Marwelcome to the group! I, too am on 20mg of Sprycel (disatinib)
after difficulties on Tasigna, Gleevec and higher doses of Sprycel. My
journey is outlined in the notes at the bottom of this email. I would
recommend
you establishing the same...it is really helpful in letting others
Amen!
In a message dated 10/13/2013 2:06:02 P.M. Eastern Daylight Time,
r...@rwneill.com writes:
This is not an appropriate forum for political messages. CML impacts
people of all beliefs and faiths and everyone should be able to participate in
this group without having to read objection
Michelebeen on 20mgs for over 15 months...going to MDA tomorrow for a
bone marrow biopsy to check on things but expect all is well. Tom
In a message dated 9/16/2013 1:32:21 P.M. Eastern Daylight Time,
ballroom...@gmail.com writes:
Ahhh, that is a GREAT thing for you, Tom! How long h
MicheleI do not use the Cider because I have the opposite problemI
seem to process TKI's very quickly...thus the reduction in dose for Sprycel
to 20mgs/day. I do think your theory has merit! Best, Tom
In a message dated 9/13/2013 3:36:48 P.M. Eastern Daylight Time,
ballroom...@g
TheresaI haven't gone through it, but I think you have a strong case.
Press on! Tom in KY
In a message dated 7/30/2013 9:25:03 A.M. Eastern Daylight Time,
terrijef...@aol.com writes:
Hello,
I was diagnosed in May of 2000. Started on interferon and arac. Moved on
to experimental d
Carol.I had the same problemwhat finally fixed the Pleural Effusion
for me was to reduce the doseThey (MD Anderson) took me down gradually
from 100 mg/dayand I have been on 20 mgs/day for over a year now and
it seems to be workingno PE and good blood results/PCR's. In add
PegMy history is belowI, too, couldn't take Sprycel at full
strength. After washing out with Tasigna and Gleevec, I started Sprycel @
100mgand had to reduce the level to 20mg which I have been taking for about
a
year (see my history below). My major side effect with Sprycel was
Richard.I do the same thing...and also keep a short summary of my
journey that I give to my doctors. It is a handy way to also communicate to
other CMLers about one's journey. As you can see, I have been on all three
TKI's...and finally doing well with a low dose of Sprycel. I believ
Jeanie...hope you are doing well! Tom
In a message dated 3/12/2013 6:02:06 P.M. Eastern Daylight Time,
icandoall...@aol.com writes:
Good to hear from you Ted.
Jeanie
Sent from my iPhone
On Mar 12, 2013, at 1:11 PM, _TEDBDD@aol.com_ (mailto:ted...@aol.com)
wrote:
Myl...
Don't be
Myl...
Don't be too nervous about switching drugs...as you can see from my history
below, I have been on 3 TKI's and Sprycel was the answer for me. In fact
they had to drop the dossage level from the standard of 100mg/day to
20mg/day because of pleural effusion issues. So far it seems to
you might try a lower dose of Sprycel. I had the sweats sometimes with it
at the higher dose. Also, the feet issues may be peripheral neuropathy, a
sometimes side effect of the TKI's. Tom in KY
In a message dated 9/14/2012 9:38:19 A.M. Eastern Daylight Time,
trim...@aol.com writes:
He
Gleevec Vacation 7/08-Pressent
QT-PCR .3 4/09
QT-PCR .15 6/09
QT-PCR .21 9/09
QT-PCR .28 1/10
QT-PCR .1+ 4/10
QT-PCR .468 10/10
QT-PCR .468 2/22/11
QT-PCR .323 8/23/011
QT-PCR .261 2/14/2012
QT-PCR .241 8/12/12
Next QT-PCR 4/13
On Wednesday, September 5, 2012 10:22:07 AM UTC-5, TEDBD
QT-PCR .15 6/09
QT-PCR .21 9/09
QT-PCR .28 1/10
QT-PCR .1+ 4/10
QT-PCR .468 10/10
QT-PCR .468 2/22/11
QT-PCR .323 8/23/011
QT-PCR .261 2/14/2012
QT-PCR .241 8/12/12
Next QT-PCR 4/13
On Wednesday, September 5, 2012 10:22:07 AM UTC-5, TEDBDD wrote:
Richard...nice work, I do the same
r the info, helpful to
me to talk withothers on the same meds. Beth
-Original Message-
From: TEDBDD
To: cmlhope
Sent: Tue, Aug 28, 2012 7:48 am
Subject: Re: [CMLHope] Re: stopping meds.
RichardI am totally with you and your decision. The longer I live
with CML the more I u
Richard...nice work, I do the same thing with my blood work. I also keep
a shorthand version of my journey that I share with my Doc's which they say
helps...particularly if you change Doc's or have to be treated in a new
facility. I have shared it before...but here it is. I believe Zavie
Angie...couldn't agree with you more! Your attitude determines your
altitude as someone once said. I love your quote. Here is one back..."life
is
filled with obstacle illusions"
May the God of your choice bless you!
Best, Tom in KY
In a message dated 8/29/2012 8:44:13 P.M. Eastern Da
pain and inability to sit is
not long term viable because I need to work.
-Original Message-
From: TEDBDD
To: cmlhope
Cc: tedbdd
Sent: Mon, Aug 27, 2012 4:18 pm
Subject: Re: [CMLHope] stopping meds.
CarolynI think we have corresponded beforeI, also am on 20 mg
of Sp
RichardI am totally with you and your decision. The longer I live
with CML the more I understand that there are few "givens". Each of us reacts
differently to the TKI's and we must make individual decisions. Like you,
I am so grateful for these amazing drugs that have enabled us all to
CarolynI think we have corresponded beforeI, also am on 20 mg of
Sprycel after failing to tolerate Gleevec and Tasigna. I also had Pleural
Effusion but didn't have to have my lungs drainedthe lower Sprycel dose
seems to have stopped the fluid build up for me...I am sorry it isn't
Beth...my journey is outlined belowGood to hear that you are doing well
on 50 mg. I am going to try to go to that level and see if it helps with
the tiredness. Keep in touch! Tom in KY
Tom Dunham, BD: 8/1941
DX CML 12-23-2008
MDA Protocol: Tasigna-400 mg, 2xday-1/09
On FLecainide for A
They gave me prednisone..then back on Sprycel at lower dose. Don't take pe
ligfhtly...get treatmemt.Tom in KY
Sent via BlackBerry by AT&T
-Original Message-
From: perk
Sender: cmlhope@googlegroups.com
Date: Tue, 28 Feb 2012 12:53:31
To: CMLHope
Reply-To: cmlhope@googlegroups.com
S
He will be missed! We will never forget what he did for all of we CMLers.
I will treasure my Zero Club member number forever! Tom in KY
In a message dated 1/10/2012 7:43:34 A.M. Eastern Standard Time,
myvet...@aol.com writes:
Rob, Today is a very sad day for me to hear that Zavie pas
Bethwe share the same memorieswe have been going down to Sanibel
since 1985 and love it there. We spend Jan thru April there most winters.
Would love to meet you if you get down there this winter. Our contact info
is below
In a message dated 12/18/2011 12:55:42 A.M. Eastern Sta
Beth..thanks for your helpful information!
If I remember correctly, you have connections in the Ft Myers/Sanibel
area. Where did you go for cancer treatment, etc. I need to establish an
Oncologist there since I will be in the middle of trying to figure out the
right dose of Sprycel while
Thx...will do! You have been most helpful..thanks! T
In a message dated 12/16/2011 11:57:41 P.M. Eastern Standard Time,
kneesrb...@gmail.com writes:
If you have shortness of breath and a full chest then you may be showing
signs of Pah. Demand an echocardiogram and a chest X-ray immediat
Jkuptzthanks for the input. I am incouraged that some can do well at
a lower dose. Have you gotten PCR tests done as well? What do they show?
Did you get Pericardial Effusion too? Tom in KY
In a message dated 12/17/2011 8:10:18 A.M. Eastern Standard Time,
jku...@wi.rr.com writes
Kneesrbadthanks so much for the helpful information. I don't think my
issue is PAH but I will look into it. Thanks also for the dose info. It
will help in my treatment to know that others have been on a lower dose. I
took Tasigna, then Gleevec...couldn't tolerate either...now on Spry
Beth...I just had to stop Sprycel because of pleural effusion...when it
gets back under control, I will go to a lower dose of Sprycel. How did you
arrive at 50mg? My doc is suggesting 70mg/day...what were your side effect
related to effusion if any?
Tom in KY
In a message dated 12/16/
Had a CT and xray...confirmed Effusionsam on steroids and off Sprycel
til it abates...T
In a message dated 12/11/2011 9:47:25 A.M. Eastern Standard Time,
icandoall...@aol.com writes:
Hi Ted, PE hurts your ability to breath.
You will know if you have it so my onc tells me.
Good luck,
Je
Thanks..that is the plan once I get rid of the fluidT
In a message dated 12/11/2011 11:06:19 A.M. Eastern Standard Time,
vakilsidh...@gmail.com writes:
Try to decrease the dose of the medicine (sprycil 100mg to 70mg od) in
consultation with your doctor to aviod this side effect of the
no...didn't find anything that worked...tried cortisone cream, etc..but
didn't seem to work. I have heard of some using a Prednisone dose pack
treatment that may help.
In a message dated 12/9/2011 1:11:54 P.M. Eastern Standard Time,
kneesrb...@gmail.com writes:
Did u use anything on t
Yepand took a long time to heal. They see to go. In one case, the
site of the bump is still "scabby" and seems not to have healed properly.
In a message dated 12/9/2011 12:08:17 P.M. Eastern Standard Time,
kneesrb...@gmail.com writes:
Were they like large red pumps that stayed aro
Yes...off and on. Not a real problem though. Tom in KY
In a message dated 12/9/2011 10:52:02 A.M. Eastern Standard Time,
kneesrb...@gmail.com writes:
Has anyone on sprycel run into an acne problem?
On Dec 9, 2011 10:49 AM, <_TEDBDD@aol.com_ (mailto:ted...@aol.com) > wrote:
Greenie...tha
Greenie...thanks for your response. I didn't remain on Gleevec at 300mg
long because the rash worsened. Started to affect my fingernails, etc.
Dr's at MDA took one look and stopped it. If the Sprycel doesn't work at a
lower level I will suggest giving Gleevec another try. Have a great h
I have just found out that I have Pleural Effusion and a little Pericardial
Effusion apparently from my Sprycel use. I have been on Sprycel for about
two years (100mg/day) and noticed some shortness of breath and chest pain.
Xrays confirmed that one lung sack was about 30% full of fluid and
Michael...what are the PE issues you talk about...how do you know it is
PE? Tom in KY
In a message dated 12/3/2011 9:21:37 A.M. Eastern Standard Time,
mksup...@comcast.net writes:
I've been on Sprycel 50 mg for 1.5 yrs. molecular remission. I do have
some pleural issues. I will discus
Skipwill have an xray this week...thanks! Tom in KY
In a message dated 11/27/2011 5:02:35 P.M. Eastern Standard Time,
skipd_2...@yahoo.com writes:
When I was on sprycel an indication of PL was first a shortness of breath,
they did xray and
where your lung should be is nothing but
I am on Sprycel toonot sure if I am getting Plural Effusionhow did
you determine that you had it? Tom in KY
In a message dated 11/27/2011 2:52:08 P.M. Eastern Standard Time,
icandoall...@aol.com writes:
Hi India that is when I take mine but with my bk. I am on 50 mgs also.
Good
Greeniethanks for the responsdeI hope you can get this fixed. You
are a welcomed contributor to CML Hope! Tom
In a message dated 8/3/2011 10:17:16 A.M. Eastern Daylight Time,
myvet...@aol.com writes:
Tom in KY, Somehow I got hacked into my address book on my computer and
email
What is with this person, _myvety2k@aol.com_ (mailto:myvet...@aol.com) ? I
don't see any value for CMLers in what they keep posting...am I missing
something? Tom in KY
In a message dated 7/31/2011 9:34:42 A.M. Eastern Daylight Time,
myvet...@aol.com writes:
http://litegrann.no/googleli
KarenI agree with Patrick...I started on Tasigna...but it attacked my
pancreas..switched to Gleevec but couldn't tolerate it either. Have been
on Sprycel and doing much better now.
Tom in KY
In a message dated 7/26/2011 2:55:09 A.M. Eastern Daylight Time,
patrickemailguard-g...@ya
Suzieq.it is definitely a Gleevec problemI had rippling of the
nails like Virginia described along with a severe rash...switched to Sprycel
and it cleared up. Tom in KY
In a message dated 6/21/2011 11:47:36 P.M. Eastern Daylight Time,
vgar...@doglover.com writes:
Hi Suzieq,
I'
Our Prayers are with you , Zavie! Tom Dunham
In a message dated 5/30/2011 12:19:14 P.M. Eastern Daylight Time,
maggy...@bellsouth.net writes:
Sending out Prayers to Mr. Miller.
From: Peter Geary
To: "cmlhope@googlegroups.com"
Sent: Monday, May 30, 2011 3:51 AM
Subject: [CMLHop
I have the same experience as RicardoDiagnosed in '09...dropped to
undetectable in the blood in 12 months...but still .01 in the bone(see
below)...both have fluctuated since...testing accuracy isn't much better than
the
slight differences you are seeinghang in there. Tom in KY
Tom D
Done! Tom Dunham
In a message dated 5/10/2011 6:47:03 P.M. Eastern Daylight Time,
zmil...@sympatico.ca writes:
Dear Friend/Relative/Zero Club Member/etc,
Signing this petition is very important. My CML friends in the UK are
being denied treatment that is standard everywhere else. The
I am on Spryceland Creatinine levels are in the normal range.. Tom in
KY
In a message dated 3/16/2011 10:42:17 A.M. Eastern Daylight Time,
myvet...@aol.com writes:
My creatinine level was 1.3 back in June of 1997. After I found that I
had CML in Dec. of 1998 my levels were still at
Amen!
In a message dated 2/9/2011 5:22:34 P.M. Eastern Standard Time,
nadia...@earthlink.net writes:
Thank you for your mail.Politique and religion don't belong to cmlhope.
Nadia
-Original Message-
From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf
Of kev
Amen!! Tom
In a message dated 1/4/2011 11:15:11 A.M. Eastern Standard Time,
danbr...@suddenlink.net writes:
Iblaine,
I couldn't agree more! I have people act shocked when I tell them the cost
of continuing my life, but like you, I explain the millions of dollars it
takes to develop
I, too have had two flu shots with Sprycel and no problems. Tom in KY
In a message dated 10/6/2010 12:20:30 P.M. Eastern Daylight Time,
lblaine...@comcast.net writes:
Yes, I have always been encouraged to get a flu shot and I've been on
Sprycel 100mg since October 2008. Also, I got a p
Hang in thereit takes a while to adjust to these drugshopefully
your side effects will abate with time. I note you have been on Gleevec,
then Tasigna...and now Sprycel...is that right? T
In a message dated 9/25/2010 11:18:13 A.M. Eastern Daylight Time,
bkbar...@aol.com writes:
Beth...yepyou sound like a native The birds you speak of in
Periwinkle park are raised by Dick Mench, who owns the campground and also the
Lazy
Flamingos (one on Periwinkle and one up on San Cap road). He breeds them
and it is his birds that he loans to Jerry's.
Traders is one of o
Beth...I am familiar with Health Park...Thanks! How about the Island
Cow? We also like the Over Easy Cafe for breakfast. Tom
In a message dated 9/21/2010 11:54:37 P.M. Eastern Daylight Time,
bkbar...@aol.com writes:
Health Park is the name of the huge medical complex off of the main ro
Pine Cove on Sanibelat end of Tarpon Bay road. How about you? Tom in
KY
In a message dated 9/16/2010 3:55:02 P.M. Eastern Daylight Time,
myvet...@aol.com writes:
Beth, take your time theirs no rush. Were not leaving until the end of
Oct. TY. greenie
In a message dated 9/16/20
Beth.I, too, would like info on a Oncologist clinic in the Ft Myers
areawe are in Sanibel Jan-April each winter as well and don't have a Dr
there. Tom in KY
Tom , BD:8/1941
DX CML 12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
Q PCR bone@ 0.17 7/09
Acute Pancreatitis-7/5/09
Sto
Kelly...check for fluid around the lungs...it is a possible side effect of
Sprycel (pleural effusion) Your tests should reveal this condition. Tom
in KY
In a message dated 9/4/2010 5:47:47 P.M. Eastern Daylight Time,
kellyeli...@aol.com writes:
Hi Folks!
Been a long time since I poste
Patthey are Fiber Choice and you can get them in the drug store...non
prescription. They are chewable and taste great. You may have to
experiment with how many you take. I take 3 a day...1&1/2 morning and night.
Good
luck! tom
In a message dated 8/23/2010 8:18:47 P.M. Eastern Da
Pat...Fiber Choice tablets are wonderful for the Sprycel induced
constipation...Tom in KY
In a message dated 8/19/2010 4:34:59 A.M. Eastern Daylight Time,
pat2202...@yahoo.com writes:
I think you are making the best decision and I hope it goes well. The
only thing with me changing to Spr
Peg...I have been on all three...Sprycel last and it seems to be working
well. I have atrial Fib and am on Flecanide which can be problematic with
Sprycel...but so far, no arrhythmia and good blood results. My short hand
history is below. I am lobbying for all of us to used some form of th
Yes..I have tinnitis as well...got it shortly after being diagnosed with
CML. Have not found anything that works to correct. A noise machine helps
at night. If you find something that works, let me know. I agree with
Richard H...lots of things can cause it...and my literature search show
Zavie...great pictures! thanks for sharing...Tom in KY #1292
In a message dated 8/3/2010 8:17:12 P.M. Eastern Daylight Time,
zmil...@sympatico.ca writes:
--
[CMLHope]
A support group of http://cmlhope.com
-
You received this message beca
I have a little different takethere are relatively few CML cases in the
world compared to other forms of Cancer so the volume base to recover
development costs is pretty small. There will still be the option to use
generic Gleevec when the patents run out and it will be cheaper...but Tas
Wonderful story and message to all of us that we can do almost anything
with CML! Thanks for sharing! Tom in KY
In a message dated 7/31/2010 8:37:14 A.M. Eastern Daylight Time,
kda...@cin.com writes:
www.hokaheygreg.com
--
[CMLHope]
A support group of http://cmlhope.com
Jeanieglad yours look good! My last check up had values about right
on yours. Regards, Tom in Ky
In a message dated 7/23/2010 4:35:04 P.M. Eastern Daylight Time,
icandoall...@aol.com writes:
Hi Tom Good luck on your check up.
Here are my blood results from Weds.
WBC 4.22
RBC 3.61 L
Jeanie...I tried it both times...I now take mine at breakfast with about 16
oz of water. I don't seem to have any real side effects after taking it.
I do get tired at the end of the day. Hope you are doing well. I go to
MD Anderson for my check up next week. Take care! Tom
In a messa
TeresaSee my history at the endI have been on all three...Sprycel,
Tasigna and Gleevec...bottom line is Sprycel seems to be working for me.
Tasigna worked well for my CML...but it attacked my Pancreas. As I have
said before in this forumI think everyone reacts a little different
Skip...wow, you are a long time warrior! I never had the sugar problem
with my pancreasjust a little boarderline once in a while. Tom in Ky
In a message dated 7/21/2010 5:36:04 P.M. Eastern Daylight Time,
skipd_2...@yahoo.com writes:
Hello Tom
had the same problem, last year I was
Beth in Chicago
See my history at the end of this note. I find keeping track of one's
journey in this short hand format helps convey to others how one has dealt
with the meds, etc. You might try it yourself. In fact, I would encourage all
on this site to use this. Zavie Miller was the fi
KeithI was on Tasigna for a while but couldn't tolerate it...It was
attacking my pancreasbut this is rare. The drug itself is stronger than
Gleevec and generally has fewer side effects. It should definitely be
tried. I am now on Sprycel and it is working well with few side effects
Ana..Both Sprycel and Tasigna are used when Gleevec stops working..both are
second generation kinase inhibitors and can be more effective than Gleevec
in many cases. They both have their own set of side effects that seem to
vary by individual. I have been on all three and Sprycel seems to b
Ana...What is your mom's chemo? there are at least 3 options that are
approved...Gleevec, Tasigna and Sprycel. You might suggest changing if the
trend continues...Tom
In a message dated 7/12/2010 8:48:23 A.M. Eastern Daylight Time,
anab...@hotmail.com writes:
I´ve just come back from
Beth...you might try SprycelI could not take either Gleevec or
Tasigna...see below. Tom in KY.
Tom Dunham, BD:8/1941
DX CML 12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
Q PCR bone@ 0.17 7/09
Acute Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood-7-29-09 !
Started Gleevec-400
Severinsenwelcome to the "club". It was a shock to all of us I am
sure when we were first diagnosed. The fortunate thing is that we have a type
of Leukemia that is treatable with some amazing drugs. I, too started out
on Tasigna first in an protocol study at MD Anderson Cancer center
Well put, Jeanie! Tom
In a message dated 7/2/2010 11:41:07 A.M. Eastern Daylight Time,
icandoall...@aol.com writes:
This group is a wonderful griyo and I have been on it since the beginning
way back when it was a yahoo list.
Sometimes arguments like this happen, but it doesn't in anyway d
Thanks!
In a message dated 7/2/2010 11:28:21 A.M. Eastern Daylight Time,
icandoall...@aol.com writes:
HHT SITE _http://www.nature.com/leu/journal/v11/n5/abs/2400608a.html_
(http://www.nature.com/leu/journal/v11/n5/abs/2400608a.html)
In a message dated 6/30/2010 7:41:25 A.M. Pacific Day
Thanks! Tom
In a message dated 6/30/2010 2:49:30 P.M. Eastern Daylight Time,
jl...@rogers.com writes:
omacetaxine
--
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are subscribed to the Google Groups
John...what is HHT...I googled it and got lots of hits...but none related
to CML. Tom in KY
In a message dated 6/29/2010 8:59:26 P.M. Eastern Daylight Time,
jl...@rogers.com writes:
Hi there. I have had cml for 10 and 1/2 yearsnow. Failed gleevec, and
sprycel. Now I am on HHT and I unde
MarcieI started on Tasigna...experimental protocol with MD
Anderson...had problems and switched to Gleevec...developed severe rash and was
switched to Sprycel. Have been on it for about 6 months and seem to be
tolerating it well. Only major problem is Peripheral Neuropathy but it is n
SusanI have been on various CML drugs for the past year and a half. I
, too have noticed more tooth decay. My dentist prescribed a higher
strength Fluoride toothpaste that he says should help. He suggests that my
problem may be just the age of some of my crowns. Tom in KY
Tom Dunham,
Richard...thanks for your information. My red count is low...about 13 but
seems to be stablizing there( I am assuming you are talking about
hemoglobin, not rbc). You are right about the other drugs..as you can see
below, I
had trouble with both Tasigna and Gleevec. What I have with Spryc
Richard...I noted from your earlier email that you had to have
transfusions..was this part of a protocol? Your numbers seem to suggest that
you
didn't need them. Also, did you ever consider Spycel or Tasigna?
Congratulations on your progress!
Regards, Tom
Tom Dunham, BD:8/1941
DX CML 12
Lenda...how long have you been on Sprycel? I have been on it only a short
time..about 6 months..but no problems. Tom in Ky
In a message dated 4/12/2010 9:35:08 P.M. Eastern Daylight Time,
lblaine...@comcast.net writes:
I've been on Sprycel since 2007 and was wondering if anyone else is
Pat...I take Sprycel in the am during breakfast...and I take it with lots
of water (16 oz). You might try that. Tom in KY
In a message dated 3/22/2010 8:04:42 P.M. Eastern Daylight Time,
seloe...@cox.net writes:
Hi Pat,
I've been on Sprycel in a clinical trial since 2005. Although I
Allan...I am no expert, but my Oncologist at MDA explained to me that the
log Reduction measurement is falling out of favor now and that the absolute
quantatitive PCR (Polymerease Chain Reaction) measurement is a better way
to track progress once your Blood counts are back close to normal. P
Wonderful news!! Tom
In a message dated 3/4/2010 12:18:51 P.M. Eastern Standard Time,
icandoall...@aol.com writes:
Hi all,
I finally made it to 00.00 after 6 long years.
I am truly a turtle hehe.
I am doing really well on Sprycel with not many side effects.
Good luck everyone,
Jeanie<3
--
Marcie...I would get on Tasigna or Sprycel as soon as you can. Both are
thought to be stronger and more effective in fighting some CML mutations. I
didn't development resistance to Gleevec...just had severe rashes as side
effect and had to switch to Sprycel. Tom in KY
In a message date
Pat...You can see my history belowI had trouble with Tasigna and
Gleevecbut so far, Sprycel is really helping me with few side effects. I
believe you have ample reason to switch and your insurance should cover it
based on your Gleevec experience. Yes, you have to be concerned about
Tanyahow did they determine that 50 mg of Sprycel would work? Did
they do blood tests to check for concentrations in the blood, etc? I am on
100 mg which they said is the standard dose. I too had problems with Gleevec
and Tasigna...and Sprycel seems to be working for me. Tom in KY
Gail...see my history below...Tasigna caused me pancrease problems. I
didn't have the rash but I did so with Gleevec. Each person reacts to each of
theses drugs differently. Sounds like you have a good reason to appeal
the Govt to RX Sprycel for you. So far, Sprycel is working for meb
JoyceI don't know where your Drs studied...but I surely had the same
symptoms when I was diagnosed back in Dec of '09. I try to stay active, but
now take naps and get really tired around 9pm. My docs suggest that this
is a result of the CML and/or the Chemo...but it is normal. I used
Tasigna may be an option for those who can't use Sprycel or Gleevec. Tom
In a message dated 2/12/2010 11:19:49 A.M. Eastern Standard Time,
jcrabt...@ccenviroklean.com writes:
My husband has been on Gleevec for 9 ½ years, last summer they took him
off for 4 months because his body is not
Suzieq.yep...I still get the pains from time to time as wellcould
be a mild form of pancreatitis...or diverticulitis...or kidney stone...or
hernia...or just old ageProbably the latter for me. Regards, Tom in KY
In a message dated 2/11/2010 10:55:47 P.M. Eastern Standard Time,
Joyce...I have taken Flecainide for several years. It is a pretty strong
drug and can have some very adverse side effects in rare cases. When they
prescribed it for me, they put me in a hospital and monitored my heard 24/7
to be sure that I didn't react to it negatively. I didn't and I hav
Could your pain be Pancreatitis? That was what I had and they had to take
me off Tasigna as a result. Tom in KY
In a message dated 2/9/2010 2:33:24 P.M. Eastern Standard Time,
sheila.a.wat...@gmail.com writes:
Doc let me know that nothing showed up abnormally with the spleen that
would
Lenda...I have been on Sprycel for about 4 months...no problem with bone
breaks...but I do have peripheral neuropathy (numb feet) that they believe is
caused by Sprycel and the other CML drugs. Hope you get to the bottom of
your foot issue. Exercise is very important...physically and mental
Jeanie...I am doing pretty well...just got back from MD Anderson yesterday
and will know the results of the bone scan in a few weeks. The CBC was
good...just a little low in Hemoglobin but that is normal for me. I still
have peripheral neuropathy in both feet...but its not something I can'
Kellytry fiber choice tablets over the counter...they taste great and work!
I take 1 1\2 2x per day. Am on sprycel. Tom in KY
Sent via BlackBerry by AT&T
-Original Message-
From: kellyelise
Date: Thu, 4 Feb 2010 08:27:17
To: CMLHope
Subject: [CMLHope] Re: Update
Hi Jeanie,
I wa
Zavie...I am still confused about the log reduction scale vrs the absolute
pcr rating. If you are at a pcr of 0.05 isn't that good regardless of what
the log reduction was? Thanks for all your great work in keeping us in
the loop! Regards, Tom in KY
In a message dated 1/23/2010 11:16:2
Alanyou are fortunate to be doing so well on Gleevec. A short hand
view of my journey is given below. I was not able to take Gleevec and am now
on Sprycel.
My first bone scan results (PCR) were 0.17 after about 6 months. My blood
numbers came down quickly as yours did. I started o
Ahmed...welcome! Hang in therethe side effects will lesson in most
cases as your body gets used to the chemo. All the best! Tom in Kentucky
In a message dated 1/12/2010 7:49:46 P.M. Eastern Standard Time,
ahmed.oma...@gmail.com writes:
Hello,
At the beginning I would like to in
Marty...wow! what a journey! So glad you are well! It gives us all hope
to see how well you are doing! Compared to what you and Zavie went
through, I have only had speed bumps! Have a great new year! Tom 1292
Tom Dunham, BD:8/1941
Zavie's list 1292
DX CML 12-23-2008
MDA Protocol: Tasi
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