LLS Blog

We need your help.

 

As you know from my previous communications, there are patients still waiting for the completion of a late phase clinical trial. A trial where nearly half the participants have more than doubled the average survival term.

 

It's one that we are determined in finishing a full year ahead of schedule.

 

 

Our goal will enable the testing of a drug that targets pathways active in cancer cell growth; finding its way to patients in desperate need.

 

$3.5 million has already been raised but to meet our goal we still need $1.5 million. And that's where you can help us. We need your support to help get treatment to patients immediately.

 

And we are running out of time for patients playing the waiting game. We need your help now. Please donate, get us to our goal and save lives.

 

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Thank you for your generosity!

 

John E. Walter

President & CEO

Recently LLS had the opportunity to talk to Katherine about her experience last year as a newly diagnosed CML survivor and how she is doing today.

 

Katherine: I went to the doctor on February 15th, 2011 because I felt a hardness under my left rib. I was hoping that I actually had acquired a new stomach muscle. It was my enlarged spleen. The rest of the day was filled with tests to verify that I had chronic myeloid leukemia (CML).  The moment you hear the word “leukemia,” the world slows and a new reality appears. I went on auto pilot, feeling as if this was not a real day and it was not me going through this.  My identity was shattered.  I was a career woman, mother of two, avid runner and the one who could do it all; it was hard to accept that I was now a cancer patient.  

 

The next few months were about treatment. I started on Gleevec® and had endless testing. The side effects of Gleevec were tough. Bone pain, feeling nauseated, swollen sore joints and swollen eyes were now part of who I was. I had to endure through the side effects; there was no treatment other than time. I was unable to take pain killers, since that would affect my platelets. I knew I had no choice-- I had a family to take care of.  Thanks to the fabulous care of my physician and nurses at the University of Wisconsin--I had confidence they were doing a great job, I never wavered from their direction. They monitored my treatment with blood tests that continued to show positive results. 

 

LLS: Did your treatment team do anything to help you treat your side effects or deal with them?

Katherine: I was told I could take one Advil a day for my bone pain, not more because it would affect my platelets. The team did not focus on my side affects; they focused all their time on getting my white blood count back to normal.

 

LLS: When you were having those harsh side effects, what made you keep taking the drug?

Katherine: I kept taking the drug because my only focus was to get the CML in check. It never occurred to me to stop taking the drugs to reduce the side effects, because that meant death.  Since all the blood work was showing positive results, I was being tested twice a week, I had “instant” gratification. It is like being pregnant and having morning sickness, you endure because you know there will be a positive outcome.

 

LLS: Why are you still taking the drug- what is your motivator?

Katherine: There is no cure for CML. I have been told I will be on this drug for the rest of my life, so I told myself I better figure out how to manage the side effects, since this is the new me.  

It is a very simple equation: Take Gleevec and add years to my life with some side effects or not take the Gleevec and die…hmmm, which option would you take?

 

LLS: Do you still have side effects?

Katherine: After about 3 months most of the side effects subsided. I still get joint pain, however that is very minor.  I have to really watch what I eat, since fluid gain is a major issue, however, if you eat right and get tons of exercise this is not an issue, at least for me. 

My eyes are pretty much back to normal and there is no nausea.  This also can be controlled. They had told me to take Gleevec on a full stomach and with full glass water, and this truly makes all the difference.  Any time I do not follow this, I am nauseous for a couple of hours.  

 

LLS: Did you know about what side effects to expect when you started Gleevec?

Katherine: Not a 100%, it was a learning curve. As I got the side effects, I would ask the hospital staff.  I was able to call the hospital at anytime and I would get instant answers. Either from a nurse, doctor on call, or pharmacist. I remember the first time I called the hospital pharmacy and a pharmacist actually picked up the phone (not voicemail) and immediately answered my drug questions. After I hung up I told myself…holy moly, I am sick!!! Okay, those were not my exact words. 

 

Talking to other patients I have learned I am getting excellent care.  Being under the U of Wisconsin Hospital care is a blessing. I also have a doctor who is incredibly compassionate and has outstanding bedside manner.  She always asks me a personal question when she walks in the door, human being first and patient second. 

 

LLS: Did you ever not take your medication because of your side effects?

Katherine: Never!

 

LLS: How are you doing now?

Katherine:  I am training for a new TNT event “The Green Bay ½ Marathon” on May 20th. We all need love and support through this journey. I had the love of very special friends and now I also need to be around others going through the same experience. We all need to find this; we cannot fight this alone. With my two children and loving friends, I wake everyday thankful I am here and blessed to continue enjoying life.

 

 

This is the first in a series by and for the CML community funded by a grant from

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Dear Friends,

Here is a Mother's Day gift that requires no watering, adds no calories and can save lives.

 

Dan grew up wondering how long his mother would survive her 25-year struggle with breast cancer and leukemia.  Today, he knows that research supported by The Leukemia & Lymphoma Society (LLS) decades earlier led to the science that gave his mother time to see three children grow up and six grandchildren born.

 

 

Blood cancer research can be the gateway to curing other diseases because it's easier to study cancer-causing molecules and test new therapies in blood than in solid tumors. By funding research and expediting promising science toward approval and commercial development, LLS is transforming good ideas into new therapies for patients.

 

One promising clinical trial is using a targeted drug that blocks pathways that are active in cancer cell growth and survival.  So far, nearly half the trial participants have more than doubled the median survival term.  Inspired by these results, LLS has raised $3.5 million to accelerate this trial by one year.  We need another $1.5 million to complete the task.

 

Your gift toward research will help accelerate saving lives in the same way that earlier advances enabled Dan's mother to see her family grow.

 

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Thank you for your generosity!

 

John E. Walter

President & CEO

Watch for the CML Blogs, an exciting forum that gives volunteers of The Leukemia & Lymphoma Society (LLS) a platform to discuss key issues for chronic myeloid leukemia (CML) survivors. The words of patients, advocates and healthcare professionals will create awareness and start an ongoing dialogue on topics such as side effects, fertility, paying for medications, treatment monitoring tests and results and living with a chronic disease. We are looking forward to a lively interaction among bloggers and followers - check back soon for the first post.

Dear Friends.

In addition to gifts of flowers and candy this Mother's Day, consider gifts of hope and health!

 

Eight years ago, Jane was diagnosed with lymphoma just three weeks after giving birth to her second son.  In short order, Jane and her husband were packing up their newborn and a three-year-old for the first of a series of trips to Houston for chemotherapy. jane_spring.jpg

 

Within two years, Jane's routine moved from active treatment to active training for the Austin Half-Marathon through The Leukemia & Lymphoma Society's (LLS) Team In Training, a way for her to raise money to help accelerate finding cures for other patients.  " I value scientific research," Jane reports enthusiastically. " I know that a relapse would require new treatment."

 

LLS is partnering on a promising new treatment with a biotechnology company and we need your help.  We're supporting a late-phase clinical trial that could lead to approval of a new drug that might double survival for some blood cancer patients.

 

LLS looks to accelerate the trial by a full year, providing a life-saving difference to patients who have few other treatment options.  LLS has raised 70 percent of the funds needed and is seeking the remaining $1.5 million to hasten the completion of this trial.  Your donation can speed progress and provide hope to cancer patients like Jane.

 

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Thank you for your generosity.

 

 

John E. Walter

President & CEO

If You're a New Yorker -- Here's what you can do to participate:


Today advocates from all over New York are gathering in Albany to urge their state officials to ensure that the essential health benefits established as part of New York’s health insurance exchange include a set of core principles that will protect and benefit cancer patients at all stages of their cancer care. Understandably, not everyone is able to make the trip to Albany, but there are still ways that you can be a part of the action without the travel!

The first is to make your voice heard! By taking just one minute you can join the volunteers on the ground by visiting LLS’s Advocacy Center to send a pre-drafted email urging your representatives to support this legislation. You can even personalize your message so that your representatives understand fully your connection to blood cancer and the importance of ensuring quality care for cancer patients in the essential health benefits package developed in New York. To learn more about this issue, please visit the LLS’s State Campaign webpage.

The second way you can participate is by following the day online! LLS volunteers and staff will be adding content throughout the day on LLS's Advocacy Communiity, Facebook, Twitter and Flickr pages. If you are already a member of these communities, simply log on and follow us throughout the day. If you have not currently signed up for these services, please take a moment to sign up for free today and begin to enjoy all of the great content LLS provides!

Just because you could not make the trip to Albany does not mean you cannot still participate in the day’s activities. Our event begins at 10:30 a.m. Please follow along!

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