Hey Greenie and all,
So sorry to hear you're having these struggles. Nausea is like having the flu
all the time. The doc (our mutual Altman) prescribed a nausea pill when I
began bosulif. I've used it about 4 times since going on bosulif. (10 mos.
ago). If it continues after you've gone off gleevec for a week or more, I
would ask for some. You have lots of options, but I truly hope a quick
vacation will do the trick. We might not get to meet in New Carlisle if you
can't get this problem solved~! And I had such a good time meeting with you
and your sweet wife, we'll need to do it again when you are in the area.
I went to Chicago Northwestern Medical again last Thursday. I now get 3 months
in between visits since I'm in remission. I do have to go to a cardiologist to
check out a few chest pains I've had, and a neurologist for the shakes that
have been going on for far too long. I'd like to blame everything on bosulif,
but I don't think I can.
You are sure in my thoughts and prayers about your nausea. Enjoy your vacation
from gleevec and sure hope it helps!
All you guys have been posting so much. I read, but I can't always write with
other things going on. This time I'm reporting a praise report about being in
remission, and asking for prayers about the chest pains and shakes!!!
Rearranging my blood pressure medicine and one other to see if it improves
things before the neurologist. It was too strong I think....we'll see. God
bless you all!!!
18's,
Susan
-----Original Message-----
From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Jan 24, 2015 3:25 pm
Subject: [CMLHope] Greenie
Hi Greenie
Check your potassium and ect. You might have an imbalance. That happened to
me when gleevec quit working. I was so sick. Do you have diarrhea? I had
both. I finally started taking psyllium seed--crushed--you can get them at
health food store. Just go by the directions.
It cured the diarrhea but I had to finally change tkis.
Blessings Jeanie 18's
On Jan 24, 2015, at 11:39 AM, "'Icandoallttc' via CMLHope"
<cmlhope@googlegroups.com> wrote:
Hi Richard and hang in there. I wake up with nausea every morning which I
think is the hydrea. Do you eat a big meal with gleevec? I know I had to and
no spicy foods. Your success on gleevec has been great. It quit on me after 5
years. You could just have a bug.
Good luck and blessings.
Jeanie
Sent from my iPhone
On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope <cmlhope@googlegroups.com>
wrote:
Hi to my friends in our group, well I've been on Gleevec for 15 years and 14
days all of a sudden for the last 4 days I'm having nausea problems. I'm
taking some promethazine that helps some what but it's not a fun thing. I have
no idea what started it either. I had this problem before when we lived in
Springfield, MO. I got over heated and got hit with nausea every day for a
little more then 2 years then I awoke one morning and it was like someone
turned off the switch and it was gone. This time of the year it's not hot here
so I know that's not what caused this problem.
I'm going to take a Gleevec break for a week or two to clean out my system and
hope that I get back to normal. I did this before about 6 years ago when I had
a sinus infection and the doctor back in Indiana put me on and anabolic that
interfered with my Gleevec so we stopped Gleevec for 26 days. After getting
blood work some cancer cells did show back up in my blood work but after
stating Gleevec again the next test showed that I was clean again.
My doctor at that time was doctor Tallman and he gave me a call and said "well
if it worked before it will work again" and that was that. So I have my
fingers crossed to see what happens. I can't stand this nausea problem, my
heart goes out to the women that have babies and have to put up with nausea. I
just hope it's the Gleevec again and not something else. My blood counts are
O. K. so I'm not worried about that. This does not help my anxiety problems
Will keep you all up to date as how things go.
greenie
In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time,
rbhuffm...@gmail.com writes:
Seventeen and on my first adventure this wonderful world we live in.
Richard H.
On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote:
That's cute Richard--how old were you?
My IV went in good-no swelling.
This morning I am sick-- sore throat and mucus.
Glad everything went good Sherri but couldn't they give you something for
pain??
Blessings Jeanie
Sent from my iPhone
On Jan 23, 2015, at 12:03 AM, Richard H <rbhuf...@gmail.com> wrote:
May I add my sea story of needles, I don't like needles but do not have
a phobia. When I arrived at boot camp the first thing was get our
shots. We walked through a line getting shots in both arms as mentioned.
They were using hugh syringes and had large pillows with the needles that
was changed while we were stepping in front of them. Someone was calling
a slow cadence of step, step. As each recruit stepped He was given a shot
in each arm. All of a sudden the corpsman I was getting ready to step in
front of yelled "BRING BACK MY NEEDLE." The recruit in fount of me
had it hanging in his arm. When I received the 4 pricks for allergy
testing I then had to sit in the dentist chair I promptly passed out.
Richard H.
On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote:
Jeanie, Needles lord knows I hate them. The first time I had a blood
test it was to get married. My Doctor lived 3 blocks away form me and
I worked for him when I was in High School. They did the blood work
and he walked in after and took one look at me and he put is hand
behind my head and pushed it down and told me to pushed as hard as I
could to keep me from passing out.
Then when I went into the Navy I was on active duty for a year and a
haft they found out that I didn't get any of my shots. Well you know
what happened then, I received them all at once, both arms. So years
go by and I end up with CML and we all know about needles. Yes, some
are good and some are bad. I had to get blood work this Monday and I
think the lady took the needle outside and scraped it on the pavement
plus I think it was square and bent. I think it when through my arm and
out the other side.
And the first BMB all they gave me it was so much fun that I asked them
to do another one. Ha, Ha. After about 10 or 11 of them I asked to be
put into lala land which they did but I had to have someone drive me
home. My wife has to give me a shot of testosterone every two weeks,
the needle is 1/1/2 in long another fun shot. So for me they do the
molecular blood work and no more BMB. Thank you.
Take care and hang in their,
greenie
In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time,
cml...@googlegroups.com writes:
Hi Marty.
How are you?
I am going to have the endoscopy today. First I will go to the blood
area and have blood checked. Then to dr for consultation. Then to
have the endoscopy.
Long day.
Needles are no fun but we get used to them. Some draws are good some
bad.
Pray for me and all in need.
Love Jeanie
Sent from my iPhone
On Jan 21, 2015, at 7:52 AM, Marty Gartenberg <wa2...@gmail.com>
wrote:
Hi Jeanie,
You have been through so much it's about time that you got a break
or two. Not feeling that IV go in and no black and blue afterward
then having a BMA with little or no pain.
Well, two out of two ain't too bad is it? <360.gif>
When I was a kid I had a phobia, and it was needles. I hated them
that on the day my school was giving shots I told my mother that I
was sick and couldn't go to school that day. So, she kept me home
and I went to school the next day. Guess what? I got the shots that
day.
OK I'm in the army and in those days you had to walk down an isle
to get all of your shots. They used a machine that looked like a
gun and I thought it wouldn't hurt. Guess what? It did!
Then when I was 45 years old I got CML and went for a bone marrow
transplant. So many, many needles that I just got used to them.
Then having 17 BMB's. It looks like needles and me are just like
twins, always together. Not to mention that one of the aspiration
needles break off and lodge in my illiac. So in go more needles and
an in-cession follows to remove that needle. Then four stitches, of
course using another needle.
So about 4 years ago my kidneys fail and I go on dialysis. Two very
large needles are stuck into my arm every Monday, Wednesday and
Friday, and they stay in there for four hours.
I wouldn't say that I have gotten used to them but maybe I just
don't pay that much attention to them anymore.
So much for any phobias., but life goes on. Hopefully I will be
getting some more needles for a kidney transplant soon. Now doesn't
that sound warped from someone that had a phobia against needles?
It just all depends on how one looks at it I guess...
18's,
Marty
On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope
<cml...@googlegroups.com> wrote:
Hi Marty and thanks so much for that uplift. I have been
dreading it for some reason.
I pray that you get your kidney soon-- I know those fistula
operations are tedious.
The procedure I dread most is the IV.
My last one last week was a miracle. The nurse put it in and I
didn't feel a thing. Later I looked for the black and blue mark
left by the IV and no sign at all. I have never had this before.
It's usually black and blue and swollen.
My Bma has hurt very little. Thank The Lord!!!
You are our spice of life and thanks for being there for. And
thanks to all if you for your prayers and uplifts.
Blessings
18's jeanie<emoji_u1f42c.png><emoji_u1f42c.png>
Sent from my iPhone
On Jan 20, 2015, at 10:06 PM, Marty Gartenberg <wa2...@gmail.com>
wrote:
Hi Jeanie,
Good luck with your endoscopy. They usually do put you out for
that procedure. I don't know if they will use a Propofol
cocktail but if they do you will go to sleep and when you wake
up you will still think that the procedure was not yet done.
Very good sleep with no after effects. I have had at least a
dozen of them. Every time they operate on the fistula in my arm
they use it. It looks like I will be going in for another
procedure for my fistula, there is a narrowing in two sections.
This will make 13 procedures in the last 12 months. I sure hope that a kidney
transplant will be coming soon.
I have to share a story about my anesthesia doctor. She knows
me so well that we are on a first name basis. So, the last time
that I had to be put out I asked her if I could "knock myself
out" Of course I was only kidding but she told me that she
would let me do it to myself.
So, i'm in the operating room and she is standing over me and
she puts the oxygen mask on my head and as she is holding the
needle that is connected to me IV she tells me to put my thumb
on the plunger but not to push it until she tells me so.
Ok I got my thumb on the plunger and she tells me to push it
very slowly when she counts to three. So, I'm waiting and her
thumb is on top of mine and she counts "one" then she starts to
count "two" and the next thing I know is that I am waking up in
the recovery room.
When she came to see me I asked her if I was the one that
knocked myself out and she just smiled.
By the way this Propofol is white in color and looks like milk.
Humor is the spice of life.<360.gif>
18's,
Marty
On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope
<cml...@googlegroups.com> wrote:
Hi Marty
Yes a fl cracker--hope you are great today!!!
I am going to have an endoscopy thur.
First one--they put you to sleep.
Blessings
Jeanie
Sent from my iPhone
On Jan 19, 2015, at 7:55 PM, Marty Gartenberg <wa2...@gmail.com>
wrote:
Hi Jeanie,
You sound like a real southern gal. As for me, I'm just a
good old plain city boy that also loves to go fishing. When
I was a kid my father would take me out deep sea fishing
and my favorite fish was blue fish. My mother used to cook
it in milk to get rid of the fishy taste. It was really
good but I can't seem to find blue fish here in Florida.
Anyway, I am kind of surprised to hear that your having a
difficult time with Hydrea. That was the first drug that I
got along with Allopurinal when I first had CML.
Both of those drugs never gave me any problems except if I
took too much and it would take about a week for them to
start working. Once they did then my blood counts would
drop sometimes drastically so the doses had to be adjusted,
but I never got sick or anything like that from them.
Good luck,
18's,
Marty
On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope
<cml...@googlegroups.com> wrote:
Hi all,
My family all love to fish, and we keep and eat
everything legalhehe.
I was reared on good fried to a golden brown perch that
live in the Fl lakes and rivers.
There is nothing better than good fried mullet with their
roe fried to t golden brown.
We love it with grits and tomato gravy and cornbread.
I am feeling some better, but taking Hydrea is no fun at
all. Knocks you for a loop.
I haven't heard about the pontatinib yet.
My doctor says its a powerful drug and has to be kept
monitored every week.
Well all the drugs are powerful as far as I am concerned.
Good luck everyone,
Jeanie<3
In a message dated 1/15/2015 2:58:00 P.M. Eastern
Standard Time, wa2...@gmail.com writes:
Hi again Greenie,
Like you said, don't look back but only forward.
By the way, I am an animal lover whether it be dogs,
cats, birds or fish.
I am glad to hear that you threw back those fish where
they belong.
18's,
Marty
On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope
<cml...@googlegroups.com> wrote:
Marty, My aunt left me some stock and money and one
of the stocks was Novartis and my stock guy told me
to sell it. That was before Gleevec was in any kind
of study. Because of him I also lost $43,000.00 and
I pulled my money out and fired him. If I, would
have, could of. Of course I wish I would have kept
some of my early Corvette's that I had I would be
worth a more money then Novartis. But can't look
back, just look forward.
Thanks for your reply, also I live in South Fort
Myers not far from the beach. In fact I went fishing
yesterday by the beach and caught 8 fish. But I do
not keep any, back into the water they go where they
belong.
greenie
In a message dated 1/15/2015 1:09:00 P.M. Eastern
Standard Time, wa2...@gmail.com writes:
Hi Greenie,
First, where in Florida do you live? I am on the
east coast, Boynton Beach. If we are not to far
maybe we can do lunch one of these days. If my
memory serves me right I think that you may be in Ft
Meyers??? If so then I guess that lunch is out of
the question...
About STI571. Do you know how it came about? As
everyone already knows Dr. Brian Druker who was the
one that had first discovered it. He tried finding a
drug company that would produce it and finally found
Novartis which was at the time an agricultural drug
company.
One of Dr. Drukers patients was Zavie Miller who
was trying out STI571 and it was working. Novartis
didn't want to produce it in quantity because of
the start up costs. Both Zavie and I got in touch
with one of the principals of Novartis and told him
that we may be able to bring a lot of investors
into the company.
At the time there was another CML site and we got
on and asked if people would like to invest in the
Novartis stock. At that time their stock price was
$1,200 a share but there were also what is called
American registry shares of Novartis that was
selling for only $20.00 a share.
Everyone started buying those shares and Novartis
then started production but only after it was
approved by the FDA which normally takes about 10
years. With pressure being put on the FDA STI571
was approved in about one and a half years, and
became Gleevec.
I bought many shares of Gleevec at $20.00 a share
and have nor will I ever sell them because of my
support for Novartis. As of my December stock
portfolio Novartis is listed at 92.6600. Novartis
stock has continuously gone up and up over the
years.
I am however disappointed in the price they are
getting, most notably there are people with CML that
can not afford it. Now Novartis does have some
options for those that are having a difficult time
but it still would be nice if Novartis would look
back at what they were and what they are now, and
maybe consider dropping their price for Gleevec.
Wishful thinking? Maybe but maybe not, hopefully...
But Greenie, as you mentioned it is all about greed
and money.
18's,
Marty
On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via
CMLHope <cml...@googlegroups.com> wrote:
Thank you Marty, Everything you wrote is so true
about Gleevec and CML. It's unfortunate that
greed and money has to be in the equations in the
final outcome. After Interferon that almost
killed me all that was left was Hydrea. So when
Doctor Tallman called me and wanted be in his
study for STI571 I had no idea what was going
on. Within 3 months I was 85% clean and
after 6 months I was clean. Yes their have
been over the years some up's and down's put
that's part of life. Like my late Aunt used to
always say when she was in her 80's I just take
one day at a time.
I wound like to see a cure in my life time
because the old hour glass is starting to run low
on sand.. And the way these people drive here in
Florida the end could come anytime I leave the
friendly confines and that's not any guarantee
because most of the people speed and run the stop
signs in this 55 and older community.
Keep in touch,
Greenie
In a message dated 1/15/2015 8:11:39 A.M. Eastern
Standard Time, wa2...@gmail.com writes:
Hi Greenie,
So you have been on Gleevec for 15 years. That
is something good to know because what would
you have done without Gleevec? This drug is
responsible for saving countless lives. Thank
GOD it is here or you wouldn't be here right
now.
If it weren't for dialysis neither would I be
here right now. This is the advancement of what
medicine has on our lives today. I always say
that there will be a cure for CML and you can
mark my words it WILL come soon. Just like all
of the things that were not around years ago
now they are coming.
GOD bless you Greenie!
18's,
Marty
On Thu, Jan 15, 2015 at 5:47 AM, Shannon L
<shannon...@gmail.com> wrote:
Hi Greenie 15 yrs on glivec, i will be 14yrs
this yr (started roughly 3 yrs after dx)
Shannon
On Saturday, January 10, 2015 at 12:11:08 AM
UTC+11, greenie wrote:
Jeanie, as of Jan. 10th I will have been on
Gleevec for 15 years. Starting to retain fluid
around my ankles a little but that could be and
age thing. 75 years old.
greenie
In a message dated 1/9/2015 7:53:41 A.M.
Eastern Standard Time, cml...@googlegroups.com
writes:
Hi Richard and thanks for the update. My onc
doesn't like for me to be informed either; he
just ignores what I say and goes on to tell me
what he thinks.
My uric acid was high along with my WBC and
Platelets. He seemed to be more concerned with
the high uric acid--even called me on my cell
personally twice; never had that happen before.
He took me off Sprycel adn put me on Hydrea and
allopurinol; it's funny the same thing they did
11 years ago when I was first dx.
He took another blood sample to see if I have a
mutation against the Sprycel. It seems strange
that I had a mutation with Gleevec after 5
years. Is five years a cut off point? Has
anyone else have this happen? Anyone else been
on Hydrea after tki?
Going next week to Moffitt to see if I have the
mutation. Will let everyone know.
The leukemia has reared it's ugly head once
again!!
Pray for me and everyone in need.
Blessings
Jeanie
(18)
In a message dated 1/8/2015 11:59:08 P.M.
Eastern Standard Time, rbhuf...@gmail.com
writes:
WOW! Just read todays posts. I am praying for
the group. I will add my problem to the
list. Dec. 30 I contacted ONC about
gaining 9.5 pounds water weight in 20 days after
restarting Gleevec. His nurse called that
he was out of the country on vacation with his
family. She checked with the DR. covering
for him and he asked me to stop Gleevec as he
thought I was gaining weight too fast also.
My ONC did return to the office on Monday but
finally had a conference with his Associate and
he agreed with that decision. They both
thought that I should be on a different
treatment. My ONC was to draft an e-mail to
the VA ONC (the one controlling my
prescriptions) about my reaction to Gleevec and
to recommend the treatment he thinks I should
be on. So I am still in a wait and see stage.
My ONC tells me I am too informed about my
condition and that challenges most blood cancer
specialists that rarely see CML.
So let the fun and games continue. I am still
feeling great, but the "Gleevec Brain" was also
starting to show itself, but nine days off has
cleared it. I'm as sharp as a busted tack, but
that is "normal" for me.
As always, "life" and may your tomorrow be
beautiful and better than today.
...
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