[CMLHope] Re: bad news today got to have transfusion

[Ricardo Gadelha]

Jeanie,
Everything is going to be all right.
I pray for you.
Keep going.
Ricardo.


On 9/30/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
>
>  Hi all,
> I got some bad news today.
> The Doctor called and said I need a transfusion.
> My hemg was 7.7.  My counts other than that all went back to normal.
> Also the bad stomach pain might be pancreatitus.
> They found my liapaze to be 153; way high, so they are doing and barium ct
> scan tomorrow. I spent most of the day at  the hospital getting my blood
> typed. Anyone had the barium ct scan? If so, can you share with me any side
> effects and ect.
> I've never had a transfusion before either.
> I've always been afraid of them.
> God will be with me, so pray every things will go good.
> They are cutting down on my Tasigna also.
> I didn't make it to the Moffitt because they wouldn't treat the emergency
> as I hadn't seen a doctor there yet.
> Blessings,
> Jeanie<3
>
>
> In a message dated 9/30/2008 5:48:02 A.M. Pacific Daylight Time,
> [EMAIL PROTECTED] writes:
>
> Jeanie,
>
> I am happy you are feeling better. Also glad to hear you are getting
> results today. Please let me know what they are blessings,
>
> Barb
>
>
>
>
>
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[CMLHope] Re: transfusion

[NChando]

Jeannie,
 
I understand your feeling about the transfusion.  I never wanted one  either, 
but two years ago I needed it for the same reason as you. (I was on  Gleevec 
at the time).  I had the transfusion, felt much better, and never  needed 
another one.
 
Now I'm on 800 mg. Tasigna.  I'm PCRU and feeling fine.  I hope  you feel 
better soon.
Nancy in NY



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[CMLHope] Re Jeanie and Barium

[JudyPrusky, Calgary]

Hi Jeanie - just remember to drink lots of water after your test to get rid of 
the barium.  Unless they have added something to it to make it soft when you 
expel it, which is highly unlikely, it hardens rather quickly and it's hard to 
get rid of (physically).  If you are susceptible to constipation you've really 
got to drink lots of water to get the stuff moving out of your system.  Hope 
all goes well - I'm praying for you.

Hugs,
Judy P. in Calgary


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[CMLHope] Re: Questioning what is "advanced" CML

[kellyelise]

Thank you Timothy for your information. Yes, I did have a BMA done and
it showed me to be in complete cytogenic remission. I also read a
medical journal by Dr. Druker et al in which they did followup studies
on the 5-year status of patients on Gleevec. I found out that those
that responded quickly had a greater survival rate (not a huge
difference, it appeared everyone did exceptionally well on it. I was 0
within 6 months of starting the Gleevec). I also found out that
approximately 50% of the study group continued to have the same side
effects with the Gleevec 5 years later (periorbital edema, bone pain,
nausea, diarrhea, headaches, fatigue, etc.). That's approximate as the
article stated 47%, 53% - etc., so, in my estimation around half. I
think I can probably attribute most of my symptoms to the Gleevec
itself - which are not intolerable - a small price to pay for the
greatest dividend - life. I guess maybe I worry too much.
Once again, thank you.
Kelly

On Sep 30, 2:58 pm, "[EMAIL PROTECTED]"
<[EMAIL PROTECTED]> wrote:
> Kelly
>
> "Advanced disease" does refer to any phase other than Chronic.  Close
> to 90% of people with CML are diagnosed in Chronic phase.
>
> The difference between CML and Ph+ ALL is actually in the size/weight
> of the BCR-ABL fusion protein.  CML (all phases) has a p210 BCR-ABL
> while Ph+ ALL has a p190 (bit smaller).  This can be important becuase
> CML if it progresses to Blast crisis can in about 25% cases look alot
> like Ph+ ALL because of a proliferation of lymphocytes.  The
> differences are easily detected by PCR nowadays at the time of
> diagnosis.
>
> Most people are first diagnosed in "Chronic" phase.  It was known many
> years ago that the disease would eventually morph into more advanced
> disease like accelerated or blast phases over time because the drugs
> available at the time had limited activity.  Doctors at the time used
> to try to label a patients disease based on WBC counts and how many
> blast cells were found in the blood.  What seems to be generally
> accepted to be considered a progression to "Advanced Disease" is an
> increase in the cell counts aboive a certain range but more
> importatnly the CML cells themselves must now have additional
> chromosome abnormalities in addition to the Ph chromosome.  This can
> include a 3rd chromosome or deletions of part of a chromosome.
>
> The best way to see if there are any additional chromosome
> abnormalities is to visually look at the chromosomes of the cells from
> the bone marrow aspirate. This is called the cytogenetics analysis or
> karyotyping.
>
> Did you have bone aspirate done?
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