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Thread: worried mom -- looking for insight

  1. #1
    Newbie New User
    Join Date
    Jul 2011

    worried mom -- looking for insight

    Well my story starts back to when my son was a baby -- random symptoms such as neutropenia, low liver panel, petechia (sp), fevers. All of these symptoms slowly resolved. Fast forward, now my son is 4 years old. he has had an elarged lymph node in his neck for about 2 years, his primary kept pushing us off, telling me it was a virus. After being persistent he finally did blood work and everyhting came back normal, so once again he sent us on our way. Well the next symptom is stomach pains, GI dr, cannot figure out why. We changed his diet many times but to no ado. No here we are, we went to the ENT (on my own, without referral) to check out the lymph node because of his mounting symptoms. Well Dr took one look at it and said I don't like the looks of it. It is over 3 cm and has been there for over 6 months, he also indicated that he thinks that there may be a couple of lymph nodes fused together. So this appointment was on Tuesday, and the soonest surgery date is on Monday. It is Friday now, and my sons complaints expand. Groin pains, back pains, headaches, ear pain and fatigue. He goes to daycare while I am at work and I received a call from the teacher saying he wasnt playing, just sitting around, tired and complaining of ear pain.

    Oh and his surgery on Monday is for an excisional biopsy. We went to the Dr yesterday for his ear pain and they said everything looks fine (they only checked out his ears). I do not want my son to be in pain until the results of the biopsy come back, I feel crazy, but really want to take him to the Children's Hospital to find out about the ear & neck pain & Fatigue. Oh did I say that he has a new lymph node that showed up on the right side? I think maybe that is associated with the ear pain...... Last night, I found that he has night sweats. He fell asleep in my bed and I went to pick him up and him and my bed was soaked. At first I thought he wet the bed (unusual) but realized the wetness was only from waist up...
    I guess I am a little relieved that something is being done, but I feel so helpless that I cannot do anything or relieve his pain....
    Just looking for some insight -- the waiting is the worst part!

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    jaretsmom, I am very sorry for your worry but welcome. I also wish I had picked up your post earlier. It sounds to me like you are doing all the things a parent should do when their child is ill and the docs are not paying enough attention. This is witnessed by the reaction of the ENT who saw your son.

    I know it is very difficult because the waiting time is the worst but you just have to hunker down and get through it for your boy. By now, your son has had the biopsy, when do you get results? Please do check back in and tell us what was found, we will do our best to help. I hope the biopsy was negative, of course, but if not we are here for you with information and support.

    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.

    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.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
    Newbie New User
    Join Date
    Feb 2013
    freak out on the doc..........A patient should not be in severe pain..........unacceptable.......

  4. #4
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    This thread is from 2011.
    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


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