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Rituxan maintenance schedule for follicular lymphoma

acs123
Posts: 12
Joined: Mar 2017

I feel that I am at a decision point in my treatment and would appreciate some input from this discussion board to help me to clarify my position.

pleae would you let me know about the Rituxan maintenance schedule that you are on for follicular lymphoma and for how long you will be on maintenance.

I have been on a 2 monthly schedule.  With my initial treatment plus the follow up maintenance I have received a total of 10 Rituxans.  My IgG and gamma are low.  Have any of you been in this situation and what maintenance changes, if any, were made?

I am also particularly interested to hear from anyone who is on a 3-monthly Rituxan maintenance schedule. 

Thanks very much - these discussion boards are so supportive and helpful.

Anonymous user (not verified)

I was diagnosed with follicular lymphoma, underwent 3 cycles of  R CHOP before being switched to O CHOP and now am on maintenance with the obinutuzumab every two months for two years. How low are your levels? What does your doctor say about your levels? Did you mean you are receiving maintenance therapy twice a month or once every two months?

acs123
Posts: 12
Joined: Mar 2017

Thanks for your response, Willowmarie.  I am on the same schedule as you are - every 2 months for 2 years.  I am interested that you are on obinutuzumab for your maintenance.  Are you experiencing any side effects or is it a manageable maintenance?  I'm sure that it is far easier than the R CHOP and O CHOP.  That must have been difficult for you.

Anonymous user (not verified)

I have not experienced any side effects yet that I know of, though I have only had one maintenance session thus far. I did have an infusion reaction with the first dose of rituxan, but did not have an infusion reaction with the obinutuzumab. Also, my heart would pound during the rituxan infusion but not with the obinutuzumab. I was pretty nervous when I was switched to obinutuzumab as it is fairly new, but so far so good and the specialist seems to think obinutuzumab provides a better progression free survival rate...we'll see. But yes, the maintenance is far far easier than the rchop/ochop, but it put me into remission, so I can't complain...too much!

ali_m
Posts: 3
Joined: Mar 2017

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. 

PBL
Posts: 182
Joined: Jul 2016

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

ali_m
Posts: 3
Joined: Mar 2017

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

ShadyGuy
Posts: 386
Joined: Jan 2017

i did not even know Rituxan was given by injections! I learn something new every day on here. All mine was given by infusions in my arms (no port). i had a severe reaction on 1st infusion which stretched it out to over 10 hours. Others took 3-4 hours and were generally pretty easy. I had some uncomfortable side effects which went away after the treatments stopped. Good luck!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3275
Joined: May 2012

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

ShadyGuy
Posts: 386
Joined: Jan 2017

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.

PBL
Posts: 182
Joined: Jul 2016

I imagine subcutaneous injection is indeed a lot less costly, if only on account of the time saved by the patient, the nurses and the pharmacy.

I don't know if there would be any advantage in injecting tumors, as these only seem to me to be the visible tip of the lymphoma iceberg...

As I understand it, the subcutaneous form is a fixed-dose, ready-to-use syringe.

For obvious safety reasons - considering the relatively high rate and potential severity of reactions at first infusion, Rituximab will always be administered intravenously at first.

The sub-Q form has already been in use in several European countries for a few years.

Herebelow you will find the links to a very complete FDA Powerpoint presentation and to the Roche announcement regarding FDA approval for the sub-Q form.

[https://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/OncologicDrugsAdvisoryCommittee/UCM551240.pdf]

[http://www.roche.com/media/store/releases/med-cor-2017-06-23d.htm]

PBL

 

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

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. 

 

PeprmntPat55's picture
PeprmntPat55
Posts: 56
Joined: Aug 2016

Hello ACS123.  

I was dx with NHFL last August.  Started treatment in Sept 2016, Rituxan/Bendamustine.  Day 1, Rituxan/Bendamustine. Day 2, Bendamustine only every 8 weeks.  Last treatment was Jan 24th, 2017.  ("Obtained" remission end of December)Started 2 years maintenance in May. Rituxan only, every three months.  I have two maintenance treatments under my belt.  

This Thursday, Aug 3rd will be a restaging PET Scan.  I am nervous as it appears that some of the lymph nodes in my neck have enlarged but am trying not to focus on that and be positive instead.    I hope it goes well for you.  I tolerated treatments very well.   Lost most of my hair prior to diagnosis, then lost a little more during treatment but not all.   I do take Biotin supplements and that seems to help.  I turned 61 in December last year.  Oh, and I have been able to maintain my full time job (37.5 hrs per week) with the state throughout my treatment.  I did have to borrow some anticipate leave which left me in the negative but I am so very thankful for my job and benefits. Now I am in the positive with my leave balance.   

ShadyGuy
Posts: 386
Joined: Jan 2017

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.

eslmom1
Posts: 2
Joined: Aug 2017

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.

ShadyGuy
Posts: 386
Joined: Jan 2017

Did you mean no difference in relapse rates? 

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