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:
I have now been diagnosed with Stage 4 Marginal Zone Lymphoma Cancer. I have had MGUS for the last 20 years. The last few years my MGUS numbers spiked and I am also dealing with progressive neuropathy for the last 15 years. I am about to do 3 rounds of Chemo for the Marginal Zone Lymphoma Cancer. The first 2 rounds will be with the drug BENDMUSTINE and the 3rd round will be with the drug RITUXIMAB. How much worse will my neuropathy get as I have no balance or motor skills as it is?I also have a walker which I absolutely need.
I have now been diagnosed with Stage 4 Marginal Zone Lymphoma Cancer. I have had MGUS for the last 20 years. The last few years my MGUS numbers spiked and I am also dealing with progressive neuropathy for the last 15 years. I am about to do 3 rounds of Chemo for the Marginal Zone Lymphoma Cancer. The first 2 rounds will be with the drug BENDMUSTINE and the 3rd round will be with the drug RITUXIMAB. How much worse will my neuropathy get as I have no balance or motor skills as it is?I also have a walker which I absolutely need.
@nboulet, I'm sorry to hear that MGUS progressed to marginal zone lymphoma. Unfortunately, both bendamustine and rituximab can sometimes cause or worsen peripheral neuropathy,
Have you talked to your oncologist about your concern about the potential neuropathy side effect? Did you have your first treatment?
I was on with my oncologist at Mayo yesterday to discuss CT scan results. He thinks it is almost time for me to start treatment for my Splenic Marginal Zone Lymphoma/Leukemia. He did mention Rituximab and I noticed some of you have experienced that. My spleen is now over 19cm. Besides the first treatment being rough, are there any precautions one should take? Can I still see my grandchildren and friends while undergoing treatments? I have been doing blood ozone therapy and Vitamin C for some time too. Not sure if they make a difference but they are doing no harm. My labs remain stable and my platelets run around the 100 mark. Any advice/comments?
I was on with my oncologist at Mayo yesterday to discuss CT scan results. He thinks it is almost time for me to start treatment for my Splenic Marginal Zone Lymphoma/Leukemia. He did mention Rituximab and I noticed some of you have experienced that. My spleen is now over 19cm. Besides the first treatment being rough, are there any precautions one should take? Can I still see my grandchildren and friends while undergoing treatments? I have been doing blood ozone therapy and Vitamin C for some time too. Not sure if they make a difference but they are doing no harm. My labs remain stable and my platelets run around the 100 mark. Any advice/comments?
Hi Elaine, I had Rituximab infusions and really, life didn’t change as far as visiting with friends and family or my daily routine. The treatments were very successful
I was already immuno compromised when starting the infusions. I think if you still follow the same protocol you’ve been using since Covid, with avoiding exposure to illness, wearing a mask when in close contact with anyone, friends or family, frequently washing your hands and not touching your face, you should be fine.
It’s hard not be be around friends and family. How old are your grand kids?
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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.
I have now been diagnosed with Stage 4 Marginal Zone Lymphoma Cancer. I have had MGUS for the last 20 years. The last few years my MGUS numbers spiked and I am also dealing with progressive neuropathy for the last 15 years. I am about to do 3 rounds of Chemo for the Marginal Zone Lymphoma Cancer. The first 2 rounds will be with the drug BENDMUSTINE and the 3rd round will be with the drug RITUXIMAB. How much worse will my neuropathy get as I have no balance or motor skills as it is?I also have a walker which I absolutely need.
-
Like -
Helpful -
Hug
1 Reaction@nboulet, I'm sorry to hear that MGUS progressed to marginal zone lymphoma. Unfortunately, both bendamustine and rituximab can sometimes cause or worsen peripheral neuropathy,
Have you talked to your oncologist about your concern about the potential neuropathy side effect? Did you have your first treatment?
-
Like -
Helpful -
Hug
1 ReactionI was on with my oncologist at Mayo yesterday to discuss CT scan results. He thinks it is almost time for me to start treatment for my Splenic Marginal Zone Lymphoma/Leukemia. He did mention Rituximab and I noticed some of you have experienced that. My spleen is now over 19cm. Besides the first treatment being rough, are there any precautions one should take? Can I still see my grandchildren and friends while undergoing treatments? I have been doing blood ozone therapy and Vitamin C for some time too. Not sure if they make a difference but they are doing no harm. My labs remain stable and my platelets run around the 100 mark. Any advice/comments?
Hi Elaine, I had Rituximab infusions and really, life didn’t change as far as visiting with friends and family or my daily routine. The treatments were very successful
I was already immuno compromised when starting the infusions. I think if you still follow the same protocol you’ve been using since Covid, with avoiding exposure to illness, wearing a mask when in close contact with anyone, friends or family, frequently washing your hands and not touching your face, you should be fine.
It’s hard not be be around friends and family. How old are your grand kids?