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NLPHL Relapser - AMA

Zentao
Posts: 5
Joined: May 2018

Hi all,

First time poster here. 

Sharing my story in case it's of use to anyone, in particular given NLPHL is not common. 

First time I was diagnosed was in 2002, 21 y.o. Stage IA. Treated it with extended radiotherapy (mantle field). I believe/understand this now is an obsolete approach.

Relapsed diagnosis in beginning 2018 (36 y.o Stage IIA). Have now completed 4 rounds of R-CHOP (5th one due this week) and have now been told I am in complete remission (SmileSmile).

Happy to help anyone that might have any questions on the topic - to the best of my ability.

Best regards!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3081
Joined: May 2012

I'm glad your sharing here now, Zentao.  A random bit of trivia: I have studied Zen and Taoism a lot over the decades....

Your NLPHL journey shows some commanilities with the 'ordinary' NLPHL experience: You got it young, and very early-stage. The other common path is in the late 40s, but again, usually discovered early stage.

Correct:  radiation therapy is seldom used for any stage of NLPHL any more, or really any NHL or HL.  It is used for 'debulking,' but not a lot else. Because it is a systemic disease (potentially diffused to everywhere in the lymphatic system and bone marrow), the wisdom today is that systemic treatment (chemo) is reqired.  Another common feature of your journey has been the relapse, the bane of all indolent lymphomas.

Any yet a fourth common elemet of your experience is that there is virtually no literature or research on how to treat the disease second-line.  The use of R-CHOP is interesting. It may be because your first experience was so minor, and the cure held so long, thay your center feels this is a reasonable line of attack.    Some doctors are suggesting B&R (Bendamustine & Rituxan), or a sort of NHL maintenance approach. Some woman posted here not too long ago (I have forgotten her name) that she was getting B&T first-line for NLPHL, which reflelcts the ad hoc, random way treatments for it are tested.   Ten years ago, it was assumed relapse of NLPHL required stem cell transplantation, but most doctors have backed off from that somewhat.   I would not want a SCT response, if I relapsed (if there were reasonable alternatives).  My own doctor in 2010 told me that R-ICE without follow-on SCT would be a reasonable choice.

Since you are still so young, hopefully new ideas will emerge over time.  You and Bill are walking this similiar path simultanously now. I hope he updates us soon.

max

Bill_NC's picture
Bill_NC
Posts: 128
Joined: Jan 2013

Hi Max\Zentoa

I got a call from the ONC and he recommend to do the PET scan to find out if any other spots lights up and the severity of it. then will do Needle Biopsies but if it's inconclusive then a laparoscopy will be performed.

He also said there is a possibility the PET come back negative then will be doing a CT scan every 3 months to keep an eye on it. I asked about the treatments and options available ,and he said it's too early to make a decision but will be treated and if God will it will be cured. Since I already have ABVD I knew chemo wont be an option for me.  

Bill_NC's picture
Bill_NC
Posts: 128
Joined: Jan 2013

https://www.esmo.org/Oncology-News/Ibrutinib-First-FDA-Approved-Therapy-for-Marginal-Zone-Lymphoma

 

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