Hi. Also went to MDA Houston, Dr. Chihara. He doesn’t like splenectomies, mainly Rituxan. Were you given idea how long PFS? How was your labs post-rituxan? I have low platelets/lymphocytes/IGG rn and concerned Rituxan could bring latter two down lower. Am mulling over this study rn… https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/1097-0142(20010115)91:2%3C294::AID-CNCR1001%3E3.0.CO%3B2-W#:~:text=BM%20infiltration%20ranged%20from%2010,patients%20showed%20an%20unmodified%20picture.
My hematologist/oncologist at Mayo just asked if I would be part of a trial for splenic marginal zone low grade B cell Lymphoma/Leukemia - what a mouthful! Apparently, most cases are in MN and they are trying to find out why.
That’s great Elaine. It’s a major research facility. Did he mean most cases of SMZL patients live in Minnesota?? Did he give any specifics about the trial, name the treatment? Sorry, just trying to learn!
Dont let them wait and watch. Seek another opinion. The first dr I went to said the same thing. I decided to go to MDA and the dr said no to wait watch. It needs to be treated. My spleen was 21 cm. After rituximab is has now shrink to 11 cn.
Considering IV Vitamin C as complementary therapy, with SMZL. Since my spleen is already slightly enlarged from sequestering platelets, would a supplement known to increase platelets (vitamin C) make the spleen enlarge even more? My hematologist said “no” but am wondering if anyone else with SMZL has experience with IV Vitamin C and its effects? Thanks!
Considering IV Vitamin C as complementary therapy, with SMZL. Since my spleen is already slightly enlarged from sequestering platelets, would a supplement known to increase platelets (vitamin C) make the spleen enlarge even more? My hematologist said “no” but am wondering if anyone else with SMZL has experience with IV Vitamin C and its effects? Thanks!
Hi @lila1, I found several replies from other members who have experience with Vit C infusions or family members with the treatment. While they’re not specifically for SMZL they were for cancer patients. Here are 3 of the links:
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My labs were giod post rituximab. My spleen went down to 11 cm. Will have another cat scan and lab work in November
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1 ReactionThat’s great Elaine. It’s a major research facility. Did he mean most cases of SMZL patients live in Minnesota?? Did he give any specifics about the trial, name the treatment? Sorry, just trying to learn!
Hi glk. How many rounds of rituxan did you receive? How else did it go for you in addition to shrunk spleen?
Considering IV Vitamin C as complementary therapy, with SMZL. Since my spleen is already slightly enlarged from sequestering platelets, would a supplement known to increase platelets (vitamin C) make the spleen enlarge even more? My hematologist said “no” but am wondering if anyone else with SMZL has experience with IV Vitamin C and its effects? Thanks!
Hi @lila1, I found several replies from other members who have experience with Vit C infusions or family members with the treatment. While they’re not specifically for SMZL they were for cancer patients. Here are 3 of the links:
@lisapion77 https://connect.mayoclinic.org/comment/705348/
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@beths77 https://connect.mayoclinic.org/comment/850571/
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https://connect.mayoclinic.org/comment/765695/
More can be found by typing in Vitamin C Therapy in the search bar at the top. Hopefully this is helpful for you in getting positive feedback.
Is your hematologist on board with you receiving the treatment?
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1 ReactionThank you Lori! When I asked hema about it he indicated he knew nothing about it even though he has been a hema for 25 years. Surprising.