I’m undergoing immunotherapy and taking veneclax daily.. I have lost total taste..this happened to anyone else? I...

Taste Loss During CLL Immunotherapy - What You're Experiencing

I'm sorry you're dealing with this—taste loss is a real and frustrating side effect that can significantly impact quality of life during treatment. Let me help you understand what's happening and what you can do about it.

Why This Happens with Your Treatment

Venetoclax (Venclexta) is a targeted therapy that works by triggering apoptosis (programmed cell death) in CLL cells. Immunotherapy works by activating your immune system to recognize and attack cancer cells. Both can affect taste in different ways:

• Direct effect on taste buds: Cancer treatments can damage the taste receptor cells on your tongue, making foods taste metallic, bitter, or completely absent
• Mouth and throat changes: Treatment can cause inflammation or dry mouth, which interferes with how flavors are detected
• Systemic effects: Both drugs work throughout your body and can affect the nerves and tissues involved in taste perception

According to NCCN Guidelines for Patients with CLL, managing side effects like this is an important part of your overall care plan, and your care team should be actively helping you address quality-of-life issues.

This IS Common - You're Not Alone

Yes, taste changes happen to other patients on similar regimens. The good news: it's usually temporary and often improves after treatment ends or during breaks in therapy.

What You Should Do RIGHT NOW

Contact your oncology team immediately. This is important because:

1. They need to know - Taste loss can lead to poor nutrition, which matters during treatment
2. They can help - Your team may adjust timing, recommend supportive care, or refer you to a registered dietitian who specializes in cancer nutrition
3. It may be manageable - There are strategies that help many patients

Practical Strategies While You Wait to Talk to Your Team

Nutrition-focused approaches:

• Eat foods at different temperatures (cold foods sometimes taste different than hot)
• Try stronger flavors: citrus, spices, herbs, vinegar, soy sauce
• Experiment with texture—sometimes texture helps when taste doesn't
• Drink nutritional supplements if solid food is unappealing
• Stay hydrated (taste buds work better when mouth isn't dry)

Oral care:

• Rinse mouth with salt water or baking soda solution before eating
• Use sugar-free gum or lozenges to stimulate saliva
• Stay away from very hot foods (can worsen mouth irritation)

Practical tips:

• Eat with others when possible (social aspect helps)
• Don't force foods you dislike—focus on what you CAN tolerate
• Keep a food diary to track what tastes better on different days

Questions to Ask Your Oncology Team

1. "Is taste loss a known side effect of my specific venetoclax + immunotherapy combination?"
2. "Can I see a registered dietitian who works with cancer patients?"
3. "Should we adjust my treatment schedule, or is there anything that might help?"
4. "When do taste changes typically resolve after treatment?"
5. "Are there any medications or supplements that might help restore taste?"
6. "How can I make sure I'm getting adequate nutrition while this is happening?"

Important Context

According to NCCN Guidelines for Patients, loss of appetite and taste changes are recognized side effects of systemic therapy. The guidelines specifically recommend:

• Speaking to your care team if you have trouble eating or maintaining weight
• Working with a registered dietitian who is an expert in nutrition for cancer patients
• Focusing on balanced diet, adequate food amounts, and sufficient fluids

Timeline Expectations

Most patients find taste gradually returns weeks to months after treatment ends. Some experience improvement even during ongoing therapy. This varies significantly between individuals.

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.

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One more thing: If you're also experiencing severe nausea, difficulty swallowing, or significant weight loss alongside the taste loss, mention all of these together to your team—they paint a fuller picture and may help your care team adjust your supportive care plan more effectively.

How long have you been experiencing the complete taste loss?