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Thread: Hodgkin's Lymphoma 101

  1. #1
    Senior User Dorney1's Avatar
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    Hodgkin's Lymphoma 101

    Chemoman/Didee/Kermica – feel free to delete this if you don’t think it’s beneficial

    Hi everyone,

    Something Chemoman posted about helping the newbies made me think that, seeing as I'm not around as much as I used to be, and being the resident HL'er, I would just write a bit of a 101 that can be bumped as and when it needs to be.

    As many of you will know, during my diagnosis and treatment I was an avid researcher about my disease so consider myself fairly knowledgeable on the subject. The aim of this thread is not to discuss chemo or treatment related issues (as these are shareable for all chemo's) but to discuss treatment protocols specific to Hodgkin’s and to discuss strategies in treating early favourable, early unfavourable and relapsed HD.

    Please note, I'm not a doctor and you should ALWAYS discuss your individual case with your oncologist or haematologist. All I am doing is providing recommendations and considerations based upon extensive research and gold standard protocols. I wasn’t entirely sure whether I should write this for fear of people thinking I’m operating above my station but having seen MANY wrong treatment choices made on various boards I thought it best to collate the info I acquired.

    Intro

    Hodgkins, across all stages, is one of the most curable cancers in the world. Because of this 90% plus cure rate and long life span of cured patients (most are under 35) more recent research has focussed, with the aid of PET scans, in making the treatment less toxic. Because of this, there are currently differing thoughts on the optimal treatment for each stage.

    Early Favourable

    Early Favourable disease is anything stage 1-11a without risk factors. Risk factors would include elevated ESR/LDH, Bulky Disease, certain levels of white blood cells occurring and B symptoms such as night sweats or significant weight loss. The recent gold standard care for this stage (by the GSHG – the leading Hodgkins study group in the world) is currently 2 cycles of ABVD followed by 30gy radiation. In some instances this is upped to 4 cycles of ABVD plus 30gy radiation (as in my case).

    Early Unfavourable

    Early Unfavourable disease is anything stage 1-11 with associated risk factors as described above. The standard of care was previously 4-8 cycles of ABVD plus 30gy radiation. Whilst that figure results in tumour control and potential cure for 80% plus people a dose intensified chemo of 2 cycles Esc Beacopp and and 2 cycles of ABVD SIGNIFICANTLY improved tumour control and took the 5 year progression free survival to closer to 90%. Obviously this is a more toxic regimen but secondary malignancies and treatment related mortality was not increased suggestive of short term toxicity only.

    Late Stage Disease

    Late stage Disease traditionally relapsed in 30% plus of patients treated with ABVD. The alternative standard of care is 4 Esc BEACOPP plus 4 BEACOPP and this is resulting in 5 year progression free survival rates of 85% bringing Late Stage Disease patients more in line with cure rates of other stages. It MUST be noted however that there is significantly more toxicity in this volume of BEACOPP and it is not recommend in patients over 60 years or patients with a poor performance status.

    Relapse and Refractory Disease

    How to treat a relapse of Hodgkins disease depends on a number of factors such as length of relapse, relapse in previously irradiated site and presence of B-Symptoms and/or bulky disease. In most cases, the longer you relapse outside of a treatment course the better your chances of success. Likewise, Refractory disease (considered progression during a treatment course or within 3 months of therapy) carries the worst prognosis and certain questions come in to play around cure v management where there is no straight forward answer or protocol.

    Relapse after 1 year or more

    In patients who relapse outside of 5 years your case is a unique one and dependant on your presentation and initial treatment modality you may not require a Stem Cell Transplant (SCT). For all other patients SCT is the generally accepted standard of care. This will be preceded by salvage and conditioning chemo regimens and your own cells are used. Relapse after 1 year carries a good prognosis of about 70% being cured by SCT.

    Relapse in months 3-12

    In this cohort, the regimen is exactly as above but carries a slightly worse prognosis with cure rates around 50%.

    Refractory Disease

    Refractory is the more challenging but cure rates have been improving based upon the introduction and early detection of progression by PET scanning. Auto SCT is still the standard of care but has a cure rate of less than 30%. Allo SCT (from a donor) has long disappointed with high mortality and low cure rates but does offer a benefit of a host v graft affect meaning that some patients who are unable to get in to remission can be cured, although management of your disease through novel trials and treatments such as SGN35 are the chosen route by many. In saying that, there are some novel approaches happening to Allo and in carefully selected patients cures are being achieved for 70% plus - https://ash.confex.com/ash/2011/webp...aper39060.html

    SCT – What you should know

    The single most important factor of success in Hodgkins Specific SCT is having a clean PET scan prior to your SCT. There are barely any documented success cases of SCT working after positive PET so demand a PET and have patience if you’re not yet in remission. There are many regimens out there and there are many cases of people going through multiple regimens before moving on to SCT.

    Conclusion

    I hope this is helpful for those HL’ers on here. The reason I have produced this is that not every doctor is a HL specialist and it can be easy to be grouped in to a general ‘lymphoma’ category where things differ. Also, this is an international site and not all of these standard of cares will be known globally. Arm yourself with us much info as you can, be your own advocate – it could save your life!

    James

    Sources
    http://www.ncbi.nlm.nih.gov/pubmed/22271480
    http://www.asco.org/ascov2/Meetings/...stractID=33914
    http://www.hindawi.com/journals/ah/2011/707542/
    http://theoncologist.alphamedpress.o.../14/4/425.full
    http://en.ghsg.org/home
    https://ash.confex.com/ash/2011/webp...aper39060.html
    Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.

  2. #2
    Administrator Top User ChemoMan's Avatar
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    Hi James

    Great work and thanks for your effort. It should also help to clear up a few misconceptions out there about the nature of chemo and help put people at ease who are about to start their treatment.

    Many thanks once again

    Good health to you
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
    Administrator Top User Didee's Avatar
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    Causes of Lymphandenopathy.

    Although the finding of lymphadenopathy sometimes raises fears about serious illness, it is, in patients seen in primary care settings, usually a result of benign infectious causes. Most patients can be diagnosed on the basis of a careful history and physical examination. Localized adenopathy should prompt a search for an adjacent precipitating lesion and an examination of other nodal areas to rule out generalized lymphadenopathy. In general, lymph nodes greater than 1 cm in diameter are considered to be abnormal. Supraclavicular nodes are the most worrisome for malignancy. A three- to four-week period of observation is prudent in patients with localized nodes and a benign clinical picture. Generalized adenopathy should always prompt further clinical investigation. When a node biopsy is indicated, excisional biopsy of the most abnormal node will best enable the pathologist to determine a diagnosis. The cause of lymphadenopathy is often obvious: for example, the child who presents with a sore throat, tender cervical nodes and a positive rapid strep test, or the patient who presents with an infection of the hand and axillary lymphadenopathy. In other cases, the diagnosis is less clear. Lymphadenopathy may be the only clinical finding or one of several nonspecific findings, and the discovery of swollen lymph nodes will often raise the specter of serious illness such as lymphoma, acquired immunodeficiency syndrome or metastatic cancer. The physician's task is to efficiently differentiate the few patients with serious illness from the many with self-limited disease. This article reviews the evaluation of patients with a central clinical finding of lymphadenopathy, emphasizing the identification of patients with serious illness.
    Definition

    The body has approximately 600 lymph nodes, but only those in the submandibular, axillary or inguinal regions may normally be palpable in healthy people.1 Lymphadenopathy refers to nodes that are abnormal in either size, consistency or number. There are various classifications of lymphadenopathy, but a simple and clinically useful system is to classify lymphadenopathy as “generalized” if lymph nodes are enlarged in two or more noncontiguous areas or “localized” if only one area is involved. Distinguishing between localized and generalized lymphadenopathy is important in formulating a differential diagnosis. In primary care patients with unexplained lymphadenopathy, approximately three fourths of patients will present with localized lymphadenopathy and one fourth with generalized lymphadenopathy (Figure 1).2,3


    ......and more follows.


    http://www.aafp.org/afp/1998/1015/p1313.html
    Aussie, age 59
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo or hap transplant. Onc says long remission was good. Still very fixable. All I needed to hear. I am pumped and ready. BRING IT ON

  4. #4
    Administrator Top User Kermica's Avatar
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    I saw a great, in depth resource which provides a great deal of solid background information about Lymphomas of various types. Here is the link to the NHL information: http://www.cancernetwork.com/cancer-...=1&ts=06112014

    and here is the link for the HL folks out there: http://www.cancernetwork.com/cancer-...=1&ts=06112014

    To me, it is need to know information for any of us making this journey. You may need to register, I can't remember if I needed to do that originally to get access. Good reading...

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.

  5. #5
    Administrator Top User Kermica's Avatar
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    Today I saw another excellent update from the Cancer Network. This link will take you to Part 1 of their article on the advances in treatment options for NHL and CLL. Part 2 will be published at a later date and I will add it on to this string when published. I hope folks find this information of some help in making the decisions we all face on this journey, here is the link: http://www.cancernetwork.com/oncolog...=1&ts=09042015

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.

  6. #6
    Senior User Opera Widow's Avatar
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    Great article...thanks for posting. I am with you. The more I know, the better equipped I feel to ask the right questions. I very much appreciate your time and attention to this forum...V
    Female-Current Age 65
    10.13.15 Diagnosed with Follicular Lymphoma-Grade 3A Stage 1-Watch and Wait
    4.6.16 Repeat Pet and CT scans due to rapid growth of several nodes in original area
    4.18.16 Biopsy to determine if transformation or progression has occurred
    4.26.16 Upgraded to Grade 3B-transformed NHFL and DLBCL-Remains Stage 1
    5.12.16 First RCHOP Treatment

  7. #7
    Senior User
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    To Educate Yourself and Verify Your Treatment Plan

    Hi, Everyone,

    UPTODATE.com is a resource for both patient and medical professional. It is a source many physicians use to determine a treatment plan. There is a watered-down patients version and a professional version. They recently began allowing patients and caregivers access to the PROFESSIONAL version. You can purchase access for a week for $20. I thought $20 to help with my peace of mind was well worth it. And since you have full copy privileges, a week is more than enough time. Just locate your diagnosis and copy and paste it into a word document for future reference. Unlike NCCN (National Comprehensive Cancer Network) physician guidelines that are updated yearly, Uptodate.com claims to update throughout the year so, ostensibly, should be the most current information. It certainly beats random googling! - VMarie

    <<UpToDate, Inc. is a company in the Wolters Kluwer Health division of Wolters Kluwer whose main product is UpToDate, a software system that is a point-of-care medical resource. The UpToDate system is an evidence-based clinical resource.>>
    Last edited by VMarie; 05-01-2017 at 01:09 AM.
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete;; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).

  8. #8
    Senior User
    Join Date
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    Excellent resource for Hodgkin Lymphoma Information

    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete;; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).

 

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