Follicular Lymphoma Do Treatment Or No?

Hello,  I was also diagnosed with follicular and diffuse nhl.  I was told in April and was in denial till September.  I started Chemo this Oct, im currently on my 3rd treatment.  I was lucky that after waiting for so long it didn't get worse.  Did they tell you what stage?  and if you dont mind me asking how did you find out? please feel free to ask me anything you would like to know ill be glad to help. 

Thanks

BDay Girl

I'm 67, and in Nov 06, had a PET scan which "Lit Up" a spot in Left Groin.  Radiologist said 95% of time it was Cancer. With 4 Oncologist Visits, 2 Surgeon visits, A "Fine Needle Biopsy", Surgery where they opened me up and removed a Lymph Node, At the end of a 8 Month period they determined it was Follicular Lymphoma.

In July they did another PET Scan, and found "some" enlargment of the Lymph nodes and another area in my neck "Lit Up". The options they described was "Watch and Wait" until symptons occured, R-CVP, R-CHOP, and a few other regimens.  Made an appointment to see the Onc about 6 Weeks later.

Had a second opinopn from another Onc who generally agreed with the first Onc.  He said to decide where I want treatment and if at 2nd Onc, he would do it. 

Bottom line, it is now Dec 07 and I have been on a "Self Defined" Watch and Wait since the difference of size as shown in the 2 PET Scans were quite small.  I have had absolutely NO symptons on any kind. Sometime in February, I expect to go back to the Onc, schedule another PET Scan, and start an Official Watch and Wait if again the Nodes Enlargment is minimal. 

               cancer012840

I failed to include answers to your questions.

Message Boards noted it COULD be years before Follicular Lymphoma needed treatment. However it may have been in your body for years before you found it too. 

The Onc said since it was probably Stage 2, possibly Stage 3, Radiation would not be recommended since multiple areas would have to be radiated, and no one knows where the little critters will strike next.  Radiation is good for a limited area in the body.

The minimalistic Treatment is R (Rituximab) over multiple weeks. Multiple regimens can be used as long as R works.

That's why he recommended R-CVP. These drugs are the same as R-CHOP, with the addition of a very nasty drug which affects the heart in undesirable ways. Each drug "kills" cancer cells at different stages of cell growth, which is why he recommended the multiple treatment (R-CVP) instead of just R by itself. 

He said that "generally" you could only get these drugs once, and then have to move on to other regimens of combinations of drugs. 

So that's why I decided to Watch & Wait as long as I can, because of the fear (real or perceived) that by selecting these other Regimens, I would "Use Up" options I might need later. 

As I noted before if the Lymph Nodes have grown larger than I expect, I will have to choose a regimen of one (R) or more Drugs.

    I hope all is well with you.

              cancer012840 

Hi,

I know your post was in Dec. 2007.  I was just wondering if you had any treatments yet, or are you still doing the watch n wait?  I too have Follicular NHL discovered originally in my groin.  Have had only Rituxan Therapy (well tolerated), however years later have had a reoccurrance, now in multiple lymph nodes and in both of my legs (groin).  Haven't gone to next step yet. Weighing in my options first. This is slow growing disease but a bugger to treat, as I'm finding out.  Just wanted to follow up with you to see what options you have chose since we have some similiarities.  Thanks for you reply, and stay strong,