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.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 24, 2023
In reply to @trevtwin "Elaine, Thanks for sharing! I’m sorry you’re going through this, but it’s amazing that you are..." + (show)
@trevtwin

Elaine,

Thanks for sharing! I’m sorry you’re going through this, but it’s amazing that you are not symptomatic. I’m still new to this and know that every person has a different story. I was very symptomatic and knew something was wrong and thus, the need to move quickly and treat. It’s a terrible thing what this can do to you mentally. So far, for me, daily meditation has been the most helpful for keeping me present and happy. Obviously, having strong support around you helps too. I think it can get frustrating when people try to relate on some level and fall WAY short. This is one of the main reasons why I wanted to meet others like me. Connect by private message if you would like to communicate more privately.

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Hi @trevtwin, along with @elainejarrett and @trixie1, you can also connect with @cdwilm27 @reneemp @stankent and others who have experience with SMZL.

You'll notice that I removed your personal email address. Mayo Clinic Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

What kind of meditation do you do daily? Do you use an app that you might recommend?

REPLY
trevtwin | @trevtwin | May 25, 2023

Hi Colleen, thanks so much for the connections. I may need your help in figuring out how to add them or connect with them.

Regarding meditation, I use the calm app. Tamara Levitt’s “21 days of calm” is a great place to start!

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somde | @somde | May 25, 2023

I just want to send you a big hug. I am not sure why you have to wait worrying. It is the worse thing in the world. Best of luck!

REPLY
elainejarrett | @elainejarrett | May 26, 2023
In reply to @trevtwin "Elaine, Thanks for sharing! I’m sorry you’re going through this, but it’s amazing that you are..." + (show)
@trevtwin

Elaine,

Thanks for sharing! I’m sorry you’re going through this, but it’s amazing that you are not symptomatic. I’m still new to this and know that every person has a different story. I was very symptomatic and knew something was wrong and thus, the need to move quickly and treat. It’s a terrible thing what this can do to you mentally. So far, for me, daily meditation has been the most helpful for keeping me present and happy. Obviously, having strong support around you helps too. I think it can get frustrating when people try to relate on some level and fall WAY short. This is one of the main reasons why I wanted to meet others like me. Connect by private message if you would like to communicate more privately.

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How did you do on treatment? Did you have any side effects? What symptoms did you start to experience? Are you feeling better now as I know there is no cure for what we are dealing with but, hopefully, there is some light at the end of the tunnel. It is a scary thing to be told you have cancer.

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trevtwin | @trevtwin | May 27, 2023

Elaine,

I just completed my 4th and final infusion of Rituxan. I had a reaction within the first 3 min of the first infusion, which was apparently predictable due to my excessively high lymphocyte count (27,000). They gave me meds and slowed the drip down and I was able to get through it…8 hrs later. The remaining treatments were fine but I had some side effects - nothing major. Mainly some body aches and discomfort, one day of flu like symptoms, and occasional low grade nausea. Also, I noticed within 36 hrs of the first treatment that my spleen has shrunk significantly. Furthermore, my WBC and lymphocyte counts have normalized. I’m meeting with my hematologist on Wednesday and I’m hoping he continues the good news. :). Yeah, this has been very difficult, but I’m trying my hardest to be in the present. The silver lining for me is that my wife and I are closer than we’ve ever been and I’m appreciating things so much more than previously, especially my two kids.

REPLY
1 reply
elainejarrett | @elainejarrett | May 27, 2023
In reply to @trevtwin "Elaine, I just completed my 4th and final infusion of Rituxan. I had a reaction within..." + (show)
@trevtwin

Elaine,

I just completed my 4th and final infusion of Rituxan. I had a reaction within the first 3 min of the first infusion, which was apparently predictable due to my excessively high lymphocyte count (27,000). They gave me meds and slowed the drip down and I was able to get through it…8 hrs later. The remaining treatments were fine but I had some side effects - nothing major. Mainly some body aches and discomfort, one day of flu like symptoms, and occasional low grade nausea. Also, I noticed within 36 hrs of the first treatment that my spleen has shrunk significantly. Furthermore, my WBC and lymphocyte counts have normalized. I’m meeting with my hematologist on Wednesday and I’m hoping he continues the good news. :). Yeah, this has been very difficult, but I’m trying my hardest to be in the present. The silver lining for me is that my wife and I are closer than we’ve ever been and I’m appreciating things so much more than previously, especially my two kids.

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So happy to hear you got through it all and fingers crossed it works for you. This gives me hope. Thank you.

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sunfishgirl | @sunfishgirl | Sep 12, 2023

Thought I’d give a quick update on my treatment with Zanubrutinib. Mostly good! I’ve been on it for six months. Had some bruising for a few weeks but that went away. I have had a bit of constipation and deal with it via probiotics and dried apricots. I’ve had three blood draws and all results were in the normal range. Will see my Dr in October. I am still not thrilled to have to take pills twice a day yet remain grateful for this treatment and others that wait in the wings for when I relapse once again. Some say a cure os five years away.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Sep 12, 2023
In reply to @sunfishgirl "Thought I’d give a quick update on my treatment with Zanubrutinib. Mostly good! I’ve been on..." + (show)
@sunfishgirl

Thought I’d give a quick update on my treatment with Zanubrutinib. Mostly good! I’ve been on it for six months. Had some bruising for a few weeks but that went away. I have had a bit of constipation and deal with it via probiotics and dried apricots. I’ve had three blood draws and all results were in the normal range. Will see my Dr in October. I am still not thrilled to have to take pills twice a day yet remain grateful for this treatment and others that wait in the wings for when I relapse once again. Some say a cure os five years away.

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Hi @sunfishgirl! Thank you for update about your treatment and the good news that it’s working! Think positive that you won’t relapse and the Zanubrutinib will keep you in remission. I don’t think anyone likes taking meds but when they work, it helps take the sting out of the daily chore a little. ☺️
I hope you have a great doctor visit in October with only good news! Thanks for checking in and let us know how your appt goes!

REPLY
stankent | @stanleykent | Sep 13, 2023
In reply to @sunfishgirl "Thought I’d give a quick update on my treatment with Zanubrutinib. Mostly good! I’ve been on..." + (show)
@sunfishgirl

Thought I’d give a quick update on my treatment with Zanubrutinib. Mostly good! I’ve been on it for six months. Had some bruising for a few weeks but that went away. I have had a bit of constipation and deal with it via probiotics and dried apricots. I’ve had three blood draws and all results were in the normal range. Will see my Dr in October. I am still not thrilled to have to take pills twice a day yet remain grateful for this treatment and others that wait in the wings for when I relapse once again. Some say a cure os five years away.

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Sunfishgirl. It's nice to hear from you and current treatment. I see you have taken Zanubrutinib for 6 months. How long will you be taking this or is it a permanent schedule? It's good to hear your blood work is in a normal range. I hope things stay positive for you.
For me, a year ago I had the 4 Rituxan treatments and feel pretty good this past year. Luckily I have avoided covid, flu, and infections. I can tell my spleen is getting larger again as was confirmed by my April appointments. My next checkup is later in October,,,,,, labs,CT, bone biopsy.
Thanks for your update.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Sep 13, 2023
In reply to @stanleykent "Sunfishgirl. It's nice to hear from you and current treatment. I see you have taken Zanubrutinib..." + (show)
@stanleykent

Sunfishgirl. It's nice to hear from you and current treatment. I see you have taken Zanubrutinib for 6 months. How long will you be taking this or is it a permanent schedule? It's good to hear your blood work is in a normal range. I hope things stay positive for you.
For me, a year ago I had the 4 Rituxan treatments and feel pretty good this past year. Luckily I have avoided covid, flu, and infections. I can tell my spleen is getting larger again as was confirmed by my April appointments. My next checkup is later in October,,,,,, labs,CT, bone biopsy.
Thanks for your update.

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Hi @stanleykent, do you think you’ll have another round of Rituxan to decrease the spleen enlargement? Wishing you only good news on your upcoming October appt. ☺️

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