CLL, Gazyva

[hasta]

Anyone on Gazyva?

[Natchez]

My 67 year old husband just started Gazyva on Monday.

How’s it going for you?

[hasta in reply to Natchez]

I am a 67 year male too. I had my three rounds of Gazyva in October. Now, i will have monthly infusions starting December 1st. Four years ago i had FCR treatment. Remission lasted four years. I am hoping Gazyva would provide a longer remission. Good luck to your husband.

[LovelyLilyGirl]

I did 9 rounds of Gazyva, starting in March and finishing in July. Very few side effects and great results. Labs are normal.

The first infusion seems to always give everybody a little allergic reaction but the nurses quickly react by giving you Benadryl or other medications to stop the allergic reaction. It’s been a miracle drug for me.

In addition, I am on 400 mg of Venetroclax until April. You can read my previous post to see about my treatment journey.

Feeling great. And looking forward to long remission. Fingers crossed.

Sally

[hasta in reply to LovelyLilyGirl]

Hi Sally, thank you for your reply. I had my three rounds of Gazyva in October. Now, i will have monthly infusions starting December 1st. Gazyva was easy to tolerate compared the FCR treatment i had 4 years ago. I will read your other posts too. My blood test reults are very promising. I also hope you have a very very long remission. Regards

[Natchez]

I wish the best for you, hasta, so many ups and downs.

The following is part info for new Gazyvites, part me seeking info and part me expressing concern:

My husband is a 5 year esophageal ca survivor, having undergone chemo,radiation and esophagectomy.

Exactly one year ago he was dx’d with CLL & put on W&W.

The wait wasn’t long as he started Gazyva this Monday.

He did have a reaction on Day 1 and as a retired ICU nurse, I was moved by the swift smack down the nurses put on it.

Day 2 went smoothly.

He’s also receiving extra IV hydration as his ability to consume is limited by the esophagectomy.

Here’s where the questions/concerns come in:

We also learned on Monday that 2 chest nodes lit up in PET scan - “worrisome for metastatic disease.”

I guess I thought that since CLL was also now lumped (no pun intended) in with lymphoma that node involvement was a given, so I’m confused as to why hot nodes are “metastatic.?”

I’ve managed to read my way through some explanations - so am I correct in now understanding that lymphoma, indeed enlarged nodes are part of the general disease process and not in and of itself cancer cells in the nodes themselves?

He was slowly losing weight prior to Gazyva ~ 10# - even with an unchanged appetite.

He was a very active guy - we just hiked in Michigan’s U.P. last month - 5-9 miles at a crack.

Since the Gazyva started this week all he can do is sleep and is COMPLETELY wiped out and his appetite has all but disappeared.

I got him out for a <1 mile walk yesterday but he couldn’t even think about it today.

I’m making small amounts of food and just giving it to him, but if I didn’t, he wouldn’t be eating at all which is also highly unusual.

So: to the point: Are these (excessive fatigue, weight loss and lack of appetite) sequela of the Gazyva or something deeper, more ominous and problematic?

Thanking you all in advance.

[AussieNeil Partner Administrator in reply to Natchez]

Gazyva kills off lots of CLL cells, putting extra demands on your body to process the dying cells as well as tiredness being a common response to the premeds given prior and sometimes with the infusion.With CLL/SLL, CLL cells are found throughout your body, with the exception of the corneas (no blood supply). They tend to congregate in the lymph nodes and spleen, causing these to swell, rather than forming tumours. Give your husband time to recover.

Neil

[Natchez in reply to AussieNeil]

Thank you, Neil. I appreciate the response.

[hasta in reply to AussieNeil]

Great response. Thank you!

[hasta in reply to Natchez]

I am at the beginning of my Gazyva treatment and unfortunately I cannot speak for what the future holds, but I have not experience any fatigue, weight loss and/or lack of appetite. The premeds included steroids. I was very wired after the infusion. Couldn't sleep well for a couple of nights and was very hungry. After three days. I felt completely normal. I hope this helps. Best Regards

[Natchez in reply to hasta]

Thank you so much for your response. He seems so much better today after a really bad day yesterday, so perhaps he’s on the same path as you. Sharing your experience helps us. Thanks and best wishes in a continued positive course.

[Siberunner]

I’m in the middle of the monthly infusions now. I’m also on a daily dose of 100 mg of Venetoclax. When I started Gazyva I had almost every side effect possible. My nurses were wonderful and able to control everything and get me through it. I just had my third monthly infusion yesterday and today I went on an 18 mile hard mountain bike ride. My labs are pretty much normal and I’m feeling better and stronger than I have in the last few years. This is the first treatment I’ve had so I have nothing to compare it to but so far it’s been great for me.

[hasta in reply to Siberunner]

Thank you for sharing your experience. I am glad Gazyva is working for you and I hope I will experience similar success.

[MsLockYourPosts Passed Volunteer]

Gazyva in 2015. Still doing well.

[hasta]

Great! I hope you feel well for a very long time.

[Iupiter]

I started on a clinical trial with Obinituzumab (Gazyva), Ibrutinib and Venetoclax just over two months ago. The first time I had a Gazyva infussion I had a strong rash reaction towards the end. All of a sudden my station was full of nurses, they gave a lot of Benadryl and quickly brought it under control. After the first infusions during the first month I was quite tired nd lacking energy. But not anymore. I just had another infusion last week and felt perfectly fine afterwards. I just stared V last week also. Good luck!