Peter,You were correct to dismiss the "death panels" as nonsense. It was a
twisted interpretation of the fact the Medicare would automatically pay for an
"end of life" consultation instead of requiring a case by case approval -
nothing more.I'm of course not familiar with Canadian health care. B
Susan,I take (4) 150 mg a day. As far as I know the only dosages are 150 mg and
200 mg, no 125. But yes, one 150 mg a day would be a very low dose.Here's a
pretty complete rundown on side effects and reactions from the Tasigna site
http://www.us.tasigna.com/patient/patient-prescribing-informati
SuzieQ, Marty is right on target. I don't know how I read your post without
thinking of gout. The explanation I've been given is that as the medications
kill off leukemia cells the dead cells release uric acid into the bloodstream.
Since it's in higher levels than the liver is equipped to elimin
Penny, if something was making me wonder if I was having a brain bleed I would
be on my way to the ER.Patrick
--- On Sat, 3/23/13, Penny wrote:
From: Penny
Subject: Re: [CMLHope] Tasigna
To: cmlhope@googlegroups.com
Date: Saturday, March 23, 2013, 9:53 PM
Hi,
How do you know if you have had
Jim,This is spam that is spread via a virus or malware. The spammers find a
vulnerable web site and add their content then compromise someone's email
account and send spam "from" them to every contact in their address book
directing them to the site. Or it can be "from" someone in the address bo
Daniel,Lots of possibilities including coincidence. Sounds like it might be
fungal. Especially what you're describing behind the ear. Think of dandruff
below the hair line.It's easy and pretty innocuous to check out. Try a little
clotrimazole cream in one area. If that's the problem you should s
Well I am on Tasigna now but my dental problems "erupted" while I was on
Gleevec -3 broken teeth = 2 extractions. When I asked my first oncologist his
response was something like, "oh yeah Gleevec can cause all kinds of dental
problems, that's why I told you to take a calcium supplement." He of
Jeanie,Since you've taken it you know they do ECG's on Tasigna patients
excessively. That's because Tasigna can cause prolonged QT syndrome which
basically means the heart is still in the relaxed phase of its cycle when the
next signal to contract comes. This can cause atrial fibrillation common
One more thought. They always list sodium, calories and everything else by
SERVING on nutrition panels. So you have to note how many servings they claim
are in the package. I picked up a small bag of nuts that had low sodium (and
calories) claim on the front of the package - per serving of cours
Hey Doris,I've been fighting high blood pressure the last couple of years - due
to medications of course!I can't take the most common medications for BP and
the ones I can haven't been totally effective. So since I don't smoke and I'm
not overweight I decided I would do a food log. That is recor
As other CMLer's have pointed out, yes Gleevec causes eye bleeds. You do need
to make your doctor aware that you are having them. And most are no big deal
and go away on their own. But they can be severe enough to stop Gleevec and
possibly require other medical intervention. It just depends on h
That's an excellent point, Richard! There is such a thing as water poisoning.I
found a good short article about how much water to drink by the Mayo Clinic
http://www.mayoclinic.com/health/water/NU00283
Unless you have a problem with one or more of the ingredients like sodium
or potassium I'd sa
Hey Millie,I know it sounds crazy but yes you have to drink more water when you
take water pills. It's a question of the wet stuff being where it needs to be
while trying to get rid of it where we don't want it.And yes Prednisone can
certainly cause fluid retention. That's probably the biggest r
Draz, the big picture is that there really is no "US healthcare system". We are
making some progress. I resisted replying to some other questions about
healthcare costs before the election to avoid appearing like I was campaigning.
The closest to an answer I can give you is that my friend Michae
The cut-off date is December 7th not December 15th.
--- On Tue, 11/6/12, Richard H wrote:
From: Richard H
Subject: [CMLHope] Re: insurance
To: cmlhope@googlegroups.com
Cc: "robert goodrich" , cinem...@yahoo.com
Date: Tuesday, November 6, 2012, 10:15 PM
I use Humana PPO and Medicare. The Socia
Marcie,
Mercifully I'm not on Gleevec anymore but it would an understatement to call
what I got from time-to-time acid reflux. For me it was mostly what I ate. Many
CML'ers have identified tomatoes as a big no-no with Gleevec. I also found I
couldn't eat, take Gleevec and immediately lie down.Pa
Jeanie,Medicare has a great tool for comparing Part D plans (Medicare HMOs
too)https://www.medicare.gov/find-a-plan/questions/home.aspxIt's worth doing
the personalized search rather than the general search.Patrick
--- On Thu, 11/1/12, icandoall...@aol.com wrote:
From: icandoall...@aol.com
Su
ALRIGHT GREENIE!
From: myvet...@aol.com
Subject: Re: [CMLHope] taking antibiotics
To: cmlhope@googlegroups.com
Date: Friday, November 2, 2012, 4:32 PM
Hi Group, I took a plane to Chicago Wed. to get my Meds.
and blood work and see the Doctor and the results came back Neg. I'm good
to
Jeanie, That's the protocol for a danger for bloodborn infection like someone
with mitral valve prolapse. (a heart valve condition) I've never heard of it
for CML and my dentist (actually clinic of dentist who specialize in caring for
immunocompromised patients) don't do it for me. To me it soun
Hi Michelle,You speak the truth about Levaquin. It even has a rare side-effect
of audio and visual hallucinations and "wrong thinking". Guess who had that
reaction. Try showing up at the ER because an antibiotic is making you crazy
and hallucinate. "Do you have hallucinations often?" "Do you hea
Hey Millie,I am 100% certain the meds can cause major pain. I had all kinds
pains on Gleevec. Much better for me on Tasigna.About the weather - if you
don't have a hurricane kit put it together today!Here's a pretty good one on
weather.com http://www.weather.com/weather/hurricanecentral/article/
Jeanie,I couldn't tolerate ACE inhibitors the first choice for high BP.
Couldn't take calcium channel blocker either (plus it had no effect on BP). I
have been on Atenolol for more than a year without any adverse effects, BUT
beta channel blockers like Atenolol will slow your heartbeat. My pulse
That's great news, Kelly!I'm really interested to hear that you're only on 100
mg/day of Tasigna.Tasigna has made a world of difference to me as well. Both
because of fewer side effects and the efficacy of Tasigna itself. For those not
aware of the details about Tasigna the "normal" dose is 300
Just for statistics, I had 2 eye bleeds on Gleevec. One small one and one that
lasted a couple of days and looked nasty to me. But I know: a) mine weren't
bad. b) never had one in my life while not on Gleevec. c) None on Tasigna
(about a year and a half).One thing I THINK I noticed; I think my e
Greenie,In case you ever have to pass through H-town a word about
tail-gating.After moving to Houston in the 70's and being cut-off a few times
including being forced onto an exit I didn't want to take. I came up with
driving in Houston instructions for newcomers and visitors. If you see pavemen
Hi Jeanie,
Thanks for the info on Tramadol. I think the evidence
for Tylenol-free hydrocodone is mounting.I'll have to think about watching Two
Weeks. I/we did home hospice for the love of my life in 97. Then I set-up and
did the first day of home hospice for one of my brothers 3 years later aft
Michelle,I can assure you that everyone I have ever encountered here responds
anytime they can help!I see your posts which I remember because of your
LearnToBallroomDanceOnline nickname. I wasn't able to search on the Google
group site for your posts but I did find your recent post about asking
Hi Jeanie,I know many people are dealing with far worse pain I do and to
paraphrase Bill Clinton, I feel for you. For me, hydrocodone has been
sufficient. One thing we kept in mind is the problem with high-dose Tylenol
during the trials for Gleevec. (I always think people were trying to deal wit
Hi Betsy,I had only limited success with Gleevec and switched to Tasigna after
3 years. Tasigna got me to normal WBC in less than 3 weeks vs. more than 3
months for Gleevec.One thing I think we pretty much all agree on here is that
different TKI's work differently and have different side effects
Be certain to click on the interactions tab. Also this is still
just anecdotal input. One of the statements posted previously mentioned
"converting sunlight into energy" well yes if you're a plant. Very definitely
discuss this with your physician.The only use I can find confirmation on is
contr
Yeah Millie! I don't recall so many people hitting PCRU so close together.
--- On Thu, 5/17/12, C.M. Houtz wrote:
From: C.M. Houtz
Subject: Re: [CMLHope] Tasigna
To: cmlhope@googlegroups.com
Date: Thursday, May 17, 2012, 10:22 AM
Hi
Everyone.I also reached PCRU this month and was
Great news, Kelly!
And I have some of my own:Diag July 08Gleevec Sept 08 to Feb 11I did get to
normal WBC on Gleevec but not much else and finally late in 2010 that response
started to fail.Started Tasigna (std 600mg daily) in Feb 11, got to MMR in Feb
this year and as of today's visit with my o
Whoops! NOT 2500 mg 2500 mcg.
--- On Tue, 5/15/12, patrickemailguard-g...@yahoo.com
wrote:
From: patrickemailguard-g...@yahoo.com
Subject: Re: [CMLHope] Question on Vitamin B12
To: cmlhope@googlegroups.com
Date: Tuesday, May 15, 2012, 4:18 PM
Greenie,I was dealing with pervasive fatigue about
Greenie,I was dealing with pervasive fatigue about 10 or 12 years ago long
before my CML. My doctor had me try B-12 shots. But after getting no effect
after 3 or 4 I stopped. Then couple of years ago Gleevec/CML really hit me
with another bought of fatigue. This time I just opted for the sub-l
Ditto Gleevec made me itch often. I got some relief from benadryl.
--- On Sun, 4/29/12, Jay Rainville wrote:
From: Jay Rainville
Subject: [CMLHope] Itchy?
To: "CMLHope"
Date: Sunday, April 29, 2012, 11:35 AM
Hey folks, I haven't made too many posts; but am wondering if anyone
has had this sid
Kelly, it may be crazy but I've been using the sun as antidepressant for a long
time. Short status for those who don't spend every waking moment tracking my
health: I've been on Tasigna for a little over a year since loosing efficacy
with Gleevec. Achieved normal blood counts in less than 3 week
Hi Maggie, I've recurring rash from Tasigna but not as bad as yours sounds.
Sort of acne-like most of the time. I've gone on many times about using
anti-histamines to fight it, topical and oral Benadryl and Zyrtec.Patrick
--- On Fri, 1/6/12, maggy...@bellsouth.net wrote:
Just approximately 15
Carol,I can give you my experience with Tasigna which I'm thinking is pretty
close in this respect. I use Zyrtec. It's my dermatologist's recommendation and
the one I had settled on before asking him. My oncologist has suggested
Claritin but that really did nothing for my Tasigna itch/acne-looki
Parson,
I have avoided having my Tasigna delivered mainly due to apparent changes in
UPS' practices. Just ordering things from places like Amazon my experience with
UPS has been one I wouldn't trust with my medication. They recently have done
things like leave my packages on my door step. Doesn'
Well Tasigna I assume. (I guess it's possible that the acne is from another
component in the capsules but I doubt it.) There's quite a lot online if you
search allergic 'reaction kinase inhibitors'. I mean you could have a bad
allergic reaction and not be able to take a drug or a minor one like
I get acne-like outbreaks like you're describing takingTasigna. I have found
the Benadryl gel works well to reduce swelling and soreness (histamine). Also I
take Zyrtec as it is for me basically an allergic reaction. When they take on a
real zit-like quality I use benzoyl peroxide on them.
Patri
Beth,I accidentally discovered that what I had been reporting as fatigue was
low-level pain. (I discovered this after several occasions of treating a more
severe particular pain and spontaneously getting relief from my "fatigue". - It
dawned on me that a pain pill isn't a pep pill so it couldn't
Hi Greenie et al.I recommend installing Emsisoft's anti-malware.
@ http://www.emsisoft.com/en/software/antimalware/It will clean anything that
might be on your PC. The paid version is certainly worth the money but even the
free version will do the job.When downloading, you'll get the full versio
Karen,To me your son's side effects seem severe enough to consider switching
TKIs. Gleevec stopped working for me and we switched me to Tasigna. Tasigna has
caused pretty extreme fatigue for me but it has been much more effective (3
weeks to normal WBC vs 9 months for Gleevec) and the side effec
Kelly,There's no two ways about it. All decisions about your care are yours,
not your doctor's.
To answer your request; I was on Gleevec/imatinib for about 3 1/2 years.
Gleevec stopped working for me and I started Tasigna/nilotinib a month ago. I
am taking the "standard" dose of (2) 150 mg caps
Greenie,
I'm a big fan of Benadryl gel (lotion) for anything like bites or stings.
Patrick
From: "myvet...@aol.com"
To: cmlhope@googlegroups.com
Sent: Tue, November 2, 2010 5:46:15 AM
Subject: Re: [CMLHope] Re: Still on Gleevec Vacation
Hi Beth, thanks for the
The flu shot this year is a combination essentially of the seasonal flu,
H1N1 and H3N2.
Made my shoulder sore for about 3 days.
Between 1976 and 2006 estimated yearly flu-associated deaths in the U.S. range
from a low of about 3,000 to a high of about 49,000.
cdc.gov/flu
Patrick
Hi Warriors,
I've been meaning to post a couple of things.
1st, you might recall the Marie Callendar's recalled a batch of their Cheesy
Chicken and Rice because of possible salmonella. Well I wish they would have
done it about 3 weeks sooner!
Anyway dealing with that I came across something that
Long term use of prednisone doubles your chances of fractures and cataracts.
Long-term side-effects include Cushing's syndrome, truncal weight gain,
osteoporosis,
glaucoma,
type II diabetes mellitus, and depression upon withdrawal. (Wikipedia.org)
But it's generally worth the risks and side eff
Isn't the amount of salt you consume a possible factor in water retention? I
know it seems like that for me. If I get some swelling I get diligent about
controlling salt - mostly "hidden" salt in things like prepared foods and soft
drinks, fast food of course is the worst.
Patrick
--- On Fri, 4
Just wondering. Am I the only one here who's never had a BMB?
About a year into my little journey my onc mentioned one. But when I asked what
we would learn from a BMB that would alter my course of treatment he didn't
really have an answer. (My CBC numbers all jumped to the normal range within 2
Well it could somebody else.
They would have to have you, cmlhope and comm...@whitehouse.gov in their
address book and be on AOL...
It won't hurt to install and run A-squared. You can just uninstall at the end
of the trial.
Patrick
--- On Sun, 4/4/10, myvet...@aol.com wrote:
From: myvet...@ao
Greenie,
It looks like you have some malware or virus that is using your address book to
send out spam.
I say it looks like it because sometimes what they do is to spam a person's
address book while pretending to be another address in the address book. But I
looked at the header and this is co
I post these from time-to-time
Patrick
drugs.com's gleevec interaction info
http://www.drugs.com/drug-interactions/imatinib,gleevec.html#
and now it apeears you have to create a free account on medscape to access
their interactive drug interaction checker
http://www.medscape.com/druginfo/drugin
Yep. I think tomatoes are a problem. My first dose I tried with Stouffer's
stuffed bell peppers (ground meat, tomato sauce) and I'm sure no one wants to
hear that story again! ha ha
Patrick
--- On Tue, 5/5/09, C.M. Houtz wrote:
From: C.M. Houtz
Subject: [CMLHope] Re: From Novartis
To: CMLHope@
Penny,
Of course there are a lot of other considerations but that sure sounds like
something Ritalin might address.
Patrick
--- On Thu, 4/23/09, Boogie Woogie wrote:
From: Boogie Woogie
Subject: [CMLHope] Re: Decreased ability to decipher, recall and concentrate
To: "CMLHope"
Date: Thursday, A
I don't know that the cause has been determined. But I will try to remember to
write it down to ask my onc. I thought I had just started sleeping in weird
positions until it came up here.
--- On Tue, 4/21/09, Jody Capik wrote:
From: Jody Capik
Subject: [CMLHope] Re: Decreased ability to deciph
Hi Tracey,
I have had a few similar occurrences. More frequently I've had the dizziness
(vertigo?) that has come up in the side effects discussion but that was mostly
when I started Gleevec.
While I'm thinking of it - literally - thanks to CMLHope for making the
association with waking up with o
Scientists Discover How Herpes Viruses May Lead to Cancer
It's important to note there are many herpes virus variants including the ones
that cause canker sores and chicken pox in addition to the more notorious STD
the word brings to mind.
There is a link in the article to the scientific paper i
almost exactly my list...
Patrick
--- On Wed, 4/15/09, bikercub wrote:
> From: bikercub
> Subject: [CMLHope] Gleevec Side Effects
> To: "CMLHope"
> Date: Wednesday, April 15, 2009, 11:54 PM
> I was diagnosed with CML in May of 1992. I've been on
> Gleevec going
> on my 7th year. I was on
myCMLcircle.com
Registrant:
Domain Admin
Novartis AG
P.O. Box CH-4002
Basel 4002
CH
Same registration info as they use for gleevec.com
Patrick
On Apr 15, 5:42 pm, Richard H wrote:
> Has any one received an email regarding a new project for Virtual CML
> Support Group feature for myCMLcircle.
--- On Tue, 4/14/09, Suzieq wrote:
... Maybe some day soon..they will decide there is a cure using something
so we can
all go off this stuff and feel like a human being again!
...
Me too!
Unfortunately the incentive (money) is in developing treatments, not cures.
I don't think anyone woul
Hi Bev,
I think these are very common side effects with Gleevec.
Fortunately I've only have to deal with vomiting the first time I took Gleevec.
But wow, was it impressive.
Nausea is a sometimes problem for me. I understand that chemo patients and
others have for years employed an herbal remedy t
WO - HOO! (i am a Texan)
--- On Thu, 3/5/09, myvet...@aol.com wrote:
From: myvet...@aol.com
Subject: [CMLHope] Re: An Update On Lil' Bethany
To: CMLHope@googlegroups.com
Date: Thursday, March 5, 2009, 9:16 PM
Hi Gang, I have some good news, Grace DOES NOT
HAVE OV CANCER. They
I'll second that! When I started Gleevec no one said anything about not taking
it with other medications. So I politely just added it to my once-a-day handful
of HIV medications. - BIG MISTAKE! I discovered that I had never thrown-up
before, I only thought I had.
I take Gleevec by itself as far
Moxifloxacino
Not listed on drug.com's Gleevec interaction page
http://www.drugs.com/drug-interactions/gleevec_d04758.html
I believe that is a Spanish language trade name for Moxifloxacin (Avelox) which
is also not listed on the interaction page.
Patrick
--- On Mon, 2/9/09, Ana Burgos wrote:
Fr
I've got a low-tech solution for insomnia. As it happens I have my share of
sinus problems and 2 Benadryl (generic) 15 minutes before bed solves both
problems for me.
I should mention I have tried EVERYTHING there is for insomnia. Some do nothing
for me like Rozerem (I know it works for lots of
[EMAIL PROTECTED] wrote: Hi Gang,
... What's the different between Bupropion XL (and SR) ...
XL - eXtended Release, SR - Sustained Release - No difference I know of since
Welbutrin XL is described as "sustained release".
>From Wikipedia
"intended for once-daily dosing. Wellbutrin SR and XL ar
Mothers! Once when I was I think maybe 33 I went home to visit my mom. I
connected with some friends from high school and wound up getting back to mom's
around 5 a.m. - She was up!
"What are you doing up?"
"I didn't know where you were."
"You haven't known where I was for the last 15 years."
"It'
Now that is a coincidence isn't it? My grandfather (mom's dad) died of
pancreatic cancer. The only other cancer I know of in my family was my eldest
brother's lung>liver cancer after a (short) lifetime of smoking.
FTR I've never smoked.
Patrick
kellyelise <[EMAIL PROTECTED]> wrote:
There was no
I would think so. Contact your Dr. as soon as possible. Go to the ER
immediately if you have any worsening of symptoms.
In the first aid dept. How about a simple ice pack to reduce inflammation? Also
Benadryl or even better Benadryl Lotion/gel.
>From drugs.com
Seek medical attention right away if
I did not realize how much other CML'rs wondered about it. As for me, I've been
scanned and x-rayed etc. more than about half the world's population put
together, but I've also been exposed to benzene et. all enough to have wondered
about its cancer-causing potential at the time...
It seems only
Really informative article on benzene. Thanks!
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A support group of http://cmlhope.com
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To pos
Suzieq,
I have a stupid question. Are you taking the 2 halves at different times? I
told you it was a stupid question!
Patrick
Suzieq <[EMAIL PROTECTED]> wrote:
Greenie:
mine comes in a 400mg. caplet that I break in two
which helps tremendously with the nausea.
God bless you all,
Suzi
This message is entirely inappropriate for the group not to mention ignorant
and racist.
Patrick
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A support group of http://cmlhope.com
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