Starting gazyva tomorrow

[aptucxet]

Hello to all you wonderful supporting CLLers here......I had posted a week or two ago about my platelets dropping to 7 .........and was prescribed prednisone to boost them.......it did......back up into the 40s. Tomorrow, the "team" will start me on gasyva......100 mgs tomorrow and then the balance of 900 on Thursday.......does this sound like a proper approach? After a few rounds of gazyva, i will then be prescribed calquence. Any suggestions on what to expect with the IVs ......sounds like most folks have an initial reaction........so not looking forward to that, of course. Thank you all. Joh n

[cajunjeff]

Hello John. I am no expert, but I think steroids and then gazyva is one of the common ways that immune thrombocytopenia (ITP) is treated. The gazyva should help treat your cll as well. Your cll is likely triggered your ITP. The addition of calquence should also help with your ITP and cll.

It’s difficult to predict who will get a reaction infusion to gazyva and who will not. They have a variety of strategies to help you through the infusion, including lowering the rate of infusion. I think you will be ok on that. If not they can try another similar monoclonal antibody to gazyva. Rituxumab gave me hives, but I did fine on ofatumumab.

Good luck. It’s good that they restored your platelets to a level where they can treat your ITP and cll.

[Poodle2]

Good luck, they are very experienced. It sounds more scary than it actually is. I was petrified before the first infusion, I wish I could have spoken to myself knowing what I know now. I had a reaction, I felt hot and had a rapid heart beat, my blood pressure went up...they stopped the infusion, topped up antihistamines and steroids and all was good within minutes, when I restarted, all went well. I hope you have a smooth start, anything little that feels weird, let them know. They will be very attentive. Make sure you drink 2l of water in the lead up to your infusion - that's what I was told. It made it easier to insert the cannula. Drink plenty of water during the day. Make sure you rest, you might feel tired afterwards. All the best.

[aptucxet in reply to Poodle2]

Thanks so much for your input and encouragement.......only problem with drinking a lot of water......it goes right through me........how do you get to a bathroom when attached to IVs ?

[Poodle2 in reply to aptucxet]

The bag is on a stand with wheels🙂you will become a pro at maneuvering it around 🙂don't worry. You will have to try to drink... If I didn't drink my 2l prior to the infusion, it was more difficult to insert the cannula but you might be fine. You definitely have to drink 2l a day while on treatment, it prevents TLS and helps your kidneys as they process the drugs and also all the CLL cells which are dieing off.

[aptucxet in reply to Poodle2]

Thank you very much poodle..... Are you under treatment now for your CLL?

[Poodle2 in reply to aptucxet]

I finished Obinutuzumab (Gazyva) and Venetoclax in June 2023. I achieved UMRD and have been in remission since🙏🏻🙏🏻🙏🏻I'm doing really well and am eternally grateful for that. I would have been dead without treatment, no doubt about that. I was very unwell before I started treatment, my Hb was very low and lots of other symptoms. Feel free to read my previous posts about my treatment journey, I posted regularly as it helped me to read how others did on the same treatment. I was hoping my posts would help others one day, just like those, who posted before me, helped me. You will get better, trust the process. The drugs are amazing. It felt like a miracle to me.

[aptucxet]

Thanks so much for the encouragement........and I'm happy to hear that you are in remission now.........that's great news! I hope that the calquence will work for me......after I'm finished with the gazyva treatments.

[ArtistBlacksmith]

You are following much the same course I got when my CLL caused ITP. Only difference was I got some IVIg to get the platelets back up as the corticosteroid did not work on its own. The way Obinatuzimab (gazyva) was described to me is it is so effective at destroying CLL cells that it is like spraying flyspray into a room full of flies- they just drop. So they start the infusion slow and at a small dose to get the kill off to occur more slowly- this manages the risk of TLS (tumor Lysis Syndrome) where the sudden death of huge number of cells overwhelm your spleen and kidneys. I had no issue with any of the infusions, all takes a bit of time in the first month during ramp up, that is all.

[BigDee]

Hello aptucxet

The dosage sounds per protocol. I would recommend that you have someone with you for your first infusion of gazyva which can be the rough part. Infusions following normally go well. Blessings.

[aptucxet in reply to BigDee]

Thank you very much I do have my daughter with me and I am receiving the IVs right now

[DanBro1]

Gazyva (Obinutuzumab - the 'mab' indicating monoclonal antibody) is some good stuff. The beginning low dosage is to make sure that you are not allergic to it, then the ramp-up to the 1000 mg. It attaches to a protein on the surface of the B-cell and causes it to die. These dead b-cells need to be flushed out of your body, so you MUST drink lots of water during treatment. I started 4 pills per day of Venclexta while undergoing 6 monthly infusions of Obinutuzumab. The first week I had mild chills and fatigue...then all was normal. I continued on Venclexta for 1 year. I have been in remission for 3 years.

[aptucxet in reply to DanBro1]

Thank you very much I appreciate your input..

[mbear]

Hi. Started Acalabrutinib 3mths ago as haemoglobin was dropping. Virtually no side effects, headaches for first couple of days but now symptom free and bloods all heading in the right direction. Wishing you well on your CLL journey.

[aptucxet in reply to mbear]

Thanks very much mbear.........that's encouraging........glad to hear you are now symptom free. I really shouldn't complain......I was diagnosed about 13 years ago.........no treatment until now........and I have poor markers.....11q deleted and unmutated. Gasyva IV went ok today....no adverse reactions.......tomorrow will really be the test though.