Want to connect with others with Splenic B cell Marginal Zone Lymphoma

I am very grateful that my reaction wasn't worse than it was. My nurse, Ben was calm and capable. I felt much more confident with him taking care of me. BTW my second opinion with Mayo is scheduled for 12/17. By then I will have completed the 4-week course of Rituximab and will hopefully be on the road to remission. I do want to hear what the Mayo Dr has to say as I believe any and all information on this rare disease is beneficial.

I’m relieved right along with you that the reaction didn’t escalate. You were in very capable hands. It really helps when we’re given calm reassurance when our ‘red flags’ go off inside. ☺️

Now let’s hope the Rituximab does its magic for you. It really took care of my over-zealous B-cells and calmed those thugs right down. They’re critical to our health but when they’re just trolling around in our bodies, looking for trouble, they need some speed bumps!

I’m really happy for you getting an appt at Mayo and will be curious to hear what they have to say too. Following your journey can be really beneficial to other members in Connect. Will you report back to us after your appointment? (And certainly it’s not implied you have to wait that long to “Connect” with us!! We’re here 24/7😍)

Am glad to hear your first treatment is completed. Is the plan for 4 treatments? One ever two weeks?
As I mentioned, I have the same diagnosis and am leaning what may be ahead for me. My past lab results show Hemoglobin and Hematocrit levels are normal . My Lymphocytes are climbing and quite a bit above normal and Platelets are below normal. I bruise easily and spleen is enlarged, but really, no other symptoms.
I appreciate hearing the details of your treatment and future appointments, as well as Lori's comments and explanations. I have my 6 month follow up appointment in Rochester tomorrow, Oct 21, with Hematology and Oncology. I have follow up appointments with oncology because two years ago when they discovered my Lymphoma, they also found early stage lung cancer and they removed the upper lobe of my right lung. So far, no reoccurrence of that problem.
Thanks and take care.....

Just wanted to wish you good luck on your visit to Rochester tomorrow and hoping all your labs are encouraging! Oncology/hematology is my old stomping ground. You have a great group of doctors. I was just there last week.

Did you ever in your lifetime expect to be able to look at blood results and understand what they all mean? 😉 How our lives change with a diagnosis…

What is your follow up to check your lungs? Chest X-ray? CT scan?

Yes, Once there are medical concerns, much information is available. And learning is good, and feel one needs to be their own health advocate. ... but also be wary of the source of information one can find.
Tomorrow, labs and CT appointments in the morning. Hematology and Oncology appointments in the afternoon.

Chest CT is requested by Oncology as they are watching to see if there is any reoccurance, or issues with the lungs and chest.
Hematologist appointment is looking at the labs and checking the SMZL progression. The chest CT also shows most of the spleen , so size progression is monitored as well. I'm on "watch and wait" ... but waiting isn't easy. Always have "scanxiety" before these appointments.
Thanks

My second infusion is today. My latest labs are not the best. H&H are 10.4 and 32.8. Platelets were 94. (No wonder I have no energy) I will speak to the doctor today. My infusions are weekly, ending on Nov. 4th. I've also lost 4 lbs since last week.

I’ll be thinking of you today with round #2! Hopefully things go much smoother with this infusion.
Looking at your labs, the numbers aren’t too bad really, They’re all just under the low norm range.
Losing 4 pounds in a week is a bit (anyone else would be gleeful but I know how you’re feeling). We watch those things like a hawk. Did you have any change in your eating? Lack of appetite? Will be interesting to hear your doctor visit results.

Good luck today! What do you bring to keep distracted??

Hi Andi, I'm a 70 yr old woman who was diagnosed with SMZL 6 weeks ago after having night sweats over the summer. I'm in the middle of my 4-week Rituximab infusions. My oncologist told me that the cancer was in my bone marrow and that my spleen was twice its normal size. He told me that Rituximab works for about 85% of patients. I'm hoping that will be me. Right now I'm trying to eliminate sugar from my diet, eat more iron-rich foods, Hydrate with Alkaline water and eat more protein. I am also trying to exercise when I can like walking in my neighbourhood or riding my bike short distances. I live in Phx so the weather is perfect for being outdoors finally.
I will continue to comment on how my infusions are going and anything else that I have found helpful thru this journey.
One thing I had never noticed before is how many TV commercials there are targeting people with cancer. The advertisers are either selling a medication that can possibly prolong life or a hospital that specializes in treating cancer. Was it always this way and I'm just more sensitive to these ads now that I have cancer?

Hi, you and I have connected during part of your journey here on Connect with SMZL. I hope some more members come forward who have similar symptoms and treatments so they can offer some insight.
Your last comments caught my eye though. The TV commercials and how many are targeting people with cancer.
They’ve been around a long time but since it wasn’t impacting your life, your brain let it slide. It’s an interesting part of science called Reticular Activating System. There are all kinds of studies and information online. Years ago I took an immersion course in Mindfulness and RAS was one of the areas I chose to delve into.
The Reticular Activating System is a bundle of nerves at our brainstem that filters out unnecessary information so that things which are important get through. Basically your brain zeros in on something specific and triggers a subconscious reaction to look for that item. An example. Take the color of your car or model. Since you bought that car, how many times have you seen the exact car now. Or bought red shoes thinking you’re unique. And now, looking around you’ll instantly see red shoes on other people.
So in answer to your question, yep, you are more sensitive to cancer ads now that you have it.
https://extension.umn.edu/two-you-video-series/ras

Lori, that was one of the best explanations I have ever heard. Thank you for the prompt response!