Thursday, March 29, 2007

About Transplants

You may have heard about transplants but may not know the process. There are several types cell transplants available to treat patients with blood cancers. Although transplants are used to treat a number of diseases, I have italicized the diseases that are specific to our mission.

Autologous Transplants
Samples of the patient's own bone marrow or peripheral blood stem cells can be removed, frozen and stored to be returned after chemotherapy or radiation therapy. Diseases treated in this manner include:
Brain Tumors
Ewing's Sarcoma
Hodgkin's Disease
Non-Hodgkin' s Lymphoma

Allogeneic Transplants
In allogeneic transplants, the patient's bone marrow is replaced with marrow from a donor who is either a family member or a matched, unrelated donor. Our doctors provide allogeneic transplants for a wide range of blood diseases, including:
Hematologic Malignancies (Cancers of the Blood)
Acute Lymphoblastic Leukemia
Acute Myelogenous Leukemia
Chronic Myelogenous Leukemia
Juvenile Myelomonocytic Leukemia
Myelodysplastic Syndromes
Non-Hodgkin' s Lymphoma

Genetic Diseases
sickle cell disease
Severe combined immune deficiency
Fanconi's Anemia
Wiskott-Aldrich Syndrome

Other Blood Disorders
Amegakaryocytic Thrombocytopenia
Aplastic Anemia
Diamond Blackfan Anemia
Hemophagocytic Lymphohistiocytosis
Kostmann Syndrome

Types of Transplants
The types of transplants include bone marrow, peripheral blood, and cord blood transplants using HLA-matched sibling donors, unrelated donors, and family mismatched donors.

Wednesday, March 28, 2007

The world is my oyster!

Or the other way around ...

After a lovely weekend with the new boy and friends, visiting the Hirshorn and Gordon Biersch, I woke up on Monday in excrutiating pain.

A familiar excrutitating pain. One I remembered disctinctly from college ...
kidney stones.

I attempted to tough it out for a couple hours then gave in to the pain and called the doctor's office. Three hours of waiting later, I had a prescription for an antibiotic, one for morphine, and a referral to a urologist.

The rest of the day was spent in a light opioid induced slumber. I awoke the next day to a new hell:

I will never be a drug addict. Apparently, I am allergic to morphine. I spent approximately five hours throwing up and dry heaving, and another five wishing I could and itching like I had used poison ivy shower gel.

I learned several important lessons that day.
1. When you get a prescription for a new drug, get it in the shortest length form possible. The morphine pills were 24 hour extended release, which meant I had to wait forever for them to wear off, and by the time the reaction showed, it was too late to pump my stomach.
2. As triathletes, we're supposed to be in touch with our bodies. I hadn't felt great this weekend, but ignored it and tried to soldier on. Take time to rest, pain and discomfort are warning signs. Witness the psychic shoulder.
3. I have awesome friends. Superhero M. came over and babysat me (I have a history of fainting spells when sick), and took me to the urologist, and brought me sugar-free oreos.
Best new boy brought me dinner and flowers (pink again!) and did not pass judgment on my sickness induced wearing of neon green velour pants.
4. Build sick time into your training schedule. I am so relieved that I am exempt from the Gulf Coast event so that I didn't have to feel guilty about missing these past few training days. You shouldn't feel bad about putting your health first anyways, but it helps to build flexibility into your training schedule.

Friday, March 23, 2007

Patient and Family Support

In addition to research, a major service is patient and family support. The following is a quick overview of some of the services. Sara Singer is the contact person. She is a real champion at the Society especially when it comes to helping out patients and families. Read on.

Family Support Groups
The Family Support Group Program is based on the idea that open communication is critical for coping with all the feelings that arise during illness. Professionally led groups help patients and family members discuss their anxieties with each other and with others who share the same burden. All patients, family members and friends affected by leukemia, Hodgkin and non-Hodgkin lymphoma and myeloma are invited to attend free of charge. First Connection Help for newly diagnosed patients is only a phone call away thanks to the Society's First Connection Program. The program matches newly diagnosed patients with others who share a similar diagnosis or situation to provide support, information and hope. The Trish Greene Back to School Program for Children with Cancer Information to help children make the transition from clinic to classroom is available for students, parents, educators and health care professionals.

Patient Education
The Society provides free information including literature, posters, videos, educational programs and public service advertising. Information is available through the chapter office as well as through the national Information Resource Center (IRC) at (800) 955-4572.
The chapter offers the following free public education programs:
Cancer: Keys to Survivorship
Clinical Trials
Meet the Expert on Non-Hodgkin Lymphoma

Patient Financial Aid Program
Limited funds are available on a reimbursement basis to assist with the payment of out-of-pocket costs for chemotherapy, radiation, some lab work and transportation to the oncologist's office.

Community Connections
Information about community resources available to assist you and your family can be obtained from our office. Patient-Related Volunteer Opportunities Help our local chapter at health fairs, special events and marrow donor drives, among other activities. You can make a difference.

Thursday, March 22, 2007

Needs more cowbell

A few weeks ago, I ran/ gallumphed the Baltimore-Annapolis Trail half marathon.
I dragged my happy butt to Annapolis just barely making it in time to sign up.
In fact, I sold out the half marathon, which the race director deemed lucky.
For being lucky, she gave me green Mardi Gras beads and a neon green running hat. Then it was the hour and a half long drive back to Vienna and sushi with John and Beth.

I like to eat some odd things as pre-race dinners. When running at home at the beach, I usually have spanikopita the night before. Race day it's all liquids until the race is over.
Sushi was a bad call. I had been sick that week and hadn't really eaten much on Saturday. For dinner, I had veggie tempura and miso soup, and forced down a bowl of rice, so I'd at least have some carbs in my system. Not so smart.

Sunday, I argued with myself for about an hour as to whether or not to head up to Annapolis to run the race. I was tired, it was cold outside, and I still wasn't feeling 100%. I decided that at the very least, I needed a long run to prep for the Shamrock half, and that sleeping in wasn't productive. So I dragged my butt out of bed and up to Annapolis to run.

It was cold and windy.
Wearing my red UnderArmour tank top (yes, I'm superstitious), a long sleeve UnderArmour t-shirt from the Baltimore half, my lucky green Mardi Gras beads, and a black cotton Gap sweater, shorts, and track pants, and I was freezing. I was so glad I had remembered my gloves.

The "trail" run was entirely paved and gently uphill the whole way out on the out-and-back course. I like continual inclines better than hills, and Yoda makes me run on an incline at the gym, so I didn't mind so much. What did really suck was that on the way back, where I had been hoping I would have a negative split even if it was artificial, was into a headwind. And my lack of food the day before caught up to me. I was tired, and my pace was shameful. I knew I wasn't anywhere close to making my time goal, and just settled in for having a nice day out in the (cold) sunshine.

Overall, it was a pretty (cold) day, and it was good to run, and I'm glad I did it. However, I definitely enjoy larger races better. I'm a solid back of the packer, and there were large stints where I was running essentially by myself, and I like the cheering and noise of bigger runs. And there tend to be more people finishing late at those events. It's a little demoralizing when they are packing up the water station when you get there, and people are leaving the parking lot when you finish.

Hats off to Jen who ran a true trail marathon on Saturday, then ran the half on Sunday and still beat me in. And who managed to take a shower in the ice-cold water at the gym. You are a champion!

Wednesday, March 21, 2007

How is money for research spent?

The Society has 3 research grant programs:

1) Career Development Program: supports promising young scientistswith 3-5 year grants.

2) Translational Research Program: provides 3 year grants to support early-stage research on blood cancers; funding is extended for highly promising projects.

3) Specialized Center of Research (SCOR): these are grants given to clusters of research groups that work together to find new ways to treat blood cancers. These research groups are awarded up to $1-1.5 million annually for 5 years.

Did you know…The Leukemia and Lymphoma Society is the world's largest voluntary health organization dedicated to funding research for blood cancer and providing education and patient services.

Tuesday, March 20, 2007

My shoulder is psychic?

So, for while my shoulder has felt like there is a slow burning fire inside of it, occasionally like someone is shoving a hot poker underneath my shoulder blade and out the front.
I tried strengthening it with free weights under the supervision of Blaine, my Yoda. This ony produced two results: 1. Semi-immediately my pinky and ring finger would go numb. 2. Later, serious pain.
This also meant I couldn't swim, and for someone planning to do a half ironman, practicing swimming a mile is generally important.
So Yoda said "To the doctor you go".
(Actually, it was more like, "You get that shoulder checked out yet?" followed by eye-rolling after my "Not exactly ...")

So I journeyed to orthopaedic Mecca, AKA Reston, where I met with the two wise men: Dr. Fleeter and his fellow.
Omnidirectional rotation of my shoulder and an x-ray showed that I did not have a bone spur, as I had suspected. What I did have was scapular dyskinesis, rotator cuff tendenosis, and bicep tendenosis. Turns out being double-jointed is a bad thing.
This got me 6 weeks of physical therapy, and an MRI. And no doing anything fun that makes it hurt during that time, including swimming and rowing. Booooooooooo.

I do have to say I am super excited about the MRI. I mean how often do you get to see a color image of your internal organs when it doesn't involve something scary like cancer? I'm pretty freaked out about the injury, but from a geeky standpoint this is going to be cool.

The really, really bad part is that I will not be able to do the half ironman with the Team In Training crew, since I can't train on swimming, and my swimming base wasn't all that strong to start.
I am going to complete an event with them, it just might be a marathon instead. It all depends on the MRI and whether I have a torn rotator cuff, or just a wayward gummi bear that has gotten lodged in my shoulder.

Monday, March 12, 2007

Trial Uses Measles to Kill Bone Marrow Cancer

Trial Uses Measles to Kill Bone Marrow Cancer
-- Robert Preidt
SUNDAY, March 11 (HealthDay News) -- U.S. researchers are launching a phase I clinical trial to test an engineered measles virus against the bone marrow cancer multiple myeloma.
Multiple myeloma is a type of cancer where plasma cell tumors are spread throughout bone marrow.
In this trial, conducted at the Mayo Clinic Cancer Center in Rochester, Minn, the measles vaccine will be administered intravenously to adults with relapsed or refractory (meaning patients have failed more than one type of treatment) myeloma. The participants must not have had allogenic (from another person) stem cell transplants and must have previously had the measles or been vaccinated against it.
This is the third in a series of Mayo studies testing the potential of measles to kill cancer. The other two studies are looking at the effect of measles on recurrent ovarian cancer and a type of brain tumor called glioblastoma multiforme.
The measles viruses used in the research were engineered by inserting additional genes into the measles vaccine strain. The measles viruses seek out a protein called CD46 -- which is overexpressed by many cancers -- and use it as a receptor to enter the cancer cells.
Once inside the cancer cell, the measles virus spreads and infects nearby tumor cells, causing them to fuse together and increasing cancer cell death.

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