Every piece of research or information that comes my way via my Google Alerts continues to reinforce my selection of the Perelman Center for Advanced Medicine as the perfect choice for my cancer management. The choice you make for your treatment may just be the single most important decision you ever make, so if cancer visits your family, yourself, or a close friend, my recommendation is to do your homework diligently when selecting a cancer treatment center.
Endless Bests!
My selection was based on awards of excellence, the calibre of the faculty, the fact that Penn Medicine is connected to a university that pursues rigorous research, field trials, and purchases the most technically advanced medical diagnostic equipment. I also wanted a provider of professional development in the cancer field. And I found all this and more at the Perelman Center for Advanced Medicine, a facility connected to Penn Medicine.
I am really excited about the upcoming Blood Cancer Conference at Perelman. You still have time to register; October 25 is the deadline. Click this link to join us for an enlightening experience.
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.
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.
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
The origin of lymphoma can occur in any of the above-mentioned regions, but it can travel via lymphocytes in blood and bone marrow. Anything in the blood can be released to other organs, occasioning instances of lymphoma in the bowel, for example. These cases are atypical cases of lymphoma, Dr. Tlemcani stressed, but lymphoma blood cells exist in the blood and can therefore be released anywhere. Lymphoma can have a leukemic phase which is not common but can occur.
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 chronicinflammation.
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:
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.
I do not know my FLIPI score but it will the first point of inquiry when I meet with Dr. Sunita Nasta in July.
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:
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.
Overall, if you have Non-Hodgkin Follicular Lymphoma, detected early, you are in a "wait and watch" pattern. You do not want to be too aggressive in treatment because of toxicity of treatment and because you cannot cure NHL Follicular Lymphoma.
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.
The italicized items are ones for my personal list. I think I'll make a refrigerator list, maybe magnetize it, and begin a daily reminder list so I unlearn some of my behaviors. Over the years, I've know people who have joined support groups, and I always thought, not me. But after yesterday's dinner meeting and panel discussion, I intend to be present and participating every 3rd Tuesday at 6 PM. It's all good.
The simple version is good news indeed; I will live with, die with, but NOT die of my disease. But beyond a diagnosis, even a great one, understanding your disease is critical to the care you give yourself. So, what is NHL? To answer this question, I turn to my computer notes I took while my two NHL oncology specialists, Tahamtan Ahmadi, MD, andSunita Nasta, MD, discussed my disease.
Paraphrasing Dr. Ahmadi, an Oncology Fellow (specialist past residency) on NHL Follicular Lymphoma:
Lymphoma is a disease of the lymph nodes. There are two kinds of lymphoma: slow v. fast and/or low v. high. The high form kills but can be cured; the low grows slowly and people live with this disease, often with no treatment if they are not sick. But the low slow type of lymphoma cannot be cured; contained but not cured.
Within Follicular Lymphoma, Grade 2 is on the lower side. Grade 3 is a fast-growing cross-over and becomes more aggressive. Grade 2 disease may transform but will not change its grading.
Staging the disease includes identifying how many lymph nodes, size, and location.
Left side chin, bilateral is neck, lower cervical above the clavicle, lymph nodes in hilium around lungs, 2 more above the diaphragm; abdomen and pelvis a few more. No need to worry about the number of nodes. They are there and that's that. Don't fret.
Stage 3 is my diagnosis for staging. Under Stage 3 is A and B. So I am a 3A because I have multiple nodes and A because I exhibit no symptoms.
Total diagnosis: Follicular Lymphoma Grade 2 Stage 3A
Treatment options:
Treatment can be done and then not needed for a long time and then done again. So I could have something done in, for example, a year, and then again not until I am in my 80s (+/= 15 years).
I mention my total diagnosis for several reasons. There is little, if any, privacy left in today's digital world, but that would be a default reason. The real reason is that initially I was lost in a morass of understanding how cancer, and specifically NHL progresses from initial identification to a final staging. How do you get from the x-rays, CAT Scans and PET Scans, broncoscopy, mediastenoscopy, and bone marrow test to a total diagnosis. Along the way, I received bits and pieces, but it took a long and large array of diagnostic tests and surgeries and then specialists to put my pieces together. I wanted any reader of this post to understand the process, and the time involved in getting to a diagnosis, and most importantly, never to lose faith in the future.
From Dr. Sunita, I got the technical spiel, as she put it, and I asked her to water it down a bit and wait as my fingers caught up with her knowledge and insight.
NHL Follicular Lymphoma is the second most common NH diagnosed with 20,000 per year, attacking people age 55 + but may occurs in any age demographic.
Occurs in lymphocyte cells and B and T lymphocytes; B = early surveillance system and identifies infections; B types identify via binding proteins that give a chain of events that cause cells to multiply and better identify the cells a second time around.
This occurs within our genes and immortalization happens (I do not yet fully understand this concept, but with all the really amazingly intelligent science teachers in our building, I will know shortly).
Trans-location 1418 puts the antibody chain next to the immortalization BCL2, making a cell immortal, able to produce the lymphoma and these cells take a long time to manifest themselves. KEY is a long time before the disease manifests itself.
People live with this disease as any chronic disease but early treatment does not enhance a survival rate. No silver bullet. Treatment = wait until volume of disease warrants treatment.
NHL is not tougher to treat later and is in fact responsive. Likely to get into complete remission just as easily and first remission is the longest = why we wait.
Treatment:
Lab tests Balance between monitoring and risks of monitoring Scan every 6 months; be seen by oncologist specialists every 3 months Possible treatment within the year.
For family and friends who may read this post, the last line about possible treatment within the year is predicated on the fact that my lymph nodes have been growing, albeit slowly, in the last 6 months, suggesting that thay have already been there for that long time growing spell, and are now moving more actively. I have been really fortunate in even finding I have NHL, which was really a serendipitous finding, since doctors were looking for something else, much worse.
What I have learned is that wait and watch is what you do with my NHL diagnosis. Are there potential problems for me down the road apiece, as we say in farm country? Of course. NHL can attack other organs (liver, kidneys, et. al.) or morph into other cancers. Now I understand why the Lymphoma and Leukemia Society (our newest organizational charity to which we contribute) are linked.
But, WILL that happen. No glass bowl, as Alison says on As Time Goes By, the British television series, but then again, I really would not want one. I am totally content with a wait and watch approach, just as I would not ever want to know the gender of my unborn child years ago. Some things are better left to happen as God intends. Nevertheless, I am still talking to God.
"Think of it as a disease, like diabetes, that you live with, die with, but not die of." Thus spoke Sunita Nasta, MD, Non-/Hodgkins Oncology Specialist, and my newest physician caregiver. Never was a diagnosis better received. In short, I got a life sentence, a long one (that's me on the left, walking the white llama). And it was a long time coming. At various times, I amped up my conversations with God and evaluated my life, dispassionately, to learn that by my standards I had lived well. Now the challenge might become dying well. Was I up to it.
And that's where the hand of God, the work of faith and prayer, serendipitous intervention, or just old-fashioned luck plays its hand. Call it as you see it, but for me, it was a Padre Pio miracle. Non-Hodgkins Lymphoma, Grade 2, Stage 3A.
When was the last time a physician asked you how you prefer to learn? Beginning with Tahamtan Ahmadi, MD, Oncolocy Fellow (past residency and now specializing), I was given the preference of medical discovery in my learning style. As a teacher, I totally understand the value of pitching to a learning modality, but was surprised to find that level of delivery in the medical field. Bravo!
"Would you like me to deliver my spiel, or would you prefer to ask me your questions first"? What a tag team! Being given choices counts with me, since I have grown up surrounded by specialty physicians in my neighborhood. Finding that same compasssion and concern, especially at a large facility in a larger city exceeded my expectations as Dr. Nasta greeted my husband and me as treatment sharers. Despite the expansiveness of the facility, I felt like I had returned to my childhood roots, where you could go next door and have tea, treatment, wonderful conversations, and confidence in your returning wellness.
Does your treatment facility have state-of-the art equipment? Why be referred to a cancer center that has the best diagnostic and treatment equipment when you can begin beating back cancer from the beginning by betting with the best.
What awards and accolades has your treatment center achieved? Is it wrong to want the best. Cancer care is a competitive industry and each strong facility has a piece of the market share. So, for me it comes down to ratings, rankings, research, and survivorship. And the doctors.
Are your doctors at the top of their specialty? Don't be a passenger in your life; be the bulldozer. Make your choices carefully, and then make sure the fit is good. Mine are, and in working toward longevity, that means everything.
Is your cancer center connected to a University Medical School? Field research and clinical trials are important to my decision-making. If need be, I will be a risk-taker. When life is the endgame, I want to be on the cutting edge, before the edge is cut. And should all else fail, I want to be positioned in a place that can look at advanced medicine alternatives.
Like so many people, my father was not so lucky. He did not get a life sentence, but we did manage to give him two years he might not have lived had I not done research at UPenn's biomedical library. Throughout my life, my father was my anchor, a strict but loving parent, someone I would forever miss. As I watched his life wane, I knew that should my time come when I would have to beat cancer back, I would learn from the choices he did not make.
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