1. < Blood Cancers & Disorders

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

Posted by April @sabtahis, Jul 24, 2016

There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

trixie1 | @trixie1 | 2 days ago

I was treated on January 2023
with Bedamustine and Rituxin with a patch for 24 hours to stimulate my wbc. I had this 3 day treatment until June 2023. It was stage 4 in my bone marrow. I'm just curious that everyone else had 4 treatments of Rituxin. Not Bedamustine.

REPLY
1 reply
monicalu2626 | @monicalu2626 | 2 days ago
In reply to @trixie1 "I was treated on January 2023 with Bedamustine and Rituxin with a patch for 24 hours..." + (show)
@trixie1

I was treated on January 2023
with Bedamustine and Rituxin with a patch for 24 hours to stimulate my wbc. I had this 3 day treatment until June 2023. It was stage 4 in my bone marrow. I'm just curious that everyone else had 4 treatments of Rituxin. Not Bedamustine.

Jump to this post

It is interesting… the different treatments that our docs are saying are first line…
Nothing but Rituximab was suggested for my first four treatments. I’ll know what’s next after my March 6 scans/labs.
Has your treatment been successful so far? Did you have any side effects?
I hope you are feeling ok.

REPLY
andilynn | @andilynn | 1 day ago
In reply to @mrgreentea "Hi @andilynn - one comment - I heard that some ppl give themselves subcutaneous IgG shots..." + (show)
@mrgreentea

Hi @andilynn - one comment - I heard that some ppl give themselves subcutaneous IgG shots every week or two. They mention 2 benefits - they can do it at home, and it evens out the IgG over the month. This is what I will try to get when they say I can get IgG. It's too bad that IgA replacement therapies don't exist yet (I have low IgA). I did see that there is research going on in this area, so fingers crossed. Finally, I'm on Brukinsa 8 months so far, no issues yet.

Jump to this post

Hi Mrgreentea,

It’s good to hear that you’re doing well on Brukinsa. May I ask what your dosage is? My first oncologist had me on 4 pills a day. That was too much for me. I switched oncologists and now I’m on one a day. We’ll reevaluate in a couple months to see if it’s working, or if we need to increase the dosage. I’ve been getting subcutaneous immunoglobulins for over a year. It’s done at a hospital, by wonderful nurses, every four weeks.
I wish you all luck on your health journey.

REPLY
1 reply
monicalu2626 | @monicalu2626 | 1 day ago
In reply to @monicalu2626 "Hi Lori, thank you for the quick reply. Hello everyone! It’s been difficult finding others who..." + (show)
@monicalu2626

Hi Lori, thank you for the quick reply.
Hello everyone!
It’s been difficult finding others who are living with SMZL. It’s sure a marathon, vs a sprint…and a bit of a mystery. I did read thru many of the posts. Very helpful.

I completed four weeks of Rituximab infusions on Jan 31. Unfortunately, I had a reaction during 3 of the 4 treatments- very scary! Thankfully the nursing team was always prepared and compassionate.
That said, I’m on a break for the month of Feb and will start up again on March 7. Depending on labs and scans, it may be that I’m starting maintenance every 2 months. Fingers crossed!
If not, we’ll figure out what’s next.

When I was finally diagnosed, after two years of trying to improve my anemia, unfortunately, my spleen had doubled in size and 70% of my bone marrow was involved. The fatigue!! and shortness of breath!! limited me to any kind of activity for only about 15 minutes at a time.
(my job requires a lot of travel, and often 15-20,000 steps a day)

Luckily, my system seems to be responding to the R.
Thanks for the welcome!

Jump to this post

Hi everyone, I’m hoping you can please share about pain? After each of my four initial Rituximab infusions I experienced burning bone and nerve pain in my legs. Because my bone marrow is quite involved, I expected some pain, but not to the extent that it wakes me up.
Have you had this type of pain? If so, what helped?

Also- I’m wondering if anyone experienced the infusion reaction rigors? Was it just during your first treatment? Or were you blessed to have no allergic reaction?

Thank you in advance for sharing!

REPLY
mrgreentea | @mrgreentea | 1 day ago
In reply to @andilynn "Hi Mrgreentea, It’s good to hear that you’re doing well on Brukinsa. May I ask what..." + (show)
@andilynn

Hi Mrgreentea,

It’s good to hear that you’re doing well on Brukinsa. May I ask what your dosage is? My first oncologist had me on 4 pills a day. That was too much for me. I switched oncologists and now I’m on one a day. We’ll reevaluate in a couple months to see if it’s working, or if we need to increase the dosage. I’ve been getting subcutaneous immunoglobulins for over a year. It’s done at a hospital, by wonderful nurses, every four weeks.
I wish you all luck on your health journey.

Jump to this post

@andilynn I take 2 pills 2x/day w/water. I also drink about 64oz during the day, which can help reduce stress on the kidneys. No reactions. I am curious if your docs have offered any reasons for your response to it. I know other folks have reacted to Z...you might seek them out & see if they have found any solutions (maybe, even as simple as taking it with food). I am also on the CLL community at healthunlocked.com - that would be another place to ask. If Z doesn't work out you can always ask your doc about one of the newer treatment options... Take Care.

REPLY
mrgreentea | @mrgreentea | 1 day ago
In reply to @monicalu2626 "Hi, thanks for sharing! I’m wondering if you did Rituximab maintenance, or are you doing Brukinsa..." + (show)
@monicalu2626

Hi, thanks for sharing! I’m wondering if you did Rituximab maintenance, or are you doing Brukinsa instead? TIA

Jump to this post

Hi @monicalu2626, my doc started me with Brukinsa (aka Z) last June. I think my WBCs were around 60,000 at the time. I was dx'd with CLL,WM, and SMZL stage 4... He recently suggested that **I** might consider a BCL2 or a CD20 antibody (like rituximab, though he mentioned obinutuzumab) to "deepen the response". I don't feel I have enough info yet to make that decision myself...I'll discuss it again at my next appt in March.

I was really sorry to read that you had such a bad experience with rituximab!! It feels like we all need to play russian roulette with drugs on this journey. Always hoping for the best.

REPLY
View MoreView Less
Please sign in or register to post a reply.