[CMLHope] Re: Hello to All

[Suzieq]

Hi Lori:
I agree with youto a point...I feel that we just sometimes
get busy and don't take the time to check our emails like we use to
do..that's how it's been for me.I was traveling for three
weeks, then came back home but my mom & brother are here,  so it's
really hectic with people coming and going,  or I'm cooking, cleaning,
or doing laundry & shopping.  Always something happening.  I'm taking
some time out tonight before I head for bed..everyone else has
already gone, but I needed to unwind a bit first.  I have to say
though,   when I do check my Inbox,  I always read my CML group
messages even though I may not always reply.

Here's a question for everyone...does anyone else suffer from
throbbing pains in the legs mostly from the knees down the top of leg
to ankle at night? Sometimes it is so bad that I feel like just
sobbing.  Doesn't last a long timejust when I first sit down
and put my feet up or when I first lay down in the bed. I've tried the
heating padnothing...I've stooped to pain relievers or
drugs..don't know what else to do.  This just started happening a
couple of months ago.so I don't know if it's from the disease,
the Gleevec, or something else.

Thank you, Jeanie, for the wonderful poem.  I love poetry and I think
I've read this one a while ago,  but had forgotten about it.  So, I
printed it off to keep & share.   All of you people here are such an
encouragement and a blessing to me.  Even though I've never seen any
of you except for a couple who have posted pictures..I feel like
your here with me talking over coffee.

I go to see my dr. on the 24th and Mom's here so she is going to go
with me.  She will be moving up this way in a few months.needs to
find a good Hem/Onc. for the Auto-Immune of her Platelets.  She's
doing so wonderfully right now taking a very low dosage of Prednisone,
hopefully she will stay that way. But, she wants to make sure she can
find a good doctor close to treat her should she relapse.

Guess I should get off of here and go to bedI've been getting
up a lot earlier than I normally do since my family's been
hereso will chat later.

Love to all & Keep Looking Up,
Suzieq



--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-

You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~--~~~~--~~--~--~---

[CMLHope] Re: Jeanie

[Zavie Miller]

*YAHOOO!!! YIPPEEE!!!*
*Number 1107 in the Zero Club*
*Zavie*


On 10/14/07, jdallard <[EMAIL PROTECTED]> wrote:
>
>  Hi Jeanie,
> I'm Donna , care giver to Jerome . Jerome was DX with CML Oct . 27th 2004.
> He was placed on 400 mg. of Gleevec at the time. In May of 2004 his BMB
> showed he had Fibrosis scaring of the Marrow. Like you we were concerned and
> looked up Myelofibrosis. I have to say it scared us and we thought this is
> worse then CML. 2 1/2 years later Jerome is doing fine. His complete blood
> tests run on the low side of normal but his PLT 's are in the low side of
> normal. In Feb. 2006 his BCR/ABL was 0.0007.In  June it
> had went back to 0.00227 so Dr. upped his Gleevec to 600mg. By Sept his
> BCR/ABL was undetectable and remains there.. Jerome's BMB in Sept. said his
> marrow was hypocellular but that his peripheral blood was borderline anemia.
> His Anisocytosis is a little increased . His Poikilocytosis is increased
> with occasional elliptocyetes and rare odd shaped poikilocytes. Rouleaux
> formation is mildly increased. Stainable storage iron is increased in
> amount. No increase in ring sideroblasts.
> We love when Anjana and Trey comment on e-mail as well as others. You all
>  have so much good anowledge. We have been reading the CML hope line for 2
> 1/2 years and have learned so much . Thank you all.  Would you please
> comment on Jerome's results if you would like. Thank you Donna and Jerome.
> MPLS. MN.
>
>
> >
>


-- 
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
PCRU 5/02 at RVH (suspect)
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb 07
3.2 log reduction Jun 07
PCRU 11/06 at The Ottawa Hospital
e-mail: [EMAIL PROTECTED]
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem

--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-

You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~--~~~~--~~--~--~---

[CMLHope] Re: lost of appetite

[Zavie Miller]

Hi Ana,

Your mom has been on Gleevec for over 4 years without this problem. I would
start looking elsewhere for the cause of the appetite loss.

Zavie


On 10/13/07, Ana <[EMAIL PROTECTED]> wrote:
>
>
> have some of you experienced lost of appetite? my mum has in the last 3
> months and she has lost weight,
> she is still PCRU
>
> >
>


-- 
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
PCRU 5/02 at RVH (suspect)
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb 07
3.2 log reduction Jun 07
PCRU 11/06 at The Ottawa Hospital
e-mail: [EMAIL PROTECTED]
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem

--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-

You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~--~~~~--~~--~--~---

[CMLHope] Re: Aranesp

[coralee williams]

Hi Avis,

We have to pay out of pocket for blood booster shots as well. The  
price you quoted is about what we are paying right now as well. We  
are battling our local government and insurance company to get help.  
It is a very slow process. It has been 6 months since I submitted my  
appeal and still nothing. I should mention that we are from Canada.

My husband takes Eprex which is similar to Araresp to help with his  
red cell counts. He used it for four months with no improvement. He  
is getting red cell transfusions about every 25 days.

Good luck with the counts and with getting insurance coverage.  I  
hope you will find more success than we did.

Coralee

On Oct 13, 2007, at 11:43 AM, Avis Ferguson wrote:

>
> Hi to all - Writing on behalf of cousin Dona, who is not Queen of the
> side effects, but surely a Princess. Not much change: can hardly see,
> poor hearing because of tinnitus, bone pain prevents much walking, no
> use of car, Bell's Palsy (or whatever has caused the petrified part of
> face, etc.  Her blood is very low so fatigue is ever present.  Because
> Medicare will not OK Aranesp unless blood is under 10, she paid for  
> last
> shot:\
> $2400.  While at MDACC earlier this month they gave her one covered by
> Medicare as their standard is under 12.
> She said she might fly to Houston from
> Tucson for her shots, and stay the one night at Rotary House, as it
> would be under $2400.  She wonders how other
> Medicare eligible patients in need of
> Aranesp are faring.  Would appreciate any replies.
> Avis
>
>
> >


This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-

You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~--~~~~--~~--~--~---

[CMLHope] Re: Jeanie

[Trey]

Jerome is doing great.  PCRU is only attained by fewer than 10% of
CMLers.  A 3 log reduction is used as the CML therapy goal, which is
more realistic.  And studies show nearly 100% survival rate if 3 log
reduction is achieved.  So Jerome has exceeded the goal.

His anemia is something that many of us live with.  Anisocytosis means
the red blood cells have greater variation in size than normal.  This
is also shown by the CBC RDW count going higher.  Poikilocytosis
(oddly shaped red blood cells - RBCs) and occasional elliptocytes
(oval shaped RBCs) and rare odd shaped poikilocytes are also seen in
CML.  Rouleaux formation is when RBCs clump together.  These RBC
issues are a matter of the "quality" of the RBCs, and go along with
CML anemia.  This is why just taking more iron or folic acid does not
eliminate the anemia.  These inefficient types of RBCs do not function
as well, hence the anemia.  Some data indicates these RBC quality
issues tend to get better over time for many people.

Hypocellular marrow (low number of cells in the marrow) goes with the
anemia.   If he is taking iron supplements, the increase in iron
storage might show he is taking too much iron -- ask the doc about
that.  CML anemia does not automatically mean we need more iron.  Too
much iron can be counterproductive.  The body stores the excess iron,
which is not necessarily a good thing.

Fibrosis (scarring) of the marrow is NOT Myelofibrosis (also called
Idiopathic Myelofibrosis). No wonder it scared you.  Mild fibrosis of
the marrow can sometimes occur in CML, and is often reversible.
Myelofibrosis is a different disease caused by a separate DNA
mutation.


--~--~-~--~~~---~--~~
You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at 
http://groups.google.com/group/CMLHope?hl=en
-~--~~~~--~~--~--~---