Hello However. 

I just wanted to welcome you to our forum and I hope you will meet others here who have been diagnosed with FNHL or DLBCL and been on the RIVA trial. 

[@EmilyS]‍  would be a great person for you to connect with - like your husband, her FNHL transformed into DLBCL and she also had to have R-CHOP. So hopefully she will be along and share her experience with you and I also hope you will get to chat to others here who have had a similar experience while on the RIVA trial. 

Our nurses are also only a free phone call away if you wanted to talk things through with them. You can reach them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi and thanks for tagging me Lucie.

Hi @however. Sorry to hear about everything you are going through.

Yes, I was diagnosed with Grade 1 stage 3 FNHL which had transformed into DLBCL. It was mainly in my abdomen but also right tonsil. I underwent 6 rounds of R-CHOP, which I managed pretty well and was put into 'remission' (or remission of the transformed cancer anyway). 

Since then I've had a bit of a rocky road out of treatment but am finally, 1 year out, beginning to feel 'normal' again - with a few ups and downs. 

I fully expect my FNHL to re-surface again at some point, since it's not curable, but they do seem to have knocked out the tranformed high grade lymphoma.

I hope that gives you some hope - hang in there!

Emily

Thanks Emily. You are still behind. Very lucky. My hubby is much advance step than you.  Wishing you all the best.

Hi emily, just wanted an update. How are you doing now?