Is Follicular Lymphoma Curable? As in - GONE FOREVER?

Hi,

Depends on what stage it was found, stage 1 most doctors will say yes, stage 2 a few less doctors will say yes, stage 3 to 4 all dr's will say no. FNHL sticks around for along in your system and pops up every now and then. Sometimes it will need treatment other times it will not.

I was diagnosed last year in June with stage 3 (either side of the diaphragm and a small trace in my bone morrow), went through R-CVP (low dose chemo and Retuximab). I carried on working through out and just carried on with life. It's a weird thing having FNHL you'll told it's cancer but really it just sits there as shadow that you something’s spot out the corner of you eye and it reminds you of what you have, you shrug your shoulders (in a very French way!) and just sort of get on with. I will probably get me at some point but as my Dr said, 'Rob, as far as I'm concerned you're in remission, sort of. Stop worrying, I'll be seeing you for a very long time to come!'

If your husband does well on his treatment then he and you'll be fine. Yes it will probably come back at some point and they will treat it again. 

Talk it through with your Dr and Specialist nurse - don't use the internet, I did and you'll start to note that most of it is out of date with FNHL with regards to info.

I'm 39 (the big 40 in June!!) I have a wife and 2 fabo kids, yes its crap but take each day at a time, relax and breathe. It sounds odd but once you have other details on your husband’s treatment plan post it up here, I’ll sure a number of us will be able to walk you through it.

Take care,

Rob. 

Thank you Rob for your encouraging words!  My hubby is 44 yrs old.  His is stage 2.  He has completed R-CVP and reacted well to that treatment.  He just had a PET scan to see what the next step is.  

We are past the initial shock, but now wonder if this diagnoses will be with us for the rest of our lives.  I think it is the "not-knowing" that is bothering me the most.  How do you know if it comes back?  Do you have to have a scan every 6 months?, Will he be on maintence drugs for the rest of his life?, etc. etc.  

Rob, you seem to have a very great attitude about all this.  I hope one day, my hubby and I can get there.  :-)  We are trying.  Can I ask how old your children are?  Mine are 15, 11, and 7.  Have you told your children?  If you have- how did you tell them?  

Thanks for listening, 

Lisa

BTW- Happy early Birthday!

Hello there Lisa and thank you,

Easy bits first, I have 2 girls, 9 and 11. We haven't told them what I have, just I have an illness that comes and goes and I have to take strong medicine that makes me a little odd and grumpy, which to them meant no change. We were lucky I didn't lose much hair so they didn't notice. We decided that if the eldest asks more questions we'd let her know but only enough detail to reassure her everything will be okay. We were told there are many options to treatment and it depended on how I reacted to the first option which was R-CVP because I was doing so well we didn't push it any further.

My treatment plan was 6 rounds of R-CVP, I had 1 scan to check the staging at the beginning. I then had a scan after 4 doses. I was worried that it wasn't having an effect as I was in a lot of pain most days but not letting on. Turns out the pain was due to the rapid shrinkage of the tumours and my body coming back to some sort of normal. As a reward my haematologist changed my plan to 8 doses instead of 6. They wouldn't give me a final scan after the treatment until I'd finished the rituximab maintence after 2 years too sweep up any leftovers, which kind of leaves me not knowing where I'm at but each day I feel more myself so I take that as a positive.

It is very hard; it does change your outlook in life. The best thing we did was only talk about what was going on for half an hour each day, 15 minutes each. It really helped, after a while we talked about it less and less. Now it's only once a week if that. 

Talk with your Dr, they will help you, one other thing, I'm not sure what your husband’s symptoms were before diagnoses but the come down off the treatment is not good and sometimes feel like it's coming back and that can last for about 4 months afterwards. It's a desises that just keeps giving!! :)

Please keep the questions coming if it helps.

Rob.

Hi mate  reading this is good for all of us  true words I' had my 1st treatment Wednesday it's a weird feeling  like I got a new lease of life to be honest I was very apprehensive about treatment but my team  were amazing now the  1st is over  I'm looking forward to the out come  being  as good as it can  cheers  clecker 

Hi mate  reading this is good for all of us  true words I' had my 1st treatment Wednesday it's a weird feeling  like I got a new lease of life to be honest I was very apprehensive about treatment but my team  were amazing now the  1st is over  I'm looking forward to the out come  being  as good as it can  cheers  clecker 

I have grade 2stage 2 follicular lymphoma had good response to treatment.Al through my treatment I kept on working as a bricklayer had no fatigue.The doctors said I have a strong healthy body so I just got on with my life didn’t change anything in my day to day running in fact I started working 7days a week .I have been in remission for 2years didn’t have any maintenance treatment because of the virus I feel very well and very positive.The doctors said people don’t normally go in full remission with this cancer but I did I don’t know if I’m a one of or is it because I never think about it at all 

Hi , you will notice that this thread is now a few years old but some of the folks may still be around.

I have a different low grade NHL diagnosed in 1999 that is also classed as incurable and back at diagnosis I was also told I would never be in remission but that was all changed in Sep 2016 when I went into remission - there is always hope.

Hi, would you mind saying what sort of treatment you had, Gary? I have grade 2 FL recently diagnosed and radiotherapy has been planned starting in a couple of weeks. What puzzles me is that when I look at forums etc, it seems that its usually chemo plus radio for grade 2 and I wasnt given chemo as an option.

Hi Lizzyn all I can say is that the Doctors now how to best treat the Cancer I was told that I’m having 6 sessions of cemo and then my radiotherapy.I had stage2 grade2 they found a lump I’n my neck I was so worried as most probably you are .They also told me that there giving me a very strong dose of cemo because I have a very strong body and I handle the cemo after my session my last scan showed no trace of cancer anymore so I didn’t need radiotherapy I’m sorry that I can’t be any more helpful to you but they now what there doing stay positive stay strong you will be ok and one thing you don’t want to do is go on any forums they will twist your thoughts and make you worry .I had my treatment 2years ago with no maintenance treatment rather I’m fit strong never missed one day of work and carried on with my life as normal.Take care my darling and all the best message me again if you want