Hi Barb,
Thanks for sharing the results of your consultation with Dr. Druker.
I've met Dr. Druker only briefly at ASH, but when I read stories like
this it reinforces my belief that he is one of the best there is.
Not just from a knowledgeable CML specialist standpoint, but also
because he seems so kind and caring. The fact that he spent an hour
and a half with you and provided such an amazingly detailed,
exhaustive and accurate overview really impressed me.
I also learned something new. I haven't researched SCT's a great
deal and I didn't realize that pediatric BMT's have a higher success
rate. Did he have any pediatric data on chronic GVHD?
I also liked the fact that he summed it up by saying that both
decisions are OK and once you've made a decision never look back.
Truer words have never been said and this is something to always
remember.
The only thing that I could add is that I am very impressed that
you've done everything you can to make yours an informed decision.
Tommy is in good hands.
I wish you and Tommy all the best in 2005 and that whatever path his
treatment takes that he lives a long, productive and healthy life.
All the best,
Mark
--- In [email protected], Neddo Family <[EMAIL PROTECTED]> wrote:
> For an update - I wrote that I have a 16 year old son with CML. My
> husband, son, Tommy, and I are weighing our options for transplant
vs.
> staying on Gleevec. We saw Dr. Druker on Dec. 16 in Portland (a
> beautiful city). I just got around to posting because we enjoyed a
> vacation in warmer weather and came back to ice! If you stay in
> Portland, ask about a discount rate for OHSU patients. We received
a
> discount at the downtown Marriott.
>
> Dr. Druker talked to us for an hour and a half. He faxed his
dictated
> notes. Any quotes from his notes I have italicized. He went over
the
> treatment success predictors for Tommy. If you follow the posts on
this
> group, Mark Peterson posted a formula called the Sokal score that
> included these predictors. There are four things you look at: size
of
> spleen at dx; platelets at dx; age and blasts at dx. Tommy was 2/4 -
big
> spleen and % of blasts, low platelets and young age. So he came out
half
> and half for these factors.
>
> Then Dr. D. went over his current research about predicting the
rate of
> relapse per year of patients on Gleevec. This was very interesting.
If
> you listened to the lls teleconference and had the booklet, you got
the
> info. I believe that this info. may have been posted to the yahoo
group
> and will probably be posted on the lls website in the future. Dr.
Druker
> is a very kind, knowledgeable and wonderful person. His research
says
> that there is a 4% relapse rate per year of patients on Gleevec.
The
> percentage of relapse rate per year goes down if you reach complete
> cytogenetic response (2%) and even less if you reach a three log
> reduction (.5%). If you look at the general % of survival for SCT,
you
> would see that it is about 60% so that after ten years on Gleevec,
the
> survival rate for Gleevec treatment success and SCT would be the
same.
> After ten years, the rate of relapse would be less for SCT.
However, the
> Gleevec data is new and no one knows if the relapse rate will
continue
> to be 4% per year or if it will go down or up. Dr. Druker also
talked
> about pediatric BMT's being more successful. I quote, ...survivors
of an
> allogenic stem cell transplant have a very high cure rate with
relapses
> being less than 10% overall. (of the survivors of allogenic SCT -
90%
> will be leukemia free) However, the mortality rate from allogenic
stem
> cell transplant varies with the age of the patient and the match of
the
> donor. However, in younger patients this should be no greater than
15%
> to 20% (80-85% survival rate) with a 10 of 10 unrelated donor match
> (Tommy has a 12/12 unrelated donor match). As far as long-term
> complications from allogenic stem cell transplant, these would
include a
> slight increased risk of secondary malignancy (other cancer later
in
> life) as well as a risk of chronic graft-versus-host disease.
>
> As for his recommendation, I quote from Dr. Druker, For some of our
> younger patients, we have advised that transplant needs to remain a
> treatment option regardless of response to Gleevec given the
unknown
> long-term outcome of Gleevec therapy. As far as potential delays in
> transplant (a concern we expressed about delaying the transplant
and
> decreasing the chances of survival), we discussed that most of the
data
> relates to an era when ineffective treatments were available for
CML.
> Thus, it is possible that by achieving at least a cytogenetic
remission
> on Gleevec, transplant outcomes might actually be improved. ...
> Certainly, for some of our patients, we have closely monitored PCR
and
> would recommend transplant at the early sign of a PCR relapse.
However,
> for other younger patients, they have opted for allogenic stem cell
> transplant regardless of their response to therapy. We discussed
that
> either approach would be an acceptable treatment option.
Ultimately, the
> patient and his family will need to decide between these treatment
> approaches. Dr. Druker stressed that either option would be OK and
that
> once we made the decision, we shouldn't look back.
>
> Right now we are leaning towards transplant (given the higher
success
> rates for SCT for pediatric patients provided by Dr. Druker). We
have
> not made a final decision. We would like to call the transplant
doctor
> and get more info. on survival rates and see if he absolutely has
to use
> total body irradiation. If you need any clarification, email me. I
> didn't get into all the details of the notes because I didn't want
the
> email to get any longer.
>
> Enjoy the new year.
>
> Barb Neddo in Eagle River WI
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