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Thread: Diagnosed with NSHL (bulky)

  1. #1
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    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):
    http://kickingthehodge.blogspot.com/

    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.

    Impression
    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

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

    Comparison
    No prior studies available for comparison

    Findings
    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.

    Impression
    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 03:10 AM.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  2. #2
    Administrator Top User Didee's Avatar
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    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 57
    1987 CIN 111. Cervix lasered, no further problems.

    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. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  3. #3
    Administrator Top User ChemoMan's Avatar
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    Hi

    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 58
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

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  4. #4
    Senior User Dorney1's Avatar
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    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.

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

  5. #5
    Administrator Top User Kermica's Avatar
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    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,

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

    Age 63
    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 Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  6. #6
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    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 08:22 PM.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  7. #7
    Senior User Sleeper's Avatar
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    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
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    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).

    History
    Work up Lymphoma

    Technique
    Contrast enhanced images were obtained through the abdomen and pelvis.

    Findings
    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.

    Impression
    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 09:27 PM.

  9. #9
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    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 04:28 AM.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  10. #10
    Senior User Dorney1's Avatar
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    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!

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

  11. #11
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    I received a call from my Onc today. A committee reviewed my CT scans and decided that I was stage IVb instead of IIIb due to the pericardial effusion and masses in my lungs. They still believe the original treatment plan is the best course of action so I will still be starting with 6 cycles of ABVD on April 1 with a decision on whether or not to get rads after the post chemo CT.

    I completed my cycle of Prednisone on Monday and Cyclophosphamide on Tuesday. Since completing the Prednisone I've been really tired. As I expected doc said this was withdrawal and should go away once cortisol production returns to normal.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  12. #12
    Senior User Dorney1's Avatar
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    Hi Merch.

    Where are you getting treated? I'm surprised, at stage IVb that firstly they haven't considered 8 cycles and secondly they are not moving you on to BEACOPP.

    I'm not a doctor and I don't want to challenge people with years of genuine medical training, however, the general consensus with HD is to get it the first time around and, at such a late stage, I would personally consider the all guns blazing approach.

    Would still be interested in knowing your ESR levels.

    Good luck.

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

  13. #13
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    I asked my doctor about adjusting the treatment. The committee felt that the extralymphatic masses were small minor enough that 6 cycles of ABVD would be sufficient. I am being treated at the British Columbia Cancer Agency in Vancouver. Communist health care doesn't exactly leave me with options about where I'm treated but my Onc seemed confident in the treatment plan. I assume if the mid-chemo scans are not as good as expected we will escalate to BEACOPP instead of continuing with ABVD.

    I'm not sure why but my ESR level is not part of the blood report I received. My Doc specifically mentioned he wanted it before, I'll ask about this when I see him.

    My first chemo has been moved up to March 31 instead of April 1.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  14. #14
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    Onc called me yesterday to ask if I wanted to participate in a clinical trail for SGN-35. It would be .6-1.2mg/kg of SGN-35 along with ABVD. Joining the trail would mean delaying the start of treatment by about two weeks as I'd have to get new CT's, PETS, bloodwork, PFT etc. Doc doesn't think waiting an extra two weeks is an issue given the good response to the Prednisone and Cyclophosphamide.

    I asked about ESR levels, doc said he didn't get them checked because it isn't very important for late stage disease. I would image this would be done if I join the trial.

    For those who may be interested I put some more info about SGN-35 on my blog here:
    http://kickingthehodge.blogspot.com/...sion-time.html
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  15. #15
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    I had my port installed earlier in the week. Install went smoothly and it has healed.

    I decided to join the SGN-35 trial so I will be starting 6 cycles of ABVD+SGN-35 on April 19th.
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  16. #16
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    I got the results of my PET scan:

    Indication
    Lymphoma Screening for clinical trial

    Technique
    438MBq of FGD was administered intravenously following a six-hour fast and informed consent. Prior to injection, the blood glucose level was 5.3. Approximately one hour later, low mA non-contrast CT and co-registered emission PET images were acquired of the total body. Comparison was done with a previous CT abdomen and pelvis dated March 4. 2011.

    Findings
    There is extensive bilateral mostly lower posterior cervical lymphadenopathy seen (moreso on the right) which is intensely FDG avid, with a maximum update SUV 9.2. Extensive bilateral surpa and infraclavicular, axillary, mediastinal and bilateral hilar lymphadenopathy is also seen with intense FDG update [SUV max 8.8]. Multiple pulmonary nodules are seen with focally increased FDG uptake [SUB max 5.8] likely representing pulmonary involvement. Pericardial effusion is seen with no pleural effusion.

    Splenomegaly is seen with 3 focal moderate to intense FDG-avid lesions [SUV max 6.8]. Multiple retroperitoneal, celiac, gastrohepatic and lower para-aortic FGD-avid lymph nodes are seen with intense FGD activity [SUV max 8.6]. No other focal FDG avid abdominal or pelvic lesion is seen. Mild diffuse activity in the right psoas muscle. No definite focal FDG avid osseous lesion is seen but there is mild diffuse accentuation of bone marrow activity and bone marrow involvement may be present.

    Impression
    Extensive widespread intensely FGD avid lymphadenopathy, with splenomegaly and multifocal spleen lesions, pulmonary lesions and possible bone marrow involvement.
    ABVD + SGN-35 will start next Tuesday. I can't to get started it has been about 15 weeks since they first suspected I had HL to now...
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  17. #17
    Top User shakifan's Avatar
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    Hey Merch! That is good news that you finally know when treatment will start! I am about on the same timeline as you-I've been pretty sick since Dec. and still trying for a good diagnosis. Tomorrow (Fri) I go in for my port placement and yet another lymph node removal. Not looking forward to it, but especially hoping this will be the last time I can't eat after midnight! I have my fingers crossed to start chemo next week as well. Good luck to you and keep us posted!
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

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