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Thread: Diagnosed with NSHL (bulky)

  1. #1
    Regular User
    Join Date
    Mar 2011
    Vancouver, BC

    Diagnosed with NSHL

    I was diagnosed with NSHL (bulky) yesterday.

    Here is my info:
    - Age: 26
    - Age of diagnosis or time since diagnosis: 26
    - Lactate dehydrogenase level (a blood test): Not sure will ask Monday when I see Onc. EDIT 202 U/L
    - Performance status: Low-grade fevers, minor night sweats and fatigue.
    - Clinical stage: II or III (waiting on CT results for abdomen/groin).
    - Sites of metastatic growths: Chest 6cmx3.6cm. At the time of CT supraclavicular mass was 2cm but it much larger now, my est ~7cm.
    - Treatments already received: None

    My diagnosis story (copied from my blog):

    In early Jan 2011 I visited my GP about a small lump in my neck. At the time I had no other symptoms. After examination of the lump he ordered blood work, which revealed I was slightly anemic.

    Upon receiving the blood results he performed a physical, ordered more blood work, a urine test, and a chest x-ray. Shortly after this appointment I started experiencing many typical HL symptoms. Several other lymph nodes in my neck became inflamed to the point that they were visible. They did not hurt but there was discomfort when I moved my neck. I also experienced discomfort in my chest, difficulty breathing at times, mild fatigue, night sweats, increased resting heart rate at times, and skin irritation.

    Chest X-Ray Report
    Widening of the right side of the mediastinum is noted consistent with right paratracheal and right azygos lymphadenopathy. Slightly enlarged bilateral hilar lymph nodes cannot be excluded. Subcarinal lymphadenopathy cannot be excluded either. A small amount of fluid is present in the right-sided fissures. Peribronchial thickening is present in the right lower lobe. Minimal patchy consolidation is also present in the right lower lobe. The heart and left lung are normal in appearance.

    Right-sided mediastinal lymphadenopathy. Bilateral hilar and subcarinal lymphadenopathy cannot be excluded.
    Right lower lobe bronchopneumonia. Small right pleural effusion.
    The findings are consistent with Hodgkin's disease. Sarcoidosis cannot be excluded although the small right pleural effusion is unusual.

    Surgical consultation and CT scan of the chest is recommended.
    As you see from the report, the chest x-ray was the first indication I had HL. I was referred to a Pulmonologist who performed a fiberoptic bronchoscopy with biopsy; I also had a CT scan (neck and chest). Pathology of the sample retrieved from my lung during the bronchoscopy showed no evidence of Lymphoma or Sarcoidosis.

    CT Scan report:
    CT Neck and chest enhanced

    Severe clavicular and mediastinal lymphadenopathy, sarcoidosis or Hodgkin’s disease.

    No prior studies available for comparison

    Extensive lymphadenopathy throughout the next measuring up to 2.1 cm in short axis diameter. Extensive lymphadenopathy in both supraclavicular regions. No other soft tissue abnormalities in the neck.

    Extensive mediastinal lymphadenopathy. A large heterogeneous anterior mediastinal mass measuring 6.1 x 3.8 cm in axil diameter in most likely confluent lymphadenopathy. Lymphadenopathy also involves the hilar regions and subcarinal region. No axillary lymphadenopathy. No pericardial effusion. The cardiac chambers are normal in size and appearance.

    At least six small non calcified pulmonary nodules are scattered in the right lung, most of which are either subpleural, or along the interlobar fissures. No definite pulmonary nodules in the left lung. The trachea and central bronchi are patent and normal in caliber.

    Limited images of the upper abdomen are unremarkable. No suspicious destructive osseious lesions in the neck and chest. The overlying soft tissues are normal.

    Extensive lymphadenopathy in the neck, supraclavicular regions and throughout the mediastinum with a large confluent nodal mass in the anterior mediastinum. The differential diagnosis includes sarcoidosis or lymphoma, but the presence of scattered non calcified pulmonary nodules, most of which are subpleural or along the fissures favours diagnosis of sarcoidosis.
    The Pulmonologist referred me to a surgeon to have a larger sample taken from my neck. The surgeon disagreed with the CT doctor's findings he felt sarcoidosis was very unlikely. The surgeon took a 1.6cmx1cmx0.6cm sample from the right side supraclavicular lymph node. This was the first to become enlarged and is by far the largest node.

    In addition to the lymph node biopsy a bone marrow biopsy was performed The bone marrow biopsy came back clean. Results from the CT of my abdomen and groin are not in yet so we do not know if it is stage IIb or IIIb disease.

    Diagnosis has taken about 10 weeks. In that time my right supraclavicular lymph node has grown from ~2cm long to ~7cm in length. During the past 3 weeks I’ve been having low-grade fevers almost daily (200mg of Ibuprofen has helped A LOT) and the fatigue has become much worse.

    I have an appointment with an oncologist Monday, March 14th. I assume I'll get a port in about a week and start ABVD about a week after that.
    Last edited by Merch; 04-15-2011 at 02:10 AM.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35

  2. #2
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    NSW Australia
    Hello. I am so sorry you have to join us.
    This is the hardest time right now, getting all the info together and absorbing the fright as well as telling family and friends.
    We are here for you.
    Aussie, age 61
    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 transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    South Australia
    Blog Entries

    Welcome to the forums. By now I reckon you are very well versed in what is ahead of you. Plenty of members with HL so you will be in the compaany of those that have completed the journey you are about to embark on, don;t be shy in asking questions or just having a rant if thats what floats your boat.

    Thanks for your story and good luck
    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

    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.

  4. #4
    Senior User Dorney1's Avatar
    Join Date
    Feb 2010
    London, UK
    Hi Merch,

    Welcome to the boards and unfortunately welcome to the world of Hodgkins.

    From the detail in your post you sound like someone who knows everything he needs to and is asking the right questions. I am 7/8 months out of treatment for stage 2 hodgkins. I had both ABVD and radiotherapy, so if you have any questions please ask.

    Also, I noted you were looking in to LDH but please also look at ESR - it's probably more important when it comes to Hodgkins.

    Good luck with your treatment.

    Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.

  5. #5
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    New York
    Merch, welcome to the place none of us wants to be but so many come to value. I am just stopping by to say hello and good luck with things as they develop. You are in very good hands with James and his fellow HL veterans.

    Good health,

    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.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

    December 2017 - Biopsy of external iliax node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.

  6. #6
    Regular User
    Join Date
    Mar 2011
    Vancouver, BC
    Thanks for the replies everyone.

    James, I will look into ESR.

    I've spent a lot of team reading about HL and ABVD over the past 10 weeks so I know far far more about lymphoma and cancer than I ever thought I would but I feel prepared for my treatment.
    Last edited by Merch; 03-15-2011 at 07:22 PM.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35

  7. #7
    Senior User Sleeper's Avatar
    Join Date
    Jan 2010
    Rossendale Valley, UK
    Hi Merch

    Sorry to hear you are here but now that you are, welcome. It is good to know you have managed to read up on your upcoming journey as the information you collate can be a very good way to keep control of things you can while letting things you can't..well get on!

    All the best.
    Resoluteness Is The Vigour Of Sustainability (S. Rush July 2010)

    Age 35 at diagnosis
    Diagnosis 8th Jan 2010
    Diffuse Large B Cell Lymphoma
    1st Pet Scan - Negative
    Stage - 1A (localised neck)
    LDH - Normal
    Bone Marrow Trephine - Clear
    Chemo - 3 Cycles R-CHOP 21 (finished 16th March 2010)
    Radiotherapy - 15 Sessions (finished 6th May 2010)
    My Story So far http://www.wildrossendale.co.uk/non-...-lymphoma.html

    Remission 09/09/2010
    2 Years out of treatment and cancer free 07/05/2012

  8. #8
    Regular User
    Join Date
    Mar 2011
    Vancouver, BC
    I saw my Onc yesterday. CT of abdomen and groin showed involvement below the diaphragm so I have been staged as IIIb. 6 cycles of ABVD will start on March 29th. Hopefully I will get my port installed before then but I may not. Whether or not I get rads will depend on post ABVD scans.

    EDIT: Forgot to mention doc sent me for a blood test to check ESR and LDH levels along with a couple other things (he said them quickly didn't pick them up but I'll get the results at some point).

    Work up Lymphoma

    Contrast enhanced images were obtained through the abdomen and pelvis.

    There is a moderate-sized pericardial effusion identified measuring up to 1.6cm in thickness. There are enlarged lymph nodes up to 15mm short axis anterior to the esophagus near the abdomen hiatus. Enlarged lymph nodes are also present in the gastrohepatic ligament and cellac axis region measuring up to 2.1cm short axis. Enlarged paracaval lymph nodes are seen from the level of the SMA distally. These measure up to 18mm. From the level of the aortic bifurcation distally there are small lymph nodes present but none are markedly enlarged. A right lliac chain lymph node measures 10mm short axis. The spleen measures up to 15.9cm and contains three round low-attenuation lesions measuring up to 14mm. These do not appear cystic. No focal hepatic lesions are seen and the gallbladder, adrenals and pancreas are within normal limits. No focal renal abnormalities are seen. There is a trace of free fluid in the pelvis. The appendix is unremarkable.

    Pericardial effusion. Splenomegaly with associated focal splenic lesions which can be seen in lymphoma. Mild intra-abdominal and pelvic lymphadenopathy which is more prominent in the epigastric region.
    Last edited by Merch; 03-15-2011 at 08:27 PM.

  9. #9
    Regular User
    Join Date
    Mar 2011
    Vancouver, BC
    I received by latest blood results. LDH is 202 U/L. I don't see ESR/Sed Rate listed on any of the papers, I will ask about this next time I see the doc.

    I've been on Prednisone and Cyclophosphamide for 5 and 6 days respectively now. Within two days of starting the drugs the enlarged lymph node in my neck has shrunk considerably and most of my B symptoms are gone. I haven't experienced any fevers, night sweats or excessive fatigue in several days. I have 7 days of the drugs total, hopefully the symptoms don't return once I complete the cycle.

    I have an echocardiogram scheduled for tomorrow.
    I will get my port installed on March 29th and start ABVD on April 1.
    Last edited by Merch; 03-22-2011 at 03:28 AM.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35

  10. #10
    Senior User Dorney1's Avatar
    Join Date
    Feb 2010
    London, UK
    Hi Merch.

    Good luck for the start of your ABVD. I won't lie, it's not an easy regime, but it is certainly not one of the hardest as far as chemo regimes go. If you have any questions feel free to ask me - happy to help.

    Cheers and good luck!

    Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.


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