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Retuxan

Faith_
Posts: 56
Joined: Mar 2011

It's been a while since I posted...my husband is over half way done with his 2 years maintenance treatments of Retuxan infusions. I have a few questions... Does any one who is getting Retuxan have any side effects such as nerves stomach and cloudy head feeling... just feeling really crappy and irritable. Also does anyone have shoulder pains? His last infusion was a month ago and next treatment is due at the end of March. We know that these are common side effects but they usually only last about a week after treatment, this time symptoms are lasting longer. He is due for three more treatments after the March infusion and doesn't know how much more he can take. Trying to be very positive for him and keep him focused. Try keeping is mind busy so that he isn't thinking about how bad he's feeling. I hope that I can hear from any one out there who may be dealing with the same or anyone whos in remission who can give him some positive comments ....some times hearing from those who have gone through the same or are having the same side effects helps him feel that he is not along.

Hope that everyone is doing well. Looking forward to hearing back.
God Bless,
Faith

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Faith,

 I just finished my 2 year Rituxan maint last Friday. Some of the side effects I've delt with are...shoulder pain, achey joints..(especially in my knees),mild acid reflux, headaches and fatigue. On a scale of 1-10, I'd say my overall discomfort has been at a 4 or 5. Do-able, but not a total walk in the park, by far. I use 2 heating pads, one for my shoulders and back, and another for my knees. I drink baking soda water to help with the acid reflux( 1 tsp in 4oz of water), a couple of times a day. I take 2 tabs of anacin, 3 times a day for my headaches and a low dose antidepressant at night 1 hr before bed to help me fall asleep. As far as the fatigue goes, I've not gotten back to 100% since my first line chemo back in 2010. I'd say I'm 60% at best. My doctor told me I should see improvement in my overall health in about 3 to 4 months. I'm anxious to see if my energy level picks up, because everything else is tolerable, but I just want to feel more energetic. I hope your husband will be able to finish his last 3 Rituxan infusions. I had mine every other month. Maybe his doctor can give him some suggestions or medication to help with his shoulder pain and nervous stomach . If I can help further, please let me know. Best wishes...Sue

(FollicularNHL-grd2-stg3-typA-Dx 6/10-age62)

 

Faith_
Posts: 56
Joined: Mar 2011

Sue,
Thank you for replying, I will do that apply a heating pad to his shoulder. He was relived to hear that some one else also has shoulder pain, and that he wasn't just imagining it. He has meds for the anxiety but hates taking them. He is also a heart patient and worries about all the meds he needs to take. But when things get tough he will take his anxiety meds. He does not have the acid reflux, but does get the headaches and fatigue.

Thank you, Sue...All the best.
Faith.

anliperez915's picture
anliperez915
Posts: 746
Joined: Sep 2011

Hi Faith,

Welcome to the group, I also had Rituxan and still have more to get in July. I also have elbow, shoulder and back pain. It usually comes and goes, I have to take pain medicine for it. I get headaches and I've noticed some short term memory problems. I have to set alarms and write things down for things that I need to do or I'll forget if I don't. I will talk to my docs about the memory issues but won't see him till July. Hope your husband gets his issues worked out, take care

Sincerely,

Liz

illead's picture
illead
Posts: 500
Joined: Aug 2012

Hi Faith,

     Bill just finished his first yr of rit maint on Monday.  He breezed through his first line chemo and the maint.  However he is tired for a few days after the rit.  This week he had a little bit of nausea and a headache and his short term memory has been worse in the last few months.  We don't know if that is from rit or just part of growing older.  For sure we think the nausea and headache is due to rit and may get worse as his next yr of maint continues.  So hope this helps too.  Both of you hang in there, we are.  Bill and Becky

NANCYL1
Posts: 228
Joined: Jun 2012

Faith:

I was diagnosed with Mild B-Cell Lymphoma last year, 2012,  and began Rituxan in May of that year.  (Also, I had a Mitral Valve replacement in 2008.)

My main complaint is that I get somewhat tired for a couple of months after the Rituxan.   I am having Rituxan every six months for two years.    Finished the end of this year and we will see what is next.

I had a bad reaction with my first infusion of Rituxan last year in May.    The oncologist had to change the mix.  He added Steroids.     Now the infusion goes smoothly.   Benedryl and Tylenol are also in the mix.

For the next day or so after the infusion, I get "hopped" up and get an irregular, fast heart beat off and on.  I do not like that,  since I have atrial fibrulation, but my cardiologist says it is ok.  (The one plus is that I have so much temporary energy that I get inspired to do housework!)

I am sorry to hear that your husband is having such a difficult time. 

I hope things improve.  Have you spoken to your doctor?

Let us know.

Nancy

 

GKH
Posts: 291
Joined: Jul 2012

I went on Rituxan after being diagnosed with FNHL Stage IV (bone marrow involvement i October 2011. I have a dosage of 800 MG. I started with 8 weekly infusions after which I began infusions each 8 weeks. That will continue till April 2014 and 25 total infusions. At first I was not very much affected by it. I already had severe leg pains and fatigue before I started it. Now here are some of my symptoms. Some of them may be due to the Lymphoma and others may be from the Rituxan. Its not a black and white world we live in so its sometimes hard to tell.

1). Severe chronic fatigue. I have good and bad days but the bad days are sometimes awful I just sleep all day

2). Severe muscle pains in my legs and a palpable lump in my left thigh which apparently is a "stealth lump". You can see it and feel it but it does not show on CT, MRI or ultrasounds.

3). Knee, ankle and shoulder pains. The shoulders really hurt badly at night.

4). A dark spot on the back of the lens a film forming over my retina in my right eye making me nearsighted in that eye while my left eye is farsighted. I get double vision occasionally. Dr. says the film is most likely dead cells from lymphoma.

5). Breaks in my retina on the left eye. Doc says it is definitely not age related macular degeration and doesn't look like lymphoma. I go back in six weeks.

6). Staph infections in the quick of two of my fingernails.

7). My scan on Friday showed gallstones and "extensive arterial calcification" neither of which existed 6 months ago.

These symptoms may or may not be serious and may or may not be progressive. In short I live in limbo. I think that the Rituxan is at least partly responsible. I will have a long hard talk with my onc on Tuesday during my next infusion.

My philosophy in this situation is "Stay calm and party"!

PBrahm
Posts: 4
Joined: Mar 2013

I have been taking rituxan for 1 1/2 yrs now every other month. i have been getting bad body aches which have been getting worse. my dr prescribed 5 days of predisone steroid this time. im on day 3 now and feel the same so far. looking forward to my last dose this summer.

Machir
Posts: 32
Joined: Mar 2013

Hi Faith.  I did eight rounds of CHOP/Rituxin followed by sixteen rounds of mainenance rituxin over a two year period back in 2004 thru 2006.  Please tell your husband it was worth it.  I had seven years in remission (follicular NHL).  Recently I've relapsed and did two rounds of Rituxin along with a radio isotope.  I'm not sure if it is an age thing (I was 45/46 when I did the first treatments and I'm 53 now) and I too felt pretty bad after I had them.  I know it sucks.....all the cancer stuff sucks (except the love that comes from family and friends plus others).....but I'm a believer in Rituxin.  We endure it becasue we have to.  Then we make the most of the time when we feel good.  We take more from the good times to make up for what we lost during the bad treatment times.  Take that cancer!  I'll be praying for you.  Mac

PBrahm
Posts: 4
Joined: Mar 2013

thanks Mac for the info you wrote. i am in the same age group and am glad to know that you had that long of a remission. it gives me a lot of hope.

Machir
Posts: 32
Joined: Mar 2013

I've never been very good at settuing meaningful records.....I'm sure you will surpass my remission time without breaking a sweat (I hope you do  Smile).  I'm working on remission round two.  I'm thinking with a little effort I can set a personal best.  One of these days somebody is going to find a cure and then we'll all have to share stories about our hobbies so we can find things to talk about.  We'll that and maybe we can find some youngsters to scare with our stories of the old days of long ago when medical treatments made our hair fall out.  We couple that we a good dose of having to walk uphill to school 'both ways' and we should have them riveted.

 

 

jimwins's picture
jimwins
Posts: 2000
Joined: Aug 2011

Hi Mac.  I always heard it as wallking both ways to school uphill in the snow ;).  In a generation or two the kids will probably have computer implants and school will come to them ;).  Someday the "old folks" will complain of how they had to use a keyboard and mouse to interact wtih computers :).  

Hugs - Jim

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

  One of these days somebody is going to find a cure and then we'll all have to share stories about our hobbies so we can find things to talk about.

 

That is a pick me up at the end of a long day

Thank you

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Faith,

 

I have been in remission for about 3-4 years.  I too am on the Rituxin maintainance plan.  I am the crabbiest person on the planet after my treatmentsEmbarassed.  For me, it's not the Rituxin.  It is the premeds aka the steroids administered.  Steroids affects different people different ways.  Some survivors are extremely hungry.  Some, like myself and a couple of my survivor friends, get really cranky.  The first few times this occurred, I had to sit back and access the situration.  I had to figure out what in my life and schedule was altered.  Once I determined it was the steroids, I talked it over with my survivor friends, and it was confirmed. 

When I am going through treatment, I already know I'm going to be cranky for 3 days.  I usually stay to myself because I'm a terror on feet.  I don't want snap at others, but chances are I will.

 

So, you see he is going through something that generally can happen due to the premeds.  Perhaps you can meet with the hospital's Social Worker or other Therapist to try to see if there is a work around it.  Also, perhaps joing a cancer survivor support group for your husband man help.  Some support groups have groups for the spouses/caregivers as well.

 

It's the nature of the beast.  I hope this was helpful.  Good luck and God bless.

"Win".

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1037
Joined: May 2012

Win,

I recently had to go for four infusions of iron due to anemia. I asked what one of the clear bags were, and the tech said "Steroid." I asked why I was getting it, and he said it reduced side-effects. I asked if he could delete it, and he said yes, that many people deleted it, and they had automatic permission from the doctors to delete it if the patient asked to not receive it.

I never received a steroid when I was getting rituxan. It is possible that you can simply have them not give you the steroid, if you prefer.

max

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Win,

I didn't get a steroid during my 2 years maint of Rituxan. I received 2 tylenol tabs,and then a syringe of benedryl and a small dose of Ativan into my IV. They usually waited 15 minutes after that to start my R infusion which by then I was well on my way to lala land where I would sleep peacefully for the 3 hour infusion. I would be tired and sluggish for the first week after the infusion, but slowly pick up speed after that. Sore achey muscles seemed to be an on going issue throughout my 2 years of maint and still feel no change as of yet, but it's only been less than a month since my last and final Rituxan. Hopefully in the months to come I'll start to feel more energy and less acheyness in the joints....time will tell. Anyways...I don't see where a steroid is "mandatory" during the R maint...asking your doctor would be a wise thing to do. Best wishes...Sue

(FNHL-2-3a-6/10-age62)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1037
Joined: May 2012

Yes, Win, as I stated above: I do not think there is any steroid necessity. Like Sue, I also got a dose of benadryl, and rituxan was then always my first bag on infusion day. It made me feel "cold," but I guess I was blessed that it caused me no allergic reactions.  I felt like I had the flu all the time, but that may have been from the other drugs in my combination. (My r-abvd was always given at one sitting.)

max

Machir
Posts: 32
Joined: Mar 2013

I've had maintenance Rituxan and never had a steroid as a part of getting that drug alone.....but boy did I like the benedryl shot.  The best ninety minute naps I had during the treatment years came as I dizzily drifted off after the shot.  With that siad I can't agree more about the negative effects of steroids.  I hated my one week in three taking 100 mg of prednisone.  BTW .... I hated the taste of the prednisone so my wife bought 100 empty gel caps from the pharmacy and we'd break them in half and put them in the gel caps so I could take them without tasting them.  A little hint if anyone else doesn't like the taste. 

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