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FNHL

However.
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My hubby was diagnosed 2015 Aug FNHL with 8 section of RCVP. But it was transformed to DLBCL after three month.R-Chop and SCT.  It fail after 6 month DLBCL returned. Then go for Trial. DLBCL go away but FNHL back again after 18  months. On other trial RIVA trial 6 section. It have done 5 section. But still Lymphoma under arm are there. Anyone have same problem or what they do? Any advice pls

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    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

  • Offline in reply to Moderator Lucie

    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

  • Offline in reply to EmilyS

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

  • Offline in reply to EmilyS

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

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