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Thread: Unexplained fever

  1. #1
    Newbie New User
    Join Date
    Nov 2012

    Unexplained fever

    Hello everyone, a few weeks ago my son started out with a high fever and complaining of back pain. We thought maybe something kidney or urinary related as he was urinating as often..of course we know this could be because of the fever. We saw his doctor and he ordered a CBC and flu culture. The first CBC two weeks ago came back with elevated WBC, and the doc gave him a shot of Rocephin and put him on Zythromax. After the meds, he seemed to be doing better, the fever was down. After about 24 hours of being off, the fever came back at about 102, then came down and hung out at a low grade of around 100.5 rectally. The other day, I noticed a large lump under his armpit, and the doctor did confirm it was a lymph node. I ended up with a different doctor, thank goodness because I wasn't getting answers before. He ordered another CBC with a Sed rate count. WBC came back still elevated and his platelets have doubled and are now elevated. His neutriphils are a little high as well. His Sed rate came back at 77, and normal is 0-15. He is still runing low grades. No other symptoms, he has tested negative for flu, mono, and menigitis. Urine came back fine as well as blood cultures. We have been referred to a hemotology doctor. What are your thoughts in this? He has remained pretty hush on the topic. You can look at my son and tell his not himself. Hes a ball of energy, and he still has his moments, and other moments he just looks drained. His doctor wanted me to wait for his brother to gegt back into the country, however that would put us in Decemeber to get him seen. Im not comfortable with his brother, so I was able to get an appointment with nemours childrens clinic. I would rather not go into this blindly, any light that can be shed please let me know.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Hi Natesmom and welcome. It sounds to me like you are doing all the things a concerned parent should be doing when they know their child is "not right" I don't have any opinionon the specific test results as I don't have the knowledge needed to provide that.

    I will tell you that, if you are concerned, you should keep pressing for a definitive diagnosis. I have no clue what that dianosis will be but, in the unlikely event it is some type of cancer, we will be here to listen, to advise and to support you as he makes that journey. Good luck with everything and do please let us know how things go from here.

    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
    Nov 2012
    Thank you for your kind words. Sometimes the doctor makes me feel like I should worry then sometimes not.

  4. #4
    Newbie New User
    Join Date
    Jan 2013
    Hi Nates mom...
    I really hope you didn't wait until his brother got back... I'm very surprised that the Dr.'s at Nemours would want to do that.. We went through Nemours and everything was extremely quick and the doctors were quick to stay on top of things and a head of the game. I applaud you for keeping this your main focus and not letting one doctor detour you from what you "know" as his mom. Keep that mind set. We do often "know" more than what doctors do when it comes to "our" children. Our family has gone through the whole cancer fight so if you need to talk, vent, ask questions, what ever! Please feel free to email me!
    Keep your head up and remember GOD Is In Control!


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