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Relapse During Maintenance?

PeprmntPat55's picture
PeprmntPat55
Posts: 50
Joined: Aug 2016

Is it possible to relapse during maintenance?  I have NHFL, did 6 cycles R & B. Last chemo was 1-25-17.  Started Rituxan maintenance on 4-21-18, one infusion every three months for 2 years.  I guess I have three treatments left. My last PET scan was 8-3-17. It was NED.

I had an upper body CT scan on 2-16-18.  It showed nothing out of the ordinary.

Finally,  at my April treatment onco examined me as he always does and didn't find anything out of the ordinary but as always encouraged me to self exam. 

Last week during my self exam I noticed enlarged nodes in my neck. Not obvious to see and not huge, but not sore and are still there. 

I called my onco today to schedule an exam since I don't see him again until July. First he wanted me to go see my primary care doc to rule out an infection.  I asked the nurse, why should I do that when I don't have any symptoms of an infection?  This not only will cost me another half day of work (at least) but an additional co pay!  She agreed with me and said she didn't understand why he recommended that, so she took it back to him and I now have an appointment for Tuesday morning coming. 

That's a completely different subject, not feeling that my onco is taking me seriously. 

Can anyone tell me if they've heard of relapsing during maintenance?

Thanks,

Pat

 

po18guy
Posts: 968
Joined: Nov 2011

Follicular is condirered to be a chronic, manageable disease. Like unwanted in-laws, you learn to live with it. When it raises its head, you watch, and when it advances to a cetain point, you treat it. I had a second relapse of a vastly different cancer 4 1/2 years into what was essentially maintenance on an experimental drug.

yesyes2
Posts: 576
Joined: Jul 2009

Although my NHL was not indolent I was treated with Rituxan only and during mainenance, a little over one year in, I relapsed.  I was than treated with RCHOP and have been NED for 8 years.

I am happy you were able to get in to see your Oncologist.  In my opinion that is the doctor to check your glands as you are still in treatment.  Maintenance is treatment.  Please let us know how the appointment goes.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3156
Joined: May 2012

I wish the reason was different, but I am glad to see you again Peppermint, after a long absence.  You may recall that my mother-in-law, Patricia, has the nickname 'Peppermint Patty.'

You had a CT in mid-February, all negative, and then a touch exam about a month ago, also negative.  Recall that Follicular is very indolent, slow-moving.  This makes me suspect that infection may indeed be the issue.  These swollen glands do not always hurt or show other symptoms. About a year after I got in to full remission, I felt large, symmetrical, swollen areas around mid-neck.  This frightened me pretty badly, and I went in to see the oncologist.  He told me "those are glands, not lymph nodes."  I do not recall specifically what type of glands, but the relief was huge.  Having five Board Certifications, I knew that he knew what he was touching.....   I have no idea if your situation is similiar, but it seems like a relevant observation for now.

But it is good to get this investigated.  It is of course possible to be recurrent Follicular, and also within the realm of possibility to be a new strain of NHL.  And yes, relapse on maintenance is totally possible also, in which case it is usually referred to as refactory disease.  Other doctors use the term refractory only for first-line care that never achieves full remission.

But for now let's hope it is simply an infection.

Please share what you learn, and I hope for the best,

max

ShadyGuy
Posts: 350
Joined: Jan 2017

FNHL can transform to a more aggressive form of lymphoma. Happens all the time. Check it out. Even indolent FNHL is of more concern than a “nuisance mother in law”. It kills a lot of people every year. Its not to be taken as a joke. Take it seriously. 

PeprmntPat55's picture
PeprmntPat55
Posts: 50
Joined: Aug 2016

Thank you all for your comments and input. It's greatly appreciated and makes me realize that yes, it is important for my onco to see me and exam. Max, I do remember you! I've been trying to steer clear of making comments, but I do come back and check in on everyone.  There's an odd comfort in that.

I will let you all know how I make out.
Have a safe and happy Memorial Day Weekend!

PeprmntPat55's picture
PeprmntPat55
Posts: 50
Joined: Aug 2016

My onco examined me thoroughly today and he doesn't feel what I feel. That makes me feel a little bit crazy but I'm going to keep an eye on it. Guess that's good news. Oddly enough, I picked up a nasty virus or the flu over the weekend. It came on pretty fast and strong, so it looks like I'm off work the rest of the week.  

I thank you al for your input and concerns. You are greatly appreciated.  

Pat

ShadyGuy
Posts: 350
Joined: Jan 2017

soon!

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