Obinutuzumab and a bit of worry.

[Nama-8]

Obinutuzumab and a bit of worry.

I had the first two parts of Obinutuzumab last week, Tuesday and Weds. First day was rough as was the second night and Thursday due to a steroid hangover.

My concern however is extreme fatigue beginning Friday.

I am generally a fairly tough cookie and can push my way through discomfort however, my body feels like I've run up an incline and my arms and legs feel like sand bags. I have little appetite and am happy to lay in bed dozing with occasional trips to the kitchen for water. Last night I popped a peanut MnM in my mouth and my tongue was on fire.

I can't get warm but that could be because it's freaking cold out. I feel like I'm being a big baby and need to shake it off, then occasionally feel like maybe something's wrong and if I notified my Drs office they could help fix it.

Has anyone else suffered extreme fatigue at the start of Obinutuzumab?

[Justasheet1]

Nama,

You’re passed the worst of it. Here’s my experience:

healthunlocked.com/cllsuppo...

Jeff

[cllady01 Former Volunteer]

Your question about connecting with the Dr. is one I would be acting on.

Regardless of anyone else's experience, we are all different. You have had a delayed reaction, not the apparent situation for most, which is more likely to be while we are being treated in the infusion area.

Please do contact you Dr. You might take your temperature before you call, so you can answer that possible question. If you are fever free, yet feeling shivery--you could have a fever without it being registered.

I hope you can get to someone for answers. Please let us know how your contact goes.

[Annie1920 in reply to cllady01]

I did register a low temperature at the beginning of Obinutumazab treatment and spent a day in hospital

[cllady01 Former Volunteer]

As for the fatigue with Obinutuzumab, I had that at the beginning when they had given met Benedryl with the infusion. My first reaction to steroid is often to be hyper and have trouble staying still.

[DanBro1]

Been there and done that. My first two weeks ramping up on Obinutuzumab I slept and very lethargic during the day. I also experienced chills. This was a monthly two day routine whenever I had my infusions. Bad part was sitting in the chair for 5 hours getting infused each month.

[prbs2707 in reply to DanBro1]

Hi your post is like deja vu for me, Exactly how I felt when I started in April last year. The good news is it gets so much h better. First few infusions are the worst (expecially the first see my profile). Hang in and do rest it's your body asking for it. Important thing is to drink plenty and keep an eye on your temp. If you get a rise in temp or develop a fever ring your care team I immediately. Lots of luck it's an amazing drug

[Smac29]

I had fatigue for the first few weeks to a month. It does get better! I also had the chills. But definitely call your doctor and take your temperature. For me I was always cold for about a week after my infusions for some reason. Good luck! It really works very well.

Sheryl

[Sumoldbloke]

I also started on Obinutuzumab last Tuesday. First hour of the low dose 100mls was fine then my blood pressure spiked to 190 and I became very flushed and clammy. They stopped the meds for half an hour or so gave me more steroids and an ecg then started again at the same rate it happened again withe another bp spike so they slowed it down and I didn’t get the full dose . In the evening I felt exhausted with aches and pains. Next day had full 900 mls dose without any ontoward events. Felt fine since and my spleen is already shrinking. No problems since the first day. Next infusion on Tuesday Hope you are feeling better now and feel free to compare notes as we are running in parallel.

[Fergusaims in reply to Sumoldbloke]

That's also my experience, except my BP plunged to 55. Fine on day 2 and have sailed through the rest and am now 6.5 months into O&V with little side effects.

[Sumoldbloke in reply to Fergusaims]

That is good to hear . I am a little apprehensive about Venetoclax.

I am encouraged by your experience and hope it continues to go well for you.

[nvp815]

I will be starting this medication in the next week or two so I read your post with much interest. I hope you are feeling better soon. I appreciate knowing the potential side effects. I would give the medical team a call just for reassurance if you are still feeling unwell. Best of luck going forward. Warm regards,

Nan

[CLLBGone]

You might want to consider getting tested for the flu And the covidaloco in order to make sure none of that is going on.

FWIW my covid experience (thankfully all over with) involved terrible chills and fever on and off accompanied by extreme fatigue and chest congestion.

[Gisygirl]

Make sure they take your WBC before getting another treatment. My first 2 treatments lowered my white count too much and so I had no more treatments of that kind. In fact, that low blood count put me in the hospital for 6 days.

[AussieNeil Partner Administrator in reply to Gisygirl]

Nama-8, further to GisyGirl's reply, specifically, it's important to maintain the absolute neutrophil count at least above 1.0, ideally above 1.5, to reduce the risk of infection. Your WBC will plummet because obinutuzumab does such a great job of killing off CLL cells. If your neutrophil count falls into dangerous territory, then the standard approach is to delay an infusion until your neutrophils recover and if recovery is delayed, have G-CSF injection(s) (filgrastim, pegfilgrastim, neulasta, neupogen, Zarzio, etc) into your skin over your stomach or into your thigh skin, to boost them, which takes a day or so.

Read the section, Protecting yourself against infections when neutropenic in this post: healthunlocked.com/cllsuppo... for what to do if you become neutropenic.

Neil

[HappyDave]

Hi, I started this therapy in November. It was a little rough to start with but I settled to it. It is apparently not uncommon to have issues at the start of treatment as I / we have done. Please disclose the side effects to your doctors and nurses and the very best of luck. My blood numbers are now much improved and the side effects have diminished.

Regards

Dave.

[Onmytime]

Had a tough start also. My neutrophils took a crash! Didn’t give me the steroids after the first week. I think it helped. My nodes and huge spleen were back to normal after 3 weeks! Working and worth it! Obin infusions done! Still 6 more months of Venetoclax to go! Hang in there.