After 8 years w & w, finally started treatment this week. Day 1 very slow infusion of obinutuzumab, no issues at all, next day slow starting up to full rate after 3 hours and also to my delight no reaction. Felt great leaving the chemo unit, had a light dinner ( no alcohol), then about an hour or so later started with real bad hiccups and feeling a bit nauseous. Went to bed, woke up with hiccups again and a bit of reflux. Have taken a metoclopramide tablet, as prescribed this morning so will see how things go. Anyone else had this experience?
Hello @Smoggie
Welcome to the forum and thanks for posting.
I’m sorry to hear about your circumstance and my heart goes out to you.
I’m also a Chronic lymphocytic leukaemia (CLL) patient albeit I have only been diagnosed earlier this year, so I’ve not had any treatment yet and remain on active monitoring.
I ready your post with interest, as this may well be a journey I will share with you.
I used to get acid reflux, and this I felt was due to spicey food and / or alcohol but I’m no expert, and everyone is different. That having been said I have noticed since stopping drinking alcohol (except the odd glass of wine maybe once every 2 or 3 months (if at a birthday party for example )) that my acid reflux has not happened, and that is a relief as its not a nice thing.
I’m not some one who gets hiccups either - so again I cant relate to that I’m afraid.
Regardless, we are, I’m sure, as Chronic lymphocytic leukaemia (CLL) patients going to experience things as we navigate the condition, and I hope you let us know how you’re getting on.
Take good care of yourself
Mike
Good afternoon @Smoggie
Thank for your post and welcome ![]()
We are sorry to hear that you were having hiccups, acid reflux and feeling nauseous.
We hope others can share their experience with you.
If you haven’t already, we would definitely recommend informing your team/ Clinical Nurse Specialist so that they can support you as best they can and that they are updated with how you are feeling. They may want to make sure this isn’t a side effect of the treatment/ a sensitivity or reaction to these medications. They may also prescribe other medications to help with acid reflux or alternative anti-sickness medication if deemed necessary.
The NHS has a page on Hiccups - NHS which may be useful to read over, however we would advise informing your team just to keep them in the loop of how you are doing.
take care & keep us updated,
Emma (Support services nurse)
Update after week 2. Well the hiccuping acid reflux lasted about 24 hrs and then the next day nothing at all. Went for 2nd infusion of obinutuzumab on Thursday this time starting at a faster rate, and again no issues at all. Then awake from 230am this morning with nausea and hiccups again. Spoke to my team this morning and they say it’s because of the dexamethasone they give beforehand. They will give me some prescribed antacids that should solve the problem for next week. If that works then bring it on!! Venetoclax starts on 2nd December and hopefully will be as uneventful. Looks a lot riskier though, so some concern beforehand. Looking forward to a hiccup free day tomorrow!
Hello again @Smoggie
Thank you for taking time to post an update, it was lovely to hear from you again.
I do hope everything goes well and please do feel free to keep posting if you feel comfortable to do so.
Kind regards
Mike