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

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

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.

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.

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?

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.

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

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

Good morning, Stanley. SMZL is fortunately, (is that even the right word when dealing with a blood cancer?) a slow progressing situation and I know you’re on a watch and wait holding pattern. That’s a difficult position to be in sometimes as we’d rather just “know and deal with it”. At least that’s how I am. I like to face my enemies head on and give ‘em the stink eye. 😉 Hopefully you’re finding the conversations in Connect helpful with the handful of others who share your same condition.

I noticed that you have surgery scheduled next Monday for the nodule on your lung. I took the liberty of reading through your past posts and haven’t seen any conversations about your lung condition except in passing. We have a very active Lung Cancer group if you’d like to Connect with some members who have experience and encouraging journeys to share. I’d like to introduce you to a fellow mentor, @merpreb.

Anytime we have surgery it’s an anxious time. I be thinking of you Monday and hoping all goes well for you. 🙂 Are you feeling ok, any concerns?

Merry, A bit of history. Two years ago, during my Lymphoma diagnosis, a lung nodule was discovered, then a biopsy and PET confirmed Adenocarcinoma, which resulted in an upper right lobectomy. It was stage 1, surgery only, no chemo, and was on 6 month oncology follow ups. My recent CT in Oct showed a 7mm semisolid nodule in my lower left lobe. The PET showed slight activity and will have what was termed "wedge resection" surgery on Nov 22.
All of this has been in Rochester. Is nice to see how you mentors follow the discussions and provide information and support when possible. Thanks