It is always a great day when you see this in your online file
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Results July 2015
Started by
pammartin
, Jul 21 2015 09:21 AM
20 replies to this topic
#1
pammartin
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Posted 21 July 2015 - 09:21 AM
#2
Frogiegirl
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Posted 21 July 2015 - 10:27 AM
Yay Pam! What a good feeling!
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#4
SUE
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Posted 21 July 2015 - 02:57 PM
Congratulations, Pam!
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
#5
dede5
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Posted 21 July 2015 - 08:06 PM
That is great!! Congratulations!
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest 
#6
winespritzer
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Posted 22 July 2015 - 10:06 AM
Hooray!!!
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
#7
tiredblood
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Posted 22 July 2015 - 09:12 PM
That is great! I wish you many more. : )
#8
Gail's
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Posted 23 July 2015 - 01:14 PM
Good news!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#9
Billie Murawski
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Posted 24 July 2015 - 04:31 PM
Terrific Pam,
You sure have been put through the ringer, congratulations you deserve it. Now if you can just stay away from the ticks..............
Billie
#11
Billie Murawski
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Posted 25 July 2015 - 12:44 AM
Hi Marnie,
Are you loving retirement-- hee hee building a new house doesn't sound like retirement but it sure will be fun when it's finished. Do you have any new pics to post yet. Are you doing wheelies on your no seat bike yet (I still haven't figured that one out yet) I think you might need to be put on suicide watch for awhile those tweens might have given you a false sense of security. Oh well with no seat you shouldn't need any monkey butt powder, just lots of plaster of paris, crutches, walkers, etc. Now that I think about it I have all those, slings braces I have never been the most graceful person. You can borrow anything you need once you go on medicare they only allow you one uh devise? They gave Ron a walker when he was released from rehab and they told him not to lose it because medicare will only pay for one, if he ever needed another one we would have to pay for it. I told them to keep it and give it to someone who really needs it but evidently the walkers in his name and he has to keep it or crawl on all fours if he ever needs another one. I may have to go back to work, In Feb our furnace broke so we had to get a new one and we decided to get central air also, well we had to have and electrition put all new wiring to bring it up to code then we had to pay the electric company to do something and then inspect it. It was finally finished last week Ron and I sat around with blankets around us for 2 days It takes a while to figure out the right temp. especially when you take a blood thinner. We haven't replaced our washer yet but we have to watch it very carefully, our riding mower died so we had to get a new one. I still have to get our driveway done, and Rons daughter is getting married in Sept. Ron quit smoking last Dec and I have gained at least 10 lbs. I won't get on a scale unless it's broken. This small intimate wedding is now up to 175 people. I haven't found a dress yet but since the weight gain I may need a tent. Rons ex is a lovely woman and very nice and very tiny and petite and will look gorgeous in anything I look like little lotta with white hair. My hair won't hold any color does anyone else have that problem?
Anyhow I decided to take up pole dancing this old sore body needs something to hold onto all the time and I'm so very tired all the time I figure if I fall asleep while I'm performing I can take a cat nap while holding onto the pole and nobody will know it's not part of the act. And I'll make a fortune in tips just to get me off stage!!!!!
Oh yeah Ron needs $3660.00 in dental work. Medicare a or b Aetna suplimental nobody pays a penny. Last year he needed a root canal and a cleaning I don't know what happened. But he has to have it done before the wedding he had a front tooth that was capped that fell out sometime when he was in the hospital the doctors wouldn't allow him to have dental work until now because he has to be off his meds 72 hours before any kind of dental work. But he's doing great (Another Miracle) that's all that counts love Billie
#12
Marnie
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Posted 25 July 2015 - 07:37 AM
It's great to hear from you. . .whew! You've got a lot going on! Glad that Ron is doing well (except for the dental work). I hear your pain. My dental insurance runs out this month and I have a tooth that's zinging. I need to get on COBRA for a couple of months until I can get onto Tom's dental plan.
Retirement is great so far, except that we are crazy busy with the house. It had stalled out for awhile, but now the workers are getting back on schedule. I'll post pictures when there's something new to show. It's been a frustration for a couple of months. I do not recommend building vs. buying right now.
The no-seat bike has been taken apart in pieces, so I haven't been on it in months. It's back together now and hopefully running better. We bought it from a jerk and got a bit taken on it. Lots of money put into it to get it into decent shape. Oh well.
Did you get some costumes to go with your pole? Maybe some pasties with those tassels that twirl?
Good to hear from you. . .
Marnie
(PS Pam. . .sorry about the hijack)
#13
pammartin
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Posted 25 July 2015 - 09:09 AM
Love the hijack!!!!!!!!!!
Great to hear from Billie. And I would lie if I ever wrote I do not enjoy your exchanges.
Thank you to everyone for the kind thoughts. Posting a undetectable hopefully helps others that are just beginning their journey with CML and those that have numbers that tend to roller coaster.
Hijack on! love it
#14
Gail's
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Posted 25 July 2015 - 11:30 AM
Billie! So good to hear from you! Sorry to hear about the money hemorrhage. When it rains it pours. I'm ahead of you on weight gain 13 lbs that I attribute to fatigue of gleevec and lower activity. I got a fitbit that I wear to measure walking and it helps me walk more. Oh, if you need the phone #, my favorite dress shop is called Omar the Tent Maker.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#15
Billie Murawski
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Posted 25 July 2015 - 10:17 PM
Hi Gail,
Does Omar take walk-ins or do I need to make an appt.
Oh Pam I'm sorry about the hi-jack too, that's why I left If I don't write down what I want to say right away I forget what I was going to say, I would never just jump in on a serious post, actually every post is serious I just feel some humor helps us deal with this crappy disease. I hope I didn't offend anyone if I did I apologize. To type or not to type that is my question 
Billie
#16
Gail's
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Posted 25 July 2015 - 11:53 PM
Are you kidding, Billie!? I would be lost in the bottom of a pit somewhere without humor thru this! Not everyone likes it, I guess, but I need it. Keep it coming! Oh, Omar is out on leave right now so I just cut a hole in the middle of a canvas tarp, stuck my head thru, and voila' it's just like an Omar original!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#17
gerry
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Posted 26 July 2015 - 01:34 AM
Hi Billie,
Welcome back. Glad Ron is doing better now. 
#18
dede5
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Posted 26 July 2015 - 09:14 AM
This looks like as good a time as any to say, "I've been missing the 'funnies' on here. Good to see you, Billie.
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest
#19
pammartin
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Posted 26 July 2015 - 11:58 AM
Amen on enjoying the funnies!!!! Keep them coming.
I need Omar's info. Please provide
#20
Billie Murawski
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Posted 26 July 2015 - 09:30 PM
Thanks for the tip Gail, we have a big plastic tarp that we use to cover the wood pile it's olive green but I can decorate it, the wedding colors are purple and silver that's close enough. We have been sending Jennifer money for the wedding when we can and we planned on giving her money as a wedding gift. That was before dental visit- I figure I'll put a sign on Ron when they take the pictures and it will say congratulations here's your wedding present. I should paint that front cap he lost silver. We should make a lovely couple.
A couple of months ago when I was discussing with the gang what I should wear, Phil B.s wife had the best advice she said just don't wear the same thing as his ex-wife does I guarantee she won't be wearing a tarp with tassles and a p-string (the g-string was way to small it looked like a suppository.
I already got a $75.00 bill from our dentist so he could tell Ron he has to go to another dentist what's up wit dat?
I hope everyone is doing okay gerry that karl pilkerton keeps cracking me up I think he's going to be on a reality show I'll let you know when. Billie
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