Congrats on MRD negative. If they had tested me 2 years ago, they told me I would have been considered MRD negative, but they improved the test and I just missed!

My ASCT was 5 mo ago. I go out and enjoy myself. To me, the whole point of treatment is to continue enjoying life. I try to avoid peak times. If it is really crowded or there are lots of children around, I mask. Having said that I have been in a number of crowded restaurants and you cant mask and eat. If I hear a cough or a sneeze, I always have a mask in my pocket. I took my mask off for 5 min on a plane recently (to eat my cookies :-) ), and wound up with 101 degree fever for 3 days but I thoroughly enjoyed my trip and hope to travel alot in the coming years.

I started maintenance therapy (lenalidomide 10mg/Eliquis 5mg.) on 10/24, 3 months post-sct. I will wear a mask if travelling on the NYC subway system, always crowded. I've yet to travel on a plane, but I would wear a mask for that as well. Dealing with this damn thing on my own, doesn't put me in to many compromising situations. Once the weather gets nicer, I'll be on the wide open spaces of the beach. I might chance a few Yankee games this season (missed all of the '24/'25 seasons), I won't wear a mask, it is outdoors. I like going to the movies, but I'll go to a weekday matinee, after the movie has been out awhile, making for a less crowded space. Again, very solitary, very depressing, but better than being a hermit 24/7.

Hello, Joy; There’s been a lot of good comments and ideas already expressed here. Like you I am a 73 yr old male currently taking (10 mg)Dex and (15 mg)Revlimid weekly as treatment for my mm along with many other daily mm meds. I would suggest as others have mentioned talking with your dr about your concerns. I remember when I was first diagnosed with smouldering mm and then began treatment about 2 years ago my oncologist telling me that for mm the bad news is there is no cure but the good news is it is highly treatable. Another piece of advice she gave me was to live life. To that end I still go to plays restaurants and other church type gatherings. I also have continued to travel by car (1000 miles each way) down east from Ontario with my wife.to our family cottage in New Brunswick for 2-3 week summer holidays every year. So far that all seems to be working well for me. My family, children, friends and church family have all been very supportive to me as well! I am a glass half full type of person but mm is certainly a challenging disease that suddenly confronts you with the reality of your own earthly mortality and tests you in
many other different ways, for me I have chronic ongoing daily fatigue! I am currently enrolled in an exercise program to help overcome those effects.
I wish you all the best Joy, on your journey and pray that your life can be lived to enjoy today and look forward to tomorrow!

Joy, this sadness you’re feeling is very real, and you’re not alone in it 🤍
Here’s a clear, honest group-style answer that many on Dara + Revlimid maintenance can relate to.

🌸 Do You Have to Avoid Crowds on Dara + Revlimid Maintenance?

Short answer:
👉 No, not everyone avoids crowds forever — especially if you’re MRD-negative.

Why Crowd Caution Is Recommended

Daratumumab and Revlimid both:
• Lower parts of the immune system
• Reduce antibody response
• Increase infection risk (especially respiratory viruses)

So doctors often give blanket advice early on: “avoid crowds.”

🌱 The Reality in Real Life

Many patients gradually return to normal life with common-sense precautions, not isolation.

People who do well often:
• Go out during off-peak hours
• Wear a mask in crowded indoor spaces
• Avoid obviously sick people
• Live normally outdoors and in smaller gatherings

Being MRD-negative is a very good sign — it often allows for more flexibility, especially if:
• Blood counts are stable
• Infections have been minimal
• IVIG is used when needed

🧠 What Doctors Don’t Always Say

Long-term isolation can:
• Increase depression and anxiety
• Reduce quality of life
• Take away joy — which matters in healing

This is why many oncologists now talk about risk-balanced living, not fear-based living.

🩺 Important Questions to Ask Your Doctor
• Given my MRD-negative status, how strict do I need to be?
• Can I relax precautions if my counts stay stable?
• Would dose reduction or spacing Dara help immunity?
• Do I need IVIG support?

💙 A Gentle Truth

You didn’t fight so hard to survive just to stay hidden.

Life doesn’t have to stop — it just becomes more intentional.

Many people on Dara + Revlimid:
• Travel
• Attend family events
• Dine out carefully
• Reclaim joy — without reckless risk

🌷 For You, Joy

Your sadness makes sense.
It’s okay to grieve the parts of life that changed.

But MRD-negative means hope, flexibility, and possibility.

If you’d like, I can:
• Help you write this as a support-group reply
• Share what others do safely
• Or help you phrase this concern to your oncologist

🙏🌿

We stay away from crowds because we don't want in infection like bronchitis and colds. Wear a mask and go to have fun. I was sick for 5 weeks with a cold. Just takes a long time to get over it.