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#1
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Greetings,
Probably nothing in life is more stressful than the diagnosis of a cancer, and it makes you wonder if we were meant to know (wired to know) too much about dangerous medical conditions - considering that during the majority of human evolution there were no diagnostic tests. What I think needs to be conveyed to the newly diagnosed (and their caregivers) is that blood cancers are generally more treatable/curable than other cancers, ... reversible even at advanced stages. Depending on the type and grade, a lymphoma may be cured or it may be managed well - treated minimally as needed. There are about 30 or 40 types of lymphomas, but the two main categories are indolent (slow growing) and aggressive. The aggressive type (DLBCL, Burkitt's, etc.) is treated with intent to cure. For the indolent type (follicular, MALT, etc.) the approach to treatment varies considerably - sometimes, but not commonly, treatment is never required. Lymphomas are systemic conditions ... the cell of origin being a lymphocytes, an immune cells, which by design can migrate anywhere in the body to fight infection. Normal lymphocytes react to an infection by increasing in number in order to disable a pathogen (bacteria, virus, fungus, etc). When the job is done, these cells self destruct or differentiate into other forms of lymphocytes. Indeed, when evaluating enlarged lymph glands it can be challenging for the pathologist to distinguish between benign reactive conditions and a lymphoma. Lymphoma cells are abnormal lymphocytes that act similarly but have lost growth and survival controls. These cells (all clones of one cell) either grow too fast, or fail to self-destruct - the growth and survival is independent of immune function, or at least partially. See for more detail: http://www.lymphomation.org/about-lay.htm The good news is that lymphocytes, normal and abnormal, are generally highly sensitive to systemic therapies and radiotherapy. Consider how quickly normal blood counts drop in response to chemotherapy, even at low doses. Also, unlike solid cancers, there is a reserve of stem cells which will replenish the supply of blood cells after treatment, and these cells are less sensitive to standard therapies for lymphomas. See for treatment types: http://www.lymphomation.org/treatment-types.htm I hope this little overview helps to relieve anxiety a bit. This is not to say that lymphomas are not life-threatening conditions ... they most certainly are, or can be. And the risk varies by type, and within types - sometimes, for example, follicular NHL never needs treatment, but for most it does. But unlike other cancers, current therapies can be very effective, sometimes curative, and the outlook for additional clinical advances is genuinely bright. See Guidelines at Diagnosis for more information: http://www.lymphomation.org/advice-at-dx.htm |
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#2
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Reading that was like a breath of fresh air. Not too make light of NHL or Hodgkins even, because I KNOW that real people are the reasons for the statistics and it's not 100% cured, alive, etc...But...it seems like whenever I hear a negative story, like about Melissa or Shane I scavenge the internet for more and of course, I find them, then I slip into a funk. Thanks for posting.
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12/08/07 diagnosed with Stage 2 PMBCL at age 28 Initial mass size: 16x12x11cm. R-CHOP X 6, 32Gy radiation therapy. NED: 5/16/08, 10/01/08, 12/31/08, 03/31/09, 07/06/09, 10/07/09, 01/21/10, 5/21/10 http://www.caringbridge.org/visit/virginiawininger |
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#3
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Thank you Karl. I think this is good not only for the newly diagnosed but good for everyone. Thanks again.
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DX 6/06 DLBCL R-CHOP X6 Rads X21 5/07 NED 7/08 Brain MRI - Stable appearance of capillary telangiectasia, regions of prolonged T2 in the white matter, and small meningioma. |
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#4
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Karl - thank you so much for posting this, and for all of the great information on Lymphomation. Your post had more useful information in it than our first visit with mom's oncologist. Amazing.
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Betty 03/08 Mom (Margie), age 62, 6 cm DLBCL mass on lumbar spine. Rheumatoid arthritis (30+ years), on Enbrel last 8 years. Stage I E - Treatment= 3x R-CHOP w/Neulasta plus radiation- 4 weeks, 5x per week. Diagnosis changed to Stage 3 because of orbital soft tissue tumor. 9/11/08- NED..for real this time! Starting Rituxan consolidation therapy for next two years. http://www.caringbridge.org/visit/margiebaird |
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#5
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Thanks for this information. It's very uplifting and puts a lot of things into perspective. Great information to have.
------------------------- Best Friend dx 4/07 w/Diffuse Large B Cell "grey zone" NHL Stage 3. Also Vena Cava Syndrome Began 2x Cytoxin first night after preliminary result Began CHOP-R x8 w/Neulasta and 5 day follow up of Prednizone First PET/CT scan 7/13/07 Scan Shows No New Uptake - Bulky mass probably scar tissue but onc. still can't officially say NED PET/CT 11/07 - No new uptake. Bulky mass even smaller. PET/CT 2/08 - OFFICIALLY NED
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Best Friend dx 4/07 w/Diffuse Large B Cell "grey zone" NHL Stage 3. Also Vena Cava Syndrome Began 2x Cytoxin first night after preliminary result Began CHOP-R x8 w/Neulasta and 5 day follow up of Prednizone First PET/CT scan 7/13/07 Scan Shows No New Uptake - Bulky mass probably scar tissue but onc. still can't officially say NED PET/CT 11/07 - No new uptake. Bulky mass even smaller. PET/CT 2/08 - OFFICIALLY NED PET/CT 8/08 - HAPPILY NED |
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#6
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Thank you, Karl.
Heidi
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4/07 Diag fNHL, Grade 1/2, Stage 4, BMI 15% / 6/07-7/07 Rituxan / 3/08 Diag w/Thyroid Cancer / 5/08-9/08 R-CHOP / 10/08 NED / 10/08 Thyroidectomy and RAI / 3/09 Relapse-Transformation-30% DLBCL / 4/09 RICE / 6/09 R-BEAM and Auto SCT / 9/09 Rads / 7/09, 11/09, 2/10 NED |
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#7
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I have another way of looking at it, I am undiagnosed for over 2 years, and as dumb as it may sound, I am wishing for a diagnosis of lymphoma. At least I know if I have lymphoma it is an indolent kind as it is not growing or spreading very fast, and can most likely be treated. There is nothing worse than feeling sick for 2 1/2 years and not knowing why. Just my 2 cents. I do agree though, that havin access to all this information on the net can raise anxiety levels uneccessarily. I have convinced myself that I have had almost every disease that relates to my symptoms at one time or another.
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Moderate splenomegaly for 2 years, Tons of tests and imaging studies, NO ANSWERS fatigue, itching, luq pain, depressed |
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#8
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Bumping up for Lori.
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Betty 03/08 Mom (Margie), age 62, 6 cm DLBCL mass on lumbar spine. Rheumatoid arthritis (30+ years), on Enbrel last 8 years. Stage I E - Treatment= 3x R-CHOP w/Neulasta plus radiation- 4 weeks, 5x per week. Diagnosis changed to Stage 3 because of orbital soft tissue tumor. 9/11/08- NED..for real this time! Starting Rituxan consolidation therapy for next two years. http://www.caringbridge.org/visit/margiebaird |
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#9
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draggin thru stuff, and ths is a vry good reed. karl i admit to somtims 'blonding' thru yuor wrrds. but ths is consise and eezy fr us all. and reely leevs th reedr wt HOPE
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Against the force of laughter nothing can stand.-- Mark Twain The Welcome WagonCincy Heers To Hope LTN TEAM |
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#10
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To Just got paid, My son's lymphoma is NOT indolent. Not all lymphomas are indolent. My son's is very aggressive.
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