I had some initial reactions to the Obinutuzumab last week, restarting today. Has anyone had a similar experience and how did it turn out over the course of treatment?
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Hi @Karlo86 great to hear from you.
So you have just started treatment.
I am sorry that I cannot help you but I hope someone can.
However perhaps it is worth talking to your nurse contact, consultant or GP as they know your whole medicsl history we are very complex beings.
Look after yourself and please do let us know how you get on.
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My first obinutuzimab infusion resulted in me having to stop the infusion and have the pre: treatment antihistamine, steroids and paracetamol given again. The infusion was restarted extremely slowly. The following infusion was done very, very slowly but I had no reaction at all. I had no further reaction to them.
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Brilliant, i feel that tiday has been similar to yourself. No reactions as yet and plain sailing…fingers crossed. Thanks for the response
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My name is Marc and I live in the United States. Approximately 8 months ago, after having my appendix removed, I was diagnosed with mantle cell lymphoma (MCL). Initially my hematologist/Oncologist suggested undergoing chemotherapy regimen. However after some relatively new testing procedures, it was determined that I have TP53 mutation and therefore chemotherapy would not work. Instead my hematologist recommended that I undergo treatment with 1,000 mg of obinutuzumab once a month for six months. In addition, I have been taking 320 mg (4 - 80 mg) of zanubrutinib and 300 mg of venetoclax (I started with 10 mg and ramped up.)
Today I completed my last obinutuzumab treatment and continue taking zanubrutinib and venetoclax. I will have a follow up pet scan and bone marrow biopsy in the next 2-4 weeks.
I have had very few side effects from any of these medications (extreme chills during first obinutuzumab only and slight diarrhea from venetoclax during the first few days.)
Like many of you, I am hoping for a deep remission and everything looks good so far.
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Hi @MarcB a great big welcome to our UK support forum.
I have to just say that diagnosis, treatment and medications can be different in different countries.
Gosh a lot has happened to you in the last 8 mths.
It is good that you have completed your last obinutuzumab treatment, I think a celebration is in order, I celebrate all the little wins.
How have you felt emotionally?
I ask because often the emotional side of diagnosis and treatment is not appreciated.
Really look after yourself and please do keep posting and I look forward to hearing more about you. Take lots of care.
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Hi Erica sorry the late reply. Emotionally I am doing well, staying positive and feeling great. I wanted to share my personal experience in case it could help others experiencing similar blood cancers.
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