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Thread: The Fear is back

  1. #31
    Super Moderator Top User po18guy's Avatar
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    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
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    Quote Originally Posted by Josh Clarke View Post
    I’m afraid once they notice the anxiety, they’re not going to be as “truthful” 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
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    I just looked up the signs and symptoms of anxiety. I have them all.
    I’m considering going to urgent care to possibly get anti-anxiety meds and MAYBE have them examine my nodes. I’m afraid once they notice the anxiety, they’re not going to be as “truthful” 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,

    kermica
    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.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

  4. #34
    Thanks for all the replies. I had a CT scan on Wednesday. Results weren’t in before the weekend, so I’m still waiting. Thanks to everyone here (and Ativan) I’ve been coping better. Anxiety is a little higher today as I expect to get the results tomorrow. I’ve really tried to separate the issues as suggested by Kermica and it has helped. I keep reminding myself that all of these “symptoms” popping up right after I became anxious about my weight loss would be a very big coincidence. Also, I keep trying to remind myself that a lot of these symptoms could be, and most likely are, caused by anxiety. And of course, if it is a relapse, I still have a chance of being cured. It’s funny ... I’m not so much afraid of death this time; it’s maybe having to do chemo again that terrifies me. I’ve been taking the Ativan for about a week, but I didn’t take it today and I think I can get by without it (even though I have some minor “withdrawal” symptoms: headache, stomach aches, and pains). I hear it’s not good to be on it for extended periods of time.

    Anyway, just wanted to check in. Once again this forum has been a great source of support, so thanks for that.

  5. #35
    Hope your scan was all clear and the silence on this thread means you have gone back to a busy routine after getting this scare cleared.

    I remember we both went through treatment around the same time. I came back after a while to check the forums and noticed this thread today so got concerned.

    Hope all is well and do update us when possible.

    Quote Originally Posted by Josh Clarke View Post
    Thanks for all the replies. I had a CT scan on Wednesday. Results weren’t in before the weekend, so I’m still waiting. Thanks to everyone here (and Ativan) I’ve been coping better. Anxiety is a little higher today as I expect to get the results tomorrow. I’ve really tried to separate the issues as suggested by Kermica and it has helped. I keep reminding myself that all of these “symptoms” popping up right after I became anxious about my weight loss would be a very big coincidence. Also, I keep trying to remind myself that a lot of these symptoms could be, and most likely are, caused by anxiety. And of course, if it is a relapse, I still have a chance of being cured. It’s funny ... I’m not so much afraid of death this time; it’s maybe having to do chemo again that terrifies me. I’ve been taking the Ativan for about a week, but I didn’t take it today and I think I can get by without it (even though I have some minor “withdrawal” symptoms: headache, stomach aches, and pains). I hear it’s not good to be on it for extended periods of time.

    Anyway, just wanted to check in. Once again this forum has been a great source of support, so thanks for that.
    35 year old male
    Dx with NSHL - Feb 2015
    Stage 2A - initial PET-CT scan lit up nodes on right side of neck and a tiny node near chest. No bulky symptoms or organs impacted.
    Completed 2 cycles of ABVD on 05/01/15. Clear interim scan. 10 Rad Treatments (20 Gy) completed 06/20/15.
    Post-treatment scan 10/21/15 - Clear. NED.
    No further scans. Only regular followup/checkups.

  6. #36
    Super Moderator Top User po18guy's Avatar
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    Happy birthday, Josh!

  7. #37
    Yikes! How easy it is to move on and forget to post updates!

    I am fine. Still cancer-free.

    IMPRESSION:

    No evidence of recurrent lymphoma or other malignancy.

    Thanks for the birthday wishes, PO!

  8. #38
    Super Moderator Top User po18guy's Avatar
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    Great news! We share clean scans. And yes, it is easy to forget about checking back in here - particularly when you are well and life is occurring in real time.

    So, best to forget about this so-called "scanxiety."

    Look forward to "scanticipation" of a clean scan!

 

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