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Thread: PMBCL - My story.

  1. #1
    Newbie Regular User
    Join Date
    Jan 2011

    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 10:58 AM.

  2. #2
    Senior User
    Join Date
    Jun 2010
    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
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED from May of '10
    Recurrence of lymphoma February '15

  3. #3
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    South Australia
    Blog Entries
    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 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
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    NSW Australia
    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 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

  5. #5
    Senior User
    Join Date
    Dec 2009
    United Kingdom
    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.

    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
    Newbie Regular User
    Join Date
    Jan 2011
    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
    Senior User
    Join Date
    Dec 2009
    United Kingdom


    That's fantastic news Redteacup.

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


    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
    Join Date
    Jul 2009
    New York
    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,

    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.


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