Hi Skip and great to hear from you. As you know, I have had many trials
and tribulations with my blood counts. In taking Tasigna, I had to have
those bags of platelets also. It wasn't so bad, they give you a little
private space with a tv and hook you up to stay all day. They will bring you
anything you want to eat if they have it, and encourage you to eat.
I actually fought my doctor at the time because I never wanted anyone's
blood, but he finally insisted when my hemo got too low. The only problem I
had was they hooked me up to glucose bag and I needed to go to the bathroom
a lot. So I had to trail down to the bathroom with all my hookups in tack.
One time the nurse decided to speed up the blood transfer, and my blood
pressure shot up. She had to reduce it immediately.
I have developed a painful jaw pain and after some research I found out
that Sprycel can cause jaw pain, so I am wondering if I should go off of it
until I see my onc. Just another battle to go through.
Anyone on this list developed Jaw pain while on Sprycel?
I also found this on ponatinib. Blessings,
Jeanie<3
[10-11-2013] The U.S. Food and Drug Administration (FDA) is investigating
an increasing frequency of reports of serious and life-threatening blood
clots and severe narrowing of blood vessels (arteries and veins) of patients
taking the leukemia chemotherapy drug Iclusig (ponatinib).
Health care professionals should consider for each patient, whether the
benefits of Iclusig treatment are likely to exceed the risks of treatment.
Patients taking Iclusig should seek immediate medical attention if they
experience symptoms suggesting a heart attack such as chest pain or pressure,
pain in their arms, back, neck or jaw, or shortness of breath; or symptoms
of a stroke such as numbness or weakness on one side of the body, trouble
talking, severe headache, or dizziness.
Iclusig is a prescription medicine used to treat adults diagnosed with
chronic phase, accelerated phase, or blast phase chronic myeloid leukemia
(CML) or Philadelphia chromosome-positive (Ph+) acute lymphoblastic leukemia
(ALL), who are no longer benefiting from previous treatment or who did not
tolerate other treatment.
At the time of Iclusig’s approval in December 2012, the drug label
contained information about the risks of blood clots in the Boxed Warning and
Warnings and Precautions sections. In clinical trials conducted before
approval, serious arterial blood clots occurred in 8 percent of
Iclusig-treated
patients, and blood clots in the veins occurred in 3 percent of
Iclusig-treated patients. In the most recent clinical trial data submitted by
the
manufacturer to FDA, at least 20 percent of all participants treated with
Iclusig have developed blood clots or narrowing of blood vessels.
Data from clinical trials and postmarket adverse event reports show that
serious adverse events have occurred in patients treated with Iclusig,
including heart attacks resulting in death, worsening coronary artery disease,
stroke, narrowing of large arteries of the brain, severe narrowing of blood
vessels in the extremities, and the need for urgent surgical procedures to
restore blood flow. Other problems occurring with the drug’s use include
congestive heart failure (CHF) and loss of blood flow to extremities
resulting in tissue death requiring amputation. Newly identified serious
adverse
reactions have also been reported involving the eyes, including decreased
vision and clots in blood vessels of the eye. These adver
In a message dated 9/4/2014 12:44:28 P.M. Eastern Daylight Time,
[email protected] writes:
Hi Skip,
I was so touched by your message. Thank you for posting it. My husband
(the CML warrior) does not have that particular problem, but it will give
many other CMLers hope and peace of mind. You have been through so much and
yet you, like the old commercial for Timex watches, take a licking but keep
on ticking. So thankful for you and others on this site. Always in my
prayers....
Joyce in IL
On Sep 4, 2014, at 8:10 AM, 'Skip Duffie' via CMLHope wrote:
Hello all.....
just wanted to comment on low/high platelets. I have gone through the
whole range of platelets, from 0(zero) to 380,000. This week last Friday I had
40 platelets and received a bag. I received my report today 3Sept2014 and
I was back down to critical ( in my lab critical is below 30\). In all
my 36 almost 37 years, I do not think the high or low platelets bothered me,
Thank G-d. I have a PCR abl test every three months and yes it it so much
better than BMA, I lost track of how many I have over this last year or
so without meds, a log reduction of 0.5, not sure if that is good or bad.
My RBC is down in the 90's which makes me a bit winded. I go twice a week
for infusions, once week for RBC if below 100, twice week for platelets, I
usually lose between 30 to 50 platelets over the weekend. I wanted to share
this with all of you, it is not the end of the world if you have movement
in your counts, just remind your ONC if your feeling sick. If anyone is
interested I would be willing to send one of my lab reports, if it would
ease your mind. Our bodies are strong and will try to fight this CML, but you
have to help it, try to get rid of stress, eat healthy, any problems talk
it over with friends and family, Marty has sound advice, And remember this
old fellow keep praying for all of us every day.
Skip D
37 years this Dec
On Thursday, September 4, 2014 9:31:55 AM, ICANDOALLTTC via CMLHope
<[email protected]_ (mailto:[email protected]) > wrote:
Thanks Marty, being positive is one of our healing factors, but sometimes
when we feel so bad and know we have to take our chemo every day, our mind
gets bogged down with our illness. Our ability to focus sometimes gets a
little blurry when we are in pain, but somehow we will get lifted up again
and be ready to fight one more day. I love the inscription on my g
grandfather's grave. It says, "He Fought The Brave Fight." So let us all
fight
bravely each day, and uplift each other with words of love and encouragement.
You are one of the bravest warriors I have ever known.
Blessings,
Jeanie<3
In a message dated 9/3/2014 8:37:01 A.M. Eastern Daylight Time,
[email protected]_ (mailto:[email protected]) writes:
Maria, good luck with your blood test.
Here are some words to live by...
EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF.
IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER
MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.
WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.
EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...
FOCUS...
Please look me up. Google Marty Gartenberg. Open CML hope then go to “The
Window”
18's
Marty
On Wed, Sep 3, 2014 at 8:22 AM, Maria Cashion <[email protected]_
(mailto:[email protected]) > wrote:
Thanks both of you, Richard and Marty for your concern!!! I am doing OK
and plan to have a CBC done in an hour or so. I will start back on my
Sprycel as soon as they draw the blood!!!
Life is beautiful no matter what. As I look back, I know that I am lucky
and strong, and I wil never give up!!!!!
Love you all!!!
Maria
On Wed, Sep 3, 2014 at 6:14 AM, <[email protected]_
(mailto:[email protected]) > wrote:
[email protected]_
(https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics)
_Google Groups_
(https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview)
(https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overvi
ew)
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* _Digest for [email protected] - 3 updates in 1 topic_
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Maria Cashion <[email protected]_ (mailto:[email protected]) >:
Sep 02 10:24PM -0400
Hello everyone!!!! God bless you all!!! I have been out of touch for a
while. My situation is still complicated, but rather uneventfull. I went
to my appointment and my oncologist for the day told me that I might need
another bone marrow aspiration and biopsy soon. She was worried because my
platelets went down. The problem is that I have not been able to take my
sprycel steadily. I have skipped some days. Sprycel acts really strongly
on my platelet count, and I know this is what is happenning. Apparently, I
have an infection also running around my system. To make it more
interesting, I have been out of medication for a whole week due to
insurance red tape...
I will resume my Sprycel 70 mcg dose daily tomorrow after I do another
CBC.
I have an appointment in two weeks...
Well, please take care!!!! Love you!!!!
Blessings!!! :)
Maria
Richard H <[email protected]_
(mailto:[email protected]) >: Sep 02 09:11PM -0700
Hope you receive good news after your CBC. My ONC has a lab in his office
and I have my results after about a 1/32 hour wait. I have Iron Deficient
Anemia that was found after I was diagnosised with CML. He doesn't like to
have a patient do a bone marrow biopsy because it is too painful. I was on
Gleevec for 5 + years and off for almost 6. In Oct. I will do the mutation
testing as I have something happening in my medical life. I have several
things can be causing my blood test to be out of sync, so we must do some
elinination testing to find what tand who should be the lead Dr. to manage
treatment.
My favorite response to the question "How are you doing?". "I stood up
this morning looked around and said "Thank you God. Its going to be a
great day. I hope you are having one also."
Richard H.
On Tuesday, September 2, 2014 9:24:59 PM UTC-5, Maria Cashion wrote:
Marty Gartenberg <[email protected]_ (mailto:[email protected]) >: Sep 03
04:47AM -0400
Hi Richard and Maria,
Richard, whenever we can get out of bed then it really is a good day. When
I was a young child my father taught me that every day is a good day unless
someone that we love dies.
Maria, isn't it a shame that we all have to be dealing with insurance
companies that may denigh us some life saving medications? This is simply
unacceptable. I do hope that all of this will be worked out for you and
everyone else that this may be happening to.
18's,
Marty
On Wed, Sep 3, 2014 at 12:11 AM, Richard H <[email protected]_
(mailto:[email protected]) >
wrote:
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