First dose of 100 mcg July 8th and 900 mcg July 9th. After treatment never came back to feeling 90-100%. This past Tuesday returned for round 2. Never made it out of blood draw room due to high heart rate. Got admitted and higher than normal heart rate 120-130. Blood pressure dropped 89/40. Extreme high fevers 103’ . Lots of ice packs is and iced washcloths to help fever as Tylenol and Motrin were not reducing fever. I’ve had ct scans EKG’s, echos, transfusion, antibiotics. 100’s of blood test and cultures. All negative. Now on prednisone, massive rash. Infectious disease doctors, my oncologist, dermatologist all involved. They are now thinking it’s a"delayed reaction" to the obin which a small 1% risk get. Just got released out of hospital after a week. Very unsure of my next step. Has anyone experienced this??? Canceled next treatment pending review and risks. Scary stuff.
Has anyone experienced this?
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I had rigors with my first day of Obi transfusion in 2015 and a temperature that spiked. 36 hours later I had a heart attack (although that wasn't caused by the infusion; I had three severely blocked arteries that had gone undetected in the screening process for the clinical trial).
I was put into the cardio ward where I had a high temp for a week, for which I was given IV antibiotics, which delayed having five stents placed.
A few infusions later, my heart rate went to 135-ish, and I was put on beta blockers. The haematologists were surprised because most reactions occur in the first or second session.
However, my experience was not nearly as dramatic or harrowing as yours. I hope you can get some answers.
Just shows how differently we can all react. I didn't make it beyond the first 20ml but it made a big dent in the ALC. I was extremely cold, plunging blood pressure and heart rate. Switched to Rituximab the following week then 2 years of Venetoclax. Now into 2nd year of remission. Fingers crossed.
Very sorry to hear about your and anyone else's severe reaction to Obinutuzumab. But just to offer hope to other people deciding whether or not to commence this treatment program. I have had the eight Obinutuzumab infusions, and ten Venetoclax cycles with only very mild side effects. I wish you well for the future. Michael.
Is the rash itchy or is it just flat red blotches/spots? It could be petechiae from your low blood counts. My husband had an increased heart rate during his first infusion, but they got it down and slowed down the infusion rate. He was fine from then on. He did have fevers during other chemo treatments, but like you, his cultures were clear. The doctor concluded it was febrile neutropenia or your body's immune response being triggered by the obinituzumab. If you had a heart attack the following day, your body ws likely under a great amount of stress, so it made sure to make you aware.
Waiting until you feel better before continuing treatment may not be an option if your body isn't coping well on its own. You may indeed need treatment before you start to feel better. I would see what the doctor advises and make as informed a decision as possible about whether to move forward. My husband would start treatment when he was very poorly and end the chemo cycle even worse off, but he ultimately achieved remission. It's very difficult to know whether these treatments are actually helping because you often feel worse before you feel better. And better is sometimes just improved counts while you still feel very fatigued and nauseated. Maybe post on here again after you get advice from your doctor. If you are stable they will likely recommend to go forward with the treatment, but with a slower infusion rate.
It is an amazing drug. For me I just had a reactive delayed response. Nurses are amazing they know what to do. I’ve always had funky allergies etc an the chances that you have a similar reaction are “0”. You’ll do amazing. I’m feeling quite well now just a bit week and wired from steroids.
Not exactly the same symptoms but after the 100 I reacted badly so they decided to pause. A month later, as an inpatient, they did 100/900.
I was in hospital for 10 days with a CRP of 200, very low platelets and surging temperatures. Oxygen stats were very low, pulse dropped to 40 and had some scary low BP readings. Needed strong IV antibiotics, electrolytes, platelet infusions and strong painkillers to deal with bone pain. They confirmed that Obinutuzumab was not going to be repeated.
Most of my bloods had dropped to normal so they started Venetoclax immediately while in hospital and, after ramp up, I started Rituximab. Just had session three, given at high rate, and all infusions have been uneventful.
I was on Ibrutinib for about 6 months and kept getting Pneumonia. Ended up in the hospital for several weeks. They did Bronchoscopy, Lung biopsies, all came back negative. When they stopped the Ibrutinib, I started getting well. So I had a delayed reaction to the chemo Ibrutinib. My oncologist said it was a very very rare reaction. But it probably saved my life because in the testing they found I had kidney cancer, which was removed a couple of months later when I was well enough for the surgery. As others have said, we are all different, and our bodies react different to the different drugs. Praying you get well soon and they can find a different treatment for you.
yes. That was back in 2018. Since then, I was on V&O for 12 months, was in remission for less than 12 months. Treated with V&O again, but it depleted my immunity and I spent two weeks in the hospital while vacationing in Alaska with pneumonia and RSV (I had to fly home and friends drove my truck and RV 3,500 miles home). So stopped the V&O and I’m on my fifth chemo regimen now. It seems to be working. But you never know for how long.
I am thankful for each day I can enjoy life. We don’t know what tomorrow will bring.
I started treatment with O & V at 08.00 last Wed 17th in the Haematology/Oncology Day Unit. After the pre-meds I was started on the 100mg Obinutuzumab infusion, after 30 mins my heart suddenly started pounding & I came over very nauseous, so immediately pressed the button for help. I felt extremely sick, retched several times to no effect & started a drenching sweat. They stopped the infusion & gave me oxygen & other treatments for low blood pressure etc, I also had a very red rash on my lower right arm above the infusion cannula.
It took me 90 mins to feel anything like normal & at that point they gave me an ECG which was fine . My blood oxygen was still low so I was taken for a chest x-ray as the duty doctor had heard crackling in my lower lungs. The chest x-ray cam back ok, but they decided to give me a diuretic infusion to reduce fluids - this makes you pee like mad every 15 mins. The red rash on my arm had gone by now but Blood Oxygen was still only 89% without oxygen.
I was told that they got 25mg in to me in the 30 mins - which was far too fast a rate!!
I was taken up to the ward for an overnight stay & managed to be off the oxygen by 21.30, the next day they just observed me & did another ECG which was fine. I was then told by the Junior Doctor that they had decided to start the 900mg infusion the next day on the ward but at a very slow rate, I was given the pre-meds & had a good night sleep.
The next morning after a shower & breakfast the duty consultant arrived & told me that they had now decided to scrap the infusion as the machine wouldn't work with infusing 90mg at a very slow rate to start with - I was sent home.
On Tuesday 23rd I had a telephone conversation with my consultant, she is shying away from trying Obinutuzumab again due to the adverse reaction& is now looking at a Venetoclax ramp up, then Rituxumab infusions, then Venetoclax which I presume will be over 24 months instead of the 12 month O & V. I will be having a bllod test & Telephone consultation in 4/5 weeks to decide on what treatment I should have.
I have queried the 25mg in 30 mins rate & she is going to look in to that - I am also contemplating being referred to a CLL Specialist but this will just delay any treatment.
I feel like a cll specialist is so important when we have issues like this. I had similar reaction to the original doses. They did however tell me to separate the serum responses as they are 2 separate issues. All the best to you.
UPDATE: My blood work is perfect. I am now getting blood drawn every 2 weeks to see if it fluctuates. Doctor says a rare outcome. If blood starts to fluctuate again he will not let wbc go over 30,000 and will more than likely choose an alternative option due to my reaction.
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