Rituxan maintenance schedule for follicular lymphoma

I started my Rituxan maintenance last year after 6 cycles of R-Chop and 3 of RICE. I go in every 8 weeks and call it my Spa day. I take the day off from work and I am usually at the oncology clinic for 5 hours. I bring some snacks with too. Stuff like yougurt, V8, cheese nips, apple slice, etc. While there I have the TV on, read a book and nibble on whatever I bring. My goal is to relax however the Benedryl gives me restless leg problems for 10 - 20 mins. Because Rituxan lowers the heart rate i don't take my blood pressure meds that day. Usually when I get home I am ready for a nap, even if I napped a little during the treatment.

As for blood counts, they haven't been normal for over a year. Close but just below the lower end of the "ok" range. I have asked my Onc Dr about it and she said it can take 2 years or more for them to get into the normal range and for some people it never does. I don't let it worry me. Plus lately work has kept me so busy I have little time to think about such things. 

For various reasons I will not go into my Dr. and I decided to do Rituxan single agent therapy for my Stage IV FNHL with extensive bone marrow involvement. Theory was if it didn't respond well we could always change to RCHOP. I did weekly infusions for 8 weeks (8 infusions in 8 consecutive weeks) followed by maintenance of 1 infusion every 8 weeks for about 2.5 years. 26 total. It has worked pretty well so far. In remission for 4 years with 2 years without Rituxan. Beats the hell out of chemo but is definitely not a cure. It is almost certain to return if something else doesn't get me first.

Very broadly in the context of today's treatments, it can said that low-grade ("indolent") disease relapses more often than intermediate- or high-grade disease, and that, for intermediate- and high-grade disease, those who were diagnosed in the advanced stages of illness are more likely to relapse than those diagnosed in early stages. This also appears from statistical data to be true for indolent Hodgkins lymphoma too.

Certain subtypes of NHL respond very well to treatment and are less likely to relapse than others. For intermediate- and high-grade disease, the longer you remain in remission, the less likely you are to relapse. For low-grade stage III or IV  FNHL treated with current protocols available, both long-term stable disease and remission for five or more years is very likely to be followed by relapse or disease progression. The exception is low-grade disease treated with bone marrow transplant. This is why I say always go for the least harsh treatment, as that does not affect the probablity of relapse once you get into remission. From what I can tell, remission achieved by Rituxan only is no more likely in the long term to relapse than RCHOP remissions. FNHL is a lifetime battle. With current treatments management is the goal until a cure is found.

ali_m said:

Rituxan maintenance schedule for follicular lymphoma

I was diagnosed fnhl April 2016, garde 1 stage 4 bone marrow involvement, bulky disease. No symptoms other than the small lump I found in my breast. June 2016 Started 6 cycles Bendabustine Rituximab Day 1, Benda Day 2. Now on 2 years Rituximab maintenance every 3 months. I also had a reaction to first Rituximab treatment. So, I get lots of benadryl, steroids & tylenol, making the infusion day longer. But no apparent side effects. Very tolerable. I have worked throughout. Hair thinned from chemo, but not noticeably. My greatest challenge right now is psychological - worrying that every little symptom is a relapse. Trying to relax and enjoy life...

My chemo nurse told me she had received training for Rituxan injections - could be offered after first cycle. Much faster and easier than 1/2 day in th chair. Not sure I'd qualify, since I had a reaction. But something you may want to ask about. 

I had six R-CHOP from March to June 2016 and have also had a reaction to the first Rituximab infusion. That initial reaction has not prevented my getting  sub-cutaneous Rituximab maintenance (since August 2016). I get the same premedication as you do: Benadryl, prednisone and paracetamol. The injection does make the whole process a lot faster: I take my meds before leaving home, the nurse injects me in my belly fat, monitors me for the following thirty minutes, and I am free to go as soon as the hematologist has come around to see me. No adverse effects whatsoever beyond the bruising at the injection site.

As regards anxiety about relapse, I feel that just about everyone has it... Gentle yoga and meditation help deal with that, but there are still difficult times - such as periodic imaging, especially when they leave you waiting forever before letting you know that you are still in remission.

PBL

PBL said:

Sub-Q maintenance Rituximab after reaction at first infusion

I had six R-CHOP from March to June 2016 and have also had a reaction to the first Rituximab infusion. That initial reaction has not prevented my getting  sub-cutaneous Rituximab maintenance (since August 2016). I get the same premedication as you do: Benadryl, prednisone and paracetamol. The injection does make the whole process a lot faster: I take my meds before leaving home, the nurse injects me in my belly fat, monitors me for the following thirty minutes, and I am free to go as soon as the hematologist has come around to see me. No adverse effects whatsoever beyond the bruising at the injection site.

As regards anxiety about relapse, I feel that just about everyone has it... Gentle yoga and meditation help deal with that, but there are still difficult times - such as periodic imaging, especially when they leave you waiting forever before letting you know that you are still in remission.

PBL

Interesting! I have my 3rd Rituxan maintenance next week. I will ask my onc next check in if this is an option for me, as I still have 5 more.

Yes - the waiting is the worst. Some of my most stressful times have been in the consult room waiting for my onc to come with test results. Unfortunately, she's really busy, so the wait can be quite long... I am trying to take more time for meditation and yoga. It defintely helps and I prefer it to medication.

Ali

Max Former Hodgkins Stage 3 said:

Ritux

ShadyGuy,

Someone here mentioned Rituxan via shot about a year ago,  and I had never heard of it at that time. I believe it was first approved in Australia.  US approval was still pending then I believe.  

I also think that it is restricted in application, perhaps not for every patient. And then there are the insuracnce companies.....

 

max

i would imagine it is much less expensive than infusions. Perhaps someday it can be injected directly into tumors, but that is just speculation. I think that a full strength dose of 875 mg on my first treatment may have killed me. Even with it being watered down with 5 liters of saline I had a severe reaction.

I completed R-Chopr for B-cell follicular non-hodgkins lymphoma on 1/19/2017 with few issues. My scan in March was clear. My oncologist at Memorial Sloan Kettering wanted me to do the maintenance and suggested every 2 months. I read all of the research and read there was no difference in remission rates between the 2 months and the 3 months. The doctor admitted she suggested every 2 months because that was the usual protocol, but agreed to do it every 3 months. So, it is every 3 months for me. So far, no problems.