Starting Obinutuzumab infusions

[BarneyFife]

I have been taking Imbruvica for @3years for CLL with good results. I'm going to start the Obinutuzumab infusions in January. I've had very little side effects from the imbruvica and am wondering how I might react to the Obinutuzumab. Any advice on what to expect and on diet, etc? I'm a bit apprehensive but in a year, I hope I can be finished with these medicines. Positive thoughts and prayers for all who are dealing with cancer. I'm so thankful for the advancement of present treatment options and for those to come.

[HopeME]

Hi Barney:

I’m going through Obin infusions right now and they aren’t terrible. Tired at the end of the day but that has been the extent of my side effects. In my case, I’ll be adding Venetoclax in a few weeks but so far Obin on a standalone basis has been uneventful.

Best,

Mark

[BarneyFife in reply to HopeME]

Thanks Mark. Glad to hear that you are doing well. Take care.

[HopeME in reply to BarneyFife]

Barney: The other thing I’d add is your reaction to O should be less than mine since I had 95% infiltration of CLL cells in my bones upon starting O. Tiredness the day after treatment is my biggest complaint. You on the other hand have been taking Ibruvica for three years so your disease burden is low. The O in your case is being used to eradicate a few CLL stragglers and position you for a drug holiday. Based upon these facts I’d be surprised if you have much of any reaction.

Best,

Mark

[BarneyFife in reply to HopeME]

Thanks Mark, I will let you know. Have a great evening.

[Pageboy in reply to HopeME]

I agree. I started Obin after one year on Acalabrutinib and bloods ‘normal’. On my last cycle now (slightly delayed due to having Covid). I have had no reaction at all to the infusion. It is administered really slowly for a few cycles to allow your body to adjust to it and you’re well monitored just in case. I can feel a bit tired a day or so after but nothing more then general fatigue. Good luck.

[BarneyFife in reply to Pageboy]

Thanks. Good luck to you. Take care.

[Big_Dee]

Hello BarneyFife

I have 2 more rounds of Obinutuzumab infusions to go yet. Make sure to have someone watch you for your first Obinutuzumab infusion. My first round caused anaphylactic shock, infusions after that were uneventful. Blessings.

[BarneyFife in reply to Big_Dee]

Thanks for the heads up. I appreciate it. Take care.

[AussieNeil Administrator]

Indeed the answers to Mark's question may help you understand the treatment cycles. The first 28 day cycle is unusual in that you have 4 infusion days, then it's just one infusion per cycle and you are done in under 6 months with a total of 9 infusions.

healthunlocked.com/cllsuppo...

If you are going to experience any difficulties, it's highly likely to be the first one, then the rest are nearly always routine. I developed the shakes during my first infusion - couldn't stop kicking my legs. They stopped the infusion, waited and restarted it and i was fine for the rest of that infusion and the remaining 8. The first infusion was the turning point in my recovery on an AVO trial, I began 3 years ago. Got me to uMRD.

Don't worry about diet; just eat per your usual routine, but do make sure that you are well hydrated before your infusions. You'll probably want something to eat during your infusions, as they take about 5+ hours, including the first hour of waiting for the premeds to take effect.

Neil

[BarneyFife in reply to AussieNeil]

Thanks for the info. I truly appreciate it. Take care and glad to hear that you are doing well.

[RHHR]

Hi Barney,

I completed the Obinutuzumab + Venetoclax treatment in July and happy to report I reached MRD negative. I was admitted to the hospital for the first infusions and I did have a reaction to the first one like they said some do, but the doctors were there and got it under control quickly. For the other infusions, I was tired and my numbers were pretty low for most of the treatment (WBC, platelets in particular). I was also achey after an infusion but this only lasted for maybe 24 hours. My hair thinned out considerably but that was all and is back to normal now. I will say that I felt like I had turned some kind of corner 6 months after completing the infusions and found out then that this is likely around when it is completely out of your system. Wish you all the best, a MRD negative report & to be done with meds in a year.

[BarneyFife in reply to RHHR]

Thanks for the info. Glad to hear that you are doing so well. Take care.

[stevesmith1964]

Hi

I had 6 cycles of O and I when I was diagnosed stage 4 in Nov 2020, had no issues. I was clear and in uMrD in 243 days. I am now on acalabrutinib daily and my monthly bloods are good.

[BarneyFife in reply to stevesmith1964]

That's great. Glad to hear that you are doing well. Take care. Thanks

[jacjar1]

O treatments dropped my WBC to normal after 3 weeks. Side effects for me is constipation and achiness. But rather uneventful I have 2 treatments left then its just Venclexta for another 10 months.

[BarneyFife in reply to jacjar1]

Thanks for the info. Good luck with your treatments. Take care.

[Gisygirl]

I was on Imbruvica for 6 years when my numbers started to go up. Was started on Obin infusions .had 2 but they made my white cells drastically dropped so #3 was not done. Then I started with Venclexta. I wound up in hospital 6 days in septic shock, fever, chills, no appetite ( easy way to drop 30 lbs) .. continued on Venclexta which took several months for my body to acclimate but never had the infusions again. My doctor has decided to keep me on Venclexta longer than 12 months. I have monthly bool work and quarterly doctor visits. Seems good now. Good Luck to you!

[BarneyFife in reply to Gisygirl]

Thanks for sharing your experience. Hopefully next year will be better for you. Take care.

[OTBCdave]

I had been on Acalabrutnib for 16 months before I started on Obinutuzumab. I too haven’t had any side effects apart from a little additional tiredness for a couple of days after each infusion. I started Cycle 2 today which was 4th infusion 4 weeks after starting this treatment.

Hope you have a similar uneventful experience

Dave

[BarneyFife in reply to OTBCdave]

Thanks Dave. Good luck with the rest of your infusions.

[02Raspy]

I started Obinutuzumab yesterday. 100 mg. It was fairly rough. Had an issue early on. Blood pressure went up. Oxygen down. Hard to breathe. A large team of Dr, nurses, pharmacist jumped on it and added steroids and Benadryl to the drip plus oxygen and things settled down. I ended the day with nasty cramping in my legs that went away later last night. Today I had 900mg with no issue. My advice is to drink a Ton of water, then more water. I have had 120 oz so far.

[02Raspy]

also, I am golfing tomorrow. Feel great.

[HopeME in reply to 02Raspy]

What you experienced is fairly typical with the first infusion of Obin but thankfully as you note it usually gets easier. Be careful with the golf today. The day after your 900ml infusion could be tougher as you typically have a lot of cancer cells dying. I was very tired after my second as well as after my third infusion. The heavy hydration will help the process.

Good luck,

Mark

[02Raspy in reply to HopeME]

82. 38 on the back nine.