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Thread: The Fear is back

  1. #31
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    The only question that matters:

    Did you survive lymphoma?

    The only acceptable answers:

    1. Yes.
    2. No.

    No "Yeah, but..." allowed.

    Keep it simple.

  2. #32
    Moderator Top User
    Join Date
    Mar 2010
    Quote Originally Posted by Josh Clarke View Post
    Iím afraid once they notice the anxiety, theyíre not going to be as ďtruthfulĒ about what they feel
    If that is what you believe then you really are on the slippery slope, a different question to Po, if the scan comes back clear and you believe you still have raised nodes and other issues emerging, will you believe them or have you convinced yourself you have relapsed and only when you are told that will your brain accept it as the truth?? ... scary if you don't put your mental health first.

    If you google Dr Peter Harvey and his paper life after treatment it will help you understand some of these feelings and may help you start to manage them better.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #33
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    I just looked up the signs and symptoms of anxiety. I have them all.
    Iím considering going to urgent care to possibly get anti-anxiety meds and MAYBE have them examine my nodes. Iím afraid once they notice the anxiety, theyíre not going to be as ďtruthfulĒ about what they feel. Scan is in 3 days anyway ...
    Josh, I have stayed on the sideline through this discussion as I did not feel that I had a lot to add. I have been lurking and reading it right along, though.

    I think one thing that could help you is to separate your two conditions and then treat them differently. Your lymphoma seems to be under control and you will have a scan to confirm that (tomorrow, I think) so there is nothing to be done about it until those results are in hand. Either way, though if I were a betting man, I would bet on a good report for you.

    The other (and perhaps more important) issue is your anxiety. I think you need to go back to your GP and speak with him about the anxiety issue and yur challenges in managing it effectively. Let the generalist help guide you to possible solutions to this problem. Acknowledge to him that the cancer is a main driver and give him an accurate assessment of where that illness stands. At the same time, make sure he understands that you need help in managing your anxiety, not yur cancer since you have a whole separate team working on that.

    The anxiety is what seems to be undermining your quality of life, Josh. That is the beast that needs to be beaten down in order for you to move on with your life...no matter the status of the lymphoma. Good luck with your scan (may it be negative for lymphoma!) and with overcoming your anxiety.

    Good health,

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

    Age 67
    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 iliac 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.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.


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