RE: Re: Brother Newly Diagnosed with CML

[Guest guest]

Maureen:

welcome to the group and so sorry you have to be here. As the others have

said, be active in the treatments, you guys are the boss.

My situation was very similar to your brother's. But, 6 months on Gleevec

and doing well, I have even gotten used to having this and can now say it

just a small part of me. It no longer is defining me as it did in the

beginning. This too will come about for your brother and you. So great you

are there

for him!

Chris

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Maureen--

I, too want to tell you how much easier things get after the initial shock

of diagnosis. And, the events that happened to your brother are too bad...I

was so sorry to read of it.

My husband is only 34 and was diagnosed last year...our first child was just

born 2 months before, so a shocking time for us. My husband was an " out of

the norm " patient as well...presented with a 449,000 WBC but more

troublesome was the hematoma in his brain that caused a stroke on his left

side of his body, left him partially paralyzed on his left side and his

speech was affected. It resulted in 3 emegency brain surgeries in a matter

of days. He is still missing a piece of his skull due to the surgeries! But,

he regained all feeling and movement in his body, and all speech, and though

he spent close to 3 weeks in the ICU and another month in an isolation room

(due to severe neutropenia), he is fully recovered..except, well, for the

CML! But - if you could see him now! He already had to stop Gleevec due to

liver intolerance, but is now on Sprycel and doing excellent. Suffers from

some fatigue, has some anxiety here and there that he never had before, but

all in all is leading a pretty " normal " life....a very normal life,

actually. He has become the stay at home parent due to all of this, our son

is 16 months old now..his name is Luke. He is into EVERYTHING...and is

nonstop. I always joke with my husband that I bet his fatigue is not due to

leukemia - but due to LUKE-emia (agian, our toddler's name is Luke!).

So, please know that it does get easier. I can attest to that as well as so

many other members of this forum. And use this forum to gain as much

knowledge and insight as you can...I have found it to be so helpful and it

eased me of so many fears and unknowns.

I pray for your brother, you and your entire family. I agree with the

previous poster, Annie, when she said that the diagnosis of CML has given

her son " even more reason to live his life to the

fullest. " . I can say the same goes for my husband. Life is so much sweeter

now.

I also want to agree with Annie about seeing Dr. Druker - probably the

leading CML specialist in the world. We just went to see him in July and

wow! A wealth of knowledge and just the nicest man, too. It put my husband's

mind at ease just to know we now have a relationship with the leading

specialist, and the man responsible for developing GLeevec.

Take care and keep your chin up (even though I know how hard it might be

right now)...it's not great having CML, but at least we live in a great time

to have it...the advances being made these days are mind blowing and I have

all the hope in the world that we will see a cure in my husband's lifetime.

Regards,

Cervera

wife of Cervera, dgnsd 7-2006

was on 400mg / Gleevec (stopped due to liver intolerance)

Now on 140mg Sprycel

>From: " Annie " <ibannie@...>

>Reply-

>

>Subject: [ ] Re: Brother Newly Diagnosed with CML

>Date: Thu, 30 Aug 2007 19:35:41 -0000

>

>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

> >

> >

> >