Marginal zone lymphoma & chronic lymphocytic leukemia, anyone?

Hi @lynnstefanik89 While you’re waiting for replies from members who may have both CLL and MZL, I wanted to welcome you to Mayo Connect.
From my understanding, both CLL and MZL are generally slowly developing forms of leukemia. This seems to be the case for you with the watch and wait stage not requiring treatment at this time. Though I’m guessing your changing symptoms are leaving you questioning ‘why are we waiting’. I know from experience that just the word leukemia can strike fear in the bravest person. But we are fortunate to have treatments, when necessary, that can help us move beyond the diagnosis.

Having a 2nd opinion at Mayo is an excellent decision…I may be a bit biased because of my amazing care in Mayo Rochester. But Mayo’s hematology departments are second to none and this evaluation will offer a level of comfort in decision making for future treatments.

I’m very familar with the Mayo-Rochester campus and we have other members who can offer information about Phoenix or Jacksonville if you need any pointers. Which Mayo campus will you be visiting?

Hello,
Thanks for reaching out. It's good to hear what others have experienced.
Going to thr Rochester location right after Christmas.

Hi Lynn, If you haven’t been there before, Rochester and the Mayo campus are easy to navigate.

All of the buildings for Mayo are interconnected on the
S level so you can walk from one to another without going outside. Just hit the S button on the elevators to take you down to that level.
Great signage to direct you to where you need to go. Tons of guides with blue jackets if you need assistance with anything.
Many hotels, parking ramps, restaurants, stores are connected via the subway tunnel system.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
https://www.experiencerochestermn.com/planning-tools/getting-around/
You’ll most likely have blood work in the lab in the Charleton building, desk L-A. Suggest to go 1/2 hour early. They’re usually busy. ☺️

Do you have your patient portal set up yet? Use your patient number to log onto the Mayo Portal site. It becomes your lifeline for appointments, test results and messages from the medical staff.

A few discussions you might want to scan through:
Tips on how to get off the best start with a new specialist. https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Visiting Mayo Support Group. (Tons of info about lodging, food, etc.)
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
If you have any questions don’t hesitate…
Are you set with lodging?

Thanks for all the info, so helpful!
We were looking at lodging and it seems like there are hotels connected to the clinic. We need to book something soon.

Yes, many of the hotels are connect to the clinic via the Subway (underground walkway). It’s so convenient because you’re never outside to face the elements. You don’t have to worry about finding parking spots for your appointments or have to wear jackets. It’s easy to duck back to your room between appointments. Often there are rooms with kitchenettes or even full kitchens.
We always stay at the Marriott Residence Inn. It’s 2 blocks west on the Clinic on Center street.

Take a look through this discussion for some ideas.

Which hotels at Mayo in Rochester are connected to skywalk/subway?
https://connect.mayoclinic.org/discussion/hotels/
It would be good to book soon. I’m not sure how many days you may want to plan on staying. Sometimes appointments may be added to your schedule once you meet with a specilist.
But most hotels are fairly flexible with extensions and cancelations.

Thank you so much! This makes the first appointment much less daunting.

Mayo can look large and intimidating as you approach the complex. But once you’re inside, it is very user friendly. Not only that, the staff are equally as friendly and approachable. I think you’ll find you’re not just a number there and will have a very positive experience.

Let me know how it goes, ok?

Hello Lori,
Wanted to update you on my visit to Mayo. My Doctor is amazing! He listened to me and took the time to really evaluate my symptoms. I've had many other tests performed already. lm so thankful for the quick testing and results. The facility and people there are wonderful. I feel much better being there since I know I will get the right diagnosis and treatment. Thanks for your encouraging words.

Hi Lynn! I’m so happy to see that you’re feeling that underlying sense of confidence that comes from a visit with Mayo. I feel it every time I walk into the building or speak with a member of my team. The hematology department is awesome, isn’t it?
The detail to attention, the amazing speed and efficencies of the Clinic spoils us for care anywhere else. I call it being Mayo-naised. 😅 Let me know what you find out, ok? Hugs

Hi @lynnstefanik89,

Welcome to the community! (and sorry you need to be here)

I started my Mayo journey a little over 1 year ago. It took about 5 months for the docs to determine that I had CLL, SMZL, and WM (Waldenstroms) - I see Dr. Parikh@Mayo. I had really extensive testing & spent my time learning all (ok, "a lot more" than I knew before) about CLL. It's a DEEP but no scary hole to go down – an OK way to occupy your time... but, at least for me, I kept from becoming obsessed about it and carried on with life as normal.

By May, I was classified as being in stage 4 despite having almost zero symptoms (I've since learned about many folks that have really serious symptoms that have yet to be prescribed drugs). I was prescribed a BTKi inhibitor (Zanubrutinib... one of a class of drugs that all [not coincidentally] end in "nib"). FOR ME, being on Z was quite simple: 2 pills in the am & 2 pills in the pm. No effects. Most all of my bloodwork is back to normal. Alas, each of us are different & you will need to work with your doc to find what works for you.

On the blindly bright side for those of us with these conditions, there has been so much progress on the drug side of things in the past several yrs, with even more promising drugs on the near horizon.

Feel free to reach out if you would like to discuss further!