My husband had his first test dose infusion of obinutuzomab on Wednesday but seems to have reacted adversely. Second infusion withheld on Thursday and acalbrutinib also stopped. He's been reviewed today, bled, xrayed, scanned etc. No infection source found to account for symptoms.
WCC plummeted since Monday. Hb going up. Neutrophils OK. BP fluctuating, often low despite good hydration. Pulse often raised.
I wondered what experience other people might have to share - anything I should be particularly vigilant for over the weekend?
Thanks
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I assume your husband is on V + O? Initial infusions of O often result in adverse reactions similar to what your husband has experienced. That is why the first couple of O infusions are given with steroids and they are infused very slowly. Fortunately, most patients don’t experience these adverse reactions as they move forward with subsequent infusions. Hopefully, your husband follows the well worn path of patients with initial problems with O but little to no problems with subsequent infusions. Take comfort in knowing what he has experienced is relatively common.
As far as what to watch for over the weekend, I’d focus on chills, high temperatures (100.4 or 100.5 F are the two common cutoffs I’ve seen to call for medical help) and anything out of the ordinary. Make sure you have the number handy to your oncologist/cll specialist to report anything unusual. These emergency call numbers are staffed 24/7 so don’t be afraid to call if you feel it is needed.
You should have a blood pressure monitor, a thermometer and an oximeter handy. It doesn’t hurt to check these measurements on a regular basis and keep track of the results just like your doctor’s office does.
My final piece of advice is to fill in some basic information about your husband in your profile. Note you are his care giver, your country, when and how diagnosed, when treatment started, etc. This information helps to make sure you get good response from the membership.
I am also on V + O. I spent 11 1/2 hours in the hospital yesterday (arrived at 6AM and left at 5:30PM) so I understand your husband’s predicament. My day included two blood tests, an O infusion, a CT scan, a BMB, a doctors visit and a lot of waiting around. Whew. I’m glad that day is over.
I hope your husband sails through the weekend and that his treatments get easier. That is typically what happens so stay positive.
Thank you so much Mark for your reply. It is really helpful hear of your experience and to get your advice. It is heartwarming to know that you and others have given your time to reply an support us. I hadn't expected to need to post. However, the state he was in for 3 days post-infusion1 was worrying. A bit more like his usual self today.Doc intending to try again this week...fingers crossed!
Who'd have thought life would become such a roller coaster when we'd assumed watch and wait would go on for years! Thank you again. Sara
Welcome to our community in this your first post as a carer for your husband. We have plenty more members like you, joining our community to find out how to support a relative or friend.
As Mark/HopeME shared, reactions to the first obinutuzumab/Gazyva infusion are fairly common. You haven't shared the details, so it's hard to say if what he experienced is unusual, or that the place where he is being treated isn't familiar with obinutuzumab infusion reactions. I developed uncontrollable shakes during my first infusion. The nurses paused the infusion and eventually restarted it with no further incidents. I completed the remaining 8 in my clinical trial with zero problems. You'll find many more shared experiences here: healthunlocked.com/cllsuppo...
You'll also get more replies if you edit your post so it's private to just our community and not capable of being discovered in internet searches. (You might also feel more comfortable sharing what happened.) This post explains about private (locked) and public (unlocked) posting and how to change your post to private: healthunlocked.com/cllsuppo...
As Mark mentioned, providing more background information in your bio about your husband will help our community better support you both. Just select this link healthunlocked.com/profile/...
Thank you so much for your reply. It is so helpful hear of your experience and heartwarming to know that you have given your time to reply an support us.I'm a bit naive with the tech side of things so I'll try to hit the right privacy buttons next time! Best wishes, Sss
I’m so sorry he had such issues. I also had a severe reaction on my first attempt. I go to an infusion center, so you go in the morning and are out when you’ve been cleared. My oxygen level dropped, irregular heart rate, shakes they called rigars. I only received 1.25 mg, so it happened immediately. I was given 50mg of Benadryl, a steroid, and sent home 5 hours later with an EPI pen. I never had a fever. A few weeks later, they tried Rituxan. They did it really slow 8 hours because they stopped and restarted a few times, It was a long day, but was successful. I’ll do my 3rd dose in ten days and expect to be done in 5 hours without issue. I am also on Venclexta and seem to tolerate it ok.
I hope you find the right combination to get the optimal results. Keep asking questions. Best of luck.
Thank you so much for your reply. It is really helpful hear of your experience and hear of alternatives. I had expected a treatment change but it seems that the team want to continue with O. It's heartwarming to know that you have given your time to reply an support us. Thank you. Best wishes for your health journey.
I had a similar physical response during my first infusion. After an hour the process was stopped and they repeated the process the next day at a much slower rate.
I was told it is quite normal after it happened and I can understand why I was not warned prior. I also know now why the nurse was on hand and attentive during those early minutes.
Ultimately the next day I was able to complete a full infusion at a slower rate.
I wish you well and hope you ‘acclimatise’ quickly.
Agreed...more warning would help! I think the unit we're attending is small and not used to O infusions!Thank you so much for replying, it's so helpful hear of your experience and heartwarming to know that you have given your time to reply an support us.
I’m sure you’ll be fine. Take heart, this site is wonderfully supportive and I’ve benefited from people’s advice and experiences.
I had 11 months of treatment and am now 3 months clear with no signs of cancer cells in my blood. I am so grateful for the NHS and that there are people out there who strive to develop treatment and hopefully cure sufferers for good.
I had a reaction to my first obinutuzumab/Gazyva infusion (I’m on O&I). I was given Benadryl and steroids prior to the infusion but still had a reaction of sudden nausea. They stopped the infusion and gave me adivan .5mg then restarted an hour later. I was fine for the rest of the infusion and fine for all of the future infusions which included the adivan in each which allowed me a nice nap during the infusions.
Hi Julie, Thank you so much for your reply. It is helpful hear of your experience and heartwarming to know that you have given your time to reply an support us.Hopefully next week will be easier.
like wise, I had reaction to first one and was admitted with infection. Everything since has been fine. Agree with above - thermometer most important tool and shivering good thing to watch out for. If you are worried call the emergency number for the unit. They are absolutely wonderful ! Good luck
Wise advice! Thankfully some improvement today and the shakes and fever have stopped.It is so helpful hear of your experience and heartwarming to know that you have given your time to reply an support us.
First off, welcome to forum. My first infusion caused anaphylactic shock in which oxygen and blood pressure dropped like a rock. Was given Emi-Pin which brought me back to life. Decided to continue with obinutuzumab next day at slower rate, glad I did, everything smooth after that. I have finished all my Obinutuzumab infusions. Blessings.
Thank you so much for your reply. It is so helpful hear of your experience and heartwarming to know that you have given your time to reply an support us.You were very courageous to go ahead after an anaphylactic reaction. It is reassuring that things went smoothly from there. Must admit, I was worried that it would sensitise the body and make the second time worse, so I'm really glad to have heard from you.
My first infusion was difficult, but I had a great nurse who explained what to expect. She slowed the flow pace a bit and I got through it. Subsequent infusions were easy.
Thank you so much for your reply. It is so helpful hear of your experience and heartwarming to know that you have given your time to reply an support us.
Specific reaction symptoms are important, I think.
The doctor at M.D. Anderson said that I had some evidence of spontaneous tumor lysis even before treatment - high uric acid for several month (no gout), and extremely varying ALC on roughly monthly testing - > 20% difference in ALC up and down.
So they gave me allopurinol a month before treatment started, and was guzzling a gallon of water a day, and continue to do so after the start of the trial. Bone Marrow Biopsy saw 80-90% marrow involvement, 85% Bone Marrow Lymphocytes the day before the first infusion.
So my doctor at M.D. Anderson decided to admit me for the first partial dose of Obin. I had extreme diarrhea within 15 minutes, so they paused. They restarted at a slower rate, and my temperature slowly climbed to 102.7 and blood pressure dropped to 80/46. The first 1/10th dose took almost 8 hours to finish. They kept me in the hospital for 2 more days, and drew blood every 4 hours. So it wasn't the TLS (tumor lysis syndrome), it was an immune reaction to the Obin - but not anaphylaxis. I successfully started pirtobrutinib (LOXO-305) later the night of the reaction, after all symptoms except fever had subsided. I had ice packs in my armpits several times. They skipped the second 9/10ths for Day 2 infusion entirely. I was discharged, and had no further trouble.
This week, they again decided to admit me for the Day 8 infusion, which they broke into 2 halves on successive days. I had no trouble whatsoever. I was discharged to enjoy the boost of energy from the steroid part of the infusion. That wore off after about a day, and I'm back to my cranky self.
I'll be heading back this coming Wednesday, March 8, to do the Day 15 infusion as an outpatient. The trial adds Venetoclax at the end of the month.
Thank you so much for your detailed reply. I don't fancy the ice packs never mind the other symptoms!! We're back this Wednesday for round 2 so might be a week behind you in the treatment schedule. The idea of splitting the dose this week sounds good... I might ask/suggest when I take my husband for his blood tests tomorrow. Sounds a sensible strategy.
By the time I was jalf way through the first half of the 2nd dose with no problems, I asked if they could just finished the whole thing that day. I was in-patient for it, and they said they couldn't or wouldn't take the risk.
I look forward to my first out-patient infusion experience this week, and driving home to New Orleans the day after for about a week and half until I must be back to start Venetoclax ramp-up and blood tests for TLS. I feel like such a test pilot.
It gets better with time. I have two Obin infusions left and then I’m done except for continuing V for 1-2 years depending on how well I do. You’ll get through this. Stay positive.
Finished O and V before Christmas. I had a nasty reaction to O when I started. It was suggested to me this was a good thing and that the meds would more likely to have a good outcome with such a reaction. It was just a case of slowing down the infusions which was frustrating time wise but safer.
My CLL has been pushed back and the hope is I will get three years before I need further treatment which is great. The only downside is that the V and O seems to have destroyed my immune system following antibody tests. Safe inoculations and permanent antibiotics have helped reduce the number of infections I pick up.
Dave, thanks so much for taking the time to reply. I am so heartened by the support and wisdom of the forum members. Fingers crossed that our experience is like yours and others'...ie rough first time but easier after that. Thank you again. Sara
My IgG was already 336 several weeks ago. I worry a bit about neutropenia, because that's an unexplored thong for me. We have 2 cats, and my wife gardens, so I'll be resisting rough play with the younger cat, and wearing a mask in the garden. Mostly, im worried about fungi there. My wife has tended tge litter box for several years now.
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