proceeded to make an adjustment on my neck. let me tell you....about 30 minutes later I started with such neck and head pain I thought I was having a stroke! I told him NEVER to touch my neck again. I only went to him 1 or 2 times after that. that was in 1993....then in 2004 they find severe degenerative disk disease and vertebraes riding over one another. I can't prove it because 11 years had passed before I had any x-ray of my neck etc.. but I think HE screwed up my neck big time. I never had a problem with it before he touched me.

just from experience, don't let him touch you again. hey, some people swear by them, my sister and sister-in-law go to them and say they feel 100 x's better.....NOT ME.

what did they find in your cervical area if you don't mind me asking? I understand totally...I've been in chronic pain since 1990 when I hurt my lumbar area. what about regular Physical Therapy? have you tried that yet? I tried everything with my cervical and lumbar area only to have surgeries on BOTH. I wish you luck, .

-- searching for answers

My story:chronic pain in both shoulders 15 yearschronic pain in cervical area of spine 15 yearscracked shoulder blade in off road motocycle accident - not sure if still an issuespend hundreds on massagesrecently sought chiropractic help and made matters worseAny suggestions???

[Guest guest]

stay away from the chiropractor. after my lumbar laminectomy when all other therapies didn't work they sent me to a chiropractor for my lumbar area. he told me I was totally out of wack....my neck was crooked. he proceeded to make an adjustment on my neck. let me tell you....about 30 minutes later I started with such neck and head pain I thought I was having a stroke! I told him NEVER to touch my neck again. I only went to him 1 or 2 times after that. that was in 1993....then in 2004 they find severe degenerative disk disease and vertebraes riding over one another. I can't prove it because 11 years had passed before I had any x-ray of my neck etc.. but I think HE screwed up my neck big time. I never had a problem with it before he touched me.

just from experience, don't let him touch you again. hey, some people swear by them, my sister and sister-in-law go to them and say they feel 100 x's better.....NOT ME.

what did they find in your cervical area if you don't mind me asking? I understand totally...I've been in chronic pain since 1990 when I hurt my lumbar area. what about regular Physical Therapy? have you tried that yet? I tried everything with my cervical and lumbar area only to have surgeries on BOTH. I wish you luck, .

-- searching for answers

My story:chronic pain in both shoulders 15 yearschronic pain in cervical area of spine 15 yearscracked shoulder blade in off road motocycle accident - not sure if still an issuespend hundreds on massagesrecently sought chiropractic help and made matters worseAny suggestions???

[Guest guest]

do not let a chirpoprator deal with you cerival issues. a chiro is great for

healthy people who occasionally pop their back out but it's not for people with

injuries. they can make it worse. I haven't been for years but when I did go I

let him pop my back and my hips but he is never allowed to touch my neck.

BTW- did the massages help?

searching for answers

My story:

chronic pain in both shoulders 15 years

chronic pain in cervical area of spine 15 years

cracked shoulder blade in off road motocycle accident - not sure if

still an issue

spend hundreds on massages

recently sought chiropractic help and made matters worse

Any suggestions???

[Guest guest]

do not let a chirpoprator deal with you cerival issues. a chiro is great for

healthy people who occasionally pop their back out but it's not for people with

injuries. they can make it worse. I haven't been for years but when I did go I

let him pop my back and my hips but he is never allowed to touch my neck.

BTW- did the massages help?

searching for answers

My story:

chronic pain in both shoulders 15 years

chronic pain in cervical area of spine 15 years

cracked shoulder blade in off road motocycle accident - not sure if

still an issue

spend hundreds on massages

recently sought chiropractic help and made matters worse

Any suggestions???

[Guest guest]

unfortuneately I found that out too late! i regret the day i ever went to him.

Re: searching for answers

do not let a chirpoprator deal with you cerival issues. a chiro is great for healthy people who occasionally pop their back out but it's not for people with injuries. they can make it worse. I haven't been for years but when I did go I let him pop my back and my hips but he is never allowed to touch my neck.BTW- did the massages help?-----Original Message-----From: Sent: Thu, 9 Dec 2004 12:14:11 -0800neck pain Subject: searching for answersMy story:chronic pain in both shoulders 15 yearschronic pain in cervical area of spine 15 yearscracked shoulder blade in off road motocycle accident - not sure if still an issuespend hundreds on massagesrecently sought chiropractic help and made matters worseAny suggestions???

[Guest guest]

unfortuneately I found that out too late! i regret the day i ever went to him.

Re: searching for answers

do not let a chirpoprator deal with you cerival issues. a chiro is great for healthy people who occasionally pop their back out but it's not for people with injuries. they can make it worse. I haven't been for years but when I did go I let him pop my back and my hips but he is never allowed to touch my neck.BTW- did the massages help?-----Original Message-----From: Sent: Thu, 9 Dec 2004 12:14:11 -0800neck pain Subject: searching for answersMy story:chronic pain in both shoulders 15 yearschronic pain in cervical area of spine 15 yearscracked shoulder blade in off road motocycle accident - not sure if still an issuespend hundreds on massagesrecently sought chiropractic help and made matters worseAny suggestions???

[Guest guest]

I'm starting to wonder the same thing about me. Been kind of

panicking about it the last few days. I guess those chiropractors

just want to crack away and collect the money. I wouldn't be

surprised.

Craig

> unfortuneately I found that out too late! i regret the day i

ever went to him.

> searching for answers

>

>

>

> My story:

>

> chronic pain in both shoulders 15 years

>

> chronic pain in cervical area of spine 15 years

>

> cracked shoulder blade in off road motocycle accident - not sure

if

> still an issue

>

> spend hundreds on massages

>

> recently sought chiropractic help and made matters worse

>

> Any suggestions???

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm starting to wonder the same thing about me. Been kind of

panicking about it the last few days. I guess those chiropractors

just want to crack away and collect the money. I wouldn't be

surprised.

Craig

> unfortuneately I found that out too late! i regret the day i

ever went to him.

> searching for answers

>

>

>

> My story:

>

> chronic pain in both shoulders 15 years

>

> chronic pain in cervical area of spine 15 years

>

> cracked shoulder blade in off road motocycle accident - not sure

if

> still an issue

>

> spend hundreds on massages

>

> recently sought chiropractic help and made matters worse

>

> Any suggestions???

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I have no proof that the Chiropractor did this to me....but deep down I know he did something bad to me from the pain I had in my head afterwards....I can't even describe how severe the pain was, it was that bad. I thought I was having a cerebral hemorrhage.

I just don't trust them now...but again, that's just me.

~Kathy

-- Re: Re: searching for answers

I'm starting to wonder the same thing about me. Been kind of panicking about it the last few days. I guess those chiropractors just want to crack away and collect the money. I wouldn't be surprised.Craig> unfortuneately I found that out too late! i regret the day i ever went to him.> searching for answers> > > > My story:> > chronic pain in both shoulders 15 years> > chronic pain in cervical area of spine 15 years> > cracked shoulder blade in off road motocycle accident - not sure if > still an issue> > spend hundreds on massages> > recently sought chiropractic help and made matters worse> > Any suggestions???> > > > > > > > > > >

[Guest guest]

I never said I had a bad experience with a chiropractor. I'm just

not ruling it out as having an effect on the pain in my neck. Which

has gotten worse since I've seen the chiropractor 3 times in the last

2 months. I did have 2 deep tissue massages around this time also so

I could just be beat up right now. I'm just wondering if it is as

worse as it feels or will just recover after it heals from all the

work done on it recently? Is the pain part of the process? Whatever

the case, the pain is enough to have an effect on my energy. I

wonder about psychosomatic symptoms also.

> > > unfortuneately I found that out too late! i regret the day i

> > ever went to him.

> > > searching for answers

> > >

> > >

> > >

> > > My story:

> > >

> > > chronic pain in both shoulders 15 years

> > >

> > > chronic pain in cervical area of spine 15 years

> > >

> > > cracked shoulder blade in off road motocycle accident - not

sure

> > if

> > > still an issue

> > >

> > > spend hundreds on massages

> > >

> > > recently sought chiropractic help and made matters worse

> > >

> > > Any suggestions???

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Vicki:

First, let me say that I'm sorry you are having some extra issues right now.

Here's what I would do.

For the knee, I would have any doc, it doesn't matteer which, schedule an MRI,

just to make sure things haven't changed/worsened/moved around in there. You

may have a rod pressing on a nerve. I had that happen, and it hurt all the way

into my hips, too.

For the sleepiness, I would have any doc, doesn't matter which, schedule a sleep

study to check for sleep disorders.

Good luck to you,

--

Dodge

Let me deal with honor. Let me act with courage. Let me achieve humility.

Read my blog at:

http://jumpthis.wordpress.com

---- Vicki <gramvick@...> wrote:

=============

I may not post allot on here, but I do read and have learned more about my RA

and Fibro since I joined than I have in the past two years since I was

diagnosed. Reading your stories is like reading so much of my own life,

I do have a couple questions that are still unanswered for me however. I have

rods in my left knee from a bad car accident four years ago. Lately it has been

bothering more that usual. More flare ups, more stress when full weight is

applied, some, but not a lot of swelling, and an icy cold feeling. The pain

slowly spreads to my hips. The only thing that seems to help at all is oxycontin

and a steaming hot bath, and even that is minimal.

My other question is being exhausted all of the time. I drive to work planning

my nap for when I get home, and I drive home counting how many hours I am gonna

get of sleep that night. Last night I slept 14 hours, and still could not barely

get up for work. Once I was there all I wanted to do was hide in my office so I

could sneak some sleep in. Totally both physically and mentally exhausted. On my

days off like tomorrow and Tuesday I do the chemo and then sleep. Even chemo has

never affected me like this before.

oh and I still have the sores in my mouth,

So how do I know what is causing what, which doctor to see?? General Practice,

oncologist or Rheumy

Any help would be appreciated.

Vicki

Iowa

[Guest guest]

Vickie and group;

 

Awe hon I am so sorry what an awful time you have had.  Your sleep problem could

be many things or one of many.  I got a sleep study for my sleepy ness and they

found I had sleep apnea. 

 

After I got a c-pap my sleep rhythm went  back to normal.  The best thing you

can do, in my opinion talk to your doctor about the sleep and fatigue problem. 

God bless and take care.

 

The group will be on this so I expect a lot of encouragement for you and

advise. 

 

gentle hugs

Clora

 

*********************************************************

 

From: Vicki <gramvick@...>

Subject: [ ] Searching for answers

Date: Sunday, November 2, 2008, 9:38 PM

I may not post allot on here, but I do read and have learned more about my RA

and Fibro since I joined than I have in the past two years since I was

diagnosed. Reading your stories is like reading so much of my own life,

I do have a couple questions that are still unanswered for me however. I have

rods in my left knee from a bad car accident four years ago. Lately it has been

bothering more that usual. More flare ups, more stress when full weight is

applied, some, but not a lot of swelling, and an icy cold feeling. The pain

slowly spreads to my hips. The only thing that seems to help at all is oxycontin

and a steaming hot bath, and even that is minimal.

My other question is being exhausted all of the time. I drive to work planning

my nap for when I get home, and I drive home counting how many hours I am gonna

get of sleep that night. Last night I slept 14 hours, and still could not barely

get up for work. Once I was there all I wanted to do was hide in my office so I

could sneak some sleep in. Totally both physically and mentally exhausted. On my

days off like tomorrow and Tuesday I do the chemo and then sleep. Even chemo has

never affected me like this before.

oh and I still have the sores in my mouth,

So how do I know what is causing what, which doctor to see?? General Practice,

oncologist or Rheumy

Any help would be appreciated.

Vicki

Iowa

\\\\

[Guest guest]

Hi Vicki - I am so sorry you are struggling so hard right now. You

have so many issues going on besides the RA and FMS. Since you are to

get the chemo today, start there - ask the chemo doctor - let them

know everything. You may need to see your orthopaedic for the knee. I

wonder just how much any of them will be able to help besides the

chemo doctor since that seems to be the top priority right now. Let

them know about the fatigue too. That is pretty scary. Just before I

was diagnosed, I would find myself falling asleep at the wheel even in

the mornings on my way in to work after a good 8+ hours sleep the

night before. Its a scary feeling.

My prayers are with you. Hang in there - ask questions of whatever

doctor you can. Someone should be able to help you with this pain.

Keep us posted. We DO care..........Doreen

>

> I may not post allot on here, but I do read and have learned more

> about my RA and Fibro since I joined than I have in the past two

> years since I was diagnosed. Reading your stories is like reading

> so much of my own life,

>

> I do have a couple questions that are still unanswered for me

> however. I have rods in my left knee from a bad car accident four

> years ago. Lately it has been bothering more that usual. More flare

> ups, more stress when full weight is applied, some, but not a lot

> of swelling, and an icy cold feeling. The pain slowly spreads to

> my hips. The only thing that seems to help at all is oxycontin and

> a steaming hot bath, and even that is minimal.

>

> My other question is being exhausted all of the time. I drive to

> work planning my nap for when I get home, and I drive home counting

> how many hours I am gonna get of sleep that night. Last night I

> slept 14 hours, and still could not barely get up for work. Once I

> was there all I wanted to do was hide in my office so I could sneak

> some sleep in. Totally both physically and mentally exhausted. On

> my days off like tomorrow and Tuesday I do the chemo and then

> sleep. Even chemo has never affected me like this before.

>

> oh and I still have the sores in my mouth,

>

> So how do I know what is causing what, which doctor to see??

> General Practice, oncologist or Rheumy

> Any help would be appreciated.

>

> Vicki

> Iowa

>

[Guest guest]

Cheryl you have Been in my thoughts and prayers. May God bless you. Stay

positive and strong although it may be hard. Trust inthe lord because the

greatest Strength come from faith in God take Care we r here.

[ ] searching for answers

I want to say thanks for all the responses to my previous post - not good news -

I did meet with the leading CML specialist in my area on Monday - and from that

meeting he did confirm that it was not a normal case of CML - it seems that

although the Gleevac is working to block the Ph+ cells from sending blast into

the bloodstream -CML cells in the marrow are cloning itself quite quickly and

most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you

[Guest guest]

I will pray for you. May the LORD bless your treatment

T Tadros

Cml 2003

Gleevec

Sent from my Verizon Wireless BlackBerry

[ ] searching for answers

I want to say thanks for all the responses to my previous post - not good news -

I did meet with the leading CML specialist in my area on Monday - and from that

meeting he did confirm that it was not a normal case of CML - it seems that

although the Gleevac is working to block the Ph+ cells from sending blast into

the bloodstream -CML cells in the marrow are cloning itself quite quickly and

most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

Please keep me and my family in your prayers in the hopes that I can be well

enough for the transplant to take place.

Cheryl

[Guest guest]

Cheryl, I'm sorry that the news isn't better but I must say how impressed I am

that Dr. Lipton was able to do a bone marrow biopsy on Monday and get the

results so quickly. I've literally waited months for results in the past.

All the best,

Tracey

>

> I want to say thanks for all the responses to my previous post - not good news

- I did meet with the leading CML specialist in my area on Monday - and from

that meeting he did confirm that it was not a normal case of CML - it seems that

although the Gleevac is working to block the Ph+ cells from sending blast into

the bloodstream -CML cells in the marrow are cloning itself quite quickly and

most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

>

> Please keep me and my family in your prayers in the hopes that I can be well

enough for the transplant to take place.

>

> Cheryl

>

[Guest guest]

Hi Cheryl.

My thoughts and prayers are with you. I hope that someone can help you with

this problem. Have you tried e-mailing Dr. Druker in addition to Dr. Lipton?

Hugs and Hope.

Sandi

>

> I want to say thanks for all the responses to my previous post - not good news

- I did meet with the leading CML specialist in my area on Monday - and from

that meeting he did confirm that it was not a normal case of CML - it seems that

although the Gleevac is working to block the Ph+ cells from sending blast into

the bloodstream -CML cells in the marrow are cloning itself quite quickly and

most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

>

> Please keep me and my family in your prayers in the hopes that I can be well

enough for the transplant to take place.

>

> Cheryl

>

[Guest guest]

Tracey...Dr. Lipton did not do a bone marrow test - what he did was review the

slides and samples from original BMB - and what he found was that the marrow was

in blast crisis - not 14% as my local doctor told me - as for not presently with

a high WBC, he said that presenting in blast crisis is much like AML but with

the Ph+ gene...he said that the Gleevac seems to be working so far but it

doesn't traditionally keep the disease at bay for very long - because there are

a number of immature white cells that can't keep infections at bay for long...so

that is why they are searching for a donor now as opposed to later... sorry if

my previous info was confusing - having a hard time grasping this...

> >

> > I want to say thanks for all the responses to my previous post - not good

news - I did meet with the leading CML specialist in my area on Monday - and

from that meeting he did confirm that it was not a normal case of CML - it seems

that although the Gleevac is working to block the Ph+ cells from sending blast

into the bloodstream -CML cells in the marrow are cloning itself quite quickly

and most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

> >

> > Please keep me and my family in your prayers in the hopes that I can be well

enough for the transplant to take place.

> >

> > Cheryl

> >

>

[Guest guest]

Cheryl, did Dr. Lipton explain how there could be such a huge discrepancy

between your first doctor's findings (14%) and his (50%)? And did he say if he

wanted to do another biopsy soon to see what condition your marrow is now?

I have seen some people in the past who have been in blast crisis with a very

low white count but their peripheral blood was as full of blasts as their marrow

was (or close). I'm sorry I don't remember how many blasts you had in your

peripheral blood, but I think you said that it was very low?

We have some members who have had a transplant, hopefully some of them will

write with some encouraging words. You may also want to join a BMT list which

will have significantly more experienced people with the process. It's not an

easy process but it can be successful and has saved lives.

Tracey

> > >

> > > I want to say thanks for all the responses to my previous post - not good

news - I did meet with the leading CML specialist in my area on Monday - and

from that meeting he did confirm that it was not a normal case of CML - it seems

that although the Gleevac is working to block the Ph+ cells from sending blast

into the bloodstream -CML cells in the marrow are cloning itself quite quickly

and most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

> > >

> > > Please keep me and my family in your prayers in the hopes that I can be

well enough for the transplant to take place.

> > >

> > > Cheryl

> > >

> >

>

[Guest guest]

Hi Cheryl,

My CML progression was very similar to yours. I just wanted to let you know

that I am a transplant survivor, October 2004. Of course my recovery has not

been uneventful, but manageable. I would be more than happy to discuss the

process that I went through with you through email or by phone. Please contact

me if you want to discuss. I'll post a little of my history so you can see

where I'm coming from. I've posted it here before, but it has been sometime, so

forgive me if many of you have seen this before.

I am now 5 1/4 years post-transplant, October 5, 2004. Thanks again to my lovely

donor sister, Judy.

A little history....I was diagnosed in August of 2002 and was still in

the chronic phase, although the doctor thinks I probably was in my 2nd

year of the disease. I don't know how he could really tell that

except from the symptoms I was having the prior two years, ie, tired

all the time.

I started taking 800mg of glivec in early September of 2002. My WBC

returned to normal from 87K at diagnosis. Other than the standard

side effects, eyes swelling, nausea at times, etc., I was in remission

with a minimal PCR of approximately .014. After about 18 months, my

PCR started to climb dramatically and glivec lost its effectiveness.

I continued taking glivec until I could find an alternative, although

it wasn't working very well for me. I was rapidly approaching the

blast crisis.

My doctor recommended that I find a cancer center of excellence

and get checked out, preferably one that was very familiar with CML.

I decided on MD , and after a couple of months of fighting

with my insurance, I finally showed up on their doorstep.

After I arrived in July of 2004, I was assigned to Dr Kantargian at

the Leukemia clinic for evaluation. After testing, it was determined

that I had entered blast crisis and something needed to be done right

now. He recommended a BMT but said that unless he could return me to

the chronic phase that it would be fruitless. So he recommended that

I go into one of the two trials that were ongoing at the time. The

BMS and AMN trials were both in phase II trials, and were having some

early success. I couldn't get into the BMS trial for six weeks

because of the waiting list. Dr Kantargian was the leading

investigator for the AMN trial so he placed me into that one almost

immediately. No one knew what dosage to use at the beginning since

the trial was so new so we started out at a very low dose to just see

if I would respond.

Within one week my blasts were rapidly reducing. After three weeks I

was at zero blasts. The drug worked and had returned me to the

chronic phase -- where I needed to be for the transplant. While I was

going through this trial my siblings were tested to see if I had a

match. My younger sister was an exact match, although she had numerous antigens

that probably would cause some problems post-transplant, the BMT clinic

proceeded to make all the arrangements to perform the transplant in early

October 2004.

I had the transplant on October 5, 2004 and everything went as smooth

as it could. Of course I had numerous ups and downs the first 100

days, acute GVHD of the skin and liver. These were both successfully

treated with the anti-rejection drug (Prograf) and finally subsided.

I returned home in January 2005 with a PCR that was undetectable and

100 per cent chimerism (donor). I continued to heal at home. I was

weak but happy.

In early March of 2006 my PCRs started coming back with some

positivity, although at a very low level it was very worrisome for me

and my transplant doctor. Later that month I was exhibiting some

extramedulary CML tumor growth in my abdomen, face and lower

extremities. Some of the tumors were removed by surgery and sent to

MD for a biopsy. It turns out that the CML was back and had

tumorized (very rare), although my PCR was still at a very low level, the tumors

were growing out of control.

The choices at that point were to have a DLI, another BMT or wait for

the approval of Sprycel in June of 2006 to see if that would work. I

wanted no part of another transplant unless that was my only option,

and a DLI would be very risky since I had chronic GVHD, so I elected

the Drug approach and started taking 140mg daily of Sprycel in June

2006. Within three weeks the tumors disappeared and were not

detectable by a PET scan...miraculous. My local Oncologist was simply

blown away with the rapid results, and so was I. I have since reduced

the dosage to 60mg daily because of so many GI issues. I've been on

that dosage since.

I have since been checked quarterly by a BMB/BMA, PBPCR and PET scan,

and have been undetectable each time. Obvisously I don't know how

long this remission will last, but I am optimistic that there will

always be another treatment available.

Although I still suffer somewhat from the side effects of Sprycel and

chronic GVHD of the skin, eyes and mouth, I am very happy just to be

walking and talking.

I returned to Houston in November and December 2007 for a three year

post-transplant checkup. I also visited the Ophtha and the GVHD

doctor to see if I could find a better way to treat this disease. The

GVHD doctor recommend Photopheresis (

http://www.lymphomation.org/photopheresis.htm ) and the Ophtha

provided me with a set of contacts that have worked very well in

trapping the moisture next to my cornea and providing some relief from

the extreme dryness.

I decided to do the Photopheresis in Denver at the Transplant Center,

Presbyterian/St Lukes hospital, in conjunction with the Rocky Mountain

Cancer Center. Unfortunately, it didn't provide much relief. The

treatment lasted one year. I got treated twice a week, four hours

each session, every other week. I might mention this treat is quite successful

for about 50% of the patients.

There are some doctors who are very familiar with Sprycel that think

that I could probably stop taking it since my immune system has grown

to be much stronger and appears to be very active as proven by chronic

GVHD. I'm just not brave enough to make that step right now, maybe

some day.

All in all, I'm extremely blessed to be alive today and just wanted to

share this story with you to let you know that there is always

hope. Just keep on keeping on....

The very best to all of you,

Don

> > > >

> > > > I want to say thanks for all the responses to my previous post - not

good news - I did meet with the leading CML specialist in my area on Monday -

and from that meeting he did confirm that it was not a normal case of CML - it

seems that although the Gleevac is working to block the Ph+ cells from sending

blast into the bloodstream -CML cells in the marrow are cloning itself quite

quickly and most of the wbc that are left are quite immature and not able to

fight the disease...what was 14% in the marrow back in November has now grown to

50% - so my case seems to be somewhat aggressive in nature and although didn't

present with a high wbc at dx - I currently have a bleed situation that they are

trying to keep under control...they have not suggested any change in the course

of medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

> > > >

> > > > Please keep me and my family in your prayers in the hopes that I can be

well enough for the transplant to take place.

> > > >

> > > > Cheryl

> > > >

> > >

> >

>

[Guest guest]

Cheryl,

I have never posted to this group, but read all the posts. I too failed Gleevec

and had a stem cell transplant in 2006. I was diagnosed in 2005 and was doing

very well on Gleevec. However, in a two week period, I went from doing great to

blast crisis. I started having rib pain after hiking the Grand Canyon for a

Leukemia fund raiser. I thought it was just due to the heavy pack, but no so.

I am treated at City of Hope and they immediately put me on Tasigna which at the

time was not FDA approved. It did bring me back to chronic phase, but the MD's

were very concerned at how quick I went into blast crisis. They recommended

transplant because they wouldn't have much to offer me to put me back in chronic

phase if the Tasigna failed like Gleevec.

I can't fib and say the transplant was easy, and I'm still dealing with issues.

I had very severe GVHD, but the graft vs leukemia effect is still keeping me

PCRU. Due to the GVHD, I was on steroids for quite a long time as I couldn't

tolerate the other newer line of immunosuppresants. The steroids caused a lot

of side effects. I developed osteoporosis and have suffered fractures. It also

caused my hip to to become necrotic and I had a hip replacement. I also

developed cataracts. Those are just a few of the big issues. I seem to still

come up with something new monthly related to transplant.

I haven't been able to go back to work, but I really had so many problems on

Gleevec that working as an RN was really hard as well. I have a " new normal "

life and I have survived to be a grandma of two beautiful little ones. I truly

believe that if I didn't have the transplant, I would have never been around to

love these wonderful babies.

I know it is a big decision, but if you choose to have the transplant, we are

out here to support you.

> > >

> > > I want to say thanks for all the responses to my previous post - not good

news - I did meet with the leading CML specialist in my area on Monday - and

from that meeting he did confirm that it was not a normal case of CML - it seems

that although the Gleevac is working to block the Ph+ cells from sending blast

into the bloodstream -CML cells in the marrow are cloning itself quite quickly

and most of the wbc that are left are quite immature and not able to fight the

disease...what was 14% in the marrow back in November has now grown to 50% - so

my case seems to be somewhat aggressive in nature and although didn't present

with a high wbc at dx - I currently have a bleed situation that they are trying

to keep under control...they have not suggested any change in the course of

medication as of yet..however I will be emailing Dr. Lipton today myself in

hopes of getting better answers..I just want to say thank you for all the

support you have given me - there truly is nothing like the kindness of

strangers and you all have been wonderful...I'm not sure if I will get to post

much in the coming days - they are searching the registry for a donor and I was

told that it could take up to 3 months to get ready for a transplant and they

are hoping to do what they can to keep the disease at bay long enough for that

to be done...

> > >

> > > Please keep me and my family in your prayers in the hopes that I can be

well enough for the transplant to take place.

> > >

> > > Cheryl

> > >

> >

>

[Guest guest]

It did bring me back to chronic phase, but the MD's were very concerned at how

quick I went into blast crisis. They recommended transplant because they

wouldn't have much to offer me to put me back in chronic phase if the Tasigna

failed like Gleevec.

>

> I can't fib and say the transplant was easy, and I'm still dealing with

issues.

>

____________________________

Hi ,

I am glad that you posted this time. It is really important for people to know

about those who really had to have a transplant, the ordeal that it is and that

you can survive it and have a " new normal " kind of live. When most of us are

negative about transplants, it is because we are not in the situation where it

is the best choice left to us.

I am sure that in comparison to the other option, your life with your

grandbabies is wonderful for you.

(Thanks also for Don posting about his transplant ordeal). You are both true CML

warriors/survivors.

C.

[Guest guest]

Thanks for your kind words.

I agree with , transplant has not been easy, your life will forever change.

My humble advice to everyone is to please, please exhaust all drug remedies

before transplant. if possible.

I, like , had no other option. Tasigna did return me to the chronic phase,

but I had entered blast crisis so fast, like julie, that the docs were skeptical

that the drug would work again if I relapsed. My CML was quite aggressive.

I don't want to scare anyone unnecessarily about transplant. If that is your

only option left, it's a darn good one. There is life after transplant, you

just have to adjust -- and after all you are still here.

Love to all,

Don,

> It did bring me back to chronic phase, but the MD's were very concerned at

how quick I went into blast crisis. They recommended transplant because they

wouldn't have much to offer me to put me back in chronic phase if the Tasigna

failed like Gleevec.

> >

> > I can't fib and say the transplant was easy, and I'm still dealing with

issues.

>

> >

> ____________________________

>

> Hi ,

> I am glad that you posted this time. It is really important for people to know

about those who really had to have a transplant, the ordeal that it is and that

you can survive it and have a " new normal " kind of live. When most of us are

negative about transplants, it is because we are not in the situation where it

is the best choice left to us.

>

> I am sure that in comparison to the other option, your life with your

grandbabies is wonderful for you.

>

> (Thanks also for Don posting about his transplant ordeal). You are both true

CML warriors/survivors.

>

> C.

>

[Guest guest]

O!!! YIPPEEE!!!

Number 1296 in the Zero Club

Zavie

_____

From: [mailto: ] On Behalf Of

juliek423

Sent: January-22-10 11:13 AM

Subject: [ ] Re: searching for answers

Cheryl,

I have never posted to this group, but read all the posts. I too failed

Gleevec and had a stem cell transplant in 2006. I was diagnosed in 2005 and

was doing very well on Gleevec. However, in a two week period, I went from

doing great to blast crisis. I started having rib pain after hiking the

Grand Canyon for a Leukemia fund raiser. I thought it was just due to the

heavy pack, but no so. I am treated at City of Hope and they immediately put

me on Tasigna which at the time was not FDA approved. It did bring me back

to chronic phase, but the MD's were very concerned at how quick I went into

blast crisis. They recommended transplant because they wouldn't have much to

offer me to put me back in chronic phase if the Tasigna failed like Gleevec.

I can't fib and say the transplant was easy, and I'm still dealing with

issues. I had very severe GVHD, but the graft vs leukemia effect is still

keeping me PCRU. Due to the GVHD, I was on steroids for quite a long time as

I couldn't tolerate the other newer line of immunosuppresants. The steroids

caused a lot of side effects. I developed osteoporosis and have suffered

fractures. It also caused my hip to to become necrotic and I had a hip

replacement. I also developed cataracts. Those are just a few of the big

issues. I seem to still come up with something new monthly related to

transplant.

I haven't been able to go back to work, but I really had so many problems on

Gleevec that working as an RN was really hard as well. I have a " new normal "

life and I have survived to be a grandma of two beautiful little ones. I

truly believe that if I didn't have the transplant, I would have never been

around to love these wonderful babies.

I know it is a big decision, but if you choose to have the transplant, we

are out here to support you.

> > >

> > > I want to say thanks for all the responses to my previous post - not

good news - I did meet with the leading CML specialist in my area on Monday

- and from that meeting he did confirm that it was not a normal case of CML

- it seems that although the Gleevac is working to block the Ph+ cells from

sending blast into the bloodstream -CML cells in the marrow are cloning

itself quite quickly and most of the wbc that are left are quite immature

and not able to fight the disease...what was 14% in the marrow back in

November has now grown to 50% - so my case seems to be somewhat aggressive

in nature and although didn't present with a high wbc at dx - I currently

have a bleed situation that they are trying to keep under control...they

have not suggested any change in the course of medication as of yet..however

I will be emailing Dr. Lipton today myself in hopes of getting better

answers..I just want to say thank you for all the support you have given me

- there truly is nothing like the kindness of strangers and you all have

been wonderful...I'm not sure if I will get to post much in the coming days

- they are searching the registry for a donor and I was told that it could

take up to 3 months to get ready for a transplant and they are hoping to do

what they can to keep the disease at bay long enough for that to be done...

> > >

> > > Please keep me and my family in your prayers in the hopes that I can

be well enough for the transplant to take place.

> > >

> > > Cheryl

> > >

> >

>