Starting Chemo With Gazayva

[redlion1]

First diagnosed with CLL in 2014 with "watchful waiting" until now. Starting Chemo next week with GAZYVA. Anyone have any experience with this drug?

[TimHB]

I'm 4 months into treatment with Gazyva and ibrutinib in a clinical trial (6 infusions so far). Everyone's different and some people can't tolerate it at all - but for me the infusions themselves are easy with no reaction at all at the time of the infusion. I had a delayed reaction to the first 2 infusions that hit 24 hours later (no worse than the worst college frat party hangover you ever had!) but that meant it was working so I welcomed it. Since then, I just get extra-fatigued for a couple days after each infusion but it's not crippling. It's a good excuse to take it easy for a couple of days - your body is working overtime. Your doctors know how to administer it gradually in the beginning to monitor your reaction (my first infusion was over 2 days) so if you have an adverse reaction, they'll catch it early and stop the infusion. I'd say plan on a couple of days of rest after each infusion until you know how your body responds to it.

[Susiecarer]

Hubby started on Gazyva and Chlorambucil on 29th January 2018. No side effects whatsoever, no hair loss. The only thing that did happen was that on his 4th cycle he became neutropenic. Finished chemo on the 2nd July. Still doing well, up to date blood tests so mostly normal.

It’s been said many times “that everyone is different” so please bear in mind that you may have some side effects....hopefully not. Gazyvro is a very gentle drug given via infusion.

I wish you all the best on your journey, but please make sure you read up on all the info you should have been given by your clinical nurse and if you should feel somewhat different whilst having the chemo especially the first cycle....usually given in four sessions, make sure you make the nursing staff fully aware.

Hope this helps. Take care

Susie x

[MsLockYourPosts Passed Volunteer]

Several people here havevdealt with Gazyva. You might get more responses in a new locked thread. There are also several people who have posted about, it alone or in combinations, on cllforum.com

[PCara90]

Are you starting the iFCG phase 2 trial at MDA? I have my pre-treatment appointments there next week and expect to begin the trial in early September. I have been on W&W since diagnosis in 2015. The outcomes from phase 1 of this trial look great so I am hoping to add to the positive results! I searched the internet looking for someone who was a part of the phase 1 trial but couldn't find anything. So instead I've been reading about experiences with FCR. I figure it's as close as I'll get for now.

Good luck with your treatment! Please follow up here with your progress. I would love to hear about your experience.

Pam

[RuthBorch]

I had stand alone gazyva. I was hospitalized for the first two infusions because of a concern for tumor lysis syndrome - and did have to have support for that. Also, with the first infusion they did have to slow it down. The first week or so i felt at times mildly flu-ish but that resolved. My energy was definitely improved about 6 weeks into treatment and my blood counts all were within the normal ranges except i was slightly neutropenic. I think the steroid that they gave was the worst part of the treatment bc i got very bipolar for a time and had significant issues with insomnia but that did resolve. It has been 2 years and my energy level has been great - was definitely the right decision for me.

[Grieb]

My wife had excellent results without side effects. It left her with an intact immune system . see my more detailed posts.

[amberhead]

I just started my first treatment of Gazyva as a single agent yesterday (8/16). I had nausea almost the whole time and about an hour in to the 4 hour infusion, i got a headache (different from any kind i have had before) so bad i was crying. Nurses insisted it wasn't a side effect and i was too miserable to argue but when i got home and re-read the side effect list, sure enough, it is listed in the top side effects. It subsided after about an hour with hot packs on my head and i think i finally cried myself to sleep because i woke up and it was dissipated to just a mild irritant. Will be having a stern talking with them this morning when i go back for my 900mg drip.

I felt very flu like yesterday evening with temperatures ranging from 99.7-99. It is finally back to normal this morning. I will preface this with the fact that my WBC count was 108k when we started treatment yesterday and i have been severely symptomatic this year of W&W (lymph pain, bone pain, abdomen pain, lethargy, night sweats, painful/swollen lymph nodes) so i may be more reactive potentially?

Update: Second treatment 8/17 went much better. I was worried it wouldn't happen because my fever was 100.5 when i went in but doctor felt ok with it. The nurses actually listened to me and adjusted pre-meds accordingly to help combat the effects of Thursday. We ran the 900mg drip in about 4 hours and I felt great leaving the office. Was really run down and tired all evening and did start to get a little nausea towards bedtime so took my anti nausea pills. This morning I still feel tired and weak but nothing I can't handle.

[adaconda]

Hi, I started this chemo with an oral chemo as well. I began in Aug/17 and took 6 rounds

that 7 months(had to stop treatment 3 weeks because white blood cell count got to low to treat) or I would have finished in Dec. Treatment went well with no major side effects. My blood counts are still on the low side, but hoping they come up now off of treatment. Currently my CLL is stable and go back on Sept. 18 for blood work. I am very blessed and satisfied with the results.

Michael (USA)

[redlion1 in reply to adaconda]

Michael, I had first treatment of 1000 units intravenously over a two day period. WBC

was 109 and has dropped to 3.5. Next treatment was to be tomorrow but has been

delayed until next week.