The Leukemia & Lymphoma Society Community : Blog List - All Communities

OMG!

communityreply@lls.org — Thu, 19 Nov 2009 00:33:21 GMT

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

A Story of Hope and Persistence

communityreply@lls.org — Mon, 16 Nov 2009 17:40:54 GMT

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.

Six Miles!

communityreply@lls.org — Thu, 12 Nov 2009 23:48:38 GMT

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

Basketball Legend Kareem Abdul-Jabar Diagnosed with CML

todd.whitley@lls.org — Thu, 12 Nov 2009 22:51:21 GMT

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.

Almost Forgot To Add.....

communityreply@lls.org — Mon, 09 Nov 2009 22:13:37 GMT

Join my LLS Cause on Facebook!!!!

Really?!

communityreply@lls.org — Mon, 09 Nov 2009 22:09:43 GMT

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!

Give & Get for the Holidays - Save BIG at Gap, Inc. Stores and Help Kids like Matthew

christine.lazzari@lls.org — Fri, 06 Nov 2009 19:21:15 GMT

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.

Jennifer 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.

Team In Training Coaches @ The Nike Women's Marathon

christine.lazzari@lls.org — Fri, 06 Nov 2009 18:46:07 GMT

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.

"As Long As I'm Here" - A CD That Supports Life-Saving Blood Cancer Research

todd.whitley@lls.org — Thu, 05 Nov 2009 15:18:06 GMT

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

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!

low grade non hodgkins lymphoma

communityreply@lls.org — Wed, 04 Nov 2009 13:04:17 GMT

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.