Looking for other patients experiences with NLPHL

surveying
surveying Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1
My brother started treatment for IVa NLPHL in December of 2011 He received 6 cycles of r-abvd. Treatment ended in late June, results of pet-scan at that time showed slow growth in the right axillary still. Doctors recommended wait and watch until September, so here we are. Went to the Doctor for yet another pet-scan and the right axillary still shows slow growth, they are now recommending wait and watch again until December. The doctors did not seem surprised that he had not reached remission after his first round of treatments. It is so difficult to get information about this disease, I am hoping to compare notes with other patients and see how they progressed after their first round of treatment.

Thanks for the help everyone!

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Strain of Disease

    Surverying,

    I had NLPHL, Stage III, as my "Name" here indicates. (I have tried to reduce the name to just "Max," but have not figured out how to do so yet.)

    NLPHL is a rare and "indolent" (slow-moving) strain, which is odd in that it has both HL and NHL cell chracteristics. It usually responds pretty readily to abvd treatment, with very good prognosis for Complete Remission ("CR"). I was scheduled for 12 rounds of r-abvd from day one, and got to CR before the last infusion, and have been there since, or for about 3 years now.

    I would ask a few relevant questions: How old is your brother ? Since he is stage IV, where has the cancer spread to ? Did he have "bulky" disease ? All of these affect treatment response.

    "Watch and Wait" is not uncommon with indolent disease, so the doc is not being "weird" for his suggestion at the moment. It was two months before my first CT showing lymphoma, and my first treatment, due to waiting on appointments and so forth. I asked my oncologist about this, and he said that with what I had, the wait did not matter.

    Do reply, if any of this is helpful. You can use the "private" response to me as well, if you prefer.

    We have one or two other NLPHL patients using this site currently, and both mentioned initially that it was hard to find patients or former patients with that specific disease.

    max

    .
  • Aaron
    Aaron Member Posts: 237
    #3
    Max Former Hodgkins Stage 3 said:

    Strain of Disease

    Surverying,

    I had NLPHL, Stage III, as my "Name" here indicates. (I have tried to reduce the name to just "Max," but have not figured out how to do so yet.)

    NLPHL is a rare and "indolent" (slow-moving) strain, which is odd in that it has both HL and NHL cell chracteristics. It usually responds pretty readily to abvd treatment, with very good prognosis for Complete Remission ("CR"). I was scheduled for 12 rounds of r-abvd from day one, and got to CR before the last infusion, and have been there since, or for about 3 years now.

    I would ask a few relevant questions: How old is your brother ? Since he is stage IV, where has the cancer spread to ? Did he have "bulky" disease ? All of these affect treatment response.

    "Watch and Wait" is not uncommon with indolent disease, so the doc is not being "weird" for his suggestion at the moment. It was two months before my first CT showing lymphoma, and my first treatment, due to waiting on appointments and so forth. I asked my oncologist about this, and he said that with what I had, the wait did not matter.

    Do reply, if any of this is helpful. You can use the "private" response to me as well, if you prefer.

    We have one or two other NLPHL patients using this site currently, and both mentioned initially that it was hard to find patients or former patients with that specific disease.

    max

    .

    I'm a third of the way into
    I'm a third of the way into treatment. Mine started in the right axillary as well and after my first scan last week I have a 50% reduction in tumor size. Did your brother show any response during treatment? And if I may ask what made him stage 4? that a bit of a rarity even for our rare condition. Max is an amazing wealth of knowledge on this subject and I'm sure willing to chime in as well. Perhaps rituxan maintainance may be next on the list, I wish your brother all the best an I'm reminded of a saying about nlphl coined by a gentleman on another forum "it's persistent but weak"
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #4
    Aaron said:

    I'm a third of the way into
    I'm a third of the way into treatment. Mine started in the right axillary as well and after my first scan last week I have a 50% reduction in tumor size. Did your brother show any response during treatment? And if I may ask what made him stage 4? that a bit of a rarity even for our rare condition. Max is an amazing wealth of knowledge on this subject and I'm sure willing to chime in as well. Perhaps rituxan maintainance may be next on the list, I wish your brother all the best an I'm reminded of a saying about nlphl coined by a gentleman on another forum "it's persistent but weak"

    Aaron

    Aaron, buddy,

    I guess Surverying got the information he needed -- a good thing. How are you ? Don't drop off the edge of the world into the Pacific...

    max

    .
  • jimwins
    jimwins Member Posts: 2,107
    #5
    Max Former Hodgkins Stage 3 said:

    Aaron

    Aaron, buddy,

    I guess Surverying got the information he needed -- a good thing. How are you ? Don't drop off the edge of the world into the Pacific...

    max

    .

    Ditto
    Yeah, Aaron. I don't want to read about Sue catching a big "Aaron fish" ;).
    Hope you're doing well.

    Jim
  • Aaron
    Aaron Member Posts: 237
    #6
    jimwins said:

    Ditto
    Yeah, Aaron. I don't want to read about Sue catching a big "Aaron fish" ;).
    Hope you're doing well.

    Jim

    Hi guys
    Heads still above water .... Barely. I'm going in to see my Onc today for these weird fevers I get in the evening usually after I have dinner. Their going to do the full work up on me so hopefully we can get to the bottom of this, it's a bit scary to go to sleep with a 101 degree fever when your on chemo. I sure hope we didn't scare that person off max with too much info or questions, I hope they got what they needed. Thanks for the concern guys, I haven't been swallowed by the ocean or hooked by sue... Yet. ;)
  • jimwins
    jimwins Member Posts: 2,107
    #7
    Aaron said:

    Hi guys
    Heads still above water .... Barely. I'm going in to see my Onc today for these weird fevers I get in the evening usually after I have dinner. Their going to do the full work up on me so hopefully we can get to the bottom of this, it's a bit scary to go to sleep with a 101 degree fever when your on chemo. I sure hope we didn't scare that person off max with too much info or questions, I hope they got what they needed. Thanks for the concern guys, I haven't been swallowed by the ocean or hooked by sue... Yet. ;)

    Hey Aaron
    Sue would throw you back ;). Hang in there and hope
    you feel better and they get to the bottom of this.

    Jim
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #8
    jimwins said:

    Hey Aaron
    Sue would throw you back ;). Hang in there and hope
    you feel better and they get to the bottom of this.

    Jim

    No I wouldn't...
    I'd keep Aaron safe and sound until I could get him back home...I'm a kind fisherwoman :) Hope everyone can enjoy the Autumn season a bit...it's absolutely gorgeous here in Yakima. Take care Aaron and I hope your doc figures out whats going on with the nightly fevers. Sue
    (FNHL-2-3A-6/10)

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