My FNHL update

[Shar0n]

Had my checkup yesterday and oncologist says my"cancer is stable". Back in six months. Six more months to work on my health and hopefully one day, achieve remission. Wishing you all the same and more

[jmcobb50]

I have my 6 month visit and CT on Dec 15th. If things are stable he may go to 1 year CTs! Glad I am stable but still nervous about receiving this diagnosis Aug 2015!

[pet1 in reply to jmcobb50]

I am like you I know it is still scary but I think we will always feel a bit like this but we have got this far and we can do it .Wishing you all the best x

[Shar0n Volunteer in reply to jmcobb50]

Hi jmcobb50 I was diagnosed Sept 2014. I have a great oncologist but still struggle with facing the checkups. Good luck with yours - look forward to hearing how you get on

[pet1]

So glad to hear this I am in the same position as you still scary but hey ho onwards and upwards wishing you all the very best x

[Shar0n Volunteer in reply to pet1]

Hi pet1, thanks for your good wishes - this NHL is certainly character building :-). As you say - onwards and upwards!

[wmay13241]

Checkups ARE scary - you never know when your oncologist will drop the 'progression bomb' on you.

In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of November 30, 2017 she has been in complete remission for 21 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission. There is more information on CAR-T for fNHL patients and people considering CAR-T at fnhlben.wordpress.com/

Other non-Hodgkin lymphoma sites I visit often are:

lymphobob.blogspot.com/

lymphomation.org/#what-is-new

lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)

lls.org/

[Shar0n Volunteer in reply to wmay13241]

Very encouraging to hear that the CAR-T is working for your wife. When it works it seems to be very effective. Thanks for the useful links - there's always something more to learn about this disease and information is very empowering. Your wife surely deserves remission after all the treatment she has been through - hope you will keep us updated on her progress. Thanks again.

[Judyhoneycomb]

Thank you for your update and may you continue your journey back to good health..