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.

Mentor
Lori, Volunteer Mentor | @loribmt | Oct 24, 2021
In reply to @cdwilm27 "Lori, that was one of the best explanations I have ever heard. Thank you for the..." + (show)
@cdwilm27

Lori, that was one of the best explanations I have ever heard. Thank you for the prompt response!

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My pleasure. 💕 It was kind of funny because my daughter and I were just talking about that subject this morning! So it was fresh in my head!! She recently ordered a new car and finding it difficult to wait for it get built. In the meantime, she’s seeing so many of the same cars running around and never realized how many there were! 🙃

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stankent | @stanleykent | Oct 26, 2021
In reply to @cdwilm27 "My second infusion is today. My latest labs are not the best. H&H are 10.4 and..." + (show)
@cdwilm27

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.

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If you're willing to share, am wondering if the second infusion went ok and how you feel the days after? Am wishing this is going well for you.
My checkup was last Thursday and test showed the gradual progression of this lymphoma. H&H were ok , 14 and 44, Platelets a bit lower at 97.
The CT showed a new spot of concern in my lung and have follow up Lung function and PET tests next week. Am very concerned.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 27, 2021
In reply to @stanleykent "Yes, Once there are medical concerns, much information is available. And learning is good, and feel..." + (show)
@stanleykent

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

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Hi @stanleykent Thought I’d stop by this morning to see how your appointments went this past week. You had a full day with labs, scans and office visits. I hope it’s all good news! Any change in your lungs and spleen??

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1 reply
stankent | @stanleykent | Oct 28, 2021
In reply to @loribmt "Hi @stanleykent Thought I’d stop by this morning to see how your appointments went this past..." + (show)
@loribmt

Hi @stanleykent Thought I’d stop by this morning to see how your appointments went this past week. You had a full day with labs, scans and office visits. I hope it’s all good news! Any change in your lungs and spleen??

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Lori, Hi, I had commented a couple days ago with my question to cdwilm27. The CT showed a suspicious spot in my lung and have tests scheduled for Nov 4.

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cdwilm27 | @cdwilm27 | Oct 28, 2021
In reply to @stanleykent "If you're willing to share, am wondering if the second infusion went ok and how you..." + (show)
@stanleykent

If you're willing to share, am wondering if the second infusion went ok and how you feel the days after? Am wishing this is going well for you.
My checkup was last Thursday and test showed the gradual progression of this lymphoma. H&H were ok , 14 and 44, Platelets a bit lower at 97.
The CT showed a new spot of concern in my lung and have follow up Lung function and PET tests next week. Am very concerned.

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Stan, I commented back to you yesterday, somehow that comment did not get posted.
My infusion last week went well. I did have a mtg with my oncologist who told me If the Rituximab didn't help me that I may need 4 more weeks of infusions, but this time it would be chemo.
My H&H this week has improved and I actually feel a lot better. I'm sorry the CT showed a new spot on your lung. I will comment tomorrow on how today's infusion went.

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1 reply
stankent | @stanleykent | Oct 28, 2021
In reply to @cdwilm27 "Stan, I commented back to you yesterday, somehow that comment did not get posted. My infusion..." + (show)
@cdwilm27

Stan, I commented back to you yesterday, somehow that comment did not get posted.
My infusion last week went well. I did have a mtg with my oncologist who told me If the Rituximab didn't help me that I may need 4 more weeks of infusions, but this time it would be chemo.
My H&H this week has improved and I actually feel a lot better. I'm sorry the CT showed a new spot on your lung. I will comment tomorrow on how today's infusion went.

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HI Thanks for commenting again. Am wondering if there is an issue with the forum as Lori didn;t see my previous comment/question. It is good to hear your infusions are going well and hope they are effective. I have no idea how fast Rituximab works
I expect your previous lab results, current infusion plan, and early December labs will provide a lot of information to be analyzed during your second opinion visit in December.
Do they do weekly blood tests?
Thanks

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 28, 2021
In reply to @stanleykent "HI Thanks for commenting again. Am wondering if there is an issue with the forum as..." + (show)
@stanleykent

HI Thanks for commenting again. Am wondering if there is an issue with the forum as Lori didn;t see my previous comment/question. It is good to hear your infusions are going well and hope they are effective. I have no idea how fast Rituximab works
I expect your previous lab results, current infusion plan, and early December labs will provide a lot of information to be analyzed during your second opinion visit in December.
Do they do weekly blood tests?
Thanks

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Hi Stan and @cdwilm27, I think the comments are functioning as they should. Stan your comment is here: https://connect.mayoclinic.org/comment/648371/

Cdwilm27, I'm afraid your post yesterday didn't go through. Thanks for reposting today and keep the group up to date on how the infusions are going.

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1 reply
cdwilm27 | @cdwilm27 | Oct 28, 2021
In reply to @colleenyoung "Hi Stan and @cdwilm27, I think the comments are functioning as they should. Stan your comment..." + (show)
@colleenyoung

Hi Stan and @cdwilm27, I think the comments are functioning as they should. Stan your comment is here: https://connect.mayoclinic.org/comment/648371/

Cdwilm27, I'm afraid your post yesterday didn't go through. Thanks for reposting today and keep the group up to date on how the infusions are going.

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So Stan did see my reply from today?

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2 replies
stankent | @stanleykent | Oct 28, 2021
In reply to @cdwilm27 "So Stan did see my reply from today?" + (show)
@cdwilm27

So Stan did see my reply from today?

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yes, you must have sent it early this morning. Thanks

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cdwilm27 | @cdwilm27 | Oct 29, 2021

Yesterday's Rituximab infusion went well. The nurse was able to increase the rate of drops per minute as my body has now accepted this med and no longer causes the reaction I had when first infused. I was out in 2.5 hours. I did have the fatigue that I normally experience after my infusion. Today I feel good. Next Thursday is supposed to be my last infusion. I will meet with the doctor before and discuss my treatment plan. Happy Halloween Friday!

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