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| https://www.alexslemonade.org/ |
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| Text LEMONADE to 85944 to make a donation |
AFTER CANCER. A survivor's story. Against the odds.
Showing posts with label Health. Show all posts
Showing posts with label Health. Show all posts
Wednesday, March 30, 2011
Alex's Lemonade Stand: Fighting Childhood Cancer
Sunday, March 20, 2011
Six-Legged Walks, Ecotips, and Beating Back Cancer: Life Choices to Beat Back Cancer
Cross posted on Learning Llamas.
Weathering winter can challenge the best in us, and despite a harsher noreaster season than usual, signs of spring revitalize. A thick sheet of ice blanketed the farm most of the winter months, thick enough to ice skate, really. All of which made walking a brand new ADHD Black Labrador Retriever puppy a challenge because she always has energy to burn, even after an hour plus walk. The snow stayed forever but still we took our six-legged walks. Not nearly as long but definitely more often, so it all balanced. And here's the cancer connection: in spite of being outdoors at least 3 hours a day in all conditions, I never spent a healthier winter, and I owe this feat to how I choose to live. Walking Allie keeps me fit and lets me sleep through the night without Allie wanting "out."
Clearly, having 7 llamas, one of which is a growing cria, 185 acres, a husband, a city home, and a teaching career, plus 5 blogs (farmlife, cancer, school, DEN, and tech), I am always busy. And that works for me. No matter how I feel, physically or emotionally, knowing my llamas depend on me gets me up every day at 4:30 AM to begin an hour-and-a-half routine of caring for my house and barn animals. After school, another hour plus (never minus). With a house, barn, and farm to keep clean, vehicles charged, cleaned, and all the seasonal work that comes with a farm plus grading students' work keep me very busy. Seeing a cancer connection pattern here, right... My cancer specialist Dr. Sunita Nasta at the Perelman Center for Advanced Medicine, part of Penn Medicine at the Abramson Cancer Center repeatedly tells me that exercise if the best medicine, but warns me not to get exhausted. Working on the farm is whole body exercise, with the added body and soul or mind-body connection. Despite occasional fatigue, I would not change my life an iota.
Then there's the issue of consumption. What we choose not to consume is as critical as what we opt to select. I've moved away from most canned goods, plastic as much as possible (yes, I read for numbers). The newest and best packaging of food has moved away from BPA (Bisphenol A) because it is a suspected endocrine disrupter, a chemical that can interfere with the body's gland and hormone functions. The FDA is "working on" deciding what safe levels are. I just avoid the claptrap by choosing glass, carefully prepared frozen foods, and choosing organic. I eat a balanced abundance of grains, vegetables, and fruit, some of which comes from our farm or our neighbors' farms. Meat is usually not on my menu. This summer I am beginning an organic garden, using carefully harvested heirloom seeds that are NOT irradiated. Can you tell I am moving closer to the "R" word (retirement). Watching what you eat and drink and how your purchased food is packaged can be a lifesaver.
Another daily practice is to read and research about cancer, and I choose mainstream, nontraditional, and alternative research therapies in hard and digital formats. I read, read, read. I look for venues that provide me with possibilities for better living in harmony with the earth. I found a free magazine (supported by practitioner and business advertisements) called Natural Awakenings. It has an online presence, but exists nationally, and if your locale does not have a current NA magazine, you can become a publisher. Inside each monthly issue is a world of lifestyle changes from which you can choose those that suit. One of my best finds from this periodical (I still love hard copy although I live a digital life) is Twin Ponds Integrative Center, a place that aggregates healthful programs, integrative practices, holistic therapies, and vibrant options for moving forward with a happy lifestyle that supports beating back cancer.
Fourth and final daily approach: prayer. Although a cliche in a post-postmodern world, I believe in the strength and healing power of prayer. Whether I'm cleaning pastures or doing yoga, I tune into God, have conversations of the silent sort, thanking and counting blessings. I pray for others, because what goes around comes around and back to you. Better to receive prayers from others than to ask God yourself. And I've learned to listen. Silence speaks, and in the early morning hours with my llamas, or in romping six-legged walks, or in late-night visits to check on the girls, I carry God's presence in my life with me.
The end result: a healthier happier me. But then, I have said this so often, I've been really lucky. Blessed.
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| Allie loves winter, water, but not ice... |
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| Hours old Golden with Rev and Aunt Tess |
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| Gishpheol A Nalgene plastic~think before you drink |
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| Great online resource for living better |
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| Affordable symposia @ $25 |
The end result: a healthier happier me. But then, I have said this so often, I've been really lucky. Blessed.
Thursday, October 21, 2010
Gia Pronto
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| Dining, naturally! |
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| Atrium dining |
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| Interesting art |
Choose from 10 homemade soups, design your salad, select your coffees and teas, or gourmet hot chocolates, or fizzy or flat cold beverages. If you love pizza, Gia Pronto will ruin you forever. Nothing exceeds the pizzas they create, or the way they serve it. You can select the size you want and they cut it to suit. If you love a panini, then Gia Pronto is the place. If you can possibly handle dessert, treat yourself to the highest largest thickest piece of pound cake. My choice: cranberry nut. Delicious.
Fighting Blood Cancers
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| Exceptional Excellence |
My husband and I are at the Perelman Center for Advanced Medicine, 2nd Floor West Pavilion, and that means I am a cancer patient. And a lucky one at that, because my diagnosis, Non-Hodgkins Follicular Lymphoma, is an indolent cancer. If it weren't for a serendipitous surprise finding, I would still not know I have cancer. Anyway, I'm too busy to have cancer. Fortunately, my blood profile is excellent--normal--love that word, and so are all my other vital signs. Really, I would not know I have cancer if I had not been diagnosed. And that's the wonderful thing about my form of cancer; you live with it but you do not die from it. But you are never cured, either. So, that leaves my status uncertain. I am not a survivor, nor will I be, unless living makes it so. Technically, I'm not a previvor, because I do have cancer. Guess I am just someone fighting blood cancer, however gently, for the moment.
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| Industrial Brooms |
I think I will.
Saturday, October 16, 2010
I'm Too Busy To Have Cancer!
So busy I forgot I even had it--for months.
When teachers at school kept asking me how I was, I didn't make the cancer connection. Even when they asked, "Really" to my "Wonderful-- never been better," I didn't tumble.
Sounds unbelievable, but it's true. I just don't see myself as someone with cancer. This is not escapism, denial, or any other ditzy thing. I just plain forgot about it.
School is busier and better than ever; I absolutely love my classes--I have the best students and cannot remember when I have enjoyed a year more, without exception. Even with the building construction, I have been so fortunate. I'm back in my favorite room, but leaving it for a mid-year relocation to my new permanent room, and it's a beauty. Large enough for my classes to do Project and Challenge-Based Learning in comfort. We are moving to a block schedule, reminding me of my days as the Lucy B. Moses Teaching Fellow, tutoring college juniors in Middle English and Chaucer on the block. With a robust school website, Moodle to organize my students' lessons, and Sapphire, a new student management system, and a great Professional Learning Community for PD, well, I am truly blessed and definitely very happy.
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| Gold Is Where You Find It |
Life on the farm seems almost a blur; a new dog, a new cria, a new automatic Jug Waterer system and a frost-free pump. Can life even possibly get any better. Think not. The GALA Conference ~ The Magic of Llamas is approaching, with a committee luncheon meeting tomorrow followed by a gala dinner for my best friend whose birthday I forgot (gulp...guilty). Tonight dinner from scratch for friends I haven't seen in months of being busy.
And perhaps that's a good thing. I have been to busy living even to contemplate life's slowing down. I still lift heavy hay bales, still clean 4.5 acres of pastures, still get up at 4:30 AM to do my keeper of the farm thing, then drive 45 minutes to school, where I cannot wait to meet and learn and teach with my students.
When I arrive home, I repeat the feeding/cleaning process, take Allie for a long hour's walk/run, do the dinner thing, grade online...and try to get 8 hours sleep.
See, I told you I was too busy to have cancer.
Saturday, September 11, 2010
Healing Powers
Allie Settles Into Her New Home from RJ Stangherlin on Vimeo.
Animals heal. Research supports this simple statement. I am not naive enough to suggest that pets provide a cure for cancer or various ailments. But I do know one irrefutable fact: they work their calming magic for me, and I am the beneficiary of their subtle ability to heal, make whole. The beauty and grace of their love infuses me every day with a healing calm, enabling me to maintain a totally positive approach to my disease. In fact, my cancer is not, at least at the moment, on the march. While I will never be cured of Non-Hodgkins Follicular Lymphoma, my disease's progression is another thing. At the moment, I am holding fast.
When our dog Julie went over the rainbow, my heart broke. Sleeping with her on the floor, holding her tight, hoping for a good outcome broke my heart. And while some criticized my lack of suitable time spent in mourning Julie's loss, I knew I needed another dog, quickly.
We found Allie through a former student, Janelle Moser, who sent me a link to her breeder--in Virginia. Jennifer Brinson volunteered to travel the 560 miles round trip to fetch Allie, and the rest is history. I could feel the inner difference even on the long drive home. That inner repose, the knowledge that life was whole again. I know I control my climate, but it is always better because of the animals that share my life. But perhaps you have to be an animal person to understand.
As for me, I'm off to the barn to tend to my llamas and check to see if maybe today, on this lovely cool country morning, I just might have a new cria to greet.
Healing Powers
Animals
Animal Therapy
Cancer
NHL
Wellness
Jennifer Brinson
Friday, September 10, 2010
SU2C + Discovery Health = Lifesaving
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| An excellent digital resource from Discovery Education |
- Because this product has relevance to every curriculum.
- Cancer touches every family.
- I have students battling cancer, as well as their family members.
- Art imitates life, and literature, print and non-print media, increasingly explores health, wellness and diseases in writing life.
- Because I am rewired digitally, and while not an iGeneration, I teach them, and they make an impact on my daily life, in and out of the classroom. So does Discovery Health.
- And because I have cancer.
- Because I am beating back cancer with resources available to me in a format I embrace -- Discovery Health.
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| Airs tonight! |
And to be honest, anything that can improve the quality of life, improve a lifestyle, or save a life--that's for me. Thank you, Discovery Health, for really making your products authentic, relevant, and well, lifesaving.
Thursday, September 2, 2010
30 Days 30 Ways to Beat Back Childhood Cancer
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| Alex's Lemonade Stand promotes hope for children with cancer. |
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| Go to Facebook and click the "Join Cause" button to help fight childhood cancer. |
Twitter - www.twitter.com/AlexsLemonade
You Tube - www.youtube.com/AlexsLemonade
Flickr - www.flickr.com/AlexsLemonade
LinkedIn - http://linkd.in/9W7s3w
MySpace - www.myspace.com/AlexsLemonadeStand
MyYearbook - www.myyearbook.com/AlexsLemonade
About Alex's Lemonade Stand Foundation, a 501 (c) (3) nonprofit organization:
Alex's Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of cancer patient Alexandra “Alex” Scott (1996-2004). At the age of 4, Alex announced that she wanted to hold a lemonade stand to raise money to help find a cure for all children with cancer. Since Alex held that first stand, the Foundation bearing her name has evolved into a national fundraising movement, complete with thousands of volunteers across the country carrying on her legacy of hope. To date, Alex’s Lemonade Stand Foundation, a registered 501(c)3 charity, has raised more than $30 million towards fulfilling Alex’s dream of finding a cure, funding over 100 research projects nationally.
For additional videos, click here.
Thank you so much for your continued support! Together we can bring much needed awareness to pediatric cancer and ultimately find a CURE!
Thursday, July 22, 2010
The Story of Cosmetics: It's YOUR Story!
Is your clock ticking? This one is. In one month--or less--you can be one your way to a healthier you. Why a month? Because change isn't easy. You can begin by watching a short video that could change your life.
Forever.
With some indebtedness to Common Craft's Explanations in Plain English format, this video should touch a nerve. Should make you rethink what you purchase. Should make you a label reader (if you cannot pronounce it, you do not want it).
From cancer survivor Kristi March, a video that speaks to the heart of making correct choices about carcinogens in cosmetics, including a "hazard score" website for cosmetics.
For more about stuff, you might want to watch this video.
This ingenious project for a wiser earth also produced The Story of Bottled Water. Hopefully, we are already informed about the perils of purchasing unregulated water, but if not, please watch this video.
Forever.
The Story of Cosmetics is:
- an ugly truth (think asthma, cancer, learning disabilities)
- a new short film (7 minutes)
- from The Story of Stuff Project.
With some indebtedness to Common Craft's Explanations in Plain English format, this video should touch a nerve. Should make you rethink what you purchase. Should make you a label reader (if you cannot pronounce it, you do not want it).
From cancer survivor Kristi March, a video that speaks to the heart of making correct choices about carcinogens in cosmetics, including a "hazard score" website for cosmetics.
For more about stuff, you might want to watch this video.
This ingenious project for a wiser earth also produced The Story of Bottled Water. Hopefully, we are already informed about the perils of purchasing unregulated water, but if not, please watch this video.
Changing cultural mindsets, aka, our beliefs and practices in daily life, is difficult. But if we want to live healthier lives, if we want to survive, we need to begin somewhere. And we need to begin right now. Take the first step--today. Begin your countdown to a healthier you.
From safecosmetics.org, released on July 21, 2010, the release date of The Story of Cosmetics
From safecosmetics.org, released on July 21, 2010, the release date of The Story of Cosmetics
...the Safe Cosmetics Act of 2010 was introduced in Congress. We couldn't have asked for a better ending to the film, or a better opportunity for you to be part of a comprehensive solution to toxic chemicals in cosmetics.
For the first time in 70 years, we have a real chance to pass a bill that would eliminate chemicals linked to cancer, birth defects and other health problems from the products women, men and children put on their bodies every day. We need all hands on deck for this effort: Urge your elected officials to co-sponsor the Safe Cosmetics Act.
Sunday, July 18, 2010
The New New
Surviving three days of 100 degrees of heat with the llamas was a challenge; after days of hosing the girls, we installed 3 AC units and now it's all good. Life has returned to normal, but I am left with a reinvented sense of summer ~ a new new. Part of this deconstruction comes from a sense of feeling overwhelmed and just a bit exhausted. The heat is punishing.But deja vu-esque, the new new returned in a very positive way. It happened as I sat in the Perelman Center for Advanced Medicine, listening to Sunita
Nasta, MD, my NHL specialist. Dr. Nasta asked me if I would be willing to participate in an MRI study. Penn Medicine is engaged in a several-year study of lymphoma patients who have not yet undergone invasive treatment for their disease. Although the program would have no direct benefit to me, as it was explained, I agreed to participate. It is really about helping others, and here's where deja vu re-entered. I was told my lymph nodes had not grown sufficiently to be a participant in the study. My news about my blood values and tests was excellent. Not that's what I call a new new. Interesting how our lives as they move forward help us redefine and redirect what normal truly is.Perelman Center for Advanced Medicine
Penn Medicine
Cancer
Lymphoma
NHL
Sunita Nasta, MD
Wednesday, July 7, 2010
Confronting Cancer
Cutting to the Chase
In this post I am going to suggest you do 3 things to help yourself in confronting cancer, and an extra credit. They appear summarized at the end of this post, so cut to the chase if you want the bottom line, sans frills.
In this post I am going to suggest you do 3 things to help yourself in confronting cancer, and an extra credit. They appear summarized at the end of this post, so cut to the chase if you want the bottom line, sans frills.
Confronting cancer is an onerous and continuous task. It seems like years ago, not months that my cancer diagnosis changed my life ~ for the better. One of the first online sites I found in user-friendly language was The Cancer Project, and for relevant research and seasonal information, i
t is simply hard to beat. Each month I receive a newsletter and take to heart things that help me navigate cancer. You can join this community and subscribe to their newsletter by clicking the SIGN UP image. (1)
Did you know The Cancer Project has a growing presence on YouTube, with interesting and helpful videos for the cancer patient and family on The CancerProject Channel. You can subscribe to this channel using your YouTube or Google account. Either way, new "issues" will appear in your channel or Google Reader, or you can check the CPC regularly. (2)July's issue promotes cancer prevention and survival by "understanding the link between nutrition and cancer." I love their videos because they cut to the chase and give you information you can use easily. Great tutorials that do not under-or-overwhelm. They're just right. Take a look at this short (2:55) How To Grill Healthy Foods.
The folks at The Cancer Project follow up this video with a great article on The Five Worst Foods to Grill. Unfortunately, steak and chicken top the list, but I was surprised to find salmon grilled with skin on also hitting the big 5. For the list to make an impact (and perhaps a change in your grilling choices), you need to know that HCAs are "heterocyclic amines (HCAs), a cancer-causing chemical produced by high heat in many commonly barbecued meats." Simple translation: HCA = cancer-causing chemical. The greater the presence of HCAs in a grilled food, the greater the risk of eating a cancer-causing food. Here's their list:
Years ago, Adelle Davis was a household word as the first lady of nutrition, and she needed no introduction. She was responsible in her era for promoting the notion that you are what you eat, so eat whole foods without additives. We are finally getting back to Adelle's dictum, if only because we are learning that there IS a connection between what we eat and cancer. But that's another post.
Now that you know much of what you love to grill and eat may add to the toxicity of your cancer living within your body, what do you cook and consume? The simple solution: every Monday you can find healthy recipes that will help your beating back cancer if you subscribe to weekly recipes from The Cancer Project. You'll be happy to find ingredient lists and instructions from cancer nutrition experts that will put you on your road to wellness. (3)
What can YOU do in confronting cancer? 3 Things
- Subscribe to The Cancer Project newsletter.
- Subscribe to The CancerProject Channel on YouTube.
- Subscribe to The Cancer Project Weekly Recipes.
Extra Credit
If you love to listen on the go, or you really want to take control of your disease and learn more, check out the Cancer and Nutrition Web Seminars.
You may download ... continuing education Web seminars, podcasts, or PowerPoint presentations. If you have any additional questions or comments in regard to the event, please call 202-244-5038 or write to our events team at events@cancerproject.org.The bottom line: if you want to achieve wellness or improve the quality of your life, YOU need to take control of it. Eating against cancer is a great way to begin.
Cancer Project
Cancer
Nutrition
CancerProject Channel
YouTube
Wellness
Friday, July 2, 2010
Laughter IS The Best Medicine!
I found this video from my good friend and DEN GURU Tim Childers on Facebook. It popped into my wall feed at a time when I really needed a good laugh. I love this video so much it remains on my bookmark toolbar, a close click away. Much of what he says we can all relate to, and in the doing, find that deep and continuous laugh we all need. Brian Regan's "Doctor" segment resonates, especially in the pressure segment. It was right after my bone marrow test that I found this clip, and as anyone who had a bone marrow procedure knows, I needed this laugh. You might want to check out his other videos as well. He's one funny guy. Food for laughs.Tim Childers
DEN GURU
Brian Regan
YouTube
Humor
Wednesday, June 30, 2010
Growing the Moment
Most of my friends are at getting ready to leave the ISTE 2010 Conference in DENver, CO. Since I could not attend, I followed them on my social networks to get a pulse of what they were absorbing and the fun they were having. Wish I were there. One of the tweets I noticed about growing the movement initially I misread as growing the moment. During my AM routine on The Farm, I gave much thought to the misread. How do you grow a moment? I have written about living fully-freighted inside moments, and I understand the metaphor. Engage fully, really live, sensory participation, enjoyment, fulfillment. But growing a moment or moments may be another thing entirely.
I suspect it has a lot to do with removing stressors from our lives, and that is a cultural shift difficult to make. Everyone I know is frightfully busy, multitasking themselves (eventually) into some illness, short or long-lived. We value engagement as an indicator of self-esteem, as part of an ethos that makes us and our country great. If we are busy, we must be productive. Fallacious thinking. Busy is just busy; getting something done is different. I am not advocating Zen Buddhism or an effort to achieve nirvana. But I am questioning my approach to life and comparing now to then, and of course, the difference is exponential. Although I am not abrogating my responsibilities, I am re-thinking them. That's very easy to do when you are not driven by anyone else's bells and whistles. I can grow moments of doing what I love, selecting the sequence, time allocations, priorities. And because I can control these factors, I can live in and grow moments. Indefinitely.
But if true balance is the goal, then I need a huge cultural shift from doing too much to doing what is possible, and that includes the workforce. Alpha overachievers need constant reminders to live inside the possible, and to say no. Saying no goes against my grain, but I am learning, and as I do, I begin to live within and extend the moments that truly matter in my life.The Farm
Philosophy
ISTE10
Stress
Wellness
Changing Lifestyles
Tuesday, June 22, 2010
NHL: Understanding Your Disease and Treatment Options
Yesterday my husband and I attended our first Leukemia and Lymphoma Society dinner meeting at Pocono Medical Center in East Stroudsburg. It was a wonderful way to spend a milestone birthday. We were immediately impressed with how immaculate the facility--spotless and shining--was. From the kind receptionist to our warm welcome from MaryAnn Chupella, MA, LPC (center), Senior Patient Services Manager of the ` (Eastern Pennsylvania Chapter, Lehigh Valley Branch), we were solidly inside our comfort zone. First impressions are everything and Cindy Wildrick, RN, BSN (left), who specializes in working with cancer patients and Lynn Steele Heller, LSW (right), a social worker in the Pocono Medical Health System made us feel at home. All 3 women exemplify the PMC mission: "to cure leukemia, lymphoma, Hodgkin's disease and 
myeloma, and improve the quality of life of patients and their families." Just being with them one evening began working the magic of the mission.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
- Found:
- 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.
Part 2 Nhl
View more presentations from MD Specialclass.
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:
- Rituximab
- Bexxar
- Zealin
- Ritoxin
- 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.
NHL
Pocono Medical Center
MaryAnn Chupella
Cindy Wildrick
Lynn Steele Heller
Kaoutar Tlemcani
Cancer
Lymphoma
Lymphoma and Leukemia Society
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