APL, Information and Support

Improved APL survival in developing countries

chris — Mon, 07 Dec 2009 21:45:54 +0000

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Here is an interesting article on improved APL survival stats in developing=
countries,

http://www.hemonctoday.com/article.aspx?rid=3D51173

Its good to see treatments such as Arsenic and Retinoic Acid having a world=
wide impact on APL.

Chris

[cid:bayside.jpg]
Bayside Networks
Information Technology Service and Support

http://baysidenetworks.com

3655 Nobel Drive Suite 640
San Diego CA 92122-1052

858-654-4080 Phone
877-654-4080 Toll-free

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Here is an interesting article on improved APL surviva=
l
stats in developing countries,

http://www.hemonctoday.com/article.aspx?rid=3D51173

Its good to see treatments such as Arsenic and Retinoi=
c Acid
having a worldwide impact on APL.

Chris

Bayside Networks

Information Technology Ser=
vice and Support

http://baysidenetworks.com

3655 Nobel Drive =
Suite 640
San Diego CA 92122-1052

858-654-4080 Phone
877-654-4=
080 Toll-free

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Prominent College Offensive Coordinator Coach diagnosed with APL

chris — Wed, 25 Nov 2009 16:49:28 +0000

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I wish Dana Bible the best for his treatment.

According to this article he is going in for 30 days of initial treatment f=
or APL:

http://www.sportingnews.com/college-football/article/2009-11-24/north-carol=

ina-nc-state-preview

[cid:bayside.jpg]
Bayside Networks
Information Technology Service and Support

http://baysidenetworks.com

3655 Nobel Drive Suite 640
San Diego CA 92122-1052

858-654-4080 Phone
877-654-4080 Toll-free

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I wish Dana Bible the best for his treatment. &nb=
sp;

According to this article he is going in for 30 days o=
f initial
treatment for APL:

http://www.sportingnews.com/college-football/=
article/2009-11-24/north-carolina-nc-state-preview

Bayside Networks

Information Technology Ser=
vice and Support

http://baysidenetworks.com

3655 Nobel Drive =
Suite 640
San Diego CA 92122-1052

858-654-4080 Phone
877-654-4=
080 Toll-free

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Brief mention of a young APL survivor

chris — Wed, 11 Nov 2009 17:09:05 +0000

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APL isn’t mentioned in the news very often – it’s a rare disease so that’s =
understandable. Here’s an article that briefly mentions a girl named Ashe=
ly Jones that was diagnosed and treated at 9 year’s old and is doing fine n=
ow at 14,

http://www.explorernews.com/articles/2009/11/11/news/doc4af9f3fbe35e8187370=

243.txt

[cid:bayside.jpg]
Bayside Networks
Information Technology Service and Support

http://baysidenetworks.com

3655 Nobel Drive Suite 640
San Diego CA 92122-1052

858-654-4080 Phone
877-654-4080 Toll-free

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APL isn’t mentioned in the news very often ̵=
1; it’s
a rare disease so that’s understandable. Here’s an =
article that
briefly mentions a girl named Ashely Jones that was diagnosed and treated a=
t 9
year’s old and is doing fine now at 14,

http://www.explorernews.com/articles/2009/11/11/news/doc4a=
f9f3fbe35e8187370243.txt

Bayside Networks

Information Technology Ser=
vice and Support

http://baysidenetworks.com

3655 Nobel Drive =
Suite 640
San Diego CA 92122-1052

858-654-4080 Phone
877-654-4=
080 Toll-free

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children with APL?

chris — Wed, 11 Nov 2009 05:07:17 +0000

Hello everyone. My 21-month-old nephew (adjusted age 19 months) was diagnosed with APL on Saturday. I know that you will all understand our shock and grief. Here’s my question: he is at the Boston Children’s Hospital. They say they very rarely see such a young child with APL. Are there other people here with experience in this? Since I live in China, where ATRA was discovered, I am trying to contact Dr Wang Zhenyi at the Ruijin Hospital in Shanghai, to ask for a consultation on behalf of my brother’s family, since APL apparently is commoner here in China than in the West, and the hope is that he will have experience with treating such young children. Does anyone know him or have a contact for him? So far I have not been able to get through to the hospital. They have a terrible phone manner and no-one in hematology is even picking up. Thanks everyone. Didi/Beijing.

Patty’s APL Survivor Story

chris — Wed, 11 Nov 2009 05:06:56 +0000

I’m so happy to have found this site! My name is Patty Chambers and I was diagnosed with APL November 2005, when I was 19 years old. I’m now a 21 year old college student and am currently in the “maintenance” phase of treatment (taking oral chemotherapy such as Atra, Methotrexate, and Mercatopurine). I was apart of a research study where I also got treated with Arsenic 5 times a week for 6 weeks. I am so happy that this website is dedicated to all of the people that have or have had APL, we all have gone through alot and continue to live through it everyday, atleast we have somewhere to share our own experiences.

Patty

News article about an APL survivor, Vesanoid is mentioned, Side Effects?

chris — Mon, 12 Oct 2009 17:38:35 +0000

I’m always watching for first hand =
information from
people that have been treated for APL. Such =
stories don’t
appear very often.

This article describes a 41 yr old male named Rick =
that
experienced a lot of complications apparently from Vesanoid.   =
Seems
like any drug that is active against APL blasts can cause tremendous =
potential
problems like this.    Rick may have suffered from =
“retinoic
acid syndrome” as the blasts were being cleared.   =
Arsenic can
also cause similar side effects.

I’m not sure its always fair to report =
problems like
this as “Vesanoid specific” (the article doesn’t use =
is term
but the cause and effect is implied).

My concern is that people might read an article =
like this
and assume Vesanoid is a “bad drug.”   Well, a lot =
of
drugs including Vesanoid have potentially terrible side =
effects.
The problem is that untreated, or poorly treated leukemia is usually =
worse than
any drug!

Anita experienced some troubles while she was =
taking
Vesanoid but nothing severe like this article mentions.

Its nice to see that Rick is doing =
well. I
wonder if he will also receive any Arsenic treatment? =
Some
treatment centers are offering both Vesanoid and Arsenic for their front =
line APL
treatment regimen now.

h=
ttp://www.knoxnews.com/news/2009/oct/12/returning-the-favors/

Chris

Amazing story, leukemia and heart transplant survivor, Ironman participant

chris — Fri, 09 Oct 2009 16:38:35 +0000

The next time I feel lazy or unmotivated – I =
will try
to think of this interesting guy,

Com=
petitor
takes on Ironman after heart transplant

Chris

The use of the word “cure” in connection with leukemia

chris — Thu, 08 Oct 2009 04:12:42 +0000

CML is one of the few leukemias that you sometime =
hear the
word “cure” in connection with. You also hear =
the “c”
word occasionally in connection with some of the treatment regimens for =
APL.

Anita has a friend that has been treated =
successfully (so
far) with Glivec so I was interested to hear this story,

http://www.upi.com/Top_News/2009/10/0=
7/Leukemia-drug-Australia-trials-promising/UPI-80311254947768/

Chris

An improved ability to detect residual leukemia, magnetic nanoparticles

chris — Thu, 08 Oct 2009 04:03:58 +0000

I thought this article was interesting. It =
discusses a
new leukemia diagnostic / detection technique that should help improve =
the
ability to detect extremely small residual amounts of leukemic =
cells.

I would imagine that this method might be used to =
gather a marrow
or blood sample that would then be used with a sensitive PCR test =
for
residual leukemia.

http://www.modernmedicine.com/modernmedici=
ne/Pathology/Technique-May-Aid-Detection-of-Residual-Leukemia/ArticleNews=
Feed/Article/detail/632256?contextCategoryId=3D40165

PCR tests are sensitive to begin with and this =
technique
might be able to help make them even more sensitive. My question =
is what should
be done with an even more sensitive detection method for leukemia =
cells?

Anita’s Dr’s always seemed a bit unsure =
what to
do if a positive PCR test was to come through for her. The =
best
answer I could ever get was that “all the Dr’s oncologists =
in our
group would talk” if a positive result came through and they would =
decide
“what do to next” together. =

I actually liked the “all the Dr’s will =
talk
about what to do next” – that sounded =
reasonable.
I think that answer is code for “We don’t know what to do if =
that
happens” but we’ll do our best to make a good =
decision.

My thought is that a further improvement of PCR =
sensitivity
could offer an even earlier warning of possible relapse and the need for =
more
frequent testing upon which a decision for further treatment could be =
based if
relapse became more apparent.

I’ll leave it up to you to find, but there is =
an
earlier article on this blog that discusses the fact that a few stray =
(apparent)
leukemia cells don’t always mean a relapse is certain. =

In fact, cells that exhibit genetic markers (such =
as CD33) that
are consistent with leukemia cells are sometimes found in healthy people =
that
will never develop leukemia! Points like this help me =
understand
why Anita’s Dr’s were loathe to explain how or what =
treatment
decision would result if a positive PCR test was to come =
in.

Anita is still doing fine, in her second here of =
nursing
school now.

Chris