Obinutuzumab infusion and: Hi All had my two... - CLL Support

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Obinutuzumab infusion and

TheFlyer profile image
9 Replies

Hi All

had my two first infusions on Tuesday and Wednesday no issues at all despite some posts I have seen.

Steroids did cause sleeping issues later but I did enjoy the pre meds.

Blood results showed from Tuesday infusion showed slightly raised 222k to 232k.

With get Bloods redone next Tuesday before next infusion.

I was concerned the C Reactive protein level Blood was 56.2 Nurses said nothing to worry about.

has anyone got any input on this as a little concerned.

Jules still Flying

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TheFlyer
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Poodle2 profile image
Poodle2

Well done on getting through the first two infusions. I would bet that your lymphocytes will have decreased dramatically by the time you go for your next infusion. I did not get the results after the first infusion but after my second my, my lymphocytes went down form in the 140K to 8! I also had a higher CRP (in the 30s). I did spike a fever at night after my first infusion so had to be given antibiotics etc.but the doctor who monitored me explained that the higher CRP could be a reaction to the drugs and what they are doing in my body. The infusions did their job, I believe my lymphocytes were in a normal range before I started ramping up on V. It's a great combination. I finished a year ago, got my uMRD result and have had the best year healthwise in a decade at least. I'm very grateful and hope it lasts. Wishing you all the best. I'm sure you on the way to feel better! Petra ❤️

Blue-bird_ profile image
Blue-bird_ in reply toPoodle2

Indeed, the elevated crp is likely a response to the elevated immune system activity. My husband would have frequent blood tests throughout his treatment, so I became familiar with the patterns. Crp tends to be in the 100-200+ range when there is an actual infection or sepsis. Febrile neutropenia could cause a fever plus elevated crp, in which case they give you antibiotics to be safe, but my husband's blood cultures came back clear everytime. Slightly elevated crp isn't typically a cause for concern unless it keeps climbing or you have other symptoms.

The steroids were annoying for my husband, too! Took a while for them to wear off and they didn't give him anything for sleep, but we didn't think to ask as we only realised after the steroids already left his system.

Mijoed profile image
Mijoed

Good to hear the first two infusions went well. I wasn’t so lucky so no further Obinutuzumab for me. One good effect was that most blood numbers dropped to normal after day two.

I would say just keep track of your temperature. If it goes high, give them a call.

JustAGuy profile image
JustAGuy in reply toMijoed

Last month I also had a bad reaction to obinutuzumab:

healthunlocked.com/cllsuppo...

Your doctor kept going with the venetoclax. I think my dr is worried I might react to venetoclax too and I think he wants to abandon that plan and switch to BTKi. I’m still interested in time limited treatment though. Is there anyone else I wonder who couldn’t do obinutuzumab due to bad reaction, but went ahead with venetoclax and did fine?

Alex830 profile image
Alex830 in reply toJustAGuy

I had a severe reaction to Rituximab, tried obinutuzimab, same issues, had to stop both. Followed through with Venetoclax, did have a serious rare reaction but that was probably because of some other comorbidities, started back up the Venetoclax after three weeks and besides some minor side effects, no issues.

Mijoed profile image
Mijoed in reply toJustAGuy

My haematologist was also concerned about the Venetoclax but discussed it at the MDT meeting with the CLL specialist in Kings. I was already in hospital so they kept me there for an extra few days to continuously monitor bloods. As it happened, I had no issue at all and the ramp up went smoothly. There was also some concern about Rituximab but, apart from an itchy scalp for 10 minutes, I had no other reaction. Infusion #2 was therefore done at high rate

skipro profile image
skipro

Hi

I'm impressed with the minimum side effects you've had with Obin. so many others, including myself I've had very severe reactions so I'm happy for you.

CRP is a measure of inflammation and some cases can be used to look at the heart.

I'm not sure what it would mean in this setting as none of my doctors have ever ordered that test during my treatment

Regardless, I hope the rest of your treatments go smoothly.

God bless you and good luck

skipro

TheFlyer profile image
TheFlyer in reply toskipro

Thank you so much.

skipro profile image
skipro

👍

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