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

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??

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.

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

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?

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.....

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😍)

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.

Well, you got one infusion out of the way, in a roundabout fashion! 😉 It’s pretty common to have a reaction with the first Rituximab treatment. My transplant doctor told me to it was likely so I wasn’t too surprised when it happened. But really didn’t know ‘what’ the reaction would feel like. About the same timeframe as yours, 20 minutes, I got a feeling like a piece of potato chip got lodged under my tongue in the back. However, I wasn’t eating. LOL Then the feeling moved to the throat and started on the other side. Ope…that was the aha moment! So I alerted the nurse, who already had 50 mls of Benadryl ready to inject into the line and prednisone if needed. But the Benadryl worked. I’d had Benadryl and Tylenol before the treatment too with the slow drip time. Anyway, it worked as we slowed it down even further. The subsequent infusions went off without a hitch. I expect yours will too. That was the only side effect I had.

I’m sure you’re relieved to have that first on out of the way so you know what to expect in the future, sans the reaction! We’ll hope that it’s a one-off.
It’s great your nurse has the same infusions. Makes you feel a little more comfortable, doesn’t it? ☺️

I had my Rituximab infusion on 10/14 and 10/15. The nurse administered premedication of Benadryl and Tylenol prior to the infusion start. About 20 minutes into the Rituximab infusion which was started at a very slow rate, I began having shortness of breath and upper chest pressure. I was also very flushed my nurse told me. I was given O2 via nasal cannula and an IV cortisone of some sort. They restarted the medication again after about 15 minutes and the same thing happened although not to the same extent. At that point, they decided to give me some IV Demerol to assist with my infusion. I was only given a third of the medication on the first day. I returned the next day for the rest of the Rituximab and there were no side effects at all. The nurse who took care of me both days also gets Rituximab infusions so that was very helpful to have his perspective. My next infusion is on October 21st.

Hello, I will definitely report out on what the infusion experience was like.
My Hemoglobin and Hematocrit labs have gone down in the 6 weeks since I began this journey which is probably one of the factors in my doctor ordering this treatment for me. I am also curious to see Mayo's opinion of my diagnosis and treatment. Thank you for your comments and anyone else who would like to comment on their experience with SMZL.