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

Lori,
It is so encouraging to have forums such as these to share and talk about our conditions and procedures. You bring up the challenge of watching and waiting when we want to be active participants in our care plans. I felt somewhat relieved and thankful to have a diagnosis of SMZL and am lucky for it to have been diagnosed early. However, sitting still is not in my nature, and I find myself searching for research and information on how I can play a role. Have you seen much work on patient involvement and proactive care inbetween doctor visits? Recently I was made aware of a new book titled "Moving Through Cancer" by Dr. Kathryn Schmitz. "An exercise and strength-training program for the fight of your life." Slowly I'm seeing more attention to this topic. Your thougths?
Laurie

You brought up an interesting subject of proactive care. I’ve been extremely fortunate to have positive experiences with my medical teams and their approach to patient care. Instead of being “patient passive”, I appreciated the fact that I was encouraged to take charge! Like you, I’m not a stationary person! I need to move and be active. Throughout my AML chemo, I pushed my IV cart around the hospital wing 4 miles each day! My oncologist/hematologist and the nurses used to laugh along with me because I had a squeaky wheel! One of my nurses found a replacement so I could move more stealthy! ☺️

But in reality, they were all so supportive and felt that this was my key to quick recovery from the AML chemo. It was contagious too! Every day there would be another patient joining me in the hallways, motivated by the camaraderie of the cancer team. I was also provided with a physical therapist to give me instructions on using resistance bands to keep my muscles from atrophying and my bones strong while in the hospital.

My stint at Mayo was no different. They are all about patients being proactive in their own care. I was given the ‘tools’, the information and instruction for living a full and healthy life with exercising, diet, mental and emotional heath. It’s vital that we take charge of our own lives.

“Moving Through Cancer” sounds like a marvelous book! Thank you for sharing! It’s so important, in cancer care for patients, to remain as ‘normal’ as possible and exercise is crucial. It keeps us physically and mentally motivated. This would be a great new conversation in the Cancer group/managing symptoms. https://connect.mayoclinic.org/discussion/exercise-during-chemo/

Have you looked into this group?

Hello, it has been a while since I posted anything regarding my SMZL treatments. I have finished the initial 4 Rituximab infusions on 11/4. My labs have improved significantly, especially the H&H. I feel great and I have somewhat plateaued with my weight loss. My spleen went from 23 centimeters to 16. My doctor wants me to have 4 more infusions which will start on 11/29. I also have my 2nd opinion appt at Mayo on 12/17. I changed my diet completely to cut out as much sugar as I could. (prior to this diagnosis it was a major part of my eating habits) I drink alkaline water mostly and organic fruit and vegetables whenever possible. The nutritionist at Ironwood said the most important thing to concentrate on while getting the infusions is eating protein and drinking a lot of water to flush out the Rituximab so it doesn't linger after it's done killing cancer cells.

Fantastic news! Thank you for sharing your progress report. Rituximab worked its magic for me too so it’s great to hear how well it’s working for your SMZL. It’s also an inspiration to fellow members like @kayak4me who may be receiving this treatment down the road.
It’s tough to give up sugar isn’t it? I did a few years ago, along with no wine! Gasp!! But once the urge is over it’s amazing how easy it is to say no! And now I don’t miss wine at all. In fact my husband poured a little in a shot glass the other day, just for me to sip. Ugh! My once favorite wine tastes awful! But I still have to cheat daily with my small chocolate fix. I think it’s also important to have a guilty pleasure to balance things out. ☺️
What was your favorite sugary treat that you miss the most?

icecream during the summer and pie with real whipped cream during the winter. I do have my 4 dark chocolate-covered almonds as a small treat to myself daily.

Oh yup, I can feel the pain of saying goodbye to ice cream and whipped cream. I had a glorious 6 months where I needed to pack on calories no matter the source…this from my dietician at Mayo. I needed meat on my bones. Being lactose intolerant, my husband found Lactaid Salted Caramel swirl Ice Cream for me! I hadn’t had ice cream in years. I was in heaven.
Now I’m back to behaving and having my little square of dark chocolate daily. Though now and I again I have a fudgesicle after dinner…fat free/low sugar.
And I’ve learned to enjoy pumpkin pie sans whipped cream at Thanksgiving.

cdwilm27, Thanks for sending the update. It is great to hear you are responding well to the treatments and look forward to more posts as your care continues.

Stan, I hope you are doing well too. Happy Thanksgiving!

I did have a lung resection surgery on 11/22 and a 7mm adenocarcinoma nodule was removed. Two overnights at the hospital and recovery is progressing. So for the moment. my lung issue is, hopefully, behind me and my SMZL is watch and wait. I look forward to hearing from others as they deal with their SMZL. THANKS

Glad to hear you are recovering. I am also on watch and wait. Going in for a bone marrow biopsy next week. Not sure if that will change my ‘treatment’ of waiting. Enjoy the day. Renee