Update to “ Treatment Begins”

[Coolerjoe]

Well if you have read my post on Treatment beginning. Then you may know that the introduction of Obinutuzumab did not go well. Had a reaction on Monday. Sent home that evening. Brought back into RWJ CI and admitted on Tuesday afternoon. Probably 15+ labs in the past 3 days chasing my potassium up and down the +/- values they pulled me off all chemo meds to get me stable. They are not sure if the potassium numbers were caused by the Imbrutinib 3 days worth and the small amount of Obinutuzumab i received Monday or not. So if labs come backnok in AM we may be off to the races again. I will say that sitting in a hospital when you feel good is taxing. I am a lucky one where it is more my numbers than symptoms that sent me into treatment. This version of wait and watch is not what i expected. I know it is for my own good. Just going stir crazy.

🤞for a fresh start tomorrow.

[AussieNeil Partner Administrator]

Obinutuzumab/Gazyva has a reputation for dramatic infusion reactions on the first infusion, but subsequent infusions tend to go fine. Dr Jeff Sharman had this to say about Gazyva (GA101) over 5 years ago:

"The main downside to GA-101 is the infusion reactions. I have compared rituxan to rolling thunder and GA-101 to lightning. On the first dose of either drug it is common in CLL for a patient to have either shortness of breath, low blood pressure, hives, etc. With rituximab, it seems like those can come and go. Every time you turn up the rate of the infusion the symptoms can start again. You resolve the problem by slowing down, giving more tylenol, benadryl, steroids and starting again. It can feel like the rolling thunder that goes on for minutes in a good east coast storm. With gazyva the reactions happen very early in the infusion and feel a little more severe. Once they are done though it seems they really don't come back - more like lightning."

cll-nhl.com/2013/11/gazyva-...

Good that you are feeling well and I hope you'll be able to continue treatment without further storms

.

Neil

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

Potassium levels can often go crazy when blood samples are shot down a tube to the lab. A friend had a terrible problem with this utill her doctors had her blood draws gently hand carried downstairs. Worth asking about.

[Coolerjoe in reply to MsLockYourPosts]

That is already being done.

[Hidden]

if i may ask-could you describe what it 'feels' like.

[Coolerjoe in reply to Hidden]

Which part?

[Hidden in reply to Coolerjoe]

Gazyva

[Coolerjoe in reply to Hidden]

Well the first try on Monday my reaction was my neck got warm then my face felt like it was on 🔥. Then my breathing became tightened up near my chest. Nausea ensued then finally intense vomiting 🤮 three times.

Today after getting the nod for a retry but at a reduced rate and longer infusion period. It was smooth sailing. That being said it was only 100ml over 8.5 hours.

Tomorrow is the big boy at 900 ml over 13.5 hrs.

25 ml the first hour. If i tolerate that

50 ml the second hour. If that works

100ml per hour till done.

That’s with a boatload of premed to keep the nausea at bay.

Keep my potassium levels in the green.

Hopefully they get easier till cycle three and the venetoclax ramp up.

Joe

[MsLockYourPosts Passed Volunteer in reply to Coolerjoe]

With rituxan, Gazyva, or any treatment, for that matter, it is critical to tell your nurse if you even think something is off - an itchy ear, ANYTHING! You will not be bothering the nurses. They would rather check you out and find no problem, than end up with a very sick patient. They can pause the infusion, add premeds, restart at a slower rate, and / or consult with your doctor. In 17 years I have only had two VERY minor reactions, one to IVIG (different brand, no more problems) and Benedryl (now I get Claritin). Both times I just felt slightly spaced out. My nurses and doctor were all over things immediately.

Rituxan and Gazyva can cause a reaction during the first infusion, but won't necessarily. I have sailed through treatments with both. With the Gazyva, being older and wiser LOL!, I was expecting at least a minor reaction. I did realize that my nurse was watching me like a hawk the whole time, but nothing, other than the IV Benedryl buzz.

Have a driver if you are getting IV Benedryl. It is nothing like taking a couple of tablets. It someone goes with you tell them to take something to keep themselves occupied. You will probably just want to snooze part of the time.