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1st time doing Rituxan Infusion tomorrow for Extranodal Marginal B Zone Cell Lymphoma

D4343
Posts: 3
Joined: Jul 2017

Hello, I am 31 years old and I was just diagnosed with extranodal marginal zone b cell lymphoma. Noduals were accidently found in my lungs and ended up being cancerous. I am going to start my treatment of rituxan since it is was caught at such an early slow growing stage and I will not have to get chemo. I will be getting 6 treatments once a week of rituxan and then I will be get rescanned for possible more treatment. I am scared and have anxiety of what to expect for my first time and what side effects I will get.. would love to hear from anyone that may have had similiar treatment or diagnosis.

thank you all!

 

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

D4343,

Please understand every person has different reactions to Rituxan so we can only give you our experience.

It can take a long time for the first infusion. First they will most likely give you some type of steroid and something to settle your stomach. Then Benadryl to help with any reaction you might have. Then they start the drip very slow. They will want to know immediately if you have any type of reaction. Do not let that scare you. They are just trying to stay ahead. My only reaction was a small rash that begin to itch. Just as soon as you notify them you are having a reaction they stop the infusion and flush the line so no more Rituxan is being given. They will then most likely administer Benadryl until the reaction goes away. Then the whole process starts over from the beginning. as soon as they see you are not having any reactions they will increase the drip. They continue to watch and if no reaction they continue increasing the drip until you reach the max drip rate not sure what that is. The first infusion usually takes the longest. Some people have reactions on later infusions but this is not the most common. I never had anymore reactions and had a total of 6 infusions. Of course I was also taking Chemo at the time.

Some people sleep a lot through the infusion because of the Benadryl but I stayed wide awake. Take a book to read  I always took an IPad with saved movies to watch to pass the time. I hope yours goes as well as mine. I thought of everything I was going through the Rituxan was actually pretty non eventful. The first day was kind of long but let's face it I was sitting in a chair watching an iPad. 

Please again remember everyone has different reactions to the drug but I think for most it is pretty easy going.

Prayers and hope that your journey is smooth. Let us know how it goes.

Sandy Ray

D4343
Posts: 3
Joined: Jul 2017

thank you so much for your kind message. it is nice to know there are other people that have experienced the same pain. i am having a lot of trouble understanding why i got cancer to begin with and at this age but i am believing that god does everything for a reason. my faith in god has grown so much these last two months. thank you again for your words it means alot.

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

I am 53 so I was a little further along in life than you. I have never really had any health issues until now.

I still sometimes feel like it cannot be me who has cancer. I think it has definitely given me a different perspective on life. I am much more compassionate to others who are sick than I was before. I had no idea the daily struggles many of them face. Even with this I have had it much easier than some.

One of my great comforts through all of this is to know God loves me. I know He will only do that which is ultimately best for me. He loves me like a father. 

The people on this forum are very helpful and informative. My blood pressure goes up before every test and treatment I get. Guess I can act like I am not anxious but the blood pressure never lies. As soon as the treatment or procedure is over the blood pressure goes back to normal. It is ok to be anxious of the unknown. Just remember  almost everything I have worried about through this process has been much easier than I thought it would be.

Please ask any questions you have and make sure to let us know how you are doing.

Sandy Ray

Anonymous user (not verified)

I totally agree with Sandy Ray...everyone is different in how they react. My throat started to feel a bit sore/scratchy and I didn't even realize it was from the Rituxan. As soon as I realized it was getting worse, they stopped it and gave me ice and water and allowed my body to return to normal before starting again. I didn't have any other infusion reactions with my 2nd and 3rd treatment  (treatment 4, 5 and 6 I was switched to obinutuzumab as well as for maintenance). The best thing to do is relax and not to be afraid to talk to the nurses and ask questions. The first one is always the most difficult, but only because you've never done it before and you're nervous. I was 37 when diagnosed with follicular lymphoma and underwent 6 treatmemts (R CHOP then O CHOP). The rituxan was a fairly easy part of the process...just a long day for the first treatment.  Take a good book or movie (or several) and something to eat and drink if you think you may be hungry. 

Relax, let the medicine do it's job and enjoy some down time! 

D4343
Posts: 3
Joined: Jul 2017

thank you for the message, i will try to relax as much as possible, feeling really down and scared but trying to remain positive. i will definietly take your advice!

Evarista
Posts: 256
Joined: May 2017

My experience is also very possible:  six infusions and zero reactions! The nurse stayed in the room continuously for the first 30 minutes each time. The benadryl did make me sleepy, though, and my approach was a gentle podcast or audio-book to help lull me to sleep. Hope it goes easy for you.

Rocquie's picture
Rocquie
Posts: 829
Joined: Mar 2013

I had Rituxan 20 times. The only problem I had was sometimes a drop in blood pressure. If you feel flushed or dizzy, let your nurse know. He or she will stop the infusion to check your BP. If low, they will wait for it to resolve, then start the infusion again. Rituxan is a wonderful medicine that has saved many people. 

Best to you,

Rocquie

 

dana-mihaela's picture
dana-mihaela
Posts: 39
Joined: Sep 2016

I was diagnosed with the same lymphoma as you last year in june. Extra nodal marginal zone lymphoma B cells. Mine was on the pelvic area as a mass pressing the lower part of the spinal cord. My treatment was 5 rounds of R-CHOP. Personally I did not have any reaction to Rituxan and none to any other chemo drugs. As Sandy said I feared more than I experienced. It takes a long time to get all the infusion in probably around 4 hrs and it is longer the first 2-3 times because they want to know if there is any adverse reaction and they give you  the drug slowly. They give you Benadryl anyway just as prevention and I always slept around 2 hrs probably. I got some books with me and magazines and also get food with you since you get hungry in 4 hrs for sure. I was lucky after each chemo I did fine with no fever and no trips to ER. I was tired a lot after I finished the Prednisone which is part of R-CHOP but you do not have to worry about it. Rituxan is a monoclonal antibody and I think you should not fear any fever or lower WBC or loosing your hair :)). I am pretty sure you are going to be just fine. 

Good luck to you,

Dana

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