Obinutuzumab

[Rick48]

I am starting to go into infusions for my c l l the drug that they're infusing me with is Obinutuzumab what are some of these side effects that you have had with these IV infusions and how long should I expect to be on them

[Kvb-texas]

Hi Rick…. I had obinutuzumab infusions for 12 months. Prior to starting, I too was very concerned about side effects. However, perhaps I was lucky, but I didn’t have a single side effect from any of the transfusions. They ramp you up slowly over the first week until you’re at full dose. They also watch you very closely so that they can respond quickly if you do have a reaction. It was actually kind of relaxing for me because they mix it with Benadryl and I often was able to nap through it. I know some people do have reactions, but I think for the most, the reactions are very controllable. I wish you well in your treatment. It worked great for me. I took a combo of obinutuzumab and acalabrutinib and now I am uMRD and feel great. I hope you have a great response and try not to worry about it too much. Let us know how it goes. Kvb-texas

[Dexterdoggg]

Hi Rick. I did my Obinutuzumab treatment with Venetoclax. I had 10 infusions over 6 months. Most people with this treatment get 9 infusions but my oncologist was nervous about doing the first 1,000 mg infusion in 2 infusions with my wbc being at 400,000 so he did it over 3. I didn't have any side effects from the infusions. I did have a reaction to my first infusion which isn't unusual. About 20 minutes into the infusion my ears started getting warm and then the warmth went to the top of my head and I started sweating. I also started to get a little nauseated. They stopped the infusion, checked my vitals gave me a pepsid infusion and a hydration infusion and started the Obinutuzumab again. I didn't have any issues on the other 9 infusions.

[AussieNeil Administrator]

Hi Rick,

Further to your earlier post, thanks for explaining that you are being treated with Gazyva/ obinutuzumab: healthunlocked.com/cllsuppo...

As I replied in that post, obinutuzumab is "nearly always prescribed with an oral therapy - tablets or capsules taken once or twice daily." Obinutuzumab was initially approved by the FDA for use with chlorambucil (Leukeran), a very old oral chemotherapy drug, which was approved for medical use back in 1957. Nowadays, there are much better oral targeted therapy drugs available, which specifically target B lymphocytes, including CLL, sparing other body cells. Obinutuzumab is commonly used with venetoclax, which together can provide good remissions, and this drug combination can be repeated when the remission ends. Are you only being treated with obinutuzumab, or will you also be taking venetoclax of some other tablets/capsules?

The standard obinutuzumab protocol is 9 infusions over 6 x 4 week cycles. You initially have the first full dose split, to see how you respond to the drug, then two more infusions in the first cycle, followed by one in each of the remaining 5 cycles. Some of us have reacted strongly to the first infusion, including myself, then the rest pass uneventfully, though you are likely to be more tired for the following 24 hours. The premeds can make you drowsy; I fell asleep in one of my infusions. It can help to have someone with you, to alert the infusion nurses if they notice anything untoward. Quick intervention helps, after which they slow the infusion rate down. The infusions can take 5+ hours, including the first hour where they wait for the premeds to take effect, so be well prepared with books, music, videos, etc, to keep you occupied.

With respect to long term effects. the main one is that it will take you at least a year after your last infusion before you again begin to make healthy B lymphocytes, so you aren't likely to make antibodies/immunoglobulins in response to any infections, vaccinations or boosters until then. You are also more likely to have neutropenia occur in that year after treatment (late onset neutropenia), so it's very important to pay increased attention to keeping yourself safe from infection: healthunlocked.com/cllsuppo...

By the way, you'll get more responses about personal experiences if you post your questions shared with the "Community only" or 'Locked'. You can edit your post to make it private to just this community as I explain here:

healthunlocked.com/cllsuppo...

Let us know how you go during your infusions.

Neil

[stevesmith1964]

HiI had 6 cycles with Ibrutinib, went from stage 4 to uMRD in 240 days. On twice daily alcalibrutinib now and have been in remission for 20 plus months. Monthly bloods are all stable and 6 Monthly MRD checks are all good. So go for it.

[Steffi50]

Rick, I started last week on Obin and in the first 100ml infusion had two spikes to BP but nothing serious. They kept me in for another night after the second infusion because my phospates and potassium were slightly high. Got to say the second day, tsunami of an infusion was a breeze. I felt nothing during or after. Week 2 infusion tomorrow but all my bloodwork good, no side effects but I do feel very very tired. Hope that helps and good luck. Oh should have said WBC fell 165k to 8k.

[Rick48 in reply to Steffi50]

Thank you so much for your comments on CLL infusions you are very helpful

[CLLBGone]

Good luck with your obinutuzumab infusions.

Many of us here have tolerated it quite well, and the medication does a terrific job of quickly clearing out the trash white cells clogging your system.

As others have stated, this drug is often paired with Venetoclax.

You might consider asking your doctor : what is your entire treatment protocoll, and is it fixed duration, or something else.

[Steffi50 in reply to CLLBGone]

Hi its fixed - one year and paired with Venetoclax. Had a bit of a day yesterday in the day unit because they would not bring me enough water. I am going to contact my CNS, Was yours fixed term?

[CLLBGone in reply to Steffi50]

Yes fixed duration O&V

[Rick48 in reply to Steffi50]

Thank you so much for your reply for me according to my oncologist my treatments are going to last about 6 months my concern is once I start the treatment I'll be more fatigued than I am right now

[Gradyboy in reply to Rick48]

I was the opposite. Ithe fatigue went away with my O &V treatment. I am down to my last month or so on Venetoclax and I get slightly fatigued here and there but I am also 61. I work full-time with zero issues. It really is a great treatment once you settle into it.

[Adlucy]

Hi Rick48,

During my first infusion I got very cold and asked for a blanket. I thought initially it was because the day ward has excellent air conditioning but I did speak to someone else who had the same reaction. I was also very tired that evening. However, after the second infusion of the first infusion I had an abundance of energy when I got home. I had no reaction to my next two infusions so hopefully, my final three will be the same. Despite taking masses to read in with me I do tend to sleep during the infusion because of the antihistamines in the premed.

I don't drive for a couple of days after them but that is my personal choice rather than feel that I shouldn't. I certainly wouldn't drive on the days of having the infusion. In fact I was told not to.

I hope all goes well for you.

[Rick48 in reply to Adlucy]

Thank you very much for your reply it was very helpful

[Skyshark]

Reaction started within minutes of starting first 100mg infusion. A hot swirly sensation around my ears and head, like sticking my head in a hot oven. They stopped it, did a blood test for infections, gave me some antihistamines, restarted at half rate. I ran a temperature of 38C (100F) for the whole of the first infusion so rate never got increased back to 25mg/hr. Finished at half past midnight and temperature back to normal by 2 am.

In afternoon 900mg went in smooth and easy using normal IV rates for 4 hour IV with just normal pre-meds. The IRR on day one wasn't considered severe as they have a slower initial rate IV if the day one IRR is severe.

All other IV's have been fine including last four at unapproved rapid rate, 20% in 30 minutes, then 80% in an hour.

I've driven home 10 miles from each of the 6 outpatient IV's.

[Rick48 in reply to Skyshark]

Thank you so much for your information it was really helpful