Anyone else have Mantle Cell Lymphoma?

Thank you so much for offering support should I need an SCT, Lori, it's really appreciated. Have you ever heard of anyone not needing one after treatment?

This will be my first time to Rochester. Coming a few days prior to my first appointment to have a little time to learn the lay of the land.

@nhlbob Well, on behalf of Mayo-Rochester let me welcome you to the Clinic. I spent 4 months there during my SCT and recovery along with return trips. It’s a wonderful city and the Clinic is like no other. I know you’re going to be in great hands! You’ll be pretty impressed with the level of care and concern, and how everything runs so seamlessly!

There are a number of conversations on Connect with other members about visiting Mayo-Rochester for the first time which you might find interesting. Ideas for restaurants, sights to see, etc.
Here is the link to the Visiting Mayo Clinic group: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Along with that, I’ve posted a link to discussions on how to get off to the best start with a new specialist and a visitor guide for preparing to make the most of your first appointment.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/how-to-make-the-most-of-your-appointment
Do you have your patient portal account set up with Mayo? It will be your go-to for all your information about appointments, where they are located, how to prepare for them. It also posts all your lab results, letters and notes from doctors and other providers, health records, etc.
If you have an early lab appointment, I suggest going 1/2 hour early for this if you have other appointments right after the labs. The lab is a super busy place and can get little jammed up early in the morning. But everything runs smoothly and efficiently.
All of the buildings are connected with great signage for directions. There are also tons of volunteers (in Blue Jackets) to give you directions or answer questions. If you stay on the Sub Level, marked S on the elevator, all of the main buildings are contiguously linked and easy to go from Mayo-Gonda-Charlton buildings.
Here’s a map of the Rochester Campus https://mcforms.mayo.edu/mc1600-mc1699/mc1663-55.pdf?_ga=2.128046028.1155008562.1642545706-1992796757.1642545706

You asked if I knew of anyone with MCL that hasn’t needed a transplant…this is out of my area of experience so I can’t really answer. It’s a good question for your hematologist/oncologist. You might also ask if you do need one if it will be an autologous transplant using your own cells or an allogenic transplant using a donor’s cells. But again, this is a bridge to cross at a later date! You may respond well to treatment and not require one ☺️

This next 2 weeks will go by quickly. Anything else I can help you with?

Wow, 4 months, you sound like an incredibly strong person! I'm happy that your result was so successful! Thank you so much for all the info, it's really really helpful. I do have my Mayo patient portal account set up and it's incredibly convenient. I really pray I won't require a SCT, but yes, I'll have to wait to cross that bridge. You have been so helpful! Thank you again for all of your kind support.

Good morning, @nhlbob It’s been about 2 months since we connected last and I’ve been wondering how you’re doing? Were you able to get some encouraging news from your trip to the clinic in July? Any news on whether you’ll need a SCT or not?

Hi Lori, thanks very much for your message! Being at Mayo was very encouraging. After my doctors received and reviewed my biopsied tissue, the Ki67 came back at 10% (which is considered low) and which was lower than what the pathologist in Thailand had determined (they had it at 20-30%). Mayo also ran FISH and TP53 and I didn't have the deletion which is also very favorable. Since I don't have any B symptoms, my oncologist suggested watch and wait. It's a little scary and worrisome.

I'm also dealing with a CIDP diagnosis and I saw a Mayo neurologist who ran tons of testing and is wanting me to start IVIG treatment for 4 months to see if there is any improvement. My oncologist mentioned that there might be a possibility that it could have some benefit with the MCL. So, I'm working towards starting the treatment asap. In fact I might even return to Mayo to have it done there.

How have you been?

That’s wonderful news that your numbers are lower than first considered. I know, watch and wait can be a little hard at first. It’s like you’re waiting for the proverbial ‘other shoe to drop’. But in reality, sometimes that shoe doesn’t drop and you may never have an issue develop. If so, you’ll have been monitored regularly enough to catch anything early. So at this point, I’d put that in the ‘way back’ storage pod in my mind.

Getting started on the treatments for the CIDP will be a relief for you! Hopefully it does have an impact on the MCL. Win/win! If you return to Mayo, all the better. You’ve had a great experience there, with the confidence and trust level pretty high. Though I know that’s quite a trip from Thailand for treatment! Keep me posted, please?

"But in reality, sometimes that shoe doesn’t drop and you may never have an issue develop." I've researched that and have tried to find other patient cases where this is the case but was unable to locate anythingthing online. I did listen to an LRF podcast with a oncologist by the name of Dr. Laura Pinter-Brown who stated exactly what you're referring to; "A disease may not and does not have to naturally progress from one stage to another." Have you ever heard of a patient with MCL or another type of Lymphoma where this was the case?

Yes, I know I should put that in the 'way back' storage pod in my mind but many times I feel the pod is full and kicks it back to the forefront 🙂 I'm one of those people that is an excessive worrier.

I pray that the IVIG treatments do have an impact on the MCL. That would be a prayer answered.

But what if everything goes right?? ☺️ That’s my way around excessive worry. I just don’t let it consume me anymore. It’s important to face your fears. It gives you the control over your future. Anxiety is nothing more than projecting negative thoughts about the future. I’ve written to other members before about What Ifs and how they can just be overwhelming!
So, ‘what if’ your current condition does escalate and that proverbial other shoe drops? You have to ask yourself, what’s the worst that can happen? What do you fear the most about this ‘watch and wait’ diagnosis? Is it the fear that you won’t live? Is it the fear of facing chemo? Life changes? Or??
I went through this with my Acute Myeloid Leukemia. Though I didn’t have the watch and wait period, it just hit like a roaring freight train out of nowhere in 3 week’s time. Statistically it wasn’t good. I’m not a numbers girl so the odds didn’t phase me a bit. Unlike my husband, who is all about stats and numbers…he didn’t share my, ‘Pffft this isn’t going to take me out, attitude’. 3 years later, I’m proof of Better Living through Chemistry and I’m my own statistic. ☺️ I bought myself more time with my treatment and never gave up hope that it would work. I had a goal, and that was to live at all cost. If I didn’t make it, then I had a good run with the knowledge that I fought to the end. It’s pretty satisfying and now I fear nothing. (Ok I’m still not keen on centipedes).
So, if you’re an excessive worrier, what is it you fear the most?

"Anxiety is nothing more than projecting negative thoughts about the future." So true, and something I have always struggled with reigning in. I fear the thought of the lymphoma spreading to other parts of my body and what that might feel like, and then fear would I be subjected to a much harsher chemo treatment and need a SCT. You clearly have the right attitude, not only for life in general, but also facing health challenges. I really admire that.

It's not that I haven't faced previous health scares; benign tumor removed on my rib cage at age 38, two-level lower spine surgery at 49, benign tumor removed from a finger at 55. All instilled a high degree of fear and "what ifs." But lymphoma just feels so much more insidious because it deals with an entire system in the body, not a single mass or isolated area. Probably the thing I fear the most are all the unknowns.

My fear is that this will come across as preachy, that’s not my intent at all. I enjoy philosophical discussions but I know this isn’t really the right venue. So for brevity sake, you’ve faced some pretty serious health scares in the past and I know that can really shape future thoughts. (I wasn’t always this cavalier about ‘what ifs’ myself )
But as I’m reading the rest of your reply, what I’m seeing is; Whatever worry you had prior to the surgeries, whatever ‘what if’ you’d told yourself that created the anxiety, it didn’t matter in the end. What was going to happen, happened. You went through the events and came out on the other side with a sense of relief for what [didn’t] happen. ☺️ When the worst happens, we deal with it at the time. Worrying about what, when or how (the unknowns) just robs us of so much mental space that could go for positive affirmations!

I had a paradigm shift in my 30s (30+ years ago) and changed my “what ifs” to If Then. I realized I spent the first part of my life worrying for nothing. Now, anytime I get a what-if moment, I quickly change it to If-Then. If something happens, Then I will deal with it head on. It takes time to reprogram ourselves but it’s possible.
I’m not saying it works for everyone. As humans, we’re so good at telling ourselves stories and I don’t know why we tend to go negative. So make the story positive with a happy ending.

If your lymphoma progresses, then the action will be taken to treat it. Yes, there would be stronger chemo, sometimes targeted therapies, which always sounds scary. But it is a means to fighting the invader and winning. I looked at chemo as an ally in my war instead of dreading it. A stem cell transplant, from my experience, was not a walk on the beach but it was an incredible journey and one I’d do again if I needed to.
For your sake, I do hope you won’t have to face this in the future but if you must, just know it’s all doable, survivable and can have a happy ending. ☺️