Relapsed Follicular Non Hodgkins Lymphoma

I was diagnosed in 2009 with Follicular Lymphoma and had 6 cycles of RCHOP which got me into complete remission for 5 years. I wasn’t offered Rituximab maintenance afterwards as not funded at that time in my area. In July 2014 a PET scan showed activity again but I was put on watch and wait. Now my lymphoma is widespread again and affecting my lungs which are filling with fluid. Last week I was put on steroids to help my breathing and today I start Bendamustine chemotherapy. Next month it will be B&R for 5 more cycles and then 2 years Rituximab maitenance. Has anyone any experience with this treatment? I understand it is less toxic than RCHOP. Thank you in anticipation of replies.

Hi Sorry to hear of your relapse. I was diagnosed in ICT 2015 with Fnhl stage IV (bulky) and under went RBenda X6 which finished at the end of March. I start R maintenance next week.
I coped well with RBenda, and only felt ill/really tired for a few days after treatment. It also got easier after each treatment too. I didn’t loose my hair, which was also a bonus too. I still tire easily but think I have tried to do too much too soon.
Good Luck with the treatment and really hope the side effects are minimal and the treatment is successful.
Debbie

Hi Debbie,
Thank you for your reply and good wishes. Ive had my first two doses of RBenda this week. Its not as bad as my first experience with RCHOP 7 years ago and it will be a bonus if i don’t lose my hair again. Good luck with your R maintenance and hope you get a complete response and many years of remission.
King Regard, Sue

Hi Sue
I had 4 rounds of BR from Jan to March this year prior to a stem cell transplant following a very quick relapse from Follicular Lymphoma. I say to people that it was kind to me! No real problems other than low potassium levels in my blood. And no hair loss which is a bonus (short lived for me of course due to stem cell transplant!)
Kind regards
Hope

Hi Hope,
Thank you for your reply. Its nice to know that BR is well tolerated and fingers crossed I won’t lose my hair. My first 2 days of BR last week went ok - although the sickness was pretty bad for 4 days. Don’t think the ondansetron suits me as it didn’t work with RCHOP 6 years ago. Am going to ask for apprepitant for my next round.
Hope you’re recovering after your SCT and its very successful for you.
Kind regards, Sue

I had no sickness until last round, I had metoclopramide at home to take when required and that worked for me, however your sickness sounds more severe than I experienced
Regards
Hope

I was diagnosed with Follicular Sept 2015 grade 3b…did 4 rounds of Rituxin in January 2016…scans have been showing clear…but I have began to have night sweats again and I am concerned…my oncologist says he does not think my night sweats are due to my lymphoma since scans are clear and that night sweats only occur with advanced stages of cancer…I am so afraid of it returning and I have read that night sweats can be a beginning sign of blood cancers…anyone with insight into this please respond…I am wondering how many oncologist really know much about blood cancers…

Hi the are night sweats which can happen for many reasons, then the are lymphoma induced drenching sweats where you have to change the bedding and any clothing, so is it the drenching sweats you are experiencing? if not its likely to be for some other reason.
Also with follicular unless it has transformed you can go several months between check ups while they observe what is happening as the disease is known to wax and wane. Thats why many are told its watch and wait and not straight into treatment (in a very general way)