cycle 1 day1 V & O

[Jim-Boy]

sadly did not according to plan and hope, 2 hours in suddenly freezing cold, dizzy, ended it for day, had an adrenaline shot to help, back tomorrow for another go, anybody else had similar experience, how was day 2 for you

[Spark_Plug]

Although not in treatment yet, I have heard of similar rough starts. Do not be disheartened. Your body just realized hey this is new and it seem too alien for me to handle. Many others then smooth out, or if their treatment is to harsh compensate for it. Try not to worry. just rest up you had a workout today you deserve a break.

[Jm954 Administrator]

don’t despair, this is not unusual and the second day usually goes smoothly. You’ll probably go to sleep!

[Jim-Boy in reply to Jm954]

Now that sounds better, that adrenaline jab certainly smarts a little 🙂

[SofiaDeo]

It's very common for bodies to react adversely to large molecule infusions. It would be more unusual for someone to have zero side effects from their first obinituzumab infusion.

Gamma globulin is a large molecule that exists in our bodies, and occasionally is used therapeutically as an infusion. A patient needs to be on a cardiac monitor & blood pressure checked roughly every 15 minutes (or be hooked up to a machine that would sound an alarm for blood pressure changes) when infusing this large molecule, that's a normal component of our bodies.

Concentrated infusions make us react, pure & simple. I hope your Day 2 attempt goes more smoothly; it does for most.

[Deilginis]

I had a similar experience, freezing, vomiting , generally incapacitated, took me ages to get it together to phone the 24 hr help number I’d been given and it rang out. Amazingly, I managed to drive in to hosp the next morning. BP was 70 over 40. They deferred 2nd day dose for a number of days and kept me in. All uneventful thereafter. Just make sure that if they don’t keep you in you have someone at home with you. Making that one phone call took all I had, and it didn’t even have a voicemail.

[Jim-Boy in reply to Deilginis]

Wow, quite an experience, sorry to hear that, felt ok last night at home and again this morning, so here goes for day 2, fingers crossed for the day ahead, thankyou tfor sharing you experience

[Deilginis]

I’ve since completed the full treatment of V&O and am in remission, so that v unpleasant day 1 is well worth it. For what it’s worth, crushing fatigue and, I think, a touch of chemo brain, were my ongoing issues. I bought a calendar with boxes for each day so that I could see what arrangements I had made for that day. It helped. They didn’t realise my ferritin levels were continuing to drop all the way through treatment so if that sort of fatigue happens to you it might be worth asking them to check those levels. Now enjoying walking again and living my life. 😁

[Jim-Boy in reply to Deilginis]

That’s great news, I’ll now go into today with more confidence, I too have started with a calendar for appointments, meds, it’s all quite complicated and lots to remember, long may that remission last and enjoy every day, best wishes

[RedWyvern]

Hi Jim-Boy

Hopefully this will be your only hiccup, but it’s also the reason they ramp it up slowly.

I’ve just completed my V&O and feel great now, so it’s well worth the hassle in the long term.

I set alarms on my phone for all the different pills 💊 I was taking, which seems to have helped me through the brain fog and stopped me missing taking them.

Hope it goes smoother today

Andy 🏴󠁧󠁢󠁷󠁬󠁳󠁿

[Jim-Boy in reply to RedWyvern]

Hey, glad to hear your telling well, Thankyou, it appears it is often the case for many on day1 so fingers crossed , have high hopes for this treatment and approached the start with genuine excitement, feel great this morning, onwards and upwards, best wishes

[Myvi]

Jim boy.Iam sure we all hope your second day is more successful. In our district we are admitted to hospital for first infusion , Keep your spirits up,Every patient has a different medical history.

Some may start having not taking any other medication,others taking a pharmacy of drugs ,being unwell from other medical issues before starting treatment and all ages with different home situations So it must be impossible to relate to others treatment side effects overall .

You will be looked after and once you body accepts your treatment.the weeks and months pass on your calender.from weekly bloods to monitor you progress,before next infusions,then to commencing venatoclax to go on to just monthly infusions and daily oral drugs. Thr research for this combination is early days but overall very reassuring,

Your Specialist nurses at the end of your phone to answer your concerns.

Later You will be reassuring another person,

Let us know how your second day went .

Myvi.

[Jim-Boy in reply to Myvi]

Thank you , I will , yes I do appreciate we are all very different but with a lot in common also with a very aligned hope, feeling positive for today, bring it on

[prbs2707]

Hang in there. I had awful experience with day 1 infusion of Obinutuzimab but from day 2 on it went without a hitch. My doc told me that the body basically goes "Whoah...what the f*** was that" when it first encounters O as it's such an unknown for your system. After that the body accepts it.The results are amazing, you should see all the bad numbers numble within days. Good luck and best wishes. Patrick

[Jim-Boy in reply to prbs2707]

Thankyou, very reassuring, agreed i the body said exactly that

[Pearlpink]

I was very ill on day 1 because unknown to me I had a urine infection. I was back in it a few days later with no problem for the rest of the year. I reacted very quickly to it and after first week was virtually normal blood results! Good luck! They monitor you like mad and adjust it for you. 👍

[Jim-Boy in reply to Pearlpink]

Great to hear things are good, 🤞feeling to good to move on today, appreciate the reassurance, long may you feel well, best wishes

[LynnB1947]

My first infusion of obinutuzmab's 1st cousin, rituximab, took 13 hours because of side-effects. After the 1st infusion, I had 19 more with minimal side-effects. As someone else said having side-effects to the 1st infusion is more common than no side-effects. I had fever, nausea, & chills. The following infusions only took about 3 hours with no problems. It has now been 10 years since I have received a monoclonal antibody so I'm sure I would have an reaction if I were receive an infusion today.

[New-bee-cell]

Hope day 2 is going a little more smoothly, Jim-Boy 🙂🤞. My doctor told me “everyone” has an infusion reaction to Obin, so I was pretreated for 5 days with antihistamines and steroids and uric acid lowering meds. On the day of, they also gave me acetaminophen and more steroids and antihistamines. I slept off and on during the infusion. Vitals taken every 30 minutes. My only reaction was drowsiness and full body muscle aches about 6 hours after the infusion ended. An extra strength acetaminophen took care of it. Next day was even smoother. Cycle 2 infusion went without a hitch, and I actually found myself feeling a bit more energetic than pretreatment. When the Venetoclax started, some fatigue and GI symptoms started, but are manageable. Heading out for Cycle 4 infusion today.🙂

[Jim-Boy in reply to New-bee-cell]

Thankyou, all good today, back on track, hope cycle 4 has been kind to you, best wishes

[Sojomama13]

Hi Jim-Boy,

I also had a very rough start. While I was getting the reaction, I was really afraid. My Team said that we would try again in a few hours. 😳 Actually, I was so anxious and very apprehensive about trying again. My Team recommended that I get pre-meds prior to infusion. Even though they said that it sometimes does happen and the majority can tolerate with pre-meds, I was nervous.

Turns out that I didn’t have to worry, I tolerated that infusion and the rest really well.

You got this! 💪🏼

Sandy

[Jim-Boy in reply to Sojomama13]

Day 2 completed and all good, I understand your apprehension, I too was today, but all is well that end well, take care

[skipro]

Awe,

I had a really rough go with the test dose of O,

and was tachycardic, lightheaded, dizzy, and even fell a couple of times and hit my head. This went for 6-8 weeks after my test dose.

Fortunately, this did not worsen after any of the subsequent dosages.

I do know of people worse than either you or I and ended up in the hospital for days after the test dose.

but everything I've studied, and everyone I've spoken with, have all stated that the reaction occurs only after the first dose!

God bless you and good luck to you

Ski pro

[Jim-Boy in reply to skipro]

Wow, that was a reaction, makes mine seem tame, home now after day 2 and went without incident for which I am delighted and not sure what plan b would have looked like, all good again

[skipro in reply to Jim-Boy]

awe so happy for you

[Skyshark in reply to skipro]

You must have missed this. There is a 3 % risk on day 8 infusion and a small risk remains throughout. Risk of serum sickness increases with exposure.

55933-bcmed.s3.amazonaws.co...

Obinutuzumab IRR risk

[Skyshark]

Was the first day on slow start for IRR risk, 6mg/hr > 12mg/hr > 18mg/hr > 24mg/hr or were you on a flat rate 25mg/hr?

Glad today has gone well.

[Jim-Boy in reply to Skyshark]

Thank you, It was a flat 25/mg

[BigBrownB]

I started V+O at the beginning of December and had a similar experience!

My first IV of Omnituzibab…..after half an hour of the Omnituzibab they stopped the IV as I became dizzy and blurred vision. Had steroids and antihistamine, waited half hour then went again.

After another half hour I felt sick, so they stopped it again, more antihistamine and steroids and a wait.

Last time of trying back on the O and after 40 mins a started violently shaking, I was frozen but had a temp of over 39! I was admitted for 2 days so they could monitor and try again with the subsequent IV’s!

I’ve had 5 treatments of O now and after the first one haven’t reacted again!

I’m now on the venetoclax tablets (started taking 200mg yesterday) and have another IV in 2 weeks. No reaction at all to the tablets 👍🏻

Good luck with the rest of your treatment and hope you have no more reactions.

[Jim-Boy in reply to BigBrownB]

Thankyou, I agree with the violent shaking, I think I understated it as shivering, rigid with it too, strange experience, but hey ho, done now, onwards and upwards now, great to hear you have good progress through the cycles

[JustAGuy in reply to Jim-Boy]

I'm happy you've made it through this one! You should nevertheless be alert tonight to any fever. After my day 2 infusion, I felt fine. That night I had fever over 101.4 (38.5). This was the temperature they told me to come to ER (A&E) for. I ended up hospitalized for possible sepsis. So be aware of your vitals even after the infusion done. In advance I purchased a good infrared thermometer so I can take my temperature frequently and quickly. I highly recommend one.

[Classicaljazz in reply to Jim-Boy]

I appreciated having IV high-dose steriod and other IV pre-treatment medications prior to my first obinutuzumab infusion. There was just once instance that day with shakes and dizziness for which the nurses stopped the infusion briefly, then restarted it more slowly without any more issues. I got IV pre-treatment meds for the second day infusion, and then just took Claritin or Benadryl with Tylenol an hour or two before the other infusions. I completed the 6 months of infusions and the year of venetoclax with few side effects and am so happy to be well more than 3 years later.

[Jim-Boy in reply to Classicaljazz]

I was also administered plenty of pretreatment in prep for the chemo

[Skyshark in reply to Jim-Boy]

What you are describing is rigors (us spelling).

[Ann1412]

I had exactly the same reaction to “O” on day one back in July.

I was told up to 65% people have a reaction.

Mine was stopped after only 2 minutes!

But I was given another go after 4 days and everything has gone fine from that day to now.

Bloods after just that initial 2 minutes showed a WBC reduction from 88 to 17… simply amazing.

Apparently it’s your body reacting to the “poison” but it usually then accepts that it’s actually good poison!

I’ve now finished my 6 “O” infusions and have “V” only until July.

Results for me have been unbelievable. Today I was told “no CLL cells present” after a flow cytometry at my halfway point.

Good luck with your second attempt.