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Maintenance Tx: Rituxan

lacorota
Posts: 2
Joined: Aug 2016

I completed induction Tx for indolent, NHL 3B, in December, 2015. My last scan, a month ago, was clean. The suggested maintenance Tx following induction was continuing with Rituxan only, 1 X every 2 months. But I had to quit, after 2 Tx, because the fatigue, mostly, was life-changing, epic-class.

The best analogy I could offer was, I'd wake up each day felling okay, and have the will to go about a day completing various garden-variety tasks commensurate with a normal household. Usually, within an hour, or two, of getting groceries, a short walk, or perhaps house cleaning, the fatigue was precipitous, and would wash over me within minutes. Pre-NHL, I'd been very active with long distance cycling, hiking, and swimming.

I told my oncologist that the fatigue was sudden, and it felt similar to what I felt like following a 100 mile bike ride at a decent pace. He seemed puzzled every time I complained, and dismissed my complaints with a tone arrogance. His typical response was "I've never had any of my patients complain of either fatigue, or joint pain from maintenance Rituxan Tx." My perception was I must be mistaken, then. So I began systematically eliminating every medication I'd ever been prescribed to see which might be the source. The result after deleting one-after-another medication from my arsenal, the condition continued  with only Rituxan.

My oncologist kept telling me this was something my PCP needed to address. After galleries of blood work, one test determined I had the profile for hypogammaglobulinemia, a condition common to Rituxan. As well, my PCP's data sources cited up to 30% of those receiving post-induction, maintenance  Rituxan reported "extreme fatigue." After searching for, reviewing, and digesting as many credible, peer-reviewed, articles on Rixan as I could, I decided the empirical data at minimum suggests that overall survival wasn't significantly improved, and it was relatively ambiguous as to improvements in progression-free survival. 

So I was at one of those many informed, decision-making crossroads cancer patients and  survivors frequently come upon. Id hoped, perhaps, that there might be something to treat the fatigue relatively c/t Rituxan Tx. But fatigue treatment  wasn't an option without first acknowledging the possibility by the oncologist. 

So I concluded my maintenance Rituxan Tx following 2 Tx sessions. I had to weigh quality of life vs. just lying in bed fatigued most of a day, with a beating heart, and pumping lungs. Naturally, making such decisions and assuming the risks leaves one with the uncertainties. Are those cells in there doing push-ups, waiting for the first opportunity to multiply again? 

So I come here to see if I'm the first and only person who ever had issues with maintenance Rituxan Tx and quit? I decided to change my cancer-care venue closer to home, and get a second opinion. 

Has anyone quit Rituxan for similar reasons, and did their doctor at least acknowledge the possibility of fatigue? If so, what is the gold-standard for treating über-fatigue if Im hopefully not dismissed by my second-opinion Doctor?

 

Phil

Anonymous user (not verified)

i went through over 20 Rituxan infusions as a Rituxan mono therapy treatment for stage IV FNHL. I had 8 weekly infusions followed by once every 8 week infusions for 30 months. I had joint pain which improved dramatically when the treatment was over. I had fatigue but I had that before treatment and after. Rituxan worked very well for me. It is not without side effects in some people but is the mildest therapy available. You have a dangerous life threatening disease. Don't expect things to return totally to the way they were before. Those days are over - accept it. Expect the treatments to have side effects like maybe living a lot longer than you would without it. We all must make our own decisions. Your Dr. obviously thought it would benefit you or he would not have prescribed it. If you believe otherwise, get a second opinion. My advice would be to stop whining and continue the maintenance. Thats what I did. Well maybe I whined a little but never considered stopping the Rituxan. Good luck!

Max Former Hodg...
Posts: 3689
Joined: May 2012

Phil,

What was your induction treatment ? (which drugs). The term by itself does not specify.

I did six months of Rituxan, one high-dose application every two weeks (12 doses).  But the Rituxan was not alone: it was with ABVD as well, which makes it impossible to ferret out exactly which drugs had which effects.   All of my side-effects were relatively common, recognized for one or more of the drugs.  I lost my sense of taste, all hair, the ability to feel my hands and feet (neuropathy).  I developed severe breathing problems, lung damage, chemo fog (significant loss of short-term memory and the ability to concentrate).  My nails turned black and grainy.  I had a condition known as Flu Like Syndrom, in which chemo patients feel continuously as if they have a severe case of the flu, with muscle pain.  

The diesease had already rendered me unable to stay awake long; I required ten or more hours sleep to function at all prior to treatment beginning (fatigue, of course, is the one almost universal symptom of lymphoma). A month or less into treatment, I was sleeping 15 or more hours per day, had trouble walking to the car for my wife to drive me to appointments.

All of these have cleared, except the neuropathy, a bit of the chemo fog, and fatigue. I work full-time today (six years later) and do the usual 'husband stuff' all weekend, every weekend, but I need naps.  I am no superman, no cancer hero.  I did what I had to do.  Many, many writers here have endured ten times what I went through -- this is no exaggeration at all.

As GHK noted: Rituxan is no fun, although I do not myself know what Rituxan alone feels like.  A few people have allergic reactions and serious episodes with it, but such are very rare, and are usually handled with Benadryl.  But it is by virtually all estimates the least toxic anti-cancer drug that exists, certainly among the lymphoma agents.

Personally, I find your attitude incomprehensible.  It's just me: I cannot begin to fathom where you are coming from.   I would begin twenty chemo agents tomorrow if I relapsed, and knew that they were likely to eliminate the disease.

You are articulate, obviously a smart guy, and as GKH noted, we are all free agents and make our own decisions. The way it should be.

I had a second cancer two years ago: Stage II prostate. I mention this only to suggest that I do know that there are hard choices out there that we must make. I have two slogans that occured to me as a result of my cancer journey, along with the hundreds of people whom I have met here, at the Prostate Board, and at Caringbridge, supporting friends who were dying in hospices:

"I'd rather have side-effects than have cancer," and  "What is the 'quality of life' if you're dead?"

Seeking a second opinion is never a bad idea.   Bless whatever decision you choose,

max

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OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Phil,

I too had a problem with fatigue.  My worst days I recall waking up exhausted, driving a car was a challenge.  I would roll down the windows in the car on cold December days and blare the music.  Some rare days I had my husband pick my children up from school because I just couldn't do it.  If you knew me, you would understand how bad it would have to be to get to that level.

I was diagnosed in 2014.  I only did rituxan for one month, every week for six hours.  My body could not take speeding up the infusion rate.  My doctor from Dana Farber Cancer Institue in Boston (he also teaches at Havard Medical School) did not recommend the standard two year maintenance.  He said there was not any evidence for any benefit for this protocol.  For maintenance he recommended four treatments every other month.  I did three out of the four because my white counts fell too far and had to stop.

Before treatment I was active and physically fit.  It took me a long time before the fatigue wasn't an issue.  My only advise is to listen to your body and to be good to yourself.  I had doctors who looked at me as if I had two heads when I told them what was/is going on with my body.  I now dismiss them.  A good doctor will admit they don't know EVERYTHING and will keep looking.  If they can't find the problem they can send you to someone else.

 

I have shortness of breath which happened during treatmen, still a problem and about to see another specialist.  I discovered some things along they way like my immunoglobins Iga, Igg, Igm are low (very).   Perhaps there is some relationship or not.  My fatigue did get better and hope the same is true for you.  

I never considered stopping Rituximab until I had too and wish you well.

 

yesyes2
Posts: 592
Joined: Jul 2009

I have been on Rituxan, first for Lymphoma and than for RA since January 2008.  First for the 4 week induction, than once every 8 wks until a recurrance in July 2009.  Than had RCHOP for 6 cycles.  Since than I have been having Rituxan in 2 cycles every 6 months.  That is a very large amount of Rituxan, far above anything the Pharma has recommended.  I also have not got a choice, as all other RA drugs are off the menu.  The immuno suppressing drugs were the reason for my NHL.

Phil, I experience fatique for a few days every cycle, just know I won't be doing anything for several days and plan for it.  I am fairly certain the drug is not the reason for the tiredness but that it's the Benedryls.  Would love to go without it but the nurses seem afraid to have me try.  I'm sure it would be fine though.  My Onc and RA docs all know this is what the drugs can do.  As far as joint pain, I can not speak to that, as pain for me is an every day occurrance.  This drug reduces inflammation and allows me to live my life.  

What Rituxan can do is reduce IGG and IGI levels and periodic blood tests should be done.  The longer you are on any drug the more problems will come to light.

I totally respect your decision and would support your choices.  I have found over the years of dealing with cancers, going back to 1992, that what I chose and what is right for me is not necessarily right for the next person.

Your question on a gold standard for fatique, don't think there is one.  If I don't get a nap or a rest in the late afternoon I stop functioning.  Feels like I fall into a giant pit and can not climb out.  That is a 10.  But I don't think for me it's the Rituxan.  And the fatique isn't anything like the harsh chemo agents I have had.

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

My initial tx was 6 - 3 week cycles of Chop + rituxan. When that didn't do the job I had 3 - 3 week cycles of ICE + Rituxan. Since then I have had Rituxan every 8 weeks on a Tues. I often fall asleep during treatment and take a 2 - 3 hour nap when I get home. The rest of the week I do go to work but I tend to work the "later" schedule.  The next week I work on getting more sleep and try to get back to my regular start time. 

I do know that part of my fatique is from the Rituxan but another part is that when I was doing the chemo treatments I wasn't very active, not that I am normally an active person. I avoid the gym because I was worried about catching something. At work I stayed at my desk more than usual to avoid being abround too many people. I am paying for that now in that I have to work hard to build up my strength & endurance. At my age laying around a few days can erase 4 days of excercising. 

My new plan is to work out as much as possible that week before the Rituxan so it doesn't kick me back too far. See how that works.

 

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