Scared Again - what are the side effects of Rituxan Maintenance

Jencarr
Jencarr Member Posts: 11
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I can't believe that my 2 months of freedom after chemo is up and it's time to start Rituxan Maintenance every other month. I have gained strength and feel great, but now, just the thoughts of walking into that treatment room again scares me to death.
I wonder what side effects I will have and if it is going to take me down again? The thoughts of it horrify me. Can anyone share their Rituxan side effects experiences with me, please?

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Rituxan
    Jen,

    Rituxan is not a conventional chemo, but a "monoclonal antibody." It basically helps your body destroy C-20 and other type cancer cells. You must have had a "B-Cell" type cancer. Did you take it with your chemo? It is often used with combination therapy (numerous drugs at once). If you have already been using it, then you have basically nothing to fear as regards allergic reactions, etc.

    If you have not used it before, they will introduce it slowly, and watch for allergic or other negative reactions. They may give you benadryl or some other anti-allegy med to ensure that no severe allergic reactions develop in the first hour or so. The more you take Rituxan, the faster they can administer it later.

    I never had reactions to Rituxan during infusion, but it did have side-effects for me. It made me feel like I was sick with the flu most of the time, with fairly severe muscle pain, etc. Some people do not have this reaction to it at all. I hope you are lucky with it.

    Generally, Rituxan, for most people, is less toxic than most chemo drugs. It will not cause hair loss, neuropatahy, nausea (for most people), or many of the other common chemo side effects.

    Go to www.chemocare.com, look under "Chemotherapy Drugs," and you can read more about it.

    Compared to many chemo schedules, I think you will find Rituxan once every other month to be pretty easy.

    Max
  • jimwins
    jimwins Member Posts: 2,107
    #3
    Hi Jen
    Hi Jen,

    I agree with what Max posted. Most people handle rituxan pretty well.
    I understand the fear of entering the treatment room. Every time I go
    for my check-up or port flush, I get a little nervous/scared. I think this is normal.
    I've gotten friendly with some of the staff there so I usually see someone
    I know when I go so it's a little less frightening. I also try to couple my
    trip with something nice for me - as simple as a meal out, some shopping,
    anything to make the trip more positive. So finding something positive that you
    enjoy and are able to do along with your trip/treatment might help. Just
    a thought :).

    The link below shows the search results of "rituxan+side+effects" from the
    lymphoma board. I know there were some recent postings about this.
    I'm not sure this link will work for you. If not, see the steps below it.

    Rituxan Side Effects Posts on Lymphoma Board

    Searching Lymphoma Board for "rituxan+side+effects" :

    1. Go to the discussion boards.
    2. Select "Lymphoma (Hodgkin and Non-Hodgkin)" board.
    3. When that opens, you will see a search box in the upper right area of the page.
    4. Paste "rituxan+side+effects" into the box and click on search. Include the quotes in
    the paste. This should bring up all posts from the lymphoma board
    with all three words in them.


    Hang in there and you know you've got us here on the site backing you :).

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • miss maggie
    miss maggie Member Posts: 929
    #4
    went well
    Dear Jen,

    You will get many replies about Rituxan treatment. I too had Rituxan once weekly for 4 weeks. I had no problem at all. There are some on this site, Sue for one, who will respond.
    Sue just finished her 1 year maintenance with Rituxan, and is starting the second year of maintenance. I think she is doing very well, maybe a bit tired. But, bounces right back.
    Sue is an amazing lady.

    Of course, there are some, very few who have negative results with Rituxan.

    Maggie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    miss maggie said:

    went well
    Dear Jen,

    You will get many replies about Rituxan treatment. I too had Rituxan once weekly for 4 weeks. I had no problem at all. There are some on this site, Sue for one, who will respond.
    Sue just finished her 1 year maintenance with Rituxan, and is starting the second year of maintenance. I think she is doing very well, maybe a bit tired. But, bounces right back.
    Sue is an amazing lady.

    Of course, there are some, very few who have negative results with Rituxan.

    Maggie

    Rituxan
    Hi Jen,
    I just had a Rituxan infusion on Tuesday and I'm feeling fine today. As a matter of fact I've been chasing my one year old granddaughter Lizzy all over the house since 6:30 this morning...ha! She's half walking and crawling, so she's on the go non-stop!!! Anyways....I've done very well with my R maint. With that being said, I do have a few complaints with it, but nothing major. I'm a little more tired than usual the first few days after my infusion, but thats caused mainly from the pre-meds they give before the Rituxan is given. They give me 2 tylenol to take, benedryl and one pill called lorazepam(sp?)before starting the drip. I always sleep through the 3 hour process and then feel pretty tired the rest of the day, but start perking up as the week progresses. I'm no ball of fire like I use to be, but I'm adjusting to my new "slower" normal..ha! As long as I can continue to watch my sweet Lizzy 3 days a week and keep up with my household chores, I'll be a happy camper. I'm sure you will do fine, and the chemo nurses are always right there to take over if problems should occur. Tell us how it goes for you.
    Best wishes....Sue (FNHL-2-3A-6/10)
  • Avantgardener
    Avantgardener Member Posts: 32 Member
    #6
    allmost60 said:

    Rituxan
    Hi Jen,
    I just had a Rituxan infusion on Tuesday and I'm feeling fine today. As a matter of fact I've been chasing my one year old granddaughter Lizzy all over the house since 6:30 this morning...ha! She's half walking and crawling, so she's on the go non-stop!!! Anyways....I've done very well with my R maint. With that being said, I do have a few complaints with it, but nothing major. I'm a little more tired than usual the first few days after my infusion, but thats caused mainly from the pre-meds they give before the Rituxan is given. They give me 2 tylenol to take, benedryl and one pill called lorazepam(sp?)before starting the drip. I always sleep through the 3 hour process and then feel pretty tired the rest of the day, but start perking up as the week progresses. I'm no ball of fire like I use to be, but I'm adjusting to my new "slower" normal..ha! As long as I can continue to watch my sweet Lizzy 3 days a week and keep up with my household chores, I'll be a happy camper. I'm sure you will do fine, and the chemo nurses are always right there to take over if problems should occur. Tell us how it goes for you.
    Best wishes....Sue (FNHL-2-3A-6/10)

    Rituxan
    Jen -

    I just had my 8th (and last) Rituxan treatment this past Friday. On my way home, I stopped at Target and did some shopping, then took a walk. There were a few times when I was really tired afterwards and had to lay down for a couple of hours, and several times when I had a slight headache for a while, but for the most part it was a breeze.

    I had a bad reaction to it during my third session - my face turned bright red, and then I had some pretty bad abdominal pain, but they gave me IV morphine and that stopped it right away. From then on, they included a steriod as part of the Rituxan treatment, and I had no further problems.

    Don't worry too much - as Sue said, the chemo nurses are right there watching you, and there is always a doctor there too, so if anything does go wrong they will be right on top of it. As soon as I said PAIN, they brought the morphine and I was fine (a little TOO happy, maybe!) within 5 mintues.

    Let us know how it goes.

    -Janine
  • Kalylis
    Kalylis Member Posts: 10
    #7
    Hi Jen
    When I started
    Hi Jen
    When I started treatment I was told there are reactions that you can get during rituximab but rarely any side effects. I received 8 rounds of rituxan with treatment than after treatment I was to receive twelve doses once every other month. My first time getting rituxan I had tons of reactions such as breaking into hives with a burning sinsation. Than I had troubles breathing and a fever. Than I had sneezing attacks. They took me off for the day and started over the next day. The gave me benadryl and antihistamines before every treatment and had to receive it slow and be monitored through the entire treatment. The nurses were on top of it and the reactions were taken care of. I have had a total of twelve doses of rituxan now and am starting to have sever side effects. At first they thought I was relapsing but are leaning more toward rituxan side effects (not certain until some test are completed). I have been very tired the entire time. My WBC was extremely low and my neutrophils went to zero. I have been having alot of abdominal problems with my colon which they now thinker be from the rituxan as well as I have been having weekness in the knees and have been falling. I thought I was this patient that seems to have one problem after another and now after six months they are starting to think this drug has caused every issue and wasn't detected earlier. It is very rare to have any severe side effects, so hopefully it will work wonders for you. I know it can be scary going back for anytype of treatment, but this drug can do wonders. Using it as a maintenance drug can increase the length Of time before a relapse by 66%. Which I think is amazing. Because of the effects I've been experiencing. I have requested to be taken off of it. It sucks my 3-5 years for relapse has gOne to a 1-2 years. But the way I see it. I'm going to relapse regardless. With the effects I'm having. What's remission if you can't feel healthy and happy for that time. Besides the blood counts issue can be more dangerous than good.
    I am sure you doctors and nurses will be there with you and notice any reactions during injections. I hope you experience goes well and rituxan can give you a longer remission.

    Lisa
  • Jencarr
    Jencarr Member Posts: 11
    #8
    Max Former Hodgkins Stage 3 said:

    Rituxan
    Jen,

    Rituxan is not a conventional chemo, but a "monoclonal antibody." It basically helps your body destroy C-20 and other type cancer cells. You must have had a "B-Cell" type cancer. Did you take it with your chemo? It is often used with combination therapy (numerous drugs at once). If you have already been using it, then you have basically nothing to fear as regards allergic reactions, etc.

    If you have not used it before, they will introduce it slowly, and watch for allergic or other negative reactions. They may give you benadryl or some other anti-allegy med to ensure that no severe allergic reactions develop in the first hour or so. The more you take Rituxan, the faster they can administer it later.

    I never had reactions to Rituxan during infusion, but it did have side-effects for me. It made me feel like I was sick with the flu most of the time, with fairly severe muscle pain, etc. Some people do not have this reaction to it at all. I hope you are lucky with it.

    Generally, Rituxan, for most people, is less toxic than most chemo drugs. It will not cause hair loss, neuropatahy, nausea (for most people), or many of the other common chemo side effects.

    Go to www.chemocare.com, look under "Chemotherapy Drugs," and you can read more about it.

    Compared to many chemo schedules, I think you will find Rituxan once every other month to be pretty easy.

    Max

    Thanks
    Thanks so much for sharing your experiences. I did have a reaction to Rituxan the first time I had it. It was in combo with Treanda. I got hives and chest pains, but they slowed everything down and did the same as with the others with a reaction. I just don't know which drug made me nauseated, sore muscles, aching knees, tired, etc. I'm hoping it was Treanda. I feel so fortunate that the 6 chemo treatments were successful. I'm just hoping not to fall back into that dark place again. I'm determined not to let treatments consume my life, so I'm planning fun things in between. I'm just hoping I'm up for the fun I've planned. Say a prayer for me on Wednesday when I begin my 2 year maintenance journey. Thanks again everyone for your support!
  • JoanieP
    JoanieP Member Posts: 573
    #9
    Jenncarr
    Hi I did two years of rituxin. I really didn't have a problem except duing infusion my restless leg got crazy. It has been 3 1/2 since I was diagnosed and 3 years June 2 of remission. I feel blessed every day and thank God for every day I feel well. I hope yours is as successful as mine has been so far. Take care Joanie I did have horrible contipation. Sometimes I needed two enemas. Have one at home in the cabinet just in case. After 3 years I never go without one on hand even th9ugh I never need it know:)

Discussion Boards