Sunday, April 18, 2010

Understanding NHL

When you assume you are facing down days, a life sentence, even with some future forebodings, is a blessing.

My diagnosos is Non-Hodgkins Follicular Lymphoma, Grade 2, Stage 3 A.

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, and Sunita 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.


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.

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