Javascript Disabled Detected

You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.

I've had CML for ...

Started by mlk210 , Jan 11 2015 10:03 PM

Prev

Next

Please log in to reply

40 replies to this topic

#21 Antilogical

Advanced Member

Members
284 posts

LocationPittsburgh, PA

Posted 17 January 2015 - 09:23 PM

Dx = 02/2012 Rx = 300mg Gleevec

Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.

Back to top

#22 Busa

Member

Members
29 posts

Posted 17 January 2015 - 09:50 PM

DX = 06/2009 RX = 400mg Gleevec

Back to top

#23 Red Cross Kirk

Advanced Member

Members
173 posts

LocationOregon

Posted 18 January 2015 - 04:53 PM

Two years, four months

400mg Gleevec

Kirk

9/25/2012 p210 transcript 118.7% IS @ D_x, begin Gleevec 400mg/day

12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome

2013 0.914%, 0.434%, 0.412%

10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy

2014 0.174%, 0.088%, 0.064%

2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016 0.041%, 0.039%, 0.025%

2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018 0.233%

Back to top

#24 dede5

Advanced Member

Members
148 posts

Posted 18 January 2015 - 05:16 PM

Dx = 02/2011 (about to 'celebrate' 4 years) Rx = Sprycel 100 mg

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

Back to top

#25 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 18 January 2015 - 05:35 PM

Dx = 10/2009 Rx = 300mg Gleevec for the last 6 weeks'; first test tomorrow

For the benefit of yourself and others please add your CML history into your Signature

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.

Cumulative Gleevec dosage estimated at 830 grams

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

Back to top

#26 Billie Murawski

Advanced Member

Members
711 posts

LocationErie,Pa

Posted 18 January 2015 - 10:04 PM

3 months, 600mg Tasigna. No idea what my FISH or PCR is. Still waiting on result. The waiting is going to kill me I think. All I think about is this damn test, is the drug working is in not working. Argh!

I had a terrible childhood now have a family of my own. Son is only twelve. All I want is to live long enough to see him marry and have a family of his own. Is 12 too early to marry and have kids!

Heck no as long as he has a good job, and he and his wife raise their children. not grama and grampa!

Back to top

#27 Cathy

Advanced Member

Members
64 posts

LocationWilloughby oh

Posted 20 January 2015 - 01:25 PM

HI

DX 5/2010 so 4 years 8 months

Been on all top 3, currently 70 mg sprycel

Cathy

DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis numbers jumped up quickly

Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number

last 2 tests .0686 and .0181 !!

Back to top

#28 rcase13

Advanced Member

Members
523 posts

LocationCharlotte, NC

Posted 20 January 2015 - 01:48 PM

I was hoping we would hear from a bunch of old timers that have had it since the beginning!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg

04/08/2015 0.01% Tasigna 600mg

07/01/2015 0.01% Tasigna 600mg

10/05/2015 0.02% Tasigna 600mg

01/04/2016 0.01% Tasigna 600mg

04/04/2016 PCRU Tasigna 600mg

07/18/2016 PCRU Tasigna 600mg

10/12/2016 PCRU Tasigna 600mg

01/09/2017 PCRU Tasigna 600mg

04/12/2017 PCRU Tasigna 600mg

10/16/2017 PCRU Tasigna 600mg

01/15/2018 PCRU Tasigna 600mg

Cancer Sucks!

Back to top

#29 gerry

Advanced Member

Members
1,035 posts

Posted 20 January 2015 - 06:56 PM

There are a couple of members around that have been on Gleevec from when it was created. If you've looking for them you might want to start a new thread with a direct question.

Back to top

#30 rcase13

Advanced Member

Members
523 posts

LocationCharlotte, NC

Posted 20 January 2015 - 07:02 PM

No questions, it just feels good to a newbie to hear from people that have had it for a long time. Gives me hope I can make it a long time as well.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg

04/08/2015 0.01% Tasigna 600mg

07/01/2015 0.01% Tasigna 600mg

10/05/2015 0.02% Tasigna 600mg

01/04/2016 0.01% Tasigna 600mg

04/04/2016 PCRU Tasigna 600mg

07/18/2016 PCRU Tasigna 600mg

10/12/2016 PCRU Tasigna 600mg

01/09/2017 PCRU Tasigna 600mg

04/12/2017 PCRU Tasigna 600mg

10/16/2017 PCRU Tasigna 600mg

01/15/2018 PCRU Tasigna 600mg

Cancer Sucks!

Back to top

#31 gerry

Advanced Member

Members
1,035 posts

Posted 20 January 2015 - 07:07 PM

The main issue may come up as to what the long term effects are from the TKIs.

Back to top

#32 RobbieTx

New Member

Members
4 posts

Posted 21 January 2015 - 08:48 PM

Dx = August 1999. Started Gleevec on a clinical trial in October 1999.

Robbie

Back to top

#33 mlk210

Advanced Member

Members
158 posts

LocationIllinois

Posted 21 January 2015 - 10:35 PM

No questions, it just feels good to a newbie to hear from people that have had it for a long time. Gives me hope I can make it a long time as well.

I agree rcase. It's like hearing long term success stories, makes you believe in the treatment.

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

Back to top

#34 CMcLain

Member

Members
27 posts

LocationAustin, Texas

Posted 21 January 2015 - 11:18 PM

Hi to the newbie! I'm a newbie to the forum, but not to CML. I was diagnosed November 2010. Fortunately my CML was caught very early. I went in for my yearly physical and my white blood cell count was elevated a bit. He thought I was probably fighting off an infection. Went back 6 weeks later and my WBC count was through the roof. Sent to an oncologist and a bone marrow biopsy confirmed CML. I immediately started Gleevec 400mg. I was terrified of taking it! My son was 13 months old at the time and I was teaching full time. I had only 3 months of side effects, which were pretty mild over all. Honestly, I don't know if they were side effects from the Gleevec or just the CML in general. I had some light-headedness, feeling shaky early morning, and low energy. I have always worked out 5 to 6 days per week and pretty rigorous workouts at that. By February I was feeling like myself again! I got back into working out too! I truly believe that staying active, working out, continuing to work, not dwelling on the CML, makes a big difference in how your body responds to the medication. Also, my faith is strong. I am a believer in Jesus. I am surrounded by family and friends who pray for me. I have no doubt that God's provision has been a huge part of my success with Gleevec.
I am doing well today. I just had my 4th bone marrow biopsy and I'm waiting for the results. My FISH test has come back negative the past 3 times, but my PCR has shown mild elevation. I'm praying the results of the bone marow biopsy are great and I can continue on the Gleevec because it works for me.
You have a lot to live for and your 6 year old twins need you! Stay positive and active!

Living for Him.
CMcLain

Back to top

#35 Billie Murawski

Advanced Member

Members
711 posts

LocationErie,Pa

Posted 21 January 2015 - 11:28 PM

I was hoping we would hear from a bunch of old timers that have had it since the beginning!

I think Susan 61 is one of our members who has been on Gleevac a long time she was in the clinical trials for G the first tki ,I think it's been about 13 years for her. I have had cml 7and a half years. Billie (OLD TIMER!!!!)

Back to top

#36 ritan/

New Member

Members
7 posts

Posted 25 January 2015 - 01:17 PM

Dx: 3.5 years
WBC @ Dx: 350ish

Rx: Gleevec 400 mg 1.5 year; Sprycel 100 mg 1 year; Sprycel 50mg 1 year

Undetectable since June 2012

hoping to do a trial of no meds starting this June.

Back to top

#37 VickiW

Advanced Member

Members
65 posts

Locationnorthwoods

Posted 26 January 2015 - 05:06 PM

Gee, Hi everyone!!!

Haven't been on here in a very long time but thought I would check in. Let's see, I've been LIVING with CML since March of 2007. On Gleevec for 3? yrs and Sprycel every since. A few "speed bumps" along the way but basically been cruisin' along pretty good and in PCRU (remission) solidly (no bouncing in and out) for probably at least 3 years. Honestly, been doing so well in that department I lost track. BETTER LIVING THRU MODERN CHEMISTRY!

Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16

Back to top

#38 VickiW

Advanced Member

Members
65 posts

Locationnorthwoods

Posted 26 January 2015 - 05:09 PM

I think Susan 61 is one of our members who has been on Gleevac a long time she was in the clinical trials for G the first tki ,I think it's been about 13 years for her. I have had cml 7and a half years. Billie (OLD TIMER!!!!)

Hi Billie! remember me?