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Rituxan

Richsterr
Posts: 34
Joined: Aug 2010

Hey
Anybody out there have taken Rutixan as a maintenance drug? Have you any side effects? How long have you been in remission? Thanks

Richard

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I was taking rituxin when I was getting r-cvp and never had any reaction. I will also be on it for a maintenance drug for 2 years. John(FNHL-1-4A-5/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am on rituxan maintenance right now. In January it will be one year, and have another year to go or until my onc says ok to stop.

Actually with this last relapse I did only rituxan once a week for 4 weeks, then started maintenance. I don't have any side effects, only tired for a day or so after.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Richard,
My chemo cocktail...(same as Johns) includes Rituxan and then I'll also be on a 2 year Rituxan maintenance program once this first round of treatments is over. I haven't experienced any side effects that I know of. I have read alot about Rituxan and the only thing that worries me about taking it is the info that says it could possibly damage the heart. Of course practically every drug on the market has a list of crazy scary side effects warning of possible strokes, heart failure and some even say cancer. So..I guess we just have to trust our doctors and hope for the best when decisions are made concerning what drugs we take to fight this disease. Don't know what else we can do..ya know? Right now I just want to get in remission and then cross the next bridge of working towards staying there. We will all make it through this Richard..together...just keep the faith. Sue...(FNHL-2-3A-6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I finished my 2 year maintenance therapy this past october, im in remission now, i did have some side affects, i had nausea, and fatigue, the nausea stopped about 3 weeks after i finished the rituxan,, my stomach gets indigestion easily too i have noticed, i also have minor heart damage, which they detected in the MUGA scan, my mitral valve is damaged but the scan said its not bad, to me any damage is bad, but what can i do? My regular chemo cocktail in 2008 when i was diagnosed was CHOP, i couldnt have surgery because the tumor had wrapped itself around the blood vessels to my heart and lungs which according to the surgeon, the surgery would have been like open heart surgery, the tumor itself was too close to my heart to be removed, but im in remission now and im grateful for that, Sue i will keep good thoughts for you as i will for the rest who are dealing with this.
Chris

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Chris,
Do you think maybe the r-chop could be what caused the heart valve damage and not the rituxin? I don't really know but I have read and heard that is a downfall from the chop treatment. Again, I don't know for sure,but your Dr. will not mention it unless you grab them,throw them on the floor and put your knee in their groin and then ask,"What caused this heart valve damage". Well,maybe not that drastic, but you know what I mean. John(FHNL-1-4A-5/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I should have said that the MUGA scan that showed the damage was when i had finished CHOP, so yes thats what more than likely did it, and i know all about the throw em on the floor routine , i had to almost go that route a few times, they wont say a word. Why some doctors are that way i dont know,what ever happened to compassion now a days?They wont acknowledge you until you show proof of insurance,i dont know it just seems to be a cold profession now, im not saying all but there are quite a few out there
Chris

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

I hear ya Chris! After my midway CT scan I didn't see or hear from my doctor until my scheduled next round of chemo...(12 days later). You should have seen his expression when he told me my CT scan was good and I responded with.."I know, I read the results". He said..."Oh...did we already talk about it?" I said.."No, I had the results sent to me so I wouldn't have to wait and wonder until you got around to telling me". Then...I pulled out my copy of the scan results and asked him to explain all of the information I had hi-lighted with a pink marker. He skimmed over it, looked up and said.."this information is more for me than you, and explaining it to you won't make any difference in the outcome of your treatments, so why do you need to know what all of this means"? I just shook my head and said..." because I paid for the scan, and it's my cancer filled body, and thats just the way I am. Seriously Chris, after my comment to him, he was obviously irritated, so then he half a$$ed hurriedly went over the scan results with me. My oldest son was with me and after we finished with the doctor and headed back to the chemo room, Charley said.."Mom, you really pi$$ed him off". I said "tough...when he starts paying the bills, then thats when he can decide what information to share or not share with me, but until then, he OWES me." I am so turned off by doctors since being diagnosed with cancer. And... it's a darn shame when the chemo nurses are the ones that make you feel comfortable, cared for and seem to have your best interest at heart,(wayyy more than the docs)..but only get a fraction of the pay that the doctors get. You don't want to get me started...I've not been a recipient of a caring cancer doctor...which is really quite sad when you think about it.
Oh well...sorry to have rattled on.....Love..Sue (FNHL-2-3A-6/100

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
When you first started posting on here I could tell you were in the same boat I was in just a few weeks earlier. Scared as Hell!!! Like me you didn't know where to turn or to turn too. When I saw your complete diagnosis later it was so close to mine. It seems like we have mimmicked each other in our treatment reactions,except the taste thing. Now when I read your post about how you respond to your Dr. and probably anybody else that ticks you off,it sounds just like me again. I have always been that way with people. I have a tendency to say whats on my mind too. I try to treat everyone with respect unless I sense they are looking down their noses to me. I don't like to be around people I don't like either.Sometimes its unavoidable. There are times I start to get on the soapbox on the site,but I learned my lesson about that. Its amazing how identical things have been so far. Even the tumor activity has been close as far as reduction. Anyway,from the way things are going you will also be in remission when you have your pet scan. Keep taking it easy as long as you can. When you realize you are over doing yourself it is too late and you will spend the next few days making up for it. Thinking of you. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

John...
Maybe we are secret twins that somehow got seperated at birth..hahaha!
Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
I think you are right and somebody snatched you up and ran off to the North West Territory hahahaha!!!! John

DenJ
Posts: 26
Joined: Oct 2009

Sue you are sooo right. I went thru the same thing. I had to practically toss my onc against the wall and I made him answer my Q's. If I ever need a back up...can I call you? LOL.

DenJ

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi DenJ,
I'm far from being tough, but I firmly believe if we don't hold the doctors feet to the fire and MAKE them explain things, then it's our own fault when we don't understand whats being done to us. It's just a rotten shame though that doctors act so darn arrogant and secretive. Makes no sense at all to me. Sue..(FNHL-2-3A-6/10)

donald51's picture
donald51
Posts: 62
Joined: Feb 2008

Hey Richard,

I was dx with FNHL stage 4 in Jan. 2008, was treated with Zevalin in June '08, pronounced free of disease in Aug. '08. I then started rituxan maintenance therepy (every 2 months) in September. I last saw my oncdoc in Sept., 2 years since beginning therapy and he said if my next ct scan(March 2011) showed to be as clean as the others he will probably take me off. During these last 2 years I have had no problems with side effects or reactions to rituxan except for the initial infusion. I had noticed in the beginning that I was also experiencing occassional palpitations in my chest that I was writing off as anxiety. However, in August this year I suddenly started experiencing a sudden change in my bowel movements and then ended up with fissure and fistula. Then one week before Thanksgiving I suddenly started getting those palpitations that would start in the morning and get worse as the day progressed. This continued every day for six days. During that time I had seen my gp who had me wear a heart monitor for 24 hr., started a low dose blood pressure med, had a echocardiogram, started a blood thinning med and scheduled an appt. with a cardiologist. I saw him Tuesday and found out that I have an upper heart valve not working proper, the left side of my heart is enlarged and a hole or tear in the heart which requires a scope down the throat to view the damage better than the ultra sound.I will have that done next week.
Now I have nothing difinitive about any correlation with rituxan but, it does say.. "•RITUXAN has also been associated with serious and life-threatening side effects, including: the return of active hepatitis B virus infection with sudden and serious liver problems including liver failure, and death, other serious infections that can lead to death, heart problems, kidney problems, and stomach and serious bowel problems including blockage and tears in the bowel....." ref: rituxan.com
Other than that, I am doing great! And hope to get off the rituxan in March and forget about cancer once and for all.
Stay Strong and Positive†

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