Non hodgkins lymphoma spleen

Posted by grand4 @grand4, Oct 4, 2018

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

Hello @grand4. I would like to invite @maisyann, @mepowers, @ladygolfder18, and @dougmann who also have experience taking rituxan (rituximab). @dougmann also has some experience with spleen pain.

@grand4, if you don't mind me sharing, was removing your spleen discussed with you as a potential treatment?

My diagnosis was CNS Lymphoma. I had no spleen issues. In fact, Rituxin was the easiest part of my treatment. I felt like the Rituxin brought clarity to my brain whether is was that or the Chemo made my brain foggy, I don’t know. No bad experiences with Rituxin. Best of luck @grand4!

I was diagnosed with splenic marginal zone small b cell lymphoma in April of 2017. The Doctors at Mayo Rochester removed my enlarged spleen July 2017. In September 2017 I had another bone marrow biopsy and flow cytometry and the lyphoma was still in the bone marrow. In October I started 4 weeks of Rituxan. Had no side effects to the Rituxan. After the Rituxan the lymphoma is now gone but I still have night sweats and fatigue . I am now on wait and watch until the end of January next year.

@JustinMcClanahan

Hello @grand4. I would like to invite @maisyann, @mepowers, @ladygolfder18, and @dougmann who also have experience taking rituxan (rituximab). @dougmann also has some experience with spleen pain.

@grand4, if you don't mind me sharing, was removing your spleen discussed with you as a potential treatment?

Jump to this post

Yes, It was discussed, however the doctor was totally NOT for removal of the spleen.

I have just been diagnosed with a Splenic cyst and an enlarged spleen and liver. Awaiting results of CT scan next week with interest to see if my Indolent Follicular Lymphoma is back. I was originally diagnosed in August 2000. Relapsed with an extra nodal tumour on my scalp in March 2012.

I was diagnosed with SMZL in December of 2018. I've had several iron infusions but nothing else. I am starting to have some pain where my spleen is but my biggest problem is hurting all over my body and chronic fatigue. The last week or so I have been running a low grade fever on and off. Does anyone else have those types of symptoms? Since this is so new to me, I'm not sure if it's something else or related to the SMZL. My next visit with my Oncologist is next month and I will talk with him also. Thank you

@caroldk I see you are new to connect welcome.
Although I do not have the same lymphoma or symptoms as you have. Fatigue, and pain I believe is are symptoms, some patients do experience from time to time.
I do recommend you contact your Dr's office. Were you experiencing these symptoms prior to Dec? Or have they started since getting iron infusions?
You could also have been exposed to the flu? Cause we have low resistance to viruses.
Please contact your DR, and let us know what he says if you can?

I wish you the best.
Jackie

@travelgirl

@caroldk I see you are new to connect welcome.
Although I do not have the same lymphoma or symptoms as you have. Fatigue, and pain I believe is are symptoms, some patients do experience from time to time.
I do recommend you contact your Dr's office. Were you experiencing these symptoms prior to Dec? Or have they started since getting iron infusions?
You could also have been exposed to the flu? Cause we have low resistance to viruses.
Please contact your DR, and let us know what he says if you can?

I wish you the best.
Jackie

Jump to this post

Hi Jackie, I was experiencing some of the symptoms prior to the iron infusions. I had fatigue and pain but it's gotten worse but I didn't run a fever. My Lymphoma is very rare, and I heard that some Oncologists don't know a lot about it. I will keep you updated as to what he says.

@caroldk are you able to get a second opinion from Mayo Clinic. They have a HUGE building and wing they just built in Jacksonville. Fl. They have all kinds of studies going on specifically geared towards Lymphoma. Can you reach out to them for a consultation? They also have facilities in Phoenix and Rochester, Mn. Maybe one of the Dr's there can help you? Or they have a study you can get in that maybe of benefit to you?

Does soaking in a warm bath help your symptoms at all? Or maybe applying some Ben Gay to the sore spots?

I wish you the best.
Please keep us posted, but do call your DR and see if he can give you some answers and help to alleviate your symptoms.

Praying you get relief..
And I hope you have a Nice Valentine Day..
Jackie

@caroldk

Hi Jackie, I was experiencing some of the symptoms prior to the iron infusions. I had fatigue and pain but it's gotten worse but I didn't run a fever. My Lymphoma is very rare, and I heard that some Oncologists don't know a lot about it. I will keep you updated as to what he says.

Jump to this post

@caroldk I also have SMZL I was diagnosed in April of 2017 at Mayo Rochester. In July 2017 I had my spleen removed at Mayo. I went back home, then in September 2017 I had another bone marrow biopsy that showed that I still had lymphoma in the marrow. So I went on 4 weeks of Rituxan. I have the same problems as you do with fatigue, random pain in joints and muscles. My temps can range by up to 3 degrees from morning to night. If you have any questions just ask. If you don't mind sharing how did you receive the diagnoses of SMZL? Good luck to you.

@travelgirl

@caroldk are you able to get a second opinion from Mayo Clinic. They have a HUGE building and wing they just built in Jacksonville. Fl. They have all kinds of studies going on specifically geared towards Lymphoma. Can you reach out to them for a consultation? They also have facilities in Phoenix and Rochester, Mn. Maybe one of the Dr's there can help you? Or they have a study you can get in that maybe of benefit to you?

Does soaking in a warm bath help your symptoms at all? Or maybe applying some Ben Gay to the sore spots?

I wish you the best.
Please keep us posted, but do call your DR and see if he can give you some answers and help to alleviate your symptoms.

Praying you get relief..
And I hope you have a Nice Valentine Day..
Jackie

Jump to this post

Thank you Jackie. I would love to go to the Mayo clinic. I will check into it. Thank you so much for your advice. Happy Valentines Day to you also. Prayers for you at well.

@scsimpson

@caroldk I also have SMZL I was diagnosed in April of 2017 at Mayo Rochester. In July 2017 I had my spleen removed at Mayo. I went back home, then in September 2017 I had another bone marrow biopsy that showed that I still had lymphoma in the marrow. So I went on 4 weeks of Rituxan. I have the same problems as you do with fatigue, random pain in joints and muscles. My temps can range by up to 3 degrees from morning to night. If you have any questions just ask. If you don't mind sharing how did you receive the diagnoses of SMZL? Good luck to you.

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Thank you so much for sharing with me what's going on with you. I had pain in my stomach and I was anemic so a Ct scan was done. My spleen was enlarged so I was sent to see an Oncologist. He ran a JAK 2 blood test and he said if it came back negative that he would do a bone marrow biopsy. It came back negative so he did the biopsy and it showed SMZL. This is so new to me and because it's so rare, I feel alone with it. I'm not sure I like my Oncologist either so that doesn't help.

@caroldk

Thank you so much for sharing with me what's going on with you. I had pain in my stomach and I was anemic so a Ct scan was done. My spleen was enlarged so I was sent to see an Oncologist. He ran a JAK 2 blood test and he said if it came back negative that he would do a bone marrow biopsy. It came back negative so he did the biopsy and it showed SMZL. This is so new to me and because it's so rare, I feel alone with it. I'm not sure I like my Oncologist either so that doesn't help.

Jump to this post

@caroldk I also am JAK2 negative & CD20 negative. Please don't feel alone there are a lot of great people here that you can always communicate with. As far as for SMZL it is slow growing and people live a good and long life with it. As for Mayo I can't recommend it enough. I am been to Rochester 3 times in the past two years and it has always been a great experience. Best wishes for you.

Steve

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