2 years maintenance rituximab

Hi Ruby, due to start same regime in June, currently finished cycle 5 of 8 R-CHOP, followed 8 weeks after by PET scan then 12 cycles of injections every 8 weeks. Good luck

Hi Ruby, I am dropping in past from our general NHL Forum (link). With over 60 types of NHL we can't have a forum for every type of NHL so a lot of folks hang out on the general forum.

You will meet up with lots of folks who have been on or are going through the same treatment as yourself.

Come over and have a look and see the support that is available.

Thanks , will do 

KR ruby 

Hello Ruby

I started Rituximab in December, having finished Rchop in September.  I had an 'unusual' reaction in that my white blood cell count dropped, so when I went to have my second injection I was sent away with Filagrastim, to inject myself to boost the white cells.  Went back in February and all OK to go ahead.  If it happens again they say I might not be able to continue with the immunotherapy, which would upset me I think, because it is clearly the way forward.

Last week in the middle of the night I decided the funny feeling in my feet was not going to go away and have discovered I have peripheral neuropathy, i.e. dead toes which is an 'unusual' reaction/side effect to the chemo 6 months ago!  So basically I have already had 2 unusuals in 2 months.  I feel OK, a bit tired and also a bit fed up at the moment, but I think it is a matter of getting my head round these unexpected happenings.  I have found reading people's replies to my questions really helpful and a morale booster.  So thank you everyone.

Lozzer

Hello Ruby

Sorry I meant to leave you with a good luck. for your treatment.  None of what has happened to me in the past 2 months is very drastic, but I find stuff easier to manage if I am forewarned, hence the detail.

Lozzer

I have duodenal type follicular lymphoma. I started on rituximab in October 2015 and finished in July 2017. My infusions went well.

I had a mild reaction during the first infusion.  They treated that with famotidine. The other infusions were uneventful.

The diphenhydramine they gave me put me to sleep. I napped through the infusions. I miss the naps!

The predisone made me a little edgy for a couple of days after treatment.

I was usually tired the day after the treatments.

I recommend keeping hydrated prior to the infusion. If you are dehydrated, it is harder for them to find a good vein.

The infusions had some good side effects.  The ringing in my left ear and the aching in my big toes would go away for a couple of weeks after treatment.

Hi Ruby I’m also due to start 2 yr maintenance rituximab, I completed 6 rounds of bendamustine & rituximab in December for FNHL. My first treatment was supposed to be yesterday but due to a mild cough & ear infection it has been rescheduled for 2 weeks. My consultant advised that this delay would not cause any issues as my last scan was clear. She advised I may feel fatigued for a couple of days & also still at risk of infections but other than that to expect it to be fairly manageable. 

I wish you well with your treatment , i will post an update once I start my treatment

X

Hi Ruby, I had my first maintenance injection last week, slight sting as it was done but otherwise OK.  Still feel tired and was told immune system will be very low whilst on this treatment . The maintenance treatment is a doddle compared to chemo . Wish you all the best with your treatment .

Hi ozzadiah thats good to hear , thank you for sharing your experience. I wish u well x

Hi Ruby

My partner started Rituximab maintenance after 6 rounds of R-CHOP which started in July 2016 and ended December - she is on the 9th of 12 cycles now, given 8 weekly.

Her cycles are given subcutaneously, much nicer than the Hickman line she needed for the chemo!   She has no side effects from the ritux, but the steroids lead to sleep disturbance for a day or two (nothing like the R-CHOP ones though, what a nightmare they were!!)

She was stage 4 with widespread abdominal involvement but PET showed complete remission after 6 cycles.  she is so much better now - the Ritux cycles are only an hour or two in the chemo unit, and apart from the sleep issue, she has not had a problem.  She also developed peripheral neuropathy from the chemo which is not that unusual, but it has largely resolved now.  And on one cycle, there was a swelling / reaction around the injection site for a week or so. 

Take care and best of luck - the ritux maintenance is a breeze compared to the chemo cycles and it is very reassuring.