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.

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elainejarrett | @elainejarrett | Aug 23 8:05am
In reply to @lila1 "Elaine, that is encouraging to hear. Steady is great. I also believe complementary therapies can make..." + (show)
@lila1

Elaine, that is encouraging to hear. Steady is great. I also believe complementary therapies can make a difference. Yes they can get expensive. Thank you for sharing some of your therapies. Did you try the ozone IV or just the ozone sauna? Am researching both. Thank you, Lila

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I still do ozone and vit C IVs. Have done for about 3 years now. I added ozone sauna for about a year but it was getting expensive so I stopped the sauna. There is something else out there that I have now added. It is an AI machine called Monicor.

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lila1 | @lila1 | Aug 26 1:12pm

Thanks Elaine for sharing knowledge. Reading up on Monicor now. Having a naturopath is helpful. Do you mind sharing some of the supplements they recommend besides IV Vitamin C? I’m taking the usual vitamins plus added turkey tail and colostrum for immune. Just consulted with nutritionist too if you’re interested. Lila

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jam1962 | @jam1962 | Nov 4 11:06pm
In reply to @elainejarrett "My labs are holding steady. Would you be able to connect me with someone who is..." + (show)
@elainejarrett

My labs are holding steady. Would you be able to connect me with someone who is dealing with non Hodgins monoclonal low grade B cell lymphoma/leukemia. Spleen is enlarged but oncologist said she has seen better and worse😳. Thanks for asking.

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I have non Hodgen’s B cell Lymphoma. My spleen was up to 21 cm. Treated with Rutixmed for 4 infusions. Cancer was/is predominantly in spleen and partial bone marrow.

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jam1962 | @jam1962 | Nov 4 11:13pm
In reply to @stanleykent "Elaine. You have probably read through the previous many pages of comments in this discussion. There..." + (show)
@stanleykent

Elaine. You have probably read through the previous many pages of comments in this discussion. There is alot of information and experiences that relate to Splenic Marginal Zone Lymphoma and, which I understand, is one of the many Lymphoproliferative Disorders. One of the things you'll read is the variety of symptoms that individuals will have and the different therapies that are administered. You mentioned losing weight. This was my concern as well. I think my spleen was large enough to press on my stomach and I would not eat as much. So I tried to eat more and eat more often and kept my weight stable. I did get Rituxan treatment last fall and my spleen reduced in size and I have gained weight since then.
I think you just had an appointment, Anything new or just stay on watch and see? Just curious, what part of the country do you live in and where you are getting care. Thanks

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Stanley Kent, your symptoms were like mine. I ate 3/4 less food, never really hungry, felt enlarged spleen, had night sweats and fatigue. Since 4th treatment of Rutixmed in June 2024, I have gained 29 lbs back and constantly wanting carbs and sugar. Originally from CA, moved to Spokane WA 7 years ago. Now in Arizona

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2 replies
stankent | @stanleykent | Nov 5 11:24am
In reply to @jam1962 "Stanley Kent, your symptoms were like mine. I ate 3/4 less food, never really hungry, felt..." + (show)
@jam1962

Stanley Kent, your symptoms were like mine. I ate 3/4 less food, never really hungry, felt enlarged spleen, had night sweats and fatigue. Since 4th treatment of Rutixmed in June 2024, I have gained 29 lbs back and constantly wanting carbs and sugar. Originally from CA, moved to Spokane WA 7 years ago. Now in Arizona

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jam1962
Just an update.
That was March of 2023 that I had commented and I had the 4 rituxan treatments in Sept 2022 At that time I felt good. My spleen has reduced in size, Lymphocytes were in normal range and platelets were also within normal range. I see the hematologist every six months and my recent October visit continued to show everything is slowly progressing back. The spleen is larger, platelets and lymphocytes are now out of normal range. But I feel good and only have a continuous tiny bit of spleen discomfort. The hematologist is pleased that I'm feeling well and that I have not had other symptoms and the SMZL is currently on a slow progression. So I'm on watch and wait and will see him again in April.
Thanks for the comment and good luck to you.

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jam1962 | @jam1962 | 4 days ago

Thank you for responding back. So if I am understanding your timeline, your spleen and blood tests are slightly under the normal range after 1.5 years? I am so happy to hear you are feeling well and no new symptoms! After your 4th infusion did you change your diet to he more protein and less sugar ? Also, may I ask how old you are? I am praying for you to feel well and good results!

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1 reply
stankent | @stanleykent | 2 days ago
In reply to @jam1962 "Thank you for responding back. So if I am understanding your timeline, your spleen and blood..." + (show)
@jam1962

Thank you for responding back. So if I am understanding your timeline, your spleen and blood tests are slightly under the normal range after 1.5 years? I am so happy to hear you are feeling well and no new symptoms! After your 4th infusion did you change your diet to he more protein and less sugar ? Also, may I ask how old you are? I am praying for you to feel well and good results!

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Correct, treatment was 1.5 years ago and at that time my spleen reduced in size and blood tests moved to normal ranges. Gradually, now my spleen is larger, platelets are slightly under normal levels and lymphocytes are above normal. I have not really changed my diet in the past 1.5 years other than eat a bit more because I don't get full as fast. I eat some sweets but not a lot. Probably the biggest change I've made is taking more vitamins. I can't say if they help or not, but realize my immune system is less than optimum. No one can say if my two lung cancers and a rare type of skin cancer is related to my weak immune system but hope the vitamins give the old immune system a little help. I'm 72 Good luck to you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 17 minutes ago
In reply to @jam1962 "Stanley Kent, your symptoms were like mine. I ate 3/4 less food, never really hungry, felt..." + (show)
@jam1962

Stanley Kent, your symptoms were like mine. I ate 3/4 less food, never really hungry, felt enlarged spleen, had night sweats and fatigue. Since 4th treatment of Rutixmed in June 2024, I have gained 29 lbs back and constantly wanting carbs and sugar. Originally from CA, moved to Spokane WA 7 years ago. Now in Arizona

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@jam1962, did the treatment reduce the size of your spleen? How are you feeling now?

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