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Has anyone participated in Light Up the Night?

LLS Fundraiser Group CML events

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#1 Dona_B

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Posted 29 August 2015 - 05:52 PM

It looks like a fun event but sadly the closest one in my state is Indianapolis.

 

It's been several years but participated in the American Cancer Society's Relay for Life. Went with the intent of just watching the survivor's lap this year but was caught and walked. Hearing what some of the survivor's have went through, makes CML look like a cold.

 

Edited


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#2 dede5

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Posted 29 August 2015 - 09:57 PM

Some of my family and I participated in Light the Night a few years ago. Found it to be one of those moments of overwhelming proportions just to be a part of this event. As we approached the crowd, the song 'Firework' by Katy Perry was playing overhead, some groups were representing a loved one who had lost their battle, and some were representing a patient who is still fighting. Just hearing some of them talk, they were so passionate about what they were doing. The funds they raise each year is astronomical. I still get chills thinking about it. I think about doing it again each year, but the fatigue and the brain fog get in the way. Not making excuses, just telling it like it is. I still have hopes of doing it again someday.


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  :D


#3 CML2012

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Posted 29 August 2015 - 09:58 PM

The first year I had CML 2013, my sister created a team and raised money. She surprised me and I went. It was a great event and I wish there was one close by. I have participated in relay for life many times. It is awesome as well.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#4 Billie Murawski

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Posted 30 August 2015 - 03:03 AM

We have one in Erie Pa every September, I myself have never been able to participate but I have a niece that does every year. I want to go but our Erie weather doesn't cooperate with anything. I should be hearing about it soon I will post it then. Boy wouldn't it be a hoot if the whole board could come?    Billie



#5 Gail's

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Posted 30 August 2015 - 03:44 AM

Why, yes, I have heard of it! A friend at work started a team in my honor called Light the NightinGail. I am very touched. We're trying to raise $1500 and have almost $400. It's October 24 here in Portland, or. Sounds like a cool event. The walk is on the east bank esplanade of the Willamette river and halfway thru they will have a firework display for LLS. If any of you feel like coming, it would be great!
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

#6 hannibellemo

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Posted 31 August 2015 - 06:25 AM

Yes, I participated in Light the Night in Iowa City several years ago. I knew no one there except my close friend and family members so it wasn't as much fun as I though it would be. The speakers were very good, though. I've never felt compelled to go again.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 Gail's

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Posted 01 September 2015 - 12:45 AM

In case you're interested in supporting my team, here's the link.

http://pages.lightth...FreeNightinGail
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

#8 Billie Murawski

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Posted 01 September 2015 - 04:11 AM

Gail, Wow what a thoughtful gesture,It's so great to have a support team all around you, I always say there are still more good people in this world than bad. You must be a pretty great person to have co-workers who think that highly of you. Congratulations!!!!!



#9 Gail's

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Posted 01 September 2015 - 05:17 PM

Yes, Billie, I nearly cried when Sara told me she had started the team. I have incredibly wonderful co workers and a great boss. It surprised me too, that the docs I work with jumped right in with donations and offers to walk. I hope everyone has strong supporters like me. I'm very grateful.
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

#10 jboswor1

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Posted 02 September 2015 - 12:00 AM

Having just been diagnosed this year, I will be going for the first time here in Portland, OR. A good friend of mine has Lymphoma, our families are going together. Looking forward to it.

#11 Dona_B

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Posted 02 September 2015 - 03:50 PM

Dede5, it sounds like a very inspiring evening. For me, it's not been the brain fog as bad as the back spasms. And when friends ask, it sounds so nitpicky to say the leukemia is fine it's the side effects.

 

Billie, it would be a hoot if we all lived close enough to meet up there.

 

Gail's and CML2012, it is wonderful that your family and/or coworkers are supporting you this way.

 

Pat, guess it's not for everyone. Even if I could get up there, it probably wouldn't mean much without any friends or family in attendance.

 

JB---so sorry both you and your friend have a form of it, but glad you have the support of a close friend. A coworker from a seasonal job was diagnosed with breast cancer and even though we aren't exchange phone numbers close, it's nice when our paths cross while out and about.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#12 Lbellabliss

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Posted 02 September 2015 - 11:21 PM

One of the best, most wonderful, uplifting and inspiring nights!!! I walk with the Boston one and have become quite close with the local MA chapter. Definitely try to partake in it if you can. In one sentence- it gives you hope :) 



#13 Gail's

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Posted 03 September 2015 - 12:39 PM

I look as it as an opportunity to give a bit back to an organization that has supported me thru a rough time. Haven't needed the financial help they offer but am really grateful that they help my fellow blood cancer buddies.
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




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