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Thread: Posting for my Dad..

  1. #1
    Newbie New User
    Join Date
    Apr 2012

    Posting for my Dad..

    Hello to everyone.

    My Dad, 59, has been battling Renal cancer for a few years now. Started out with a nephrectomy and he was "Cancer free" for about 6 months or so. Later it spread to his lungs and now his entire body (Stage IV). It has destroyed his hip killing the bone, and broke his neck with a tumor on his spine (C2 vertebrae). He has gone through many different treatments (TKI's, Radiation, Chemo) and so far none of them seem to be slowing down the cancer.

    The newest problem has been a Pericardial effusion. They currently have drained the fluid around his heart and his quality of life has gone up significantly. The next issue is the Doctors (some are for this and some are against it) want to perform Pericardial sclerosis / Intrapericardial sclerosis. To help prevent this happening again. We are aware of the side effects of the treatment and the "big" deal breaker is the amount of pain this is going to cause my Dad, as we are not sure how much fight he has left in him.

    My brother and I have been searching for an answer and have been unable to find an answer (amount of pain this will cause) , so now I'm hoping to find someone who has been through this or knows someone who has to try to get some sort of answer.

    Any help would be greatly appreciated.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    New York
    Hi Theurgist and welcome. My apologies that I didn't see your post until now but I don't drop into this Forum every day. You know the side effects of this treatment and that it has the potential to extend life for a moderate period of time. The risk of pain is there but, based on my review of the literature, does not happen all the time and is relatively uncommon (7% in the most recent study Icould fine (from 2004)) and higher in earlier studies. The procedure clearly has the potential to extend life, on average for around 90 days but much longer in some cases.

    As always in situations like this, the decision belongs to one person only and that is the patient. I hope someone who has experienced this will chime in with their experience but this is what I was able to find when I looked for answers. Good luck to you and your Dad.

    Good helath,

    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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