Has anyone experienced an "IMMUNE REACTION" (ENLARGED NODES IN GROIN) after 4 yrs. of remission for

offspring420
offspring420 Member Posts: 10
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Feb. 2008, went thru 8 rounds of R-CHOP, then a total of 26 treatments of Rituxan (2 1/2 yrs after radiation).  Have been in remission; however, in mid-Nov., noticed a pea-size lymph node in right groin (always check under arms and groin areas), as last time enlarged nodes were in left arm-pit.  Because I always had terrible sweats during the summer, really can't tell this time (plus pain medication causes my head to perspire) - I have had a few night sweats in the past month, but it's been cold lately and have the heater on' plus my heating pad warms my whole body up - eating pads really help with back and hip pain.

Pet/CT done 12-6, biopsy thereafter on 12-26-12.  Three different pathologist from same Hospital are confused with my results.  Plus, the Pet/Scan disc does not match up (hot spots in various areas (small) on the actual disc, but report contradicts the typed report!  Now, it's a waiting game.  Glad I've consulted with two expert oncologists this time around.  If it's just (what they called, an "immune reaction"), will try and bring the enlarged groin lymph nodes down with Prednisone.  If the cancer has returned, will have to go through stem-cell treatment.  By the way, has anyone been to City of Hope for stem-cell transplant?  Wishing all of you bountiful prayers and good wishes!  Hang in there!

Comments

  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
    waiting game

     Hate the waiting game, did they compare your scans? I have small activity on my hip bone (suv of 2.4), that is what they compare to now..... good luck, let us know.... Vinny

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Waiting is so hard...

    Hi offspring,

     I was diagnosed in June of 2010. Never did get to full remission, but have been considered "stable". My last Rituxan infusion is Feb 22nd and then I'll have a follow up scan in March to see if I've finally reached remission. It's been a full year since my last scan, so I'm anxious to see if all is well. Not knowing is hell, but I figure as long as I feel good and my blood work keeps coming back ok, I should get good results. I sure hope you find some answers soon. Praying all you will need is the prednisone...sure would be the best scenario. Let us know what you find out. Best wishes...love, Sue  (FNHL-2-3A-6/10-age 62)

  • offspring420
    offspring420 Member Posts: 10
    #4
    allmost60 said:

    Waiting is so hard...

    Hi offspring,

     I was diagnosed in June of 2010. Never did get to full remission, but have been considered "stable". My last Rituxan infusion is Feb 22nd and then I'll have a follow up scan in March to see if I've finally reached remission. It's been a full year since my last scan, so I'm anxious to see if all is well. Not knowing is hell, but I figure as long as I feel good and my blood work keeps coming back ok, I should get good results. I sure hope you find some answers soon. Praying all you will need is the prednisone...sure would be the best scenario. Let us know what you find out. Best wishes...love, Sue  (FNHL-2-3A-6/10-age 62)

    Hi Allmost60 - cute name (I

    Hi Allmost60 - cute name (I hate to tell you this, but all along I've been getting blood tests every 3 months this past year (2012)  Nothing out of the ordinary on results, so now I have no faith in blood tests.  The only thing I would look at closely, were my "creatine" levels.  They've always been .9, but my last result came back 1.0. 

    It was the lymph nodes in my groin that concerned me (even when I first noticed a pea-size - it was enough to tell me something was wrong).  Plus, my oncologist never said anything about my glucose being 145!, very high.  Stopped eating cakes, candy and got it down to 109.  I wish you the best luck and hope you stay in remission forever!...xx

  • offspring420
    offspring420 Member Posts: 10
    #5
    vinny59 said:

    waiting game

     Hate the waiting game, did they compare your scans? I have small activity on my hip bone (suv of 2.4), that is what they compare to now..... good luck, let us know.... Vinny

    Hi Vinny - My Pet Scan in

    Hi Vinny - My Pet Scan in 2008 was sooo messed up (had 13x9x9 mass on left kidney and large nodes in other areas.)  No, they didn't compare it to the last one (actual CD), cuz there was no question the first time around.  Went to two new consults (one of the drs. showed me the scan on the radiologist computer (small nodes, largest is around 2.2 opposed to 1.9 in previous scan 2011.  Are you waiting too for results?  This is murder.  (the dr. who showed me the scan explained that the report doesn't match what is seen on the screen, size of lit up nodes and the SUV measurements!), so upset, who read this thing and dictated the notes? Bet you he wasn't Board Certified neither (as the pathologist who did the report for the biopsy)  When did you have your Pet Scan and is it similar to the very first one (hip area).  Did your doctor mention it could be an "immune reaction", never heard of this before.  Wishing you the best of luck.  Let me know.....Toni

  • vinny59
    vinny59 Member Posts: 1,036 Member
    #6
    offspring420 said:

    Hi Vinny - My Pet Scan in

    Hi Vinny - My Pet Scan in 2008 was sooo messed up (had 13x9x9 mass on left kidney and large nodes in other areas.)  No, they didn't compare it to the last one (actual CD), cuz there was no question the first time around.  Went to two new consults (one of the drs. showed me the scan on the radiologist computer (small nodes, largest is around 2.2 opposed to 1.9 in previous scan 2011.  Are you waiting too for results?  This is murder.  (the dr. who showed me the scan explained that the report doesn't match what is seen on the screen, size of lit up nodes and the SUV measurements!), so upset, who read this thing and dictated the notes? Bet you he wasn't Board Certified neither (as the pathologist who did the report for the biopsy)  When did you have your Pet Scan and is it similar to the very first one (hip area).  Did your doctor mention it could be an "immune reaction", never heard of this before.  Wishing you the best of luck.  Let me know.....Toni

    never heard of that

    Hey Toni, never heard of that term before, immune reaction... I just had my scan yesterday, I usually have the results by Wednesday.... those scans are tricky to read, I had a uptake of 8.5 in my hip area pretreatment, 2.4 after treatment. I hope all goes well for you..... Vinny

  • Unknown
    Unknown
    #7
    offspring420 said:

    Hi Allmost60 - cute name (I

    Hi Allmost60 - cute name (I hate to tell you this, but all along I've been getting blood tests every 3 months this past year (2012)  Nothing out of the ordinary on results, so now I have no faith in blood tests.  The only thing I would look at closely, were my "creatine" levels.  They've always been .9, but my last result came back 1.0. 

    It was the lymph nodes in my groin that concerned me (even when I first noticed a pea-size - it was enough to tell me something was wrong).  Plus, my oncologist never said anything about my glucose being 145!, very high.  Stopped eating cakes, candy and got it down to 109.  I wish you the best luck and hope you stay in remission forever!...xx

    Blood tests

    I agree that blood tests don't always tell the story. All through diagnosis and Rituxan treatment i get a blood workup every 8 weeks and mine have always been good. I now have some lumps in the front of my throat. Am waiting till March to get a scan unless they grow quickly. I have a new small knot just under the skin on the back of my neck. Definitely not a lymph node. Is your pea sized lump near the surface?

  • offspring420
    offspring420 Member Posts: 10
    #8
    unknown said:

    Blood tests

    I agree that blood tests don't always tell the story. All through diagnosis and Rituxan treatment i get a blood workup every 8 weeks and mine have always been good. I now have some lumps in the front of my throat. Am waiting till March to get a scan unless they grow quickly. I have a new small knot just under the skin on the back of my neck. Definitely not a lymph node. Is your pea sized lump near the surface?

    Blood Test

    Hi GKH - they took one of two lymph nodes in my groin for a biopsy.  Now they want to do another biopsy cuz the results came back "complicated" - so the one that's left in my groin is still there.  I wish they could explain to me what this could be (plus the few showing on PET)  I feel like this out-of-pocket stuff is really getting to me.  Trying to stay positive.  Do you have a good doctor?  Where do you live?  I'm in Sherman Oaks, CA (not far from Universal Studios)  Seen two specialists, and the one my current oncologist referred me to at UCLA said he had his top pathologist do his own slides of block and still can't come up with a definitive answer.  So leary to get a biopsy done thru the same doctor (although he is good; guess there was no activity in the one he yanked.) Have trust issues now.  THe other specialist is waiting for his conclusion of slides that he had sent over from UCLA).    I pray for you that your scan comes out clean!

  • Unknown
    Unknown
    #9
    offspring420 said:

    Blood Test

    Hi GKH - they took one of two lymph nodes in my groin for a biopsy.  Now they want to do another biopsy cuz the results came back "complicated" - so the one that's left in my groin is still there.  I wish they could explain to me what this could be (plus the few showing on PET)  I feel like this out-of-pocket stuff is really getting to me.  Trying to stay positive.  Do you have a good doctor?  Where do you live?  I'm in Sherman Oaks, CA (not far from Universal Studios)  Seen two specialists, and the one my current oncologist referred me to at UCLA said he had his top pathologist do his own slides of block and still can't come up with a definitive answer.  So leary to get a biopsy done thru the same doctor (although he is good; guess there was no activity in the one he yanked.) Have trust issues now.  THe other specialist is waiting for his conclusion of slides that he had sent over from UCLA).    I pray for you that your scan comes out clean!

    Hi

    I am in Virginia anout 45 miles west of DC. All I can say is when I was diagnosed my Doc had the hospital send samples to labs in MA, Ca and MD Anderson in Houston. All came back with the same diagnosis. Any way you could have MD Anderson look at it?

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