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Thread: New in TN

  1. #1
    Senior User
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    Tn
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    New in TN

    Well, I'm 47, married, three sons, three grandkids, (two boys and one girl) and another grandbaby expected on the way (boy-April 11th). Told I have non-hodgkin's lymphoma, Found out today, 10-28-2011. They had been trying to find out what was wrong for about a month. My family doctor was checking me out after I hurt my stomach working under my oldest son's house. They did a CT scan, found enlarged lymph nodes in my stomach. Did a biopsy and today the doc called and said it is lymphoma.
    Whay am I here? I guess I need to vent to someone who will understand. My wife has been crying for weeks and it is only getting worse. Everyone looks at me like I'm gonna fall over any second. Co-workers are freaked out how quick it happened.

    I am years away from retiring on disability and wanted to work a few more years. I am not sure what will happen next. They are trying to get me in with an oncologist next week if possible. Of course they have to determine how best to treat it. The local country docs what me to stay here for treatment and I plan to go to Nashville. St. Thomas Hospital.

  2. #2
    Administrator Top User Kermica's Avatar
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    New York
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    Hello Bank and welcome to the place no one wants to be but many come to value. I am going to move your post to the lymphoma forum where there are many, many folks who have been where you are and can help you through what lies ahead. The good news is that lymphoma is treatable and often curable so there is much room for optimism.

    Do you know which subtype you have? That is very useful information for us as there are about 35 different types and our input will vary a lot based on your answer. It is also useful to know stage, grade, doctor recommendations, etc...especially if you are looking for detailed feedback. Either way, we are here for each other - cancer patients and their caregivers so feel free to provide details, to vent, to ask questions...what ever works for you.

    Again, welcome and 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.

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

    OK read my rules in the sig. Don't panic and tell your wife the rules as well. You are gonna to be OK. As K mentioned get back to us with some info so we know what we are dealing with. From what you mentioned it sounds like a gastric lymphoma. The staging of these is quite tricky so we need to know the TNM stage if you have that.

    Get back to us with that info

    Cheers
    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.

  4. #4
    Senior User
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    Specifically, low grade follicular lymphoma. I've read the FLOW CYTOMETRY REPORT and it all sounds like another language to me right now.
    Other than that I don't know what much of it all means.

  5. #5
    Administrator Top User Didee's Avatar
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    Jun 2010
    Location
    NSW Australia
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    Hi from me too.
    Hang in there. This is the absolutely worst time, getting diagnosed and staged etc.
    We are here for you.
    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

  6. #6
    Administrator Top User ChemoMan's Avatar
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    South Australia
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    Quote Originally Posted by Bank Walker View Post
    Specifically, low grade follicular lymphoma. I've read the FLOW CYTOMETRY REPORT and it all sounds like another language to me right now.
    Other than that I don't know what much of it all means.
    You are in good hands then. I will let the FL people introduce themselves. You have a long time to deal with this, there is definitely no need for panic.
    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.

  7. #7
    Experienced User LancashireLass's Avatar
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    Feb 2011
    Location
    Oldham, Lancashie, UK
    Posts
    74
    Hi Bank,

    Welcome and sorry you have to be here but you have come to the best place for support. As you can see from my signature I was diagnosed with FL in Feb this year and I have been back at work since September. I followed Chemoman's rules and was determined that family life would carry on as normal.

    We are here for you

    Hugs and xxxx

    Michelle
    Michelle
    Age 48 (44 when first diagnosed)
    Diagnosed with Follicular Lymphoma 11th Feb 2011
    Stage 3B
    CT scan & biopsy from under arm
    Lymph nodes in neck, collar bone and under arms. Enlarged spleen.
    Weight loss & fatigue
    Treatment - R-CHOP 8 cycles 21.2.11 to 18.7.11

    2 Monthly Retuximab maintainence starts 12.9.11 for 2 years

    17.4.15 - Relapse confirmed

    I remember the RULES!!!!!

  8. #8
    Senior User
    Join Date
    May 2011
    Location
    Chicago IL
    Posts
    328
    Bank

    Please keep in mind you have a slow growing indolent nhl. You will have a long life with the annoyance of Fnhl. There are many fnl'ers on these boards
    They have been thru EVERYTHING you could possibly go thru, please keep coming back,. Great people here to offer support, advice, knowledge
    and keep you going. Sure there will be dark days ahead, that's when you come here to vent and rant, we all do it, and it helps!!!

    Mark
    Chicago 54 years old
    LPL/Waldenstroms indolent nhl, dix Friday the 13th 5/13/11
    R-CVP, 5/23/11 6 cycles, 12/20/11 PR, w&w for now

  9. #9
    Hi Bank. I was diagnosed in February of this year and me and my family went through the exact same thing you are experiencing right now. We all have. And I can say that the folks on this board kept me upright during the first difficult time of diagnosis. It is very acute at first, but as you learn more and realize the reality of the situation (you are not going to die), you will feel better. I will say however, that if you do have a low-grade follicular lymphoma, the worst part is actually FIGURING OUT WHAT TO DO, particularly if your doctor tells you that you qualify for what we refer to as "watch and wait." If you are grade 1 or 2, are not symptomatic, have no swollen nodes threatening anything, then you very well may be told to do just that. This was BY FAR the hardest thing for me to wrap my head around. And some can handle it beautifully, while others (like me) just can't.

    We can all give you so much more advice once we get more details from you. Figure out your grade, stage, and subtype. Also get specific node sizes once you do your PET/CT scan if you have not already. You need to of course know if you have bone marrow involvement or not too. Don't let any of this freak you out however, and please tell your wife that everything is ok. Seriously. A friend of mine on the facebook support page told me yesterday that "low-grade follicular lymphoma is something you LIVE WITH, not something you die from." I love hearing that from a lymphoma specialist.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED! 2/15 NED! 2/16 NED!

  10. #10
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    443
    Thanks so much. My biggest hurdle is going to be balancing my family, work and cancer. I am young and strong. I truly believe I can beat this. We want to stay positive. I guess the biggest disappointment for me right now is the realization that I will have to deal with this till I die. I had been thinking that I could beat this and move on. No such luck this time. I am already glad I decided to come to this forum, I'm truly going to need to talk to people that are living it also. As time goes by I will know more on how to describe my specific cancer situation.
    Age 52
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

 

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