[CMLHope] Re: Bone growth delayed in 12 yr. old-Cheryl-Anne

Fri, 08 Sep 2006 10:32:48 -0700

Parents of children with CML have to make hard decisions and not all of them want to share their experience with others. In your various posts you tried to compare CML to other unrelated diseases for which BMT's have had a better success rate, went off about why should anyone want to take drugs, etc. While the things you said are your opinion and even if not factually based that came across in the wrong way to the group.

Rob

On 9/8/06, Cheryl-Anne <[EMAIL PROTECTED]> wrote:

Anjana,

I am not so sure why you or anyone would be offended about my posts.
But, this is the internet-stranger things have happened.

You do like to teach people Anjana, and that is not an insult, there
are a number of people who benefit from it - I am glad you do it too!

As a CML patient I asked a well meaning quesiton of a mother and I
thoroughly appreciated her reply.  In the future I shall ask those
questions privately.  The point is that we all look at this disease in
a different way.  You have your way of deciphering the statisics and
someone has another way.  We will do what works best for us.

You make good points on your post and thanks for taking the time to
present your perspective, it does provide a great amount of insight.
This comment is not meant to be sarcastic - I really mean it.

I see you are doing very well with your writing courses!  Again, not
being sarcastic just making an observation, you do write well.

This discussion started because I asked a mother to give us information
on what made her decide not to go for a BMT for her son.  Not once did
I suggest that I was judging her decision.  In fact, I was not judging
her decision.  Some many people have mis judged my remarks.  Instead of
asking me directly for clarification.

What I have merely pointed out was this:  We all are happy for Gleevec
and Sprycel, and that there is more than one way to approach this
situation.  That's all!  I am as we all are grateful for the progress
on the drug front, but also very grateful for the progress on the BMT
front.

Yes, our enthusiasm does drive research and plays an important role in
it too!  There are numerous ways to show your enthusiasm.  Just google
patient advocacy groups - there are quite a number of them.

For the record, informaiton needs to be presented fairly and without
bias.  All approaches need to be given equal opportunity.  The only
thing I find annoying is that this rarely happens - and no I am not
saying that with you particularly Anjana, I am saying that as a general
comment.

Again, not you specifically Anjana - but it is rather annoying when
fellow CMLers go against fellow CMLers over the choice of treatment.
There are over 100,000 CML patients in this world only about 10,000
frequent any of these lists.  There are patients out there on
treatments that are working for them that we have probably not even
heard about yet.  And good for them.

Good for all of us actually!

Cheers and have a wonderful day,
Cheryl-Anne


http://neworleansemail.com
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