Starting treatment: I'm starting treatment today... - CLL Support

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Starting treatment

Jsceltic67 profile image
12 Replies

I'm starting treatment today for CCL.The treatment is called Rituximam,has anyone out there had the treatment,I would like to here from you.Thanks John.

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Jsceltic67 profile image
Jsceltic67
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12 Replies
GMa27 profile image
GMa27

I had FCR....make sure the rituxin is administered over at least 4 hours. Very slow. I had a port which saved veins & kept my hands free. They give you great premeds to help with any issues. You are in good hands. 💕🙏

CCgroup profile image
CCgroup in reply toGMa27

Welcome to our group.

I had Rituximab infusions which contained another couple of other ingredients as my first treatment after being diagnosed with CLL. They took a few hours each. Once I started on Ibrutinib the results against lymph nodes were so amazing the infusions were stopped and I just took the pills. After almost 5 years I'm leading a normal life.

Dan

Jsceltic67 profile image
Jsceltic67 in reply toCCgroup

Thanks for letting me know.helps with piece of mind at this worrying time.Thanks John.

AussieNeil profile image
AussieNeilPartnerAdministrator

We have nearly 3,000 posts mentioning rituximab (Mabthera/Rituxan) treatment. It's generally given in combination with another treatment drug or drugs.

Neil

lankisterguy profile image
lankisterguyVolunteer

Hi Jsceltic67,

I had rituximab / Rituxan (aka Mabthera) infusions in 2010 for my CLL, but as many others have found, it gave me a short remission and is rarely used alone to treat CLL now days.

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In most cases it is combined with another pill type drug like venetoclax / Venclexta (aka Venclyxto) or one of the BTKi drugs like ibrutinib / Imbruvica, acalabrutinib / Calquence, or zanubrutinib / Brukinsa

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There is also a more effective infusion than Rituxan called obinutuzumab / Gazyva that is used more often, but again mostly in combination with a pill type drug that is taken for 1 to 2 years and the combination gives much longer remissions than 6 or 8 infusions over 2 months alone.

-

Len

Senecio profile image
Senecio

Hello John,

I was treated with Rituximab (together with Cyclophosphamide and Fludarabine - FCR) in 2017. Seven years after, I am still in (partial) remission. NO other drugs needed in those years of remission. I am likely to need further treatment in the next year or so.

Rituximab itself was not a nasty treatment, although I did develop an allergic reaction during the first day - they just spread it over two days and all went well. The other two drugs however, were not pleasant.

Good luck,

John

Jsceltic67 profile image
Jsceltic67 in reply toSenecio

Thank you very much for the information,really appreciate it,as you know your mind is all in bits.Thanks John.

LeoPa profile image
LeoPa

I know it's a typo but CCL made me laugh. Caribbean Cruise lines came into mind 😀.

Floxxy profile image
Floxxy

I had FCR as a first line treatment in 2019. I'm now 18 months in to my second line treatment of venetoclax and Rituximab. I had Rituximab infusions once a month for 6 months. The only side effect I had was fatigue. I hope all goes well for you. X

W00dfin profile image
W00dfin

My WW ended with hospitalization for sepsis and FCR in 2011. I am fuzzy on the order of the 3 infusions. The first one in a huge IV bag triggered rigors, uncontrollable full body tremors. Since I was still in hospital the doctor ordered an extremely slow drip which took 24+ hours. Since you didn’t report a significant illness, you should not require this procedure. I would still support Gma27’s recommendation for a slow drip as a precaution.

My remission lasted 5 years. May yours be at least as long!

Canuck901 profile image
Canuck901

rituximab with venetoclax is a very good combo , obinituzimab and venetoclax is better but. not offerred everywhere yet

either of those 2 are very good protocols

skipro profile image
skipro

Hi

If your wbc is really high you should prophylax for TLS

I got a rash for 9 months but I think that's rare

This time around I received Obinituzimab

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