Just wanted to see if anyone had any insight on what happened or how? And if my chances are better the next time I try again, w/out such a severe reaction.
I went in for the low dose/(test)bag of Obinutuzumab. Due to to certain circumstances, my Oncologist had already put me on Venetoclax. I had approx 4-5 days of Venetoclax (at 20 mg a day) already taken.
At this point I was Stage 4 CLL. I had a massive enlarged spleen, very enlarged lymph node under my left arm and swollen and slightly visible lymph nodes in my abdomen and chest area.
About 20-40 minutes into the initial Obinutuzumab drip, I started having difficulty breathing, then felt a sense of dread and confusion come over me. My breathing became very labored and shallow. The administering nurse had infused me with steroids and Benadryl, where after about 10-15 minutes I was finally able to talk and breath again. Immediately after which, I fell right to sleep.
I was eventually awakened by multiple nurses hovering over me apparently trying to bring my heart rate down which went into the 150-175 ish range (or higher?) Realizing they couldn't bring my heart rate down to a normal range they rushed me into the ER, where eventually my heartrate came down to low 100s.
Any input or ideas what may have happened, why and if I might do ok next time if I decide to resume the Obinutuzumab IVs?
Thank you again for any input and response.
Robert
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CoramDeo87
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Good question. I am on V&O treatment and will do Obinutuzumab for next 3 months plus daily Venetoclax. First infusion of Obinutuzumab put me in anaphylactic shock immediately. Unlike you, I could not breath and heart rate dropped like a rock. The infusion nurses were taking my oxygen saturation and heart rate almost continuously. I was so far gone that the only reading I heard was 84% oxygen. I did not think I was going to survive, quick witted infusion nurse gave me Emi Pin shot which brought me back by increasing my heart rate among other things. I was offered a continuation of lower dose Obinutuzumab later that day or go back to B+R my first treatment. I had read on this forum where many CLL patients had rough first start with Obinutuzumab but continued additional infusions without issues. I decided to continue Obinutuzumab at a lower dosage the next morning. I am glad I did continue because as everyone predicted next infusion of Obinutuzumab were uneventful. Blessings with whatever decision you follow.
On my first Obinutuzumab infusion (100 mg), the following happened 15 minutes into the infusion:
"At 11:50 the patient called to let staff know he started having pain in his left lower back. The patient was very pale and diaphoretic and stated feeling very warm and uncomfortable. A cool cloth was applied to his forehead and a dose of PRN Benadryl given. Patients BP dropped to 90's/60-70's. Chemo was placed on hold at noon. Symptoms started to improve quickly, was no longer diaphoretic, no complaints of chest pain or shortness of breath, reports minor light headedness. BP still on the softer side but other VS stable. Restarted the chemo at 12:15 and VS have remained stable. Hospitalist updated on status and added PRN Toradol which was administered for pain."
After they restarted the infusion I had no further side effects. I completed my 5th infusion last week and have no side effects since that initial go at it.
Note: I've been curious why they call it chemo. Is that accurate?
Colloquially any drugs used to treat cancer are called chemo treatments, but obinutuzumab is an immunotherapy. Specifically, it's an anti-CD20 monoclonal antibody, so it fits into the broader class of monoclonal antibodies, including those used to treat COVID-19, but we don't call those chemo treatments!
"Chemo" as a colloquial use is pretty new, but terms like "heart meds" and "high blood pressure meds" have been used for decades. Many of the drugs used in treated the various mental health diseases use colloquial terms as opposed to their specific classification term, too. It's pretty new for CLL meds, and only has arisen since targeted treatments and immune therapies for the various cancers have been developed. Up until recently (i.e. the past few decades) , anything used to treat the various cancers was what is now being referred to as "chemo immune therapy" (CIT). I haven't seen colloquial use very much until the last decade.
Per the abstract of Obinutuzumab-related adverse events: A systematic review and meta-analysis
This systematic review and meta-analysis compiled all randomized controlled trials (RCTs) comparing obinutuzumab-based regimens with rituximab-based regimens to better assess their toxicity profile.
There was a significantly increased rate of grade 3-4 AE (RR 1.15 [95% CI, 1.09-1.2]), as well as grade 3-4 toxicities including thrombocytopenia (RR 2.8 [95% CI, 1.92-4.06]), infusion related reactions (RR 2.8 [95% CI, 2.16-3.64]) and cardiac events (RR 1.65 [95% CI, 1.11-2.46]). There was no significant difference in grade 3-4 anemia and neutropenia nor in the 3-year mortality rate.
First infusion reactions to obinutuzumab have a reputation for coming on strongly, but it's rather unusual (not impossible) to have them in subsequent infusions. I only had one with my first infusion; the remainder were boring.
You mention they gave you a steroid and benadryl after the reaction. Is that correct? If you weren't given those prior to the obinatuzimab infusion, that could be the issue, as you are supposed to take a benadryl an hour before your appointment and they are to administer the steroid first thing and wait a while before the infusion.
I had a reaction the first time, nausea and I got so hot i was dripping in sweat and high heart rate. But they resumed after I cooled down and heart rate went back down. It never happened again.
I had a bad reaction to O and ended up in the ER for a few hours of monitoring. My blood pressure went down very low so the nurse gave me steroid, brought my chair backwards the entire way and after a while my weakness and tight feeling around my waist and rib cage left. I think the infusion dosage was going in too quick and that my wbc being high also hindered a better outcome. I opted for Rituxan and Venclexta instead though it may have gone better the next infusion. I’m happier with Rituxan anyway. The meds are strong but once our body is used to them, they help to cure us. One day st a time.
Sorry to hear what happened but as you have read from others, you should be through the worst now. I also had a reaction, the rapid heart beat was not nice...you can read about my journey in my previous posts.
Hubby is past his six months of infusions and only taking Venclexta now. He never had side effects or reactions. But our center gave him a large dose of Benadryl prophylactically before starting as well as Tylenol and allopurinol. The first infusion was 1/10th of a course diluted to the full liter and dripped for more than 5 hours. I would think all of these precautions may play a part in outcomes.
My initial infusion was scary initially, but the experienced infusion nurse paused the treatment and talked me through with what to expect. I also had a huge spleen and very large nodes. Subsequent infusions were much easier and at a faster rate.
The administering of obinutuzumab that you state is not the standard recommended by the producers nor the FDA, however, there are allowable variations based on individual circumstance and Doctor recommendations.
Therefore it is fair to consider that there is a possibility that the reaction may have been influenced by starting the venclexta prior to the obinutuzumab. Hence an excessive cytokine release or likewise a pre tumorlysis condition.
This is just one of my analytic patient perspectives rather than a trained medical assessment.
Hydrating adequately prior to, during, and after treatment is helpful.
Wow! I had never heard about this kind of reaction! I had 2 IV treatments without having been on Venteclax yet. The 3rd treatment was cancelled as my white cells were too low due to the first 2 treatments. I then started fever, chills, no appetite...wound up spending 6 days in hospital in septic shock. White cell level came back up, no more IV treatments but have been on Venclexta since 2021. My oncologists have decided to keep me on the 400 mg dose. It took my body some months to adjust but ok now. I wish you well going forward.
Large molecule infusions can cause these type of reactions. I have seen similar when patients were being infused with immune globulin, a normal component of our blood. Our body can react strongly to concentrated infusions of these large molecules. And as many here have reported, repeat doses at slower rates, generally have our bodies reacting less, once it gets over the shock of this happening, and generally accepts it.
My husband was put on allupurinol before he began his O infusions . During his first infusion he experienced very low blood oxygen and was almost admitted to the hospital. Subsequent infusions were administered at a slower rate for 2 weeks then up to full speed, He was fine after the first infusion. He’s experienced more side affects with Venetoclax, edema, lethargy, constipation, but his body is starting to adjust. He has 2 infusions left, and we are expecting they will be as uneventful as the last. Treatment is a journey, but one that leads to wellness thankfully!
I had a severe reaction 13 minutes into the first infusion. I had an anaphylactic reaction and came to with an entire team standing over me. I t took five minutes to bring me back. Confusion and slow to comprehend what happened, I was admitted for a few days. The infusions were showed way down and additional steroids and benadryl were administered for the remaining infusions. No problems after that.
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