MaryAnn introduced our speaker, Kaoutar Tlemcani, MD, Hematology/Oncology. She was not what I was expecting, and I was delighted to have my expectation be so wrong. (don't ask). The topic fit my diagnosis: Non-Hodgkin Lymphoma, and the focus centered on understanding your disease and treatment options.
Never in my life have I ever wanted anything to do with science, and never more in my life have I wished I had paid better attention in all my science classes and had a science-oriented brain. I did not; I do not. Having made that caveat, I can tell you that most of Dr. Tlemcani's slide presentation was far beyond my layman's lexicon. Still, I discovered many things I had not yet researched, so the evening was a wonderful experience on many levels, for both my husband and me. I am grateful to the Lymphoma and Leukemia Society for the vast network of information they provided for us, even before the Dr. Tlemcani's program began.
In outline form, Understanding Lymphoma: General Concepts
- Malignancy of whiter blood cells called Lymphocytes
- Originate in the bone marrow
- circulating in the blood
- in the lymph nodes ("glands")
- in the lymphatic system (spleen, thymus, tonsil, digestive and respiratory mucosa).
There are several ways to diagnose NHL, but I learned from the 3 people in the post-dinner discussion that all of them, like me, had difficulty being diagnosed, and that all of them, like me, took nearly a year to reach a determination. Because lymphoma is a blood cancer, staging (determining the level of your cancer) is NOT the same as in "solid" cancers, so a Stage IV, incurable in solid cancers, is curable in lymphoma, depending on the type of lymphoma, and there are 30 distinct types of the disease.
To determine if you have NHL (or any kind of lymphoma), your first step is a CBC or Complete Blood Count test. This test will scan for organ function, LDH, hepatitis profile, and HIV testing. Then scans: CAT or PET. I had both, and the PET scan, which should be a determiner, was not "hot." (This brief soundless video shows the detection of a "hot spot.")
That led to the next diagnostic tool, one that I avoided for several months, an excisional lymph node biopsy, either a partial or total removal. I had a partial. Finally, a bone marrow test will determine staging and level. My disclaimer for this post is that I am paraphrasing Dr. Tlemenci's very excellent but very medical-specific jargon.
To fully understand your disease, you need to understand the basics about blood. NHL blood cell components consist of white cells which fight infections. According to MedicineNet.com:
Lymphocytes are a small white blood cell (leukocyte) that plays a large role in defending the body against disease. Lymphocytes are responsible for immune responses. There are two main types of lymphocytes: B cells and T cells. The B cells make antibodies that attack bacteria and toxins while the T cells attack body cells themselves when they have been taken over by viruses or have become cancerous. Lymphocytes secrete products (lymphokines) that modulate the functional activities of many other types of cells and are often present at sites of chronic inflammation.Red cells are oxygen carriers and platelets stop bleeding. Based on blood work done, your disease course will be identified as indolent (my diagnosis and very lucky at that, I know), aggressive, and very aggressive. These prognoses are based on a compilation of factors known as prognostic scores. From experience I can tell you I felt I was thoroughly tested, and at times grew weary of the tests but they are necessary. From these tests, you get an IPI, or International Prognostic Index which identifies your survival risk as low, intermediate low, intermediate high, or high for lymphoma patients. For NHL patients like me with follicular lymphoma, from Dr. Tlemcani's PowerPoint, I learned you get a FLIPI, or Follicular Lymphoma International Prognostic Index based on a point system:
You get 1 point for each:I do not know my FLIPI score but it will the first point of inquiry when I meet with Dr. Sunita Nasta in July.
Based on 4 additional factors (I do not understand the abbreviations so I am not including them), you will get a low, intermediate, or high-risk rating.
- Age > (over) 60 years
- Ann Arbor stage III or IV
- Hemoglobin level <(less than) 12 g/dl
- Number of involved notal areas >4
- LDH > upper limit of normal.
Dr. Tlemcani's slide show is not available online (we were given hard copy), but I found one on Slideshare's MD Specialclass that is user friendly and helped me understand my disease.
Even though Non-Hodgkin Follicular Lymphoma is the most indolent form, there are still risks that NHL could move to the brain and a lumbar puncture (spinal tap) is required and therapy is different for treatment, or NHL could move to other organs, so you are never totally safe at your diagnosis. Because you cannot cure Follicular NHL, you do not want to be too aggressive in treatment bacause of the toxicity of the treatment.
Treatment options for NHL vary, and as one of the panel members stated, if you have to have something, Follicular NHL is the best thing to have because there are so many new treatment options that continue to emerge. The last 5 years has seen many new options approved, and the better use of some existing therapies, newly combined, or in geek tech language, a mashup, much like Web 3.0. These "newer" treatments include:
- Another newer drug, Bendamustine, is approved as a singular agent for follicular lymphoma, and some studies exist for Retoxin. Bendamustine is superior to CHOP therapy. Nausea comes from Bendustine; treatment is 2 days every 28 days for indolent lymphoma as a first client option.
- Autologous STEM Transplant - not primary first client treatment; it is used only in aggressive lymphoma. You give the patient a high dosage chemo after harvesting autologous (patient's own) STEM cells, then use high dosage chemo, then take the salvaged STEM cells and infuse them back into the patient's body. Same process can come from a donor (allogenic) match (sibling). Allogenic transplants not after 55; autologous may be done for patients into their 70s.
- Clinical Trials: Patients whose bodies have become immune to treatments or have few options left are good candidates for clinical trials.
- Phase 1: Those patients who opt for Phase 1 trials are true heroes, because they are the first human subjects to use the drug(s). The goal is to determine and establish safety and patients with rare cancers are often Phase 1 testers. These people test the drug for market. If there is nothing else to offer, then Phase 1 is an option, better than creating a new approach. Phase 1 determines if the chemo suite can move to Phase 2.
- Phase 2 establishes dose and efficacy of drug: best dose, best result for patients.
- Phase 3: compares the new drug at previously established optimal does to a well-established standard of care. The new drug goes head-to-head against an established protocol. Blind studies on all 3 phases.
One of the best parts of the evening was the panel discussion with 3 lymphoma patients, each with a different type of the disease. From them I learned, unlearned, and re-learned:
- Watch and wait; your body can become immune to treatment, so don't rush to treatment (from the man who had the same type of lymphoma as I).
- The best thing you can do is learn, because it takes the fear away.
- Live each day as fully as you can.
- Laugh often.
- Lymphoma can migrate.
- Drink green tea not coffee.
- Find and drink Essiac, a holistic detoxing tea found in most health food stores.
- Chlorescence is a gentle detox, and it is good to detox your body, because it is toxic.
- Keep a positive attitude.
- Remain active.
- Check out acor.org and its daily digest feature.
- Join a Light the Night Team for the October Walk at Northampton CC.
- Don't let your disease dictate, but you do need to replenish yourself.
- Listen to your body.
- Find the new normal, your new new.
- Give yourself permission to sleep 8 hours...good quality sleep and take a nap.
Pocono Medical Center
Lynn Steele Heller
Lymphoma and Leukemia Society