Re: Brother Newly Diagnosed with CML

[Guest guest]

Maureen-

Welcome to the group and sorry its under these circumstances. I was 33 at

dx with 3 small children. Life changing event for anyone. I am so happy that

your brother has an involved advocate such as yourself working on his side.

He needs support and this is where to get it. From people walking in his

shoes. This is not a death sentence and the docs report that the majority of

us will live long lives with medications as this is a chronic disease.

I have been on Gleevec 800mg and live an almost normal life as I suffer from

pretty intense side effects, something I am in the process of reducing. I

have never had a problem with biopsy such as his but I have had a horrible

first one with intense pain for 3 weeks, a crazy ridiculous bruise as well as a

gaping hole. I have very low platelets so I bruise easily and bleed long.

I have also a brother and a sister with no match and with 3 young kids,

transplant is not an option at this time. Too risky for me to take right now.

Gleevec as me in a deep remission with a 3 log reduction and I want to just

ride this out as long as it still works. There are a number of drugs to switch

to should it stop working.

I would point out to stay active in his care, you guys talk to the docs and

call the shots. Be an advocate for yourselves. If you are not seeing a CML

specialist, I encourage you to do so, as they are the best!!! I live in St.

Louis Missouri but I see Dr. Mauro in Portland Oregon at OSHU. He is totally

a world wealth of information and very much worth the trip. Check his

medical insurance as he should have transplant benefits that will pay for him

to

travel to see a specialist for a second opinion as well as southwest airlines

will pay for a round trip ticket once yearly for medical treatment for him

and a caregiver. These are all things I have learned along the way that people

don't always think about. I would be happy to talk to you or him if you'd

like.

Stay informed and comment here often. There are a lot of people on here

that are living the same problems, complaints and its a good sounding board.

There is a lot of caring people here with great advice.

Best of luck and stay positive.

Hugs-

35

CML 5/13/05

Gleevec 800mg (currently on hold for stem cell harvest)

Wife and mother of 3 (11,8,6)

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[Guest guest]

Maureen:

I am so sorry to hear about your brother. Whether

you are young or old, it is never welcome news.

However, I think that over time your brother will

adjust to his diagnosis and new life and be able

to resume most of the activities that he was doing before.

I too had a very painful first bone marrow biopsy (BMB).

The person who did them actually put the needle in four

separate times before she found a spot to draw marrow.

I was sore for quite a while, but you learn that after you

have a BMB that you can walk and that helps with the

pain later. And if your brother goes to a Leukemia Specialty

Clinic like Dana Farber, MD , or Sloan Ketterling,

they will have people who do them often and they are much

less painful.

I am sure you will get a lot of data on the difference between

Gleevec and a Bone Marrow Transplant (BMT). Most top

Leukemia doctors will tell you that the front line therapy for

CML is 400mg to 800mg of Gleevec each day. The response

rate is over 87% and most people reach hematological

remission within a short period of time and a major cytogenic

response within one year. On the other hand, the loss rates

for BMT's are much higher and the risks much greater, and

there are some that even relapse after a BMT.

I encourage you to contact top notch specialist on CML and

get your brother seen and get baseline studies. They will work

with your local oncologist to set up treatment protocols and

dosages. They will also answer all of the questions that you

have in the early stages. Believe me, we have all been there

and we were all scared, but over time we learned how to combat

CML and how to live our new lives. He will learn the same, but

it does take time, energy and knowledge.

There are some great people that will send you data including

the Lance Armstrong Foundation (Livestrong.org) and CancerCare.org.

They have free information that they will send to you or even set up

counselors to help you. Also you local Leukemia Society will be able

to set you up with their " First Responders " Program, a kind of mentoring

program that will allow you to speak with other CMLers in his area.

Besides Gleevec there is another drug, Sprycel on the market and

another waiting for approval. He will have many options for good

health. And over time, you will see that he will be just fine.

I hope you know that people here will answer questions posted or

sent in private, so ask anything you want. Nothing is sacred or

off limits.

Also it helps to have a goal, so tell him that on this board Zavie

has a zero club and his goal is to reach it. Zavie can tell you

more and he and Tracey have forgotten more than I will probably

ever know about CML.

May God bless you on this journey.

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 8/30/2007 8:09:02 A.M. Eastern Standard Time,

MaureenUW@... writes:

Hello,

My name is Maureen and my brother , who just turned 23 (and was

seemingly the picture of health, an avid and fit skateboarder) was diagnosed

with CML about 2 weeks ago. What led to the diagnosis was the blurring of

the vision in one of his eyes which was determined to be 6 small

hemorrhages. Upon a physical later that day, his spleen was also found to

be enlarged and a blood test confirmed results. Once the diagnosis was

known, other symptoms fell into place that had previously been unexplained

including odd bruising for up to a year and strange rashes as well as severe

hip pain.

Unfortunately, had a terrible experience with his bone marrow biopsy

and has been in the hospital for almost 2 weeks now. The night of the

biopsy, had horrible pain in his right hip (same side as the biopsy)

and had to go to the emergency room. The next night, same thing, and was

sent home with oral pain killers that were not managing the pain. Finally

the next morning he was admitted to the hospital and the doctors saw a small

area on a CT scan that could be either an abcess, a hematoma, or a

collection of leukemia cells. To make a long story short, after more tests

and several scary days, they finally became convinced that it was a hematoma

resulting from bleeding caused by the biopsy. ( also bled profusely

from the biopsy site for the first few days and the wound continued to ooze

for almost 10 days and was surrounded by a horrible bruise.)

Unfortunately, this bleeding inflamed the surrounding muscle and pressed on

his femoral nerve and as a result, his leg is completely numb on the front

side and he is unable to control upward movement or walk normally. He has

been on heavy painkillers but they are slowly getting the pain under

control. It seems that the only thing to do with a hematoma is to wait for

the body to reabsorb the blood and that hopefully over time the inflamation

will subside and his nerve will recover and regenerate but they say this may

take months. We are hopeful he can come home tomorrow.

So it has been very trying for him having this horrible experience on top of

the initial diagnosis!

On the positive side, his white blood cell count which was very high at

diagnosis (256 I believe) was brought down to very low levels (almost too

low, so they are now watching that) with Gleevec and Hydroxyurea. His RBC

count also went down quite low and he has to receive a transfusion.

The doctors think he may have a clotting or bleeding problem or perhaps an

artery or vein was nicked during the biopsy.

I'm curious if anyone else knows of someone experiencing a similar

complication with biopsy - anything like this bleeding and nerve damage?

Also anxious to reach out to others who were around 's age at diagnosis

since this typically presents in people much older than him.

Also love to get links to info about the latest information on Gleevec and

what's the longest someone has been on it and in remission? I see lots of

info on the web but so much of it is old.

And any advice in seeking 2nd opinion and weighing the decision for staying

on Gleevec vs. transplantation being done sooner, espeically for someone as

young as he is. (especially looking for doctors in the midwest, he's living

in Wisconsin right now).

And any tips for CML-specific resources out there?

We have started the process to see if I am a match for him (I'm his only

sibling) just so we know our options.

Thanks,

Maureen

[Non-text portions of this message have been removed]

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[Guest guest]

While I am 35, I also felt I was too young to be diagnosed with any form of

cancer. I was 34.

I tell him to hang in there. The beginning was the hardest because of all the

medications that I was taking simultaneously, including procrit shots to address

my anemia, low RBC and hemoglobin.

Now that I am just taking the Gleevec, the side effects have subsided. I have

some, but manageable, fatigue and weight gain.

As far as the complications from the Bone Marrow test, I am so sorry for him.

My test was quick and relatively pain free. The wound was small, very clean and

healed immediately. It worries me that this happenened from what today is a

common and routine test. Maybe, based on that, you should look for a different

medical provider. I do not mean to scare you as there are many doctirs out

there that are excellent in treating this disease.

It sounds like good news that his Blood count is responding so quickly to the

Gleevec and Hydroxyuera

Good Luck!!! We pray for recovery of your brother

" Maureen M. O'Brien " <MaureenUW@...> wrote:

Hello,

My name is Maureen and my brother , who just turned 23 (and was

seemingly the picture of health, an avid and fit skateboarder) was diagnosed

with CML about 2 weeks ago. What led to the diagnosis was the blurring of

the vision in one of his eyes which was determined to be 6 small

hemorrhages. Upon a physical later that day, his spleen was also found to

be enlarged and a blood test confirmed results. Once the diagnosis was

known, other symptoms fell into place that had previously been unexplained

including odd bruising for up to a year and strange rashes as well as severe

hip pain.

Unfortunately, had a terrible experience with his bone marrow biopsy

and has been in the hospital for almost 2 weeks now. The night of the

biopsy, had horrible pain in his right hip (same side as the biopsy)

and had to go to the emergency room. The next night, same thing, and was

sent home with oral pain killers that were not managing the pain. Finally

the next morning he was admitted to the hospital and the doctors saw a small

area on a CT scan that could be either an abcess, a hematoma, or a

collection of leukemia cells. To make a long story short, after more tests

and several scary days, they finally became convinced that it was a hematoma

resulting from bleeding caused by the biopsy. ( also bled profusely

from the biopsy site for the first few days and the wound continued to ooze

for almost 10 days and was surrounded by a horrible bruise.)

Unfortunately, this bleeding inflamed the surrounding muscle and pressed on

his femoral nerve and as a result, his leg is completely numb on the front

side and he is unable to control upward movement or walk normally. He has

been on heavy painkillers but they are slowly getting the pain under

control. It seems that the only thing to do with a hematoma is to wait for

the body to reabsorb the blood and that hopefully over time the inflamation

will subside and his nerve will recover and regenerate but they say this may

take months. We are hopeful he can come home tomorrow.

So it has been very trying for him having this horrible experience on top of

the initial diagnosis!

On the positive side, his white blood cell count which was very high at

diagnosis (256 I believe) was brought down to very low levels (almost too

low, so they are now watching that) with Gleevec and Hydroxyurea. His RBC

count also went down quite low and he has to receive a transfusion.

The doctors think he may have a clotting or bleeding problem or perhaps an

artery or vein was nicked during the biopsy.

I'm curious if anyone else knows of someone experiencing a similar

complication with biopsy - anything like this bleeding and nerve damage?

Also anxious to reach out to others who were around 's age at diagnosis

since this typically presents in people much older than him.

Also love to get links to info about the latest information on Gleevec and

what's the longest someone has been on it and in remission? I see lots of

info on the web but so much of it is old.

And any advice in seeking 2nd opinion and weighing the decision for staying

on Gleevec vs. transplantation being done sooner, espeically for someone as

young as he is. (especially looking for doctors in the midwest, he's living

in Wisconsin right now).

And any tips for CML-specific resources out there?

We have started the process to see if I am a match for him (I'm his only

sibling) just so we know our options.

Thanks,

Maureen

[Guest guest]

Maureen,

Sorry to hear about your brother I was in my late 30's when I was dxed, but

I recommend is if he can tolerate Gleevec keep taking it and forget about

the transplant.

Terry

On 8/30/07, mtmaynor@... <mtmaynor@...> wrote:

>

>

>

> Maureen:

>

> I am so sorry to hear about your brother. Whether

> you are young or old, it is never welcome news.

> However, I think that over time your brother will

> adjust to his diagnosis and new life and be able

> to resume most of the activities that he was doing before.

>

> I too had a very painful first bone marrow biopsy (BMB).

> The person who did them actually put the needle in four

> separate times before she found a spot to draw marrow.

> I was sore for quite a while, but you learn that after you

> have a BMB that you can walk and that helps with the

> pain later. And if your brother goes to a Leukemia Specialty

> Clinic like Dana Farber, MD , or Sloan Ketterling,

> they will have people who do them often and they are much

> less painful.

>

> I am sure you will get a lot of data on the difference between

> Gleevec and a Bone Marrow Transplant (BMT). Most top

> Leukemia doctors will tell you that the front line therapy for

> CML is 400mg to 800mg of Gleevec each day. The response

> rate is over 87% and most people reach hematological

> remission within a short period of time and a major cytogenic

> response within one year. On the other hand, the loss rates

> for BMT's are much higher and the risks much greater, and

> there are some that even relapse after a BMT.

>

> I encourage you to contact top notch specialist on CML and

> get your brother seen and get baseline studies. They will work

> with your local oncologist to set up treatment protocols and

> dosages. They will also answer all of the questions that you

> have in the early stages. Believe me, we have all been there

> and we were all scared, but over time we learned how to combat

> CML and how to live our new lives. He will learn the same, but

> it does take time, energy and knowledge.

>

> There are some great people that will send you data including

> the Lance Armstrong Foundation (Livestrong.org) and CancerCare.org.

> They have free information that they will send to you or even set up

> counselors to help you. Also you local Leukemia Society will be able

> to set you up with their " First Responders " Program, a kind of mentoring

> program that will allow you to speak with other CMLers in his area.

>

> Besides Gleevec there is another drug, Sprycel on the market and

> another waiting for approval. He will have many options for good

> health. And over time, you will see that he will be just fine.

>

> I hope you know that people here will answer questions posted or

> sent in private, so ask anything you want. Nothing is sacred or

> off limits.

>

> Also it helps to have a goal, so tell him that on this board Zavie

> has a zero club and his goal is to reach it. Zavie can tell you

> more and he and Tracey have forgotten more than I will probably

> ever know about CML.

>

> May God bless you on this journey.

>

> Sincerely,

>

> Matt

> Zero Club #1078

> ville, Florida

> Dx January of 2005

> Gleevec since March of 2005

> Treated at MD

> Father of 3

>

> In a message dated 8/30/2007 8:09:02 A.M. Eastern Standard Time,

> MaureenUW@... <MaureenUW%40gmail.com> writes:

>

> Hello,

>

> My name is Maureen and my brother , who just turned 23 (and was

> seemingly the picture of health, an avid and fit skateboarder) was

> diagnosed

> with CML about 2 weeks ago. What led to the diagnosis was the blurring of

> the vision in one of his eyes which was determined to be 6 small

> hemorrhages. Upon a physical later that day, his spleen was also found to

> be enlarged and a blood test confirmed results. Once the diagnosis was

> known, other symptoms fell into place that had previously been unexplained

> including odd bruising for up to a year and strange rashes as well as

> severe

> hip pain.

>

> Unfortunately, had a terrible experience with his bone marrow biopsy

> and has been in the hospital for almost 2 weeks now. The night of the

> biopsy, had horrible pain in his right hip (same side as the biopsy)

> and had to go to the emergency room. The next night, same thing, and was

> sent home with oral pain killers that were not managing the pain. Finally

> the next morning he was admitted to the hospital and the doctors saw a

> small

> area on a CT scan that could be either an abcess, a hematoma, or a

> collection of leukemia cells. To make a long story short, after more tests

> and several scary days, they finally became convinced that it was a

> hematoma

> resulting from bleeding caused by the biopsy. ( also bled profusely

> from the biopsy site for the first few days and the wound continued to

> ooze

> for almost 10 days and was surrounded by a horrible bruise.)

>

> Unfortunately, this bleeding inflamed the surrounding muscle and pressed

> on

> his femoral nerve and as a result, his leg is completely numb on the front

> side and he is unable to control upward movement or walk normally. He has

> been on heavy painkillers but they are slowly getting the pain under

> control. It seems that the only thing to do with a hematoma is to wait for

> the body to reabsorb the blood and that hopefully over time the

> inflamation

> will subside and his nerve will recover and regenerate but they say this

> may

>

> take months. We are hopeful he can come home tomorrow.

>

> So it has been very trying for him having this horrible experience on top

> of

> the initial diagnosis!

>

> On the positive side, his white blood cell count which was very high at

> diagnosis (256 I believe) was brought down to very low levels (almost too

> low, so they are now watching that) with Gleevec and Hydroxyurea. His RBC

> count also went down quite low and he has to receive a transfusion.

>

> The doctors think he may have a clotting or bleeding problem or perhaps an

> artery or vein was nicked during the biopsy.

>

> I'm curious if anyone else knows of someone experiencing a similar

> complication with biopsy - anything like this bleeding and nerve damage?

>

> Also anxious to reach out to others who were around 's age at

> diagnosis

> since this typically presents in people much older than him.

>

> Also love to get links to info about the latest information on Gleevec and

> what's the longest someone has been on it and in remission? I see lots of

> info on the web but so much of it is old.

>

> And any advice in seeking 2nd opinion and weighing the decision for

> staying

> on Gleevec vs. transplantation being done sooner, espeically for someone

> as

> young as he is. (especially looking for doctors in the midwest, he's

> living

> in Wisconsin right now).

>

> And any tips for CML-specific resources out there?

>

> We have started the process to see if I am a match for him (I'm his only

> sibling) just so we know our options.

>

> Thanks,

>

> Maureen

>

>

[Guest guest]

Hello Maureen

I am so sorry to hear about your brother's diagnosis, and also the

troubles he has had since then. I know this all takes a great toll

on all of you too and dealing with the added problems must just add

to that stress tremendously.

My son, , was 22 when diagnosed with cml in March last year. He

had a wbc of 192 000 and was started on Gleevec a week after

diagnosis and is still doing great. He has a full time job and goes

to night school three evenings a week. His white count is

consistantly low at around 3.9 but this does not seem to effect him

much at all.

He has a very good attitude towards this disease and it seems as if

it has really given him even more reason to live his life to the

fullest.

has had 2 bone marrow biopsies, neither of them pleasant at

all, but nothing like 's experience! I sat with through

his, but my heart hurts at the thought of 's pain and

discomfort. :-(

This is a wonderful site for information, help and support, as is the

Asia board. It is scary to look up cml on the internet as often

an old site is found and the information is scary.

The very best thing we did for was to take him to see Dr

Druker at OHSU. sang when we got out of there - the first

time I had heard this 'kid' sing! LOL. We were told that as long as

he responds to Gleevec or the other meds out there for cml, we should

not look at transplant at this stage. has not got a match

with his siblings, but there is one on the donor list in case.

And - proudly holds Number 987 in Zavie's Zero Club!

Maureen, I hope that gets to feeling better soon and gets to

come home tomorrow. The first few months are the worst, and of

course I can only speak from my place, a mom - an outsider to cml.

But it does get easier - I see it in my son's smile. I see it in his

life. I feel it in my heart.

I have a blog that has a few links on it to other cml sites and also

to other people's blogs who are dealing with cml. Maybe those links

can help you too. It's at www.livingwithcml.blogspot.com

Sending you all a hug and the very best wishes for .

Love and light

Annie

www.livingwithcml.blogspot.com

>

> Hello,

>

> My name is Maureen and my brother , who just turned 23 (and was

> seemingly the picture of health, an avid and fit skateboarder) was

diagnosed

> with CML about 2 weeks ago. What led to the diagnosis was the

blurring of

> the vision in one of his eyes which was determined to be 6 small

> hemorrhages. Upon a physical later that day, his spleen was also

found to

> be enlarged and a blood test confirmed results. Once the diagnosis

was

> known, other symptoms fell into place that had previously been

unexplained

> including odd bruising for up to a year and strange rashes as well

as severe

> hip pain.

>

> Unfortunately, had a terrible experience with his bone marrow

biopsy

> and has been in the hospital for almost 2 weeks now. The night of

the

> biopsy, had horrible pain in his right hip (same side as the

biopsy)

> and had to go to the emergency room. The next night, same thing,

and was

> sent home with oral pain killers that were not managing the pain.

Finally

> the next morning he was admitted to the hospital and the doctors

saw a small

> area on a CT scan that could be either an abcess, a hematoma, or a

> collection of leukemia cells. To make a long story short, after

more tests

> and several scary days, they finally became convinced that it was a

hematoma

> resulting from bleeding caused by the biopsy. ( also bled

profusely

> from the biopsy site for the first few days and the wound continued

to ooze

> for almost 10 days and was surrounded by a horrible bruise.)

>

> Unfortunately, this bleeding inflamed the surrounding muscle and

pressed on

> his femoral nerve and as a result, his leg is completely numb on

the front

> side and he is unable to control upward movement or walk normally.

He has

> been on heavy painkillers but they are slowly getting the pain under

> control. It seems that the only thing to do with a hematoma is to

wait for

> the body to reabsorb the blood and that hopefully over time the

inflamation

> will subside and his nerve will recover and regenerate but they say

this may

>

> take months. We are hopeful he can come home tomorrow.

>

> So it has been very trying for him having this horrible experience

on top of

> the initial diagnosis!

>

> On the positive side, his white blood cell count which was very

high at

> diagnosis (256 I believe) was brought down to very low levels

(almost too

> low, so they are now watching that) with Gleevec and Hydroxyurea.

His RBC

> count also went down quite low and he has to receive a transfusion.

>

> The doctors think he may have a clotting or bleeding problem or

perhaps an

> artery or vein was nicked during the biopsy.

>

> I'm curious if anyone else knows of someone experiencing a similar

> complication with biopsy - anything like this bleeding and nerve

damage?

>

> Also anxious to reach out to others who were around 's age at

diagnosis

> since this typically presents in people much older than him.

>

> Also love to get links to info about the latest information on

Gleevec and

> what's the longest someone has been on it and in remission? I see

lots of

> info on the web but so much of it is old.

>

> And any advice in seeking 2nd opinion and weighing the decision for

staying

> on Gleevec vs. transplantation being done sooner, espeically for

someone as

> young as he is. (especially looking for doctors in the midwest,

he's living

> in Wisconsin right now).

>

> And any tips for CML-specific resources out there?

>

> We have started the process to see if I am a match for him (I'm his

only

> sibling) just so we know our options.

>

> Thanks,

>

> Maureen

>

>

>