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

It's nice to meet you, Stanley. It looks as if you have had your hands full with health issues. I couldn't find very much about your lung problems. Would you mind explaining what is going on, what you are having done?

I'd love to send you a link to the lung cancer group and a discussion where you can connect (pun intended) with others who also have lung cancers, or lung illnesses.

Good luck on your surgery next week. I will join Lori wondering how you do.

I am the Mentor for the lung cancer group and if I can help in any way please let me know.

Lori and Merry, Good morning. Thank you for your comments. I have seen Merry's comments in a couple Lung Cancer threads. "Mutifocal Adenocarcinoma of the lung, continual recurrences" and "Mutiple Lung Nodules" Both threads are interesting and informative. At this point I'm not sure where I fit in and still sort of in denial. Will see how this next week goes, and anxious to see post surgery lab results.
Thanks again.

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?

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?

For the past 2.5 years I am seeing a Rochester Mayo hematologist and labs for my SMZL every 6 months. And have labs locally at the three month points. The Hematologist would like another Bone Marrow biopsy and blood workup in the next few months to establish a new baseline.. Over this time, my labs are very slowly trending worse and my spleen is gradually increasing in size. So am wondering when and where this journey will lead. But that may be on hold as another lung nodule popped up on the recent CT.
To explain further, during my every 6 month visits to Mayo, I also see an Oncologist. Two years ago while diagnosing my SMZL, they found early stage lung cancer and had surgery at that time. For this new lung nodule, I am scheduled for surgery on Monday.

For the past 2.5 years I am seeing a Rochester Mayo hematologist and labs for my SMZL every 6 months. And have labs locally at the three month points. The Hematologist would like another Bone Marrow biopsy and blood workup in the next few months to establish a new baseline.. Over this time, my labs are very slowly trending worse and my spleen is gradually increasing in size. So am wondering when and where this journey will lead. But that may be on hold as another lung nodule popped up on the recent CT.
To explain further, during my every 6 month visits to Mayo, I also see an Oncologist. Two years ago while diagnosing my SMZL, they found early stage lung cancer and had surgery at that time. For this new lung nodule, I am scheduled for surgery on Monday.

I can appreciate your comment on "not comfortable, but tolerable" and wanted to add that it was the procedure that finally determined my diagnosis. Initially, my doctors thought I might have CLL. How often do you see your oncologist? I had stretched my appointments out to 6 months but am back to 3 months because of a visit to the ER this summer (suspected heart issues that turned out to be indigestion...) I like the more regular visits.

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?

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.

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