Hi. I've asked on cll fb page too but hoping others here may have similar experience and advice. So my dad started obinutuzumab in Jan and within 15min his BP plummeted and oxygen so took nurses and Dr's a while to bring him back round. Dr said that expected with a first time try of this but maybe not always as serious so they put him on 2 weeks of steroids to see if would make aa difference 2nd time and same thing happened within 10min. Dr in ward said he isn't to have it again as life threatening reaction but his consultant wanted to give one more go and took him.off his other meds and steroids again etc and third time was his worst one yet and needed oxygen all day and recuss pads on and t shirt cut but thankfully didn't need to use them. He was told def not getting g again and nurses now refusing to work day he is in if gets again as said he shouldn't be getting that and we all agree. So last few weeks has got venetoclax and doing brilliantly with no side effects and bloods down from 257 to 45. His Dr now wants him to get the obinutuzumab again!!!! Said if bloods low think will be ok but we are freaking out as we have been told this 3 times before.
Has anyone had life threatening reactions to this numerous times then taken ventoclax and tried again and been ok.
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There are alternate adjuvants to obinutuzamab for Venetoclax therapy start ups. BTKI’s also come to mind. Urgent Second opinion would be reasonable here.
This type of reaction is very very common with this drug, and there are a number of ways to manage it. It should be given only in a clinic setting, not a doctor's office because a crash cart/emergency support services need to be readily available. When large molecules are infused into our bodies, our body reacts very strongly. This reaction is seen even when infusing Immune Globulin, which is a normal part of our blood.
The nurses giving this type of medicine generally should have ER or ICU experience, and monitors plus a low patient load, to manage the reactions. I have worked in places where infusions of Immune Globulin wouldn't be done unless a patient was transferred into ICU for the intense monitoring and management needed. So obinutuzumab also needs to be done in a place that has intensive monitoring being done, not a standard hospital room. This isn't like getting other infusions, where the nurses hang the bag, check the patient for a few minutes, then leave while the infusion finishes.
So the consultant is "right" in wanting to try it again, but the ward doctor and nurses are "right" in that it shouldn't be given on a regular hospital ward IMO. The protocol for attempting to repeat using the drug is to premedicate heavily, and reduce the rate of infusion to where it is barely dripping in, while being hooked up to monitors, watched carefully, with oxygen and other support available. Whether or not one should attempt to continue this involves a number of factors, including cardiac and respiratory status of the patient. You don't say where you are in the world on your profile, so it's hard to comment on what protocol others in your region have seen being done.
If you search posts here, you will find many examples of peoples various' reactions and how they were managed. Very few mention they had to stop the drug completely.
Thank you for detailed reply. We are in Northern Ireland. From what I belive, it was given slowly but I'm.not sure how slow. His heart rate reduced and low blood pressure and low oxygen. It wasn't an allergic reaction as he didn't struggle to breathe and no rash but he did get an injection jammed into his leg last time and wondered if epipen as my daughter carries and knows that they go into thigh. I've not seen his notes and he can't really remember what went on until he came around later in day
One person here mentioned it took most of a day to infuse mmmm 19ml? 39ml? if I am remembering correctly. A lot of people find the first infusion is the worst, and after their body has had an entire infusion finished, the subsequent ones went fairly OK. I haven't had this drug so I can't comment.
It might have been an epipen that got injected; adrenaline given to boost heart rate/blood pressure can happen even if it's not an "allergic reaction".
I do remember one instance where a large molecule had to be given on the chemo floor as ICU was unusually full (there was a mass casualty event of some sort, multiple car accident or something). The RN's were NOT happy, that patient kept reacting, they were checking him every 15 mins and that infusion was barely dripped in. He reacted like your dad initially, blood pressure bottoming out. The ICU opened back up later that night and he was transferred back. But the nurses were extremely uncomfortable, they were telling me "we don't have the equipment or staff to watch him constantly like we should be."
I know he told Dr the only way wld try again was if given in cancer unit with nurses around him as they discussed him being in his own room on a ward. He said 100% not doing this because if was like any of these times the last thing on his mind was pressing the help button and worried if toom reaction that it would be missed. He did end up on ward each time for observation during night but he refused treatment on ward inroo.by himself as left alone then with nurses checking periodically
The first time reaction is almost routine. The patient needs to let someone know immediately when they start to feel tense,anxious and unwell! It is then stopped and when patient feels better resume at a slowed rate. No regular nurse should administer this other than a trained chemotherapy oncology r.n. Every time husband has had a reinstitution of Gazyva regimen the first day is always the same but I go with him and get the team immediately if he reacts.
Obinutuzumab was stopped after the first round in my case - not for a reaction but because my platelets were low - and I have been on just Venetoclax since. Can you father just take Venetoclax alone? Ican’t imagine why they keep trying O when his body obviously finds it so difficult to deal with.Chrisx
He is doing great on ventoclax nut they keep pushing the obinutuzumab as said its best for his cll as less side effects than chemo ones. In 2 weeks on ventoclax his white count has went from near 300 to 45 so he thought was done with that but now they want to try again after being told def not getting
I think it depends on the type of cll. They said that particular treatment is most effective for his type of treatment. Said other treatments are good also but there's so many diff types of cll and certain ones better for others.
My reaction to Obinutuzumab at the first infusion, which was in a hospital infusion setting, was a drastic drop in blood pressure. My heart reacted to compensate, then I stopped breathing. It too five minutes for the staff to revive me. I was admitted to the hospital and after a day was given more premeds and the infusion was done at a much slower rate. An hour before the infusion was complete I was given another dose of steroids'. I never had another reaction after the first one. The protocol remained the same for the rest of the infusions with excellent results.
I would love to speak to the other consultants at their meetings as his Dr keeps saying that all Dr's agree he should try again but yet Dr's in the treatment centre tell him def not getting again. She has put him off chemo type ones saying that they could cause severe side effects and secondary cancer. I thought that was a bit thoughtless as it may have to be an option in future and now she has put him off.
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