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starting gazyva and venclexta

Vski profile image
Vski
3 Replies

starting gazyva and venclexta therapy with first infusion on April 3 at City of Hope. What should I expect?

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Vski profile image
Vski
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SevernBeach profile image
SevernBeach

Hi Vski

I am 8 months in to the V + O treatment and it’s really been quite uneventful. I felt extremely fatigued, really slept through most of the first month and couldn’t walk far. I gradually became less tired with more energy and by the end of third cycle felt a million times better. I liked my hospital visits where all the staff were amazing. I found it reassuring to have all the visits and health checks for the first 6 months. I hope you have the same good experience.

Just one thing - I did pretty much isolate with my husband for 6 months and hand wash continuously. I met friends and family out of doors and only if they were well. No hugs or hand shakes, shopping on line and kept away from busy places like cafes and restaurants. It worked to keep me infection free and now I’m easing back into society. Think Covid and good luck

!

Smakwater profile image
Smakwater

Hi Vski,

Consider getting used to drinking 60-80 ounces of water daily at least a week before starting treatment and continuing through treatment. That is about 4-5 16 oz bottles of water. Appropriate your exercise and diet as best you can. For me the greatest benefit with the least effort was this hydration practice recommended by the doctor.

If you tolerate the drugs as the majority of patients do, then you might expect one unpleasant flu like experience sometime during the first three rounds of Obinutuzumab infusions, which should pass relatively soon.

The treatment is prescribed over 12 months. The Obinutuzumab infusions decrease and discontinue over the first eight months. The Venclexta starts low dose at the end of month two of Obinutuzumab. The infusions take 5-6 hours, and you will be sitting most of that time and going to and from the bathroom. You may want have something to read or a laptop to pass the time. I also brought a lite lunch and some snacks.

eviq.org.au/haematology-and....

Usually a steroid injection is administered prior to the infusions to manage inflammation. This will stay in your system for about 18 hours, and later that evening you will find it impossible to sleep. However, this steroid injection helped my joint pain immensely for a week or so afterwards.

You should have an administrating nurse assigned to you who will monitor you closely. If you have any concern or question do not hesitate to notify the nurse.

Overall, I found that the benefits from treatment to outweigh the side effects, and the 12 months to pass by quickly.

All the best,

JM

skipro profile image
skipro

oh that's such a big question with so many possible side effects that are different and a lot of people.

You should probably start taking allopurinol for several days before and during your first few weeks to avoid kidney damage.

The infusions can take all day and some people have reaction a few days in the hospital with the first dose, but usually have no reactions after the subsequent infusions.

You may have to either stay in the hospital or go in several times a day for several days a week in the initial phases of the ramp up to test your blood.

Everyone can chime in on their own side effects, but mine included being very dizzy, lightheaded, and tachycardic to eight weeks, nausea, diarrhea, fatigue, sore muscles, and loss of energy.

I'm glad the treatment is over for me right now.

Compared to the chemo I had in 2018. This treatment was milder but the side effects longer.

I hope all goes well for you.

Good luck and God bless

Ski pro

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