The Leukemia & Lymphoma Society - Fighting Blood Cancers

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Wow. Last week I was battling the flu - missed team practice    it was a practice I really really ultimately wanted to attend!  Hopefully we will have another team breakfast after training so I can get to know my teammates better.

 

Saturday we are doing 7 miles.  The halfway(ish) point for the Surf City Half Marathon.  This will be a true test for me on how I am doing with training...  yeah, I need to do MORE during the week - and it is oh so hard to get back into the swing after the flu, but once I get going I feel great 

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John Haluck became part of the LLS family almost a decade ago.  He is now a trustee of the Greater Sacramento Area chapter and is not only a survivor but is a huge supporter of LLS.

 

When I was diagnosed with chronic lymphocytic leukemia (CLL) in 2000, I was no stranger to leukemia, having lost a good friend to the disease. Still, going in for a routine physical and finding out I had an "incurable" form of cancer was a massive shock to both me and my family. I looked at my three kids and I wondered if I would be around to see any of them graduate from college or get married. It was the worst weekend of my life.

 

My doctor recommended a "watch and wait" approach, since my form of leukemia was chronic, not acute, and some people have lived twenty years with CLL.

 

However, my cancer progressed much faster than my hematologist could foresee. By 2004, he recommended that I start chemotherapy soon, as the cancerous lymphocytes were increasing in number and could cause a stroke. He told me that there was no hope for a cure and advised me against looking for a clinical trial.

 

By this time, I was volunteering with my local chapter of The Leukemia & Lymphoma Society, chairing and helping organize the annual Light The Night Walk. I also learned about a doctor who has been funded by LLS and does leading edge research in CLL - Michael Keating, MD, at the MD Anderson Cancer Center in Houston. I contacted him and heard back immediately - he would see me as soon as I was ready.

 

The morning after the Light The Night Walk, I boarded a Southwest flight for Houston. After a battery of tests, I waited to see Dr. Keating. In walked this big, burly man (a rugby player, no less) who grabbed my hand and then gave me a big bear-hug. To my surprise, he said, "John, I think that we have a very promising treatment for you!"

 

I called my wife, who flew in, and I started a clinical trial the next day of a new targeted drug, Rituxan®, which was developed with the help of funding from LLS. The rest is history. After four days of therapy, my white cell count had dropped to normal! A week later, the lumpy cancerous lymphocytes had disappeared from my lymph nodes. It was happening just as Dr. Keating had described.

 

Now I've had 53 months in complete remission. I feel a debt of gratitude to Dr. Keating and LLS, whose funding helped make Rituxan a reality. I have my life, and am able to enjoy it. And I have hope!

 

                                                                                 -- John Haluck

 

You can also listen to a short audio clip of John sharing his support of LLS.

 

If you've been diagnosed with a blood cancer, LLS is here for you:
To speak to  an information specialist, call (800) 955-4572, chat online at www.lls.org, or email infocenter@LLS.org.
Find peer support on the Blood Cancer Discussion Boards.  
Support the fight against blood cancers with a tax-deductibe year-end gift to LLS.

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Six Miles Saturday!!!!   But our coach is feeding us breakfast after the run.  Talk about working for you meal! lol

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This week the public was shocked to learn that one of basketball’s most famous players had been diagnosed with early stage chronic myelogenous leukemia (CML). Kareem Abdul-Jabar, NBA hall of famer and a former player with the Los Angeles Lakers, was diagnosed with CML last December. Abdul-Jabar is known for being an intensely private person, but he decided recently to go public with the disease to shine a spotlight on CML. In an interview with CBS News (see: http://www.cbsnews.com/stories/2009/11/10/eveningnews/main5605532.shtml) he shared that his intention for sharing his diagnosis with the public was to give a message of hope and that he intends on continuing to live a normal life.

 

A key reason why he can live a normal life is because he takes daily oral medication for his CML. While he has not revealed what drug he is taking, most people diagnosed with CML are started on Gleevec®, a drug that was developed several years ago through LLS-funded research by Dr. Brian Druker (as you may recall, Dr. Druker and two colleagues were recently awarded the prestigious Lasker~DeBakey Clinical Medical Research Award for their work on Gleevec). Gleevec was a big breakthrough in treatment for CML, and now there are two other oral medications that are also approved to treat CML.  Today many people who have early-stage CML are doing great -- thanks to staying in treatment -- and seeing their doctors regularly to make sure their medication and dosage are still the best choices for them.

 

What is CML?

There are four different types of leukemia, which means that receiving a leukemia diagnosis does not mean that every patient’s experience will be the same. Chronic myelogenous (or myeloid) leukemia is a slow-growing blood cancer that is more commonly diagnosed in adults, although some children do get CML. There are several different signs and symptoms of CML include a high white blood count, tiring more easily and having night sweats.  However these signs and symptoms do not mean that a person has CML since they can be associated with other more common conditions. We always recommend that if you suspect that your health is not what it should be that you talk with your doctor. Learn more about CML on www.lls.org.

 

If you or someone you know has been diagnosed with CML and you are looking for information and support, you may access several of our free resources listed below.

 

Download or order any of the following free education materials

Chronic Myelogenous Leukemia (CML)

The CML Guide: Information for Patients and Caregivers

My CML Tracker (An online tool)

 

Find Support from LLS or those living with CML

Information Resource Center – Call 1-800-955-4572 or ask us a question online

Co-Pay Assistance Program

Family Support Groups

LLS Blood Cancer Discussion Boards – Living with CML

 

As Abdul-Jabar says, there is hope for those who have received a CML diagnosis. If you have a positive story to share about your experience with CML we encourage you to post it on The Leukemia & Lymphoma Society Community in the Tell Us Your Story section as inspiration to others.

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Join my LLS Cause on Facebook!!!! 

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I haven't been really good at updating this blog - to be honest I did not really think anyone was reading it !


It has been about two weeks since I last wrote - a lot has been happening!  We have been meeting as a team and training each and every Saturday at 7am!    This past Saturday we ran 5 miles. Ok, the TEAM ran 5 miles, I ran 4.5 lol


It was a gorgeous day for running, I just wish the route we ran was a little more pretty. 


But then again, I should count my blessings, Leukemia is not pretty.  I am blessed that I can even run at all on such a gorgeous day.  We have an awesome coach - Noah, who has been a big help with getting us off to the right start. My biggest challenge in this whole marathon training thus far is pacing.


I have to get better at pacing myself on the whole coarse.  I find myself doing very well - but I tend to start off too fast, and not keep my pace going up or down inclines.  If I can just get myself better at pacing, I will be able to increase my endurance and not feel so beat up the day after a run.


Thanks to all my friends and family for your continued support!  Without your encouragement, I don't know if I could do this. I find myself on the days that I am feeling lazy and discouraged - hearing your well wishes and words of support ringing in my ears, and on those days - when I feel least like running, I think of all of you - and all the people battling Leukemia and Lymphoma. 


This is what keeps me going


On that note - I am off to workout and get a run in! 


This coming Saturday I want to run the full course with my team!  Six Miles!!!



Oh yeah!

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Jennifer Donnelly is the mother of Matthew, an acute lymphocytic leukemia patient who's story is featured in the Gap Give & Get Campaign.  Gap Give & Get gives you a 30% off coupon to shop at all Gap, Inc. store, with 5% of the proceeds going to benefit The Leukemia & Lymphoma Society.

 

llsphoto.jpgJennifer shared her story with LLS:

 

How did you find out that Matthew had leukemia?


Matthew was diagnosed on December 11th, 2007, when he was two and a half years old. He hadn't been feeling well and our regular doctor thought he had a double ear infection. In fact he did have a double ear infection, but thankfully our doctor also had blood work done on Matthew, which ultimately determined that he had acute lymphocytic leukemia (ALL).  It was devastating at the time, but in hindsight we were glad he was diagnosed early on.


Before Matthew's diagnosis, had you ever heard of leukemia?


To be honest, no -- but I learned very quickly.  I also found a huge support group of people out there who are willing to help.

 

How has LLS been helpful to you and Matthew?

 

We participate in LLS's finanicial aid program and have also participated in The Light The Night Walk twice.  Matthew was also recently named the 'Boy of the Year' for the local LLS chapter here on Long Island.

 

Your son has an amazing smile.  He looks like he has a very positive outlook.

 

He does!  When he was first diagnosed, going to see the doctors so often was difficult and I would try a number of things to make it a positive experience - like dressing up in costumes. Well now, Matthew actually looks forward to going! Once when we were on vacation in Disneyland, he surprised me with "Lets go to the clinic, Mom!"   There we were, in the "happiest place on earth" and he wants to go to the clinic!

 

How is Matthew doing now?

 

Matthew's doing very well. He's in the second year of his treatment, which will continue through 2011.  We are participating in a trial.

 

A clinical trial?

 

Yes, again, before Matthew had been diagnosed, I didn't realize how important clinical trials could be to treatment options.  I found out as much as I could in advance, especially about the protocol that was suggested for Matthew.  Now, I think of all of the people who participated in trials before us and I'm grateful.  If they hadn't, I wonder where we'd be now.  Thanks to previous trials and the people who participated in them, treatments have improved.

 

Have you participated in any previous Give & Get campaign?

 

We participated in both the spring and summer campaigns.  A coupon was forwarded to me via email.  The 30% discount is terrific and knowing 5% of the sale goes back to LLS - even better!

 

Now, when I know of a business, like Gap, that gives back to LLS -- I think, "They're doing this for research, they're doing this for cures, and they're doing this for my son."  It makes me want to cry because I know the true benefit of this kind of support.


Thank you, Jennifer, for sharing your story with us and allowing us to feature Matthew in this campaign.

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Team In Training coaches from all over the country and in Canada converged on San Francisco for the Nike Women's Marathon.

Watch this short clip of our dynamic coaches. If  you're up for Coach Nina's challenge, visit www.teamintraining.org.

 

 

This is the sixth year of The Nike Women's Marathon, a one-of-a-kind event,  sponsored by Nike, that has brought  together more than 100,000 women to celebrate running and raise funds for the  fight against blood cancers.

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Michigan Musicians and The Leukemia & Lymphoma Society Collaborate on Inspirational CD

 

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Legendary folk artists, Peter, Paul and Mary, and nationally acclaimed recording artists Tom Chapin, and Josh White, Jr. are a few of the many Michigan musicians featured on this CD, which was inspired by the battle several of the CD's artists have endured in the fight against cancer.

 

Now available from CDbaby.com, you may order :"As Long As I'm Here" and know that all proceeds will go to support The Leukemia & Lymphoma Society's life-saving blood cancer research.

 

Click here to place your order today!

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i have been a cancer survivor for 5 years. it seems as thoug the cancxer has returned as a low grade lymphoma. does anyone out there have any experience with low grade and the treatments recommended for it.

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i am a cancer survivior 5 years of large b cell lymphoma.  it has recently returned as a low grade lymphoma that my oncologist says we should just watch and see.  that makes me nervous and i am wondering if anyone else has experienced a low grade non hodgkins and what you are doing as treatment. i thought it was being treated with only rituxin, which may not be that bad.  i am thinking of going to get a 2nd opinion.  cindy bailey

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Feeling uneasy in cms9978's Blog

Posted by cms9978 Nov 3, 2009

I have to say that today I am feeling uneasy about myself.  I know that it would be good to go in and get some real help.  But I am scared too.  Everything seems to be snowballing.  Yes we need the help but there are others that need it more.  How can I justifiy that fact that we have a roof over our head but can't get the kids christmas presents.  Now I know that I am going to have get help.  Co-workers have it out for me.  I knew that this was going to happen.  When we changed supervisors,  I knew I was going to get shafted.  And I ever bend over and take it or find a new job.  I hate this, I love the work I do just not the people I work with.  HELP!

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Can anyone tell me what they will do if my first set of Rituxan treatments doesn't get it all?

 

Karen925

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I'm happy to be sharing my most recent challenge with you.  I've not only committed to run another marathon (YIKES!) - Vancouver - in memory of my grandpa, Dr. Edward Vosika, but I have committed to raise $4,800.00 for the Leukemia and Lymphoma Society.  Even crazier, I'm hoping to exceed that amount - my personal goal is to raise $7,500.00.  I'm hoping to raise the first half of this before the holidays!

 

Why?  Because I truly believe in the LLS mission - to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.  And, because I want to honor my grandpa, who lost his battle with leukemia 12 years ago on April 27, just a few days before the marathon.  I will compete in memory of him and his life accomplishments.  He was an amazing person!

 

I will join many other Team In Training runners, also competing in memory and honor of loved ones lost and those that have survived leukemia, lymphoma, Hodgkin's disease or myeloma. These people are the real heroes on our team, and we need your support to cross the ultimate finish line - a cure!

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Running for Cures with Team In Training

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Laura Booke with her great niece, Louise

 

Laura Booke will be running her second ING New York City Marathon this Sunday at the age of 72, this time as a member of Team In Training (www.teamintraining.org).  "There wasn't supposed to be a second," she says..."But then,  my great niece, Louise Elizabeth Daggett, three years old, adorable, smart and lovable, was diagnosed with leukemia...Whatever could I possibly do to help her?  Answer:  I can run; I can run with The Leukemia & Lymphoma Society’s Team In Training program and raise money for the research that now gives Louise the possibility of a long healthy life."

 

Louise's family has received help from LLS through financial aid, counseling, information and support groups.   "Louise is running the race for her life.  I am running the race on the streets of New York.  Together we will be winners. At the finish I will give Louise my medal.  The victory is hers."

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You find them on the road to recovery!

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Tommy Owens comments on "Are Humans Meant to Run Long Distances"


Owens weighs in on the the importance of marathon training with his response to Tara Parker-Pope's post, with


"As a running coach for 20 years, I concur that training gradually over a long period of time is the surest and safest way to get to the start and finish line injury free, while feeling excited and fresh. At Team in Training (www.teamintraining.org) we [understand] the importance of training for at least four to five months, and we usually recommend a combination of run/ walk to help our people build their strength, stamina, and endurance, and mitigate the risk of injury. Proper pacing is a significant key to healthy enjoyable training. Our clinics on proper gear,nutrition and hydration, and running form also helps a great deal. Having a training program with easy days, recovery days, along with a gradual increase in mileage, certainly adds to the health, safety, and enjoyment for all our people."


For the full post, see: http://well.blogs.nytimes.com/2009/10/26/are-humans-meant-to-run-long-distances/?apage=6#comments 

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I am a 53 year old male that was diagnosed with CML December 2007. I have been on 400MG of Gleevec since that time. The Gleevec seems to be doing it's job with the exception of some very annoying side effects that definitely effect my quality of life. All my blood work has been normal since that time, however the side effects sometimes seem to outweigh the benefit. My doctor has suggested lowering the dosage and or changing to the next generation of the drug (Sprycel). Have any of you experimented with dosages and or changed medication even when the present medication is doing its job simply to eliminate or lesson side effects? My brothers have been tested for a bone marrow transplant and I have a brother that is a perfect match 10 of 10, my doctor said that a bone marrow transplant should be used as a last resort.

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Supporters of The Leukemia & Lymphoma Society are using the new LLS Toolbar, raising  money for the cause with every Internet search and online purchase

 

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What if even a fraction of the $140 billion generated by search engine advertising and online shopping was directed towards finding a cure for blood cancers and improving the quality of life of patients and their families?

 

The Leukemia & Lymphoma Society recently teamed up with GoodSearch.com to launch the new Leukemia & Lymphoma Society Toolbar, which gives supporters a chance to raise money for the cause every time they search the Internet or shop online.

 

Once a supporter has added The Leukemia & Lymphoma Society Toolbar to a web browser (like Internet Explorer, Safari or Firefox), each time s/he shops at one of more than 1,300 participating top stores (including Amazon, Target, Apple, Macy’s, Best Buy, Orbitz, Staples and others), LLS will earn a percentage of the purchase price – at no extra cost to the user!

 

The toolbar also includes a Yahoo! powered search box and every time a user searches the web, about a penny is donated to The Leukemia & Lymphoma Society.  The pennies add up - just 5,000 supporters searching four times a day will earn around $73,000 in a year!

 

The Leukemia & Lymphoma Society Toolbar gives supporters at all income levels a tool to help raise funds for our cause.  While doing a search or shopping online, why not raise money for The Leukemia & Lymphoma Society?

 

“We know there are a lot of people who want to do good, but may not have the time or the money to help out.” said Ken Ramberg, Co-Founder of GoodSearch and former President of MonsterTRAK, the largest online career site for college students (now a division of Monster.com). “The new Leukemia & Lymphoma Toolbar makes it as easy as possible.  We’ve taken something people do every day -- searching the Internet and shopping online -- and have turned it into doing good."

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Cml in Brad's Blog

Posted by Brad Oct 25, 2009

I have recently been diagnosed with cml. I am currently awaiting word form the ins co. for a determination on wherther they will approve or not..Reading from the post it strikes me that the cure is worse than the cancer.......I have serious heart problems and am not sure if it is worth the fight.....I currently display several of the symtoms posted....A little advice is appreciated.....Thanks

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Dear faithful reader(s),

It has been awhile since my last blog...please forgive me. Training miles were getting up there! I ran 10miles last Sunday and was planning on 13 for my next long run…however life got in the way. Thank goodness for life though! I got in a real bad car accident last Thursday. Hydroplaned on 1-670, ran into cement median (numerous times), broke a rib, busted a lung, totaled a car…and survived to tell it. My guardian angel was on duty that day! Doc holds a month on my running and then some however. So for the next month my training will be at a halt; my faith and spirit however is going full speed. Everyday I’m getting better and every day I am thankful to be alive. Thanks to everyone for the food/visits/gifts/flowers/thoughts/and prayers!!

Although I can’t train doesn’t mean I can’t raise money for the LLS! I am having a Wine Tasting Event next Thursday at Camelot Cellars in the Short North from 6-9pm. I’m really excited for this fundraiser! O and thanks to City Barbeque who will be catering this event...yummy! $25/person! Let me know if you are interested! Eanne.owen@gmail.com.

News on my marathon: I might be switching to the Rock ‘n’ Roll Nashville marathon in April. Sorry PF Changs team…I might be leaving you all (still waiting to hear back from Mary). Either way…a marathon and $3,800 (hopefully more) is in my near future!

Stay strong,

Emily

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Ok, I guess today was the promised "setback" that is bound to happen.


I know training is a process, and I know there will be good days and bad days - well this one wasn't *bad* per se, but I wasn't at my best either.


Just under 2 miles in 25 minutes, about 1% incline and I felt like I was suffocating.  One lesson learned:  do not take mucinex for sinuses prior to a run, it dried me up horribly and my throat and nose were so dry that it was hard to feel comfortable in my breathing.  I also made the mistake of starting out short on breath, I should have warmed up and done some breathing exercises before we set out on the run.  I have to find a better way of dealing with sinus problems before a run - I am definitely keeping away from that mucinex! Probably have to abstain from taking it when I have sinus issues during this whole training process.  Most of the sinus probs are from barometric pressure changes - I really must remember to utilize my biofeedback training to help with this!


Ralph ran with me today.  I am actually quite impressed with him!  He hasn't run since his military days, and he still can keep a good pace without straining.  Actually I feel I was holding him back!  He also has some good solid advice.  He is being supportive - I need that.  And I need to know things like those that he was telling me:


1) don't drink too much water while running.  a) it messes with my pace b) it teaches the body that as soon as its under any exertion it needs water.  c) it would slosh around in the tummy making for an uncomfortable run


2) when running uphill, shorten my stride - it really does make it easier!


3) make sure I exhale all the air - stitches in the side can be caused when the lungs do not empty of air completely between breaths.  It can be just as important if not more so to concentrate on my exhale as my inhale.


4) approach breathing in running like my yoga; by breathing through the nose and exhaling through the nose I will prevent my throat and mouth from drying out.


5) the body doesn't stop sweating when I stop running - so I shouldn't rush off to the shower without a cool-down period first


Good pointers! He is good in how he advises as well, he is not bossy or mean.  I need that as well.  Who knew he could be such a good teacher/supporter?

 

 

Don't forget to donate and support me in the race for the cure!  click here!

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Runner's World

Runner's World is proud of our long-standing relationship with Team In Training. Recognized as the worldwide authority on running information, Runner's World aims to help runners achieve their personal health, fitness, and performance goals, and to inspire them with vivid, memorable storytelling. Published by Rodale, Runner's World is available in 14 editions world-wide and online at www.runnersworld.com


Nike

Thanks to our partnership with the Nike Women's Marathon, held annually in San Francisco, Team in Training has raised over $78 million in the battle against blood cancers.  Just Do It? Nike lives their famous tagline and for that, we're grateful.

 

PowerBar

National Supporting Sponsor and Official Energy Bar and Gel of Team In Training, PowerBar, has been actively engaged with Team In Teaming through much of the last decade, providing participants with the nutritional products and tools to achieve their Team In Training goals. Become part of the PowerBar community at www.powerbar.com


Schwinn

A cycling icon for the last 100 years, we're honored by Schwinn's sponsorship of Team In Training. Visit www.schwinnbikes.com to where you can become a part the Schwinn community.


Nissan

Get ready for your big race with valuable training tips and videos from Nissan Master and record-setting marathoner Ryan Hall. Watch his videos and enter to win a Nissan Altima at www.mastertheshift.com.

 

The Leukemia & Lymphoma Society applauds our Team In Training Sponsors, recognizing the impact they have had on our ability to help blood cancer patients live longer, better lives. Thanks to you, we're that much closer to cures!

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Pioneer in Late Effects Cancer Research Raises Awareness for the  Importance of  Funding  Science for Treatment

 

October 22, 2009

 

See the 'Create a better life for patients'  Op  Ed featured in today's Philadelphia Inquirer.    Dr. Meadows, a long-time supporter of LLS, and renowned oncologist,  is spearheading a campaign to help eliminate the causes of cancer treatment's late effects.

 

To help fund  these  efforts, donate online at www.lls.org/donate.

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Last weekend I earned a little extra cash for my Leukemia & Lymphoma Society Marathon fundraiser.  I got to help set up for the Cannonball 5k and Half marathon event in Greensboro,NC.  I highly recommend doing this for anyone thinking of running in an event because you see the 'behind the scenes' and gain a new respect for what all goes into setting up for events and how things work...i've done several events and just shown up, got my race number/chip to wear and ran...it's a lot more to it....Off n' Running store sponsored the event and did an awesome job!

 

I missed my 10 mile run that day and the next, and when i did try to run it,...i hurt my leg (runner's knee injury) and haven't run at all this week since.  I need to get my mojo back....especially since i have my 16 mile run this weekend....i was so proud of myself for getting thru the 14 miles without passing out...lol...and i still can't believe i'm running sixteen with no 'finish line'/cheering fans waiting at then end (feels like for running that much it should have more of a 'wow' at the end)....the great feeling you get just completing it is all i need honestly,...that and a nice soak in a tub full of ICE...(after the first couple minutes you're kinda numb to the cold anyway)

 

I've gotten over $1900 so far and really appreciate everyone's effort!  I'm going to sell raffle tickets soon for a team fundraiser we're doing...there are a ton of prizes up for grabs and tix are 1 for $5 and 5 for $20....all the proceeds go directly to our fundraising efforts so maybe this will help put me 'over the top'!   Have a great weekend everyone!

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I am sitting here on my deck, looking out over the hills, enjoying the cool fall breeze  thinking about the 2.5 miles I ran yesterday in 20 minutes.  It is a bit daunting to think of the 13 miles I must run in February, at this rate it will take me almost 2.5 hours to run (if my math is correct, and it might not be, math was never my strong suit)

 

Not a bad start all in all. 

 

Official Team training begins this coming Saturday. I think I am ready - our first team run will be 4 miles. That in of itself is not as bad as running said four miles at 7:30am! I am going to have a harder time with that aspect than with the actual 4 miles!

I try to look at it this way - if I am still half asleep, it just may be easier for me to run, I may think I am dreaming it, thus do more than I would if I was awake and doubting myself!

 

Such a gorgeous day to get out and run again - I think I will just concentrate on pacing and not worry about my time as much.  On that note - I am off!     

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This is my first time ever "blogging"!  I am excited to be doing this for TNT!

 

This challenge is very dear to my heart for many reasons.  The first being, my grandpa, (who was also my favorite person in the world) died in 2005 from MDS - a form of Leukemia.  I am running this marathon in his memory.   I am myself a cancer survivor - not of leukemia, but of a gynecological cancer.  So, for me to be in this place in my life - training to run a marathon is quite a miracle.  Grandpa told me I would do something like this one day.  So here I am - training for this marathon.  It is here I will blog my experiences and share information.  Please be sure to visit my fundraising page and sponsor me in my endeavors:

 

SpiritEyes' TNT Surf City Orange County Marathon Fundraising Page


 

Please help me raise funds for the Leukemia & Lymphoma Society!

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Upset in cms9978's Blog

Posted by cms9978 Oct 20, 2009

I don't like to complain.  But thats all I feel like I do.  I hate being sick after I eat.  I try not to eat but know I need too.  I have four kids that need me or at least I need them.  But they don't deserve this.  Why is it that if it is a cancer or a tumor the doc will remove and treat with chemo and/or radiation?  But sense this is not all we get is a wait and see.  Why do we have to get worse before we can get better?  Fix me, Cure me!  HELP ME!

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The following post is from our Public Policy department.

 

Currently, only 3 to 5 percent of adult cancer patients participate in clinical trials. The leading reason for the low participation is barriers that hinder access to clinical trials. The Leukemia & Lymphoma Society (LLS) is pursuing several avenues to increase patient access to clinical trials so that blood cancer patients can have access to all of the treatment options available to combat their disease.  

 

In February, patients were asked in this forum to share their personal stories about one of the potential barriers to enrolling in clinical trials: health insurance coverage. Specifically, we asked if, and how, insurance company denial of coverage for enrollment in a clinical trial might have influenced their decision whether to participate in a trial. Now, LLS is searching for personal anecdotes about how patients have been affected by other hurdles to patient participation in clinical trials: transportation and communication.

 

Some clinical trials are only conducted at one institution, or at locations that require travel on the part of the patient, making transportation to that location for treatment and follow-up care a major concern, and a barrier for participation, for a number of patients.

 

In New York, LLS is pushing legislation that would break down these barriers to clinical trials access. Bills introduced in Albany by Assembly member Dick Gottfried (A. 1805) and Sen. Tom Duane (S. 4492) would create a state grant program to cover costs associated with clinical trials education and transportation, and patient navigation to find out about available clinical trials. Organizations such as LLS would then apply for these funds to provide financial assistance to patients in need.

 

LLS would also like to address this issue nationally. To do this we need your help in gaining a better understanding of how many blood cancer patients are being affected by transportation and communication issues. How many more patients would be willing to enter a clinical trial if they simply knew they were being offered? How many know about a clinical trial that would help their disease, but cannot afford to travel to the center where it is being conducted? Would patients be able to participate in a trial if LLS gave financial assistance to help cover these transportation costs that can sometimes be crippling? Please share your experience and thoughts with us.

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Pictured here is Marcella Marcheschi (L) with her sister, Gabriella (R). Both sisters and their mother participated in the Nike Women's Marathon Sunday.


“I don’t think words can explain what it feels like to be told you have cancer,” says Marcella Marcheschi, 28, of San Francisco, of learning of her diagnosis of Hodgkin lymphoma in January of 2008. “All of a sudden I wasn’t a young healthy 20-something any more. I had something in my body killing me.”


On Sunday she wore one word on her shirt: “Survivor,” eliciting cheers from onlookers as she crossed the finish line at the Nike Women’s Marathon and Half Marathon. Marcheschi was among 4,000 members of Team In Training (www.teamintraining.org) who raised more than $14 million to support blood cancer research and patient services at this year’s marathon.


Read more about her story here, in today's San Francisco Chronicle article.

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