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Thread: PMBCL - My story.

  1. #1
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    PMBCL - My story.

    This is a re-edit of my original post. I thought I'd format it into a timeline so it's more digestible.

    April 2010: Healthy, energetic although sleep deprived.
    May 2010: Started to feel aches and pains. Thought it was from wearing heels, heavy lifting, bad bed, arthritis.
    June 2010:
    Early June: Started to feel really fatigued. Thought it was just from doing too much. House-sitting on top of usual work load as mother of a toddler/postgrad student trying to finish off thesis.
    Saw a GP who gave me anti-inflammatory tablets and hard core pain killers. When I asked him whether it was okay to have been taking panadol for a month, he laughed and said that warning was only for people who might have cancer, nothing I had to worry about. To his credit he did send me for blood tests, but I just didn't find the time to do it.
    Late June: Saw another GP because I wasn't feeling right. I was really tired and sore. Was diagnosed with depression. Prescribed anti-depressants.
    July: Early July, still popping pain killers, anti-inflammatory tabs and anti-depressants. Developed cough and rash. I thought it was a flu cough and rash was eczema or psoriasis rash. By this stage I was in a lot of pain (left side) and had night sweats. All classic symptoms of lymphoma.
    Late July, still not feeling "right" and could feel mass moving in my chest. I was unable to walk at my normal speed or lift my left leg. The cancer had spread to my bones by this stage. I went back to the GP who ordered a blood test because of my high heart rate. I had the blood test and was told to go to emergency.
    August: Diagnosed with Primary Mediastinal NHL.
    August - December: In and out of hospital. 6 cycles of EPOCH-R and stem cells harvested.
    Now - awaiting end of treatment clinic to find out if this is it...or whether there's more ahead.
    Last edited by Redteacup; 01-27-2011 at 09:58 AM.

  2. #2
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    Chilling. My experience was similar. Lymphoma comes in on little cat feet.

    Where are you? You sound like an American.

    Keep us posted on your test results.

    Hang in there, Redteacup. I'm sending you good vibes from San Francisco.
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III, bulky
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED since May of '10

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

    Thankyou for your story and good luck with you clinic visit. Please post back with the findings if you feel up to it.
    Age 57
    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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    RULE NUMBER 2..... Don't forget rule Number 1

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  4. #4
    Administrator Top User Didee's Avatar
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    I can sympathise with all the runaround that you have had as it took 7 months to diagnose me.
    Welcome to the place where nobody wants to be.
    We are here for you if and when you need us. Please keep us updated.
    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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  5. #5
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    Hi Redteacup

    Let me add my welcome and good wishes.

    There is a huge amount of good stuff on this Forum and some very knowlegable and experienced people to share information.

    Our Son had DLBCL with a large mass in his chest and very similar symptoms to you. I believe there are small differences in the treatment for Primary Mediastinal NHL but essentially they are very much the same.

    Hoping that you don't need any more treatment.

    Cheers
    21 yr old male (Our Son)
    Diffuse Large B-Cell Non Hodgkins Lymphoma
    Stage 1A Mediastinal Mass 8cm x 7cm
    Diagnosed October 09
    Started course of 6 x R-CHOP 14 in Nov 09
    Course complete Jan 2010
    Remission declared March 4th 2010
    Continues in remission March 2014

  6. #6
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    I came back with a no evidence of disease/no active disease scan. Yay. There are some areas that lit up on the scan, but they say it's probably brown fat. I'm thinking if the doctors have been right so far, no reason to doubt them.
    I'm now at the - okay. what now...stage.
    Everything feels so normal again.

    It's been difficult getting my head around the fact that some stage 4 cancers are not only treatable, but curable.

  7. #7
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    Smile

    That's fantastic news Redteacup.

    As you say, no reason to doubt the results - so get on and enjoy your life.

    Brilliant!

    Cheers
    21 yr old male (Our Son)
    Diffuse Large B-Cell Non Hodgkins Lymphoma
    Stage 1A Mediastinal Mass 8cm x 7cm
    Diagnosed October 09
    Started course of 6 x R-CHOP 14 in Nov 09
    Course complete Jan 2010
    Remission declared March 4th 2010
    Continues in remission March 2014

  8. #8
    Administrator Top User Kermica's Avatar
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    hey, Redteacup, congratulations to you!!! That is really great news and I am thrilled to see another person pass that magic remission line.

    Continued good health,

    kermcia
    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.

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