Gazyva

[plglass2011]

My husband was diagnosed with CLL in November 2016, although they suspect he had it for years prior to his diagnosis. Things have progressed and his oncologist wants him to start Gazyva infusions. He has a great deal of bulk and tumor lysis is a big concern of hers. Her recommendation is to use this by itself and not in conjuction with chemo. Honestly, after her being boldly honest about what he could experience during the infusions, he is waivering on whether or not to have the treatment. If anyone would share their experience with Gazyva infusions, it would be great appreciated.

[cllady01 Former Volunteer]

Plglass2011, as a first-time poster, welcome.

If you will lock your post (click on "more v" at bottom of post and edit by scrolling to bottom of your post which is now open and choose "this community only").

Locking the post will keep it from being on google for the world to see and many want as much privacy as possible to be able to relate their situations.

[TimHB]

I had 9 infusions of Gazyva over 6 months along with ibrutinib. For me, the infusions were easy. I had no reaction whatsoever during the infusion itself - coulda been saline for all I knew. I'd actually leave the infusion center with a surge of energy and go out to a nice dinner that evening. But 24 hours later, I'd get hit with a "hangover" that would knock me out for about 36 hours before it would lift. This happened the first 3 times with decreasing intensity -- after that, nothing. Whatever the side effects I had from the overall treatment of Gazyva & ibrutinib (mostly bone & joint pain), they were far better than the symptoms I was struggling with prior to treatment so it was well worth it. My enlarged lymph nodes and spleen shrunk immediately. My appetite returned and I was able to regain lost weight. Debilitating and unavoidable fatigue stopped, replaced by a general fatigue that is manageable. And my numbers have all moved into the normal range after spiking in the first couple weeks.

[cajunjeff]

Gazyva is the new, and supposedly best, monoclonal antibody (mab) medication used to treat cll. I have not had it, but I did have infusions with other mabs. Most of my infusions went fine, I did have an allergic reaction and hives with one infusion.

My understanding is that because Gazyva is a stronger mab, there is some increased risk of infusion reaction. I gather most people work through the reactions, they just slow down the infusion or stop and start. Infusion reactions become less likely with future infusions.

All of your husband's treatment options are going to carry risks of side effects. I would think of Gazyva as having much less risk of long term toxicity than chemo. I know some doctors use Gazyva alone as a frontline treatment and it will almost certainly produce some degree and length remission for your husband.

There are other treatment options as a first choice, most notable chemo or Ibrutinib, depending on the country you live in. Most people on here, including me, would encourage anyone to get a second opinion from a cll specialist before starting treatment. A specialist is typically a doctor who treats only cll patients as opposed to a general oncologist.

I personally would not pass on Gazyva because of the chance of an infusion reaction that can be managed and worked through. It could be the very best choice for your husband and less toxic than other choices. But I still would like to have a specialist walk me through all my treatment options and the risk/benefit profile for each.

Some people prefer to not know all the details of their options and rely on their doctor to figure that out and make the choice without reviewing their options. I don't find anything wrong with that assuming the doctor is a specialist who is up to date on all the fast changing data with cll.

[Rpshe1]

I had Gazyva & Bendamustine. I was told over 90% of patients have a reaction to Gazyva within the first hour of administration and to not try to be tough. Thirty five minutes in I had my reaction, staff was right there to slow/stop the drip & administer more Benadryl & prednisone. I only reacted the first cycle. Cycle 4 thru 6 I requested no Benadryl & prednisone prior to drug administration and I did fine.

[Judyanne]

Hi,

I have had 5 cycles of obinutuzumab with no side effects. Did not have to stop any infusion. Told I shouldn’t have bad infusion reaction because very little lymphocytes in the blood. My lymphocytes were in the lymph nodes/spleen etc. As noted above, they give premeds and will stop or slow down the infusion if a reaction. Infusion nurses say it is an easy drug. So far spleen has gone down and one lymph node on surface disappeared. Will know how it is doing on internal nodules and lymph nodes after scan. Hemoglobulin went from 8.6 to 12.1. Other counts are good. I was told I would probably get a 2 year remission from this drug. It does wipe out your B cells so may need antivirals or antibiotics. I was put on allopurinol for one month to prevent tumor lysis. There are others who has had this treatment by itself and hopefully you will hear from them too. Wishing him luck with whatever treatment he decides.

[MelindaBates]

Yes, there is a risk of tls, but the care team watches you like a hawk, especially for the first few hours. The moment you let them know something’s not right they immediately full-stop the infusion and the nurses and your Dr. will be right there almost immediately. You will start feeling better within 30-45 minutes. My first 3 days after my first infusion I didn’t feel well at all, but I live < 10 minutes from clinic and hospital, and had someone regularly checking in on me.

TLS is a real thing and nothing to mess around with, but I promise you that your team is right there every step of the way. I’d go for it.

[adaconda]

I had six treatments of Gazyva/ Chlorambucil in August of 2016. I finished in January 2018.

Hardly any side effects at all and after my last two cat scans and condition is stable which is good. I highly recommed the treatment.

[amberhead]

I am on Gazyva as a single agent treatment. I had a reaction to the first dose (headache so bad they had to stop for about 30 minutes) but since then it hasn't been anything too bad. It has given me amazing results. After the first treatment my WBC went from 109,000 to 3,500! I was "flu like" sick from the mass WBC kill after the first treatment but again, nothing i couldn't handle. I am almost done with treatment and my fatigue has improved significantly, my pain has decreased immensely and my lymph nodes have all shrunk. I was super scared and hesitant to start treatment but I am so glad my doctor was willing to give Gazyva as a single agent and that i decided to do it. Don't know how long my remission will be but my quality of life had gotten so bad that i finally was wiling to treat.