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.

stankent | @stanleykent | Oct 29, 2021

In reply to @cdwilm27 "So Stan did see my reply from today?" + (show)

cdwilm27, Yes, I think I received all the messages. I thought I acknowledged this yesterday, but must not have hit reply because I don't see it posted. Thanks and please stay in touch.

cdwilm27 | @cdwilm27 | Oct 29, 2021

Stan, I will be praying that the spot on your lungs is benign.

cdwilm27 | @cdwilm27 | Oct 29, 2021

Stan, I do get weekly labs drawn. My H&H went from 10.4 and 32.8 on 10/20 to 11.3 and 35.2 on 10/27. My lowest labs were week 1 when I was 9.9 and 32 on 10/4.

stankent | @stanleykent | Nov 5, 2021

In reply to @cdwilm27 "Stan, I do get weekly labs drawn. My H&H went from 10.4 and 32.8 on 10/20..." + (show)

cdwilm27, Hello, Is nice to see your labs are showing improvement and hope they continue. I think you have finished your infusions and wondering if they will monitor your progress or if other treatments are being considered. ?
The spot in my lung is small, 7 mm, but PET showed activity. I have follow up appointments to determine what is the best course of action. Will look around Mayo connect to see there are other threads that I can also join.
PET did not show any SMZL related issues, other than a spleen measurement increase of 1 cm over the past year.

reneemp | @reneemp | Nov 12, 2021

In reply to @kayak4me "My name is Laurie and I was diagnosed almost 2 years ago with SMZL after routine..." + (show)

Laurie,

I am wondering if you have found information about how to be proactive with SMZL? I am 58 and recently diagnosed. Waiting for bone marrow biopsy. Thanks. Renee

kayak4me | @kayak4me | Nov 13, 2021

In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)

Hello Renee! I love your question and even though I have not found a great deal of research due to the rarity of SMZL, I have discovered that regular exercise and a whole diet have helped. I am also a diabetic, for which I have my A1c tested every nine months. A1c is an average blood glucose reading over a three month span. Those 3 months prior to each test, I am fastidious about my exercise and diet. This last time, my SMZL bloodwork was at the same time. My results for each appointment showed excellent numbers. I do not think it's a coincidence.

That being said - I don't think there is magic to being proactive - but it is challenging to always be "good."

Good luck with the bone marrow biopsy. I had an excellent team (there were 4 or 5 people in the room) with one person at my head whose job was to keep me comfortable. You'll walk out of the procedure but there is discomfort - just wanted you to be prepared.

I would really love to continue talking with you - since SMZL is usually a "wait and watch" condition - it can be frustrating to do just thatt and I rarely find people who want to talk about it!
Laurie

reneemp | @reneemp | Nov 13, 2021

In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)

Laurie,

Thanks for getting back to me. I agree about the challenges about being good - healthy diet and exercise. The most challenging thing for me is the fatigue. I use to be much more active and it’s exhausting being tired.

I am a breast cancer survivor so I already am working hard at being healthy. I do admit last night I had some sweet potato chips - yummy!

Thanks for the bone marrow info. Clearly something I am not looking forward too.

Yes, continuing to connect would be nice.

It’s getting cold in Minnesota. Enjoy the day. Renee

Lori, Volunteer Mentor | @loribmt | Nov 13, 2021

In reply to @reneemp "Laurie, I am wondering if you have found information about how to be proactive with SMZL?..." + (show)

Hi Renee, being a veteran of bone marrow biopsies with more than 13 ‘under my belt’ so far. 3 were without anesthesia, the other 10 were in la la land of a mild sedative, which I highly recommend!
It’s the same sedative given for a colonoscopy. You’re under 10 minutes tops and then wake up oblivious to the procedure. At Mayo, I wake up to Lorna Doone’s and Juice. ☺️

If the procedure will be done in a facility where sedation isn’t offered have your NP get you a prescription for lorazapam. A small dose of 1mg or 1.5 mg a half hour before the procedure will help relax you.
You’ll have a local anesthetic injected in the area which will help numb the site of the aspiration.

If I’m having it without anesthesia, I ask one of the nurses to keep engaged in conversation for distraction. That helps quite a bit. The procedure doesn’t take long and usually the sample area feels just a little bruised for the next day or so.

Is this your first biopsy?

reneemp | @reneemp | Nov 13, 2021

In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)

Lori,

Yes this will be my first bone marrow biopsy and I appreciate your advice. I will definitely opt for lala land and snacks! Thx. R

stankent | @stanleykent | Nov 15, 2021

In reply to @reneemp "Laurie, Thanks for getting back to me. I agree about the challenges about being good -..." + (show)

Hello, I also have SMZL and am interested in the discussions and experiences with this lymphoma and appreciate this forum. They found my SMZL in 2019 and am being seen regularly on a watch and wait. Some places offer sedation for the bone marrow biopsy, Due to scheduling difficulties I did not have sedation and the staff was very good and the procedure was not comfortable, but tolerable.