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

Thu, 07 Sep 2006 12:51:37 -0700

Hi all,
 
I am thankful I never have had to make such a choice for my son, and I hope I never have to. I know it was much easier for me to decide the route to go being 38 when I was dxed. I was told at that time by my doc that my survival rate was 50%, and call me vain, but I have had long hair for pretty much my entire adult life and would not be happy losing it...lol. My friend teased me a little about Gleevec side effects saying if I grew a third arm I could make a fortune, but all joking aside, I do agree it is a families individual decision(and depending on the age of the child theirs as well) to make. It has to be a tough thing to do. As Cheryl-Anne has pointed out, they really do not know what possible side effects there might be from a very long term treatment with the drugs that keep us CML patients alive. Having said that, I know personally, if I had such a horrible choice to make with my 12 year old son, I am not sure exactly what I would do. When my son Nick was only 2 he had a non-cancerous tumor removed from his skull and just seeing him in that hospital bed with stitches going along the side of his head tore me up.
Kary and Suzanne, my heart goes out to both of you, and neither of you should ever feel bad for the choices you made. Regardless of how things turn out, you made them out of love for your children, and god knows there are way to many kids out there who's parents could give a rat's you know what about them. I hope both Adam and Tony come out of this okay. We all know how cruel kids can be and I know it has to be really rough on Adam.
I guess my two cents on this is that it is not so much the quantity of life, but the quality. Here again though, either way you go, neither direction is a guarantee of having either. The sad fact is there is still no real cure. If you go the BMT route they could die right off the bat, or it may not cure it, and your back where you started. If you go the Gleevec route, then they have to take the meds and deal with the side effects. So really there is no total "right" way to go with a child, or even an adult for that matter.
If I were guaranteed I would be cured by a BMT and live, your damn right I would jump on it, even with having to go through what that would entail, but the fact is there is no way that can happen right now. So in my case, and actually the more I have thought about it, even in the case of having to decide for my son Nick, I think I would go the Gleevec route.
Yeah it is like playing Russian roulette, getting blood work and praying the meds keep working, and it sucks having the side effects I have, but at least for now I am able to live a semi normal life.
Another point Cheryl-Anne made I agree with is the fact of the money being made from our disease. I know there are research cost, manufacturing, etc..but the money aspect is very scary, because we all know companies can say what they want, but they all really want to make as much money as they can. I do not see any head of a drug company offering to reduce their salaries to a realistic level to help make their drugs more affordable, and I do not see Gleevec being given away for free to those that need it.
I wish everyone the best and hang in there,
 
Terry
 
On 9/7/06, Cheryl-Anne <[EMAIL PROTECTED]> wrote:

Hi kary,

Thank you for your very thoughtful reply.  I do understand what your
concerns are, I have in some ways, gone through them myself.  Let's
keep our fingers crossed that perhaps vaccines or immune therapy will
help some of the younger ones sooner than later.  My concern, and this
is of course genuine, and you have to know that I much rather prefer to
state what I am thinking up front - is that when we see young children
on this as of yet undetermined long term therapy and know that for all
its good there are some very serious side effects that will no doubt
plague children well beyond their childhood (but at least they'll be
alive), it just makes me wonder.  Even I have re thought about the BMT
route, so far Gleevec nor Sprycel are cures, we know that.  I have been
looking around into other cancers and I am impressed with the success
that is happening for these patients being treated in hospitals as
opposed to being treated as out patients on long term drug therapies.
As I mentioned, I have several friends who are completly cancer free -
drug free and really having an opportunity to turn the page on this
part of their lives, without forgetting the valuable lessons and great
opprotunities for grace and thankfulness that the journey with cancer
has given them.  Unlike us who are trapped in this non stop saga (much
like the worlds yuckiest soap opera) of continuous follow up, molecular
blood tests, doctor visits, new aches and pains, health insurance
forms.  As much as we try to forget, CML is still the BIG ELEPHANT IN
THE ROOM.  Taking daily pills, going to the doctor, even making the
appointments and monitoring the side effects are unfortunately all
opporunities for the constant reminder (try as we might to go have that
"normal" life we keep hearing about) of the diagnosis of cancer.

You are right though, some families don't have a choice and i surely
hope yours does continue to have choices.

Just a little thought though, did you know that close to 85% of ALL
(most typical form of childhood Leukemia) are now being cured.  We also
know that close to 80% of all APL are cured with a vitamin derivative
and nearly all cases of hairy cell leukemia are cured with Interferon
treatment.  Of course all of this happened before a drug comapny
figured out how to make the CML "market" worth 2.1 billion dollars -
this is the part that worries me the most!

Love, Peace and all good things - and hopefully Tony and all of us will
continue to do well.

Cheryl-Anne




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