Been on venetoclax 4 days

[Wiggynugget]

I have been on venetoclax 4 days and I'm dizzy nauseous have a continuous headache and am sleeping all the time and my dose is going up in 3 days will it get worse

[edelweiss]

Hi Wiggynugget, I have a few suggestions for you as I have been on venetoclax since last August. Firstly, you should be in close touch about symptoms you are experiencing with your hematologist’s office, as you ramp up on venetoclax. They should be able to help you troubleshoot. I have found it essential to eat a meal before taking venetoclax. If you are too nauseous to do that, then try getting down a bowl of rice pudding or maybe cereal with milk and bananas (something solid) if your diet allows these. Also, be sure to stay upright for a few hours after swallowing the pills. I too experienced fatigue and would rest on the couch but with a few pillows to keep propped up. I had to be prescribed omeprazole (PPI inhibitor) as the venetoclax gave me reflux ( and some nausea). It made all the difference for me and has allowed me to stay on the treatment. Rest when you can for the fatigue. Mine has improved greatly as time has passed. For your headaches, ask if it is okay to take the occasional dose of advil or tylenol. Why suffer unnecessarily? Many meds cause headaches during startup but persevere if you can, they often go away. Once I completed ramp up, I slowly changed the time I take the venetoclax to right after dinnertime so I have food in my stomach and take it easy in the evening as the fatigue hits me an hour or two after taking the meds. I hope this helps a little. Don’t forget to drink plenty of fluids. Wishing you well. Edelweiss

[Psmithuk]

I, sorry to hear this, but wonder if you are drinking enough water? For the first five weeks, you should be drinking 1 and 1/2 litres of water a day (yes, it’s an awful lot!).I hope it improves very soon, but do talk to your doctor about it.

Chrisx

[Jooby59]

My consultant prescribed anti nausea tablets which helped me. x

[NaturalWaze]

I also want to mention the water, as this is imperative. For nausea, I had to go on Zofran but was able to go off it later on.The symptoms do ease.

[Newdawn Administrator]

What time of the day are you taking it Wiggy? Presumably when the hospital give you them as you’re on ramp up. It was morning time for me on the day unit. I’ve just completed nearly 3 yrs on full dose Venetoclax and was fortunate to never feel nausea even on the ramp up. Once home, I did however always take mine after my largest meal in the evening (even when I didn’t feel like doing so).Mention the side effects to your medical team especially during this titration period.

Newdawn

[CLL23]

I had it once with allopurinol for a month -- no side effects.

Several months later I was advised to take a month-long course without allopurinol. In the ER with kidney failure three days later. That sums it up for me.

[SofiaDeo]

It is absorbed more completely with a higher fat meal, as opposed to a low fat one. So consider eating more fat in a meal about 1/2 an hour before the med is due. Try eating 1/2 hour before taking the med, instead of "with" the meal. Scrambled eggs & cheddar cheese(which is usually a lunch or dinner meal for me) with some bacon worked. I too had problems during ramp up. When I was able to move my administration time to 4-6pm, I got better. I also notice if I eat a meal immediately AFTER the drug, I get stomach upset. I never had the headache much, but I drink a lot of coffee, and others have reported this helps them. Regular, caffeinated tea will do if you aren't a coffee drinker, or if coffee really gives you an acid stomach compared to tea. I don't recommend any type of sugary soda pop, so skip the Mountain Dew.

You may be tired due to your body spending all its energy killing CLL cells. Drink, drink, drink water....don't try to do your regular routine, rest, report symptoms to your doc.

Consider stretching out your ramp up, spending another week at a lower level. It took me longer than 4 weeks.

[Smakwater]

Wiggynugget,

I see allot of good possibilities in the responses to your post, yet in addition to these considerations, I would be in very close contact with your doctor and be involved in the observation of any blood labs especially during this ramp up. One area of the CBC monitoring that is common too fluctuation and providing adverse responses is the kidney function. I over exerted on day during my ramp up in addition to inadequate hydration. I became very dizzy and nauseated. A blood test revealed high creatinine. luckily it was caught early and no organ damage occurred.

Venetoclax is a powerful drug, and in addition to the obvious risk of tumorlysis it stresses a broad spectrum of the hematologic process including the immune system, and is much too complex to observe at a glance even if we do not consider the elements of our individual influences.

Hope you get rid of the goooies!

JM

[Lilsa]

Hi Wiggynugget,

I think you have been given some excellent tips above.

I have been on venetoclax for 5 months now and my observations concur with the other responders, ie drink plenty of water, take medication after a fatty meal, and I would add, don’t do strenuous exercise for the two or three hours after taking the tablets.

My routine is, early morning 6 -9 km walk then breakfast (latish) immediately followed by venetoclax with a glass of milk and light duties for the rest of the morning.

I think shifting the time to evening is sensible, and will gradually move my dosage time to the evening meal.

Good luck,

Lilsa

[Doggoneit101]

I took mine at night after dinner and never had any problems. I drink tons of water daily, I'm always thirsty. I had problems with the allopurinol during ramp up giving me a rash but that was only issue for 2 years.

[Wiggynugget in reply to Doggoneit101]

You have such a positive attitude! Two years seems long to me yet you make it seem short thank you for your response 😀

[Doggoneit101]

Thank you, believe me it's a daily struggle. Venteclax was a wonderful game changing medicine for me! I really don't have anything negative to say about it.