Anyone out there suffered from an anaphylactic shock caused by retuximab infusion given allegedly to supplement chemo tablets ?
Retuximab: Anyone out there suffered from an... - CLL Support
Retuximab
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Griggers
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I am a retired pharmacist. I have seen just about all drugs give allergic reactions including anaphylactic shock to somebody. luck of the draw.
I am a retired pharmacist also and agree with you- you don't happen to live in Australia do you?
USA-glad you agree-lol
Rituximab is a monoclonal antibody. There is a risk of an allergic reaction to any monoclonal antibody infusion. I had very bad hives on my third rituximab infusion which was unusual in the sense that a person is more likely to have an allergic reaction to their first infusion that to a later one.
Nurses who administer infusions are trained to anticipate infusion reactions and have strategies to deal with them. Benadryl and tylenol are typically given at the start and the infusion rate is very slow. They increase the infusion rate as one appears to tolerate the drug, decrease the rate if there is a reaction and pause the infusion if the reaction is too bad.
I would say in general the risk of a reaction to rituximab is far, far outweighed by the benefit it provides. The risk of untreated cll can be way worse.
Whats the difference between Gazyva and Rituximab? Why is Rituximab and Venetoclax approved for relapse CLL and Gazyva and Venetoclax isn’t ? Seems odd
Gazyva is a newer generation monoclonal antibody thought to be more powerful than rituximab in killing cll cells. Gazyva will likely gain broader approvals as it winds its way through the many clinical trials it is in for cll and other cancers.
Here is a post I did that might explain the difference a bit better:
healthunlocked.com/cllsuppo...
I had an anaphylactic reaction to Rituximab, causing my blood pressure to plummet and getting sick as well. They paged my oncologist right away. If Gazyva is more powerful, does that mean an allergic reaction is potentially going to be greater as well? This might be my next treatment once Imbruvica wears off, and a bit fearful.
no it does not automatically mean that.
my husband's treatment was to be with Gazyva and venclexta so it is used in relapsed cll. Rituxan is first generation from mouse whereas Gazyva is human antibody. Please anyone correct me if wrong. He had Gazyva and leukeran pill twice in past. Because he is doing so well right now we are not doing any treatment
So your husband had the Gazyva and leukeran. , or the Gazyva and Venetoclax?
Good to hear he is doing. Well
In September he had prescription for Venclexta to begin after Gazyva infusion the plan was one year of Venclexta and once a month for 6 months Gazyva then stop. However, since his blood work was so good and he had what I felt was a reaction to the Venclexta, we are giving no treatment but are waiting for the second opinion consult from the CLLSociety experts. Trials have been on for a while with Gazyva/Venclexta or Gazyva/Ibrutinib so they are definitely used together.
That’s good to know ! So he was treated with Rituximab and he’s good now ?
Yes those are Great combos
He had 4 rounds of Rituxan for autoimmune hemolytic anemia in June of this year along with IVIG and steroids and he didn't even need the 4 weeks of Gazyva which is usually given before the Venclexta is started at my insistence. So I do credit the Rituxan for putting him in good stead and not needing any further treatment for now. He had NO reaction to the Rituxan at all. The only time he had a reaction to Gazyva was round 1 in 2016 where it was stopped about 30 minutes in when he felt tense and uncomfortable, they were able to resume in about 20 minutes and after that time there was no more reaction. This seems to be the way I hear from most people. Of course the premeds were given Tylenol, Dexamethasone and Benadryl. I think you will be fine. The team in the cancer centers are well aware of of the protocol and will be ready to take immediate action. Our doctor has decided not to resume Venclexta at all. He had thought about giving Gazyva alone maybe every 2 or 3 months but I asked that he hold off until we see if he really needs to treat. Thoughts and good wishes are with you. Take care.
That’s amazing , glad to hear the Rituximab solved the AIHA issues
thanks for sharing Your experiences yes the Gazyva seems to have a reaction the first 100mg after that it seems to be well tolerated for the rest of the doses
From what I read , Rituximab has been around a long time but it’s not as effective as the Gazyva for CLL. But in your husbands case he probably didn’t. Need it since he has the Rituximab
So from what I am gathering your husband was on the Rituximab to resolve his AIHA and then shortly after he stared the Venetoclax and it’s going very well ?
That’s excellent news
Actually he only took about 5 total doses of the Venclexta because one week his neutrophils were low so told to stop and the next time he had an episode where he was clammy, dizzy, nauseous and I was concerned it was the Venclexta. After that the doctor decided not to continue with Venclexta at all and was considering just giving the Gazyva every few months, but even that is stopped for now because his blood work is excellent. Hemoglobin 13.9, white count 6.5, neutrophils 4.6 as well as no symptoms so we are waiting for the online consult with the specialist from the CLL Society but has been a long wait so far. Best of luck to you!
Good on you so glad you had trained nurses looking after you and you did not have an anaphylactic reaction which caused me to have a heart attack and blurred vision for the rest of my life.
I am sorry you had that reaction. I hope you are not angry at me for responding to your question, it was not my intent to give you any info you found unhelpful. I was not aware monoclonal antibody infusions were given without medical supervision as your response implies.
I was violently allergic to Rituximab. I was put in the ICU and had it titrated to endure it. It is created using an animal protein(Mouse?) that , apparently I am allergic to. I had no problem with ofatubamab, a humanized version of this cd 20 affecting monoclonal antibody.
Yes. I had a severe reaction to the mouse protein extract which the delivery agent in Rituximab. I couldn’t breathe and was violently sick. I was immediately given a steroid injection in the arm and gradually recovered. I was taken aback when the doctors wanted to try again a couple of hours later with a lower dose. They did, and all was well. I had no reactions in subsequent infusions (this was my first).
I was to have Obinutuzumab (Gazyvaro) and reading the data sheets, they start with IV paracetamol and a benzodiazepine then v e r y s l o w l y start the obinutuzumab but it says there should be resuscitation equipment "to hand". There is clearly an anticipated risk of anaphalaxis so likely to be with any monoclonal antibody. In the event, I am on acalabrutinib instead so the problem, or potential problem, never arose.
I am on W&W still. I have an anaphylactic response to oily fish and seafood. Blue light job. Happened one time after a dose of medication I had been taking for years. I am sorry this happened to you, but thank you for highlighting it. When I was started on vitamin D treatment, I had to take the first few doses in A&E department. Then I discovered there are vegan ones available, which NHS won't pay for, but I pay for myself. Take care, keep safe, I hope the after effects subside.
No to this situation but did have this at time of my first infusion of rituxin. Caused by the hemotologist forgetting to prescribe dexamethasone prior to the infusion.
The founder of the CLL Society, a man with lots of official degrees, has posted a scholarly article documenting research that says there is no difference between taking ibrutinib by itself and taking ibrutinib with rituximab drip. There are, however, substantial possible side effects to the rituximab. As a result of this, about 6-7 months ago I passed this information on to my oncologist and told him I would NOT be taking the rituximab drip. I believe this was a good decision. * I also decided to take the 280mg tablet instead of the 420mg tablet, due to the high incidence of people in the clinical trial getting upper respiratory issues. I believe this, too, was a good decision. My white blood cell count is higher than I would like, and is coming down slower than I'd like (±43,000, down from a high of ±78,000), but at 78, and with a history of asthma, pneumonia, etc., I'm not now experiencing anywhere near the complications I might otherwise experience at the higher dose. *** I'd love to have the incredible AussieNeil weigh in on this. (You're a God-send to so many hundreds of people in need, Good Sir!)
Pogee - It’s important to provide links to articles like those you have referenced. The person you are referring to is Dr. Brian Koffman - bkoffman We each have to decide, with our doctors, what the best course of action is for us, but that does not make our decisions right for everyone. Many do very well when treated with ibrutinib combined with Rituxan, and many have no side effects with the full dose of ibrutinib. You have assumed that your lack of side effects is because of your reduced dose, but there is no proof that that is the case.
AussieNeil
Pogee, further to what MsLockYourPosts says, here is the relevant study, where the key points : "- Rituximab added to ibrutinib in relapsed and treatment-naive high-risk patients with CLL failed to show improvement in progression-free survival.
- Patients treated with ibrutinib plus rituximab reached their remissions faster and achieved significantly lower residual disease levels."
ashpublications.org/blood/a...
We are transitioning to personalised medicine for CLL, so for some patients, it may be advantageous to have the combination treatment for a faster reduction in tumour load to improve our quality of life.
I've personally experienced the value of adding the next generation version of Rituximab to the next generation of Ibrutinib (Acalabrutinib + Obinutizumab) with Venetoclax. The clinicians considered that the benefits of adding Obinutuzumab were probably outweighed by the increased risk of side effects and infections, but in my case, adding Obinutuzumab quickly cleared my bone marrow, improving my haemoglobin, platelet and neutrophil counts and helping me overcome febrile neutropenia, so I could leave hospital.
With respect to reducing the Ibrutinib dose, I consider we don't have adequate trial based evidence yet to determine the appropriate dose for a given individual.
Neil
You are correct, and I appreciate your so advising me. I will endeavor to do so in the future.
