CSN Login
Members Online: 16

Looking for other patients experiences with NLPHL

surveying
Posts: 1
Joined: Sep 2012

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!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1041
Joined: May 2012

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's picture
Aaron
Posts: 237
Joined: Jun 2012

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's picture
Max Former Hodg...
Posts: 1041
Joined: May 2012

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's picture
jimwins
Posts: 2002
Joined: Aug 2011

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

Jim

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

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's picture
jimwins
Posts: 2002
Joined: Aug 2011

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

Jim

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

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)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network