barryboomer's Journey with Nodal Marginal Zone B-Cell Lymphoma

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Marginal Zone B-Cell Lymphomas > Nodal Marginal Zone B-Cell Lymphoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: about 8 years ago, Male, Age: 76, Stage IV

  1. 1
    almost 8 years ago
    barryboomer's Avatar

    Decided not to go to an Oncologist and won't take Chemo or Radiation.

    Decision Point

    I had a rare NHL called Marginal Zone, Nodal Indolent form....I had nodes light up with a Pet Scan in my Spleen, Abdomen, Groin, under both arms and of course my neck. Decided to watch and wait and not go to an Oncologist....Got a lot of push back from Family, Friends znd other Docs. Nodal (Monocytoid B-cell Lymphoma) Return to top Michiel van den Brand and J. Han J.M. van Krieken write: "There is currently no consensus on how to treat NMZL patients. Usually, guidelines for follicular lymphoma or chronic lymphocytic leukemia/small lymphocytic lymphoma are adopted. Different studies have reported different (combinations of) treatments, including watchful waiting, surgery, radiotherapy, different chemotherapeutic regimens, rituximab, and autologous stem cell transplantation. However, no optimal treatment strategy can be deduced from these studies. Complete response is achieved in 55–74% of patients." ".... Nodal marginal zone lymphoma remains an enigmatic entity with accompanying difficulties in diagnosis and a lack of knowledge of prognosis and treatment. Because of its rarity, it is hard to obtain large study groups. Also, because NMZL is frequently a diagnosis of exclusion, the series that have been studied might contain a somewhat heterogeneous group of low-grade B-cell lymphomas. Nevertheless, progress is being made; recent studies have identified positive markers for MZL (i.e. MNDA and IRTA1), and gene expression studies have identified a specific gene expression profile that separates NMZL from other lymphoma types. Nodal (Monocytoid B-cell Lymphoma) Return to top Michiel van den Brand and J. Han J.M. van Krieken write: "There is currently no consensus on how to treat NMZL patients. Usually, guidelines for follicular lymphoma or chronic lymphocytic leukemia/small lymphocytic lymphoma are adopted. Different studies have reported different (combinations of) treatments, including watchful waiting, surgery, radiotherapy, different chemotherapeutic regimens, rituximab, and autologous stem cell transplantation. However, no optimal treatment strategy can be deduced from these studies. Complete response is achieved in 55–74% of patients." ".... Nodal marginal zone lymphoma remains an enigmatic entity with accompanying difficulties in diagnosis and a lack of knowledge of prognosis and treatment. Because of its rarity, it is hard to obtain large study groups. Also, because NMZL is frequently a diagnosis of exclusion, the series that have been studied might contain a somewhat heterogeneous group of low-grade B-cell lymphomas. Nevertheless, progress is being made; recent studies have identified positive markers for MZL (i.e. MNDA and IRTA1), and gene expression studies have identified a specific gene expression profile that separates NMZL from other lymphoma types. I had some small moveable lumps in my neck and got worried so I decided to go to a General Surgeon and have them biopsied. Two weeks later the results came back as Marginal Zone Nodal Non Hodgkin's Lymphoma. I almost passed out after hearing those words. I the Surgeon told me I had two options. One was to go to an Oncologist and the other was NOT TO. I told him I didn't want to take mainstream treatments and he asked me if I was ready to take on the challenge. I asked him what that was and he said Raw Foods and Carrot Juice. He said He would order a Pet Scan and hold my hand through the process if I wanted. For the last 7 months I've been on a Total Raw Food Die with lots of raw vegetable juice and 5 anti cancer Supplements. It's now 7 months and I just switched from the Veggie Juice to Powdered Green Drink from Garden of Life. Also starting today making my own aloe smoothie a few times a day. I have NO symptoms other than small nodes that light up in 5 places on a PET Scan.....I can feel the groin and neck and they are less than 2 cm. BUT in the 5th month a node in my left groin area which wasn't palpable before started getting large...and as of last week it was like a small egg. Yesterday HE excised it in his office and I'm glad to get rid of it. He said even though in Lymphoma the nodes aren't usually excised he thought that this would lighten my tumor load and also we can find out what is in there. I'm worried that my Slow Growing Cancer has now become more aggressive but what the heck can I do. I'm switching back and forth so hopefully you won't get confused. After 3 months my BP which has been around 144/82 is NOW 110/70. I had an Anti Oxidant test 3 months ago and it was 16,000 (10,000 the worse and over 50,000 the best) and it is NOW 47,000. AND my weight has dropped from a too heavy for me 170 to 154 and holding steady. SO.....I have no idea if this is helping the cancer BUT My body is responding to the food etc. that I'm sending down and also not getting the crappy food I used to send down. I'm taking Green Tea & Reishi Mushroom Extract, Curcumin, Ginger, Soy/genistein complex, Resveratrol, IP6, Glutamine Powder and many more. I feel Great and am hoping to make a positive effect on the cancer. Only God Knows as HE is now my Nutritionist. My cancer is slow growing and already spread to many nodes so Chemo and Radiation are not really that good for slow growing. BUT maybe it will give my Amazing Immune system to right the ship. NOW....The pain from the sugery isn't too bad....it's now the next morning. This Doc who is NOT a cancer Doc but does lots of Cancer Surgery has lots of patients doing things similar to what I'm trying. Many never did mainstream and a lot started this protocol after years of chemo and radiation with diminishing results. Nodal (Monocytoid B-cell Lymphoma) See below Michiel van den Brand and J. Han J.M. van Krieken write: "There is currently no consensus on how to treat NMZL patients. Usually, guidelines for follicular lymphoma or chronic lymphocytic leukemia/small lymphocytic lymphoma are adopted. Different studies have reported different (combinations of) treatments, including watchful waiting, surgery, radiotherapy, different chemotherapeutic regimens, rituximab, and autologous stem cell transplantation. However, no optimal treatment strategy can be deduced from these studies. Complete response is achieved in 55–74% of patients." ".... Nodal marginal zone lymphoma remains an enigmatic entity with accompanying difficulties in diagnosis and a lack of knowledge of prognosis and treatment. Because of its rarity, it is hard to obtain large study groups. Also, because NMZL is frequently a diagnosis of exclusion, the series that have been studied might contain a somewhat heterogeneous group of low-grade B-cell lymphomas. Nevertheless, progress is being made; recent studies have identified positive markers for MZL (i.e. MNDA and IRTA1), and gene expression studies have identified a specific gene expression profile that separates NMZL from other lymphoma types.

    4 Comments
  2. 2
    almost 7 years ago
    barryboomer's Avatar

    Anniversary

    Celebration

    Two and a half years in and about 2 months ago got terrible Sciatica pain in both legs and had the Doc put me in the Hospital for 4 days to find out what was going on. It was found that the cancer was out of the lymph system and was impinging on Sciatic nerve root...SO I just finished 16 Rad treatments and now NO PAIN....thank the Docs and GOD.

    2 Comments
  3. 3
    almost 8 years ago
    barryboomer's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    I have opted to go the Raw Foods, Juicing and Anti Cancer Supplements Route. Here is my Common Sense Feelings about the subject. Chemo and Radiation can kill most of the cancer cells but Usually there are some really strong ones at the microscopic level that survive. The treatments pretty much destroy our immune system at the same time giving us lots of other nasty and scary problems. SO....after the treatments are over we NEED our immune system and in particular our Killer T Cells to be on steroids to knock out the rogue cells that have survived. BUT it's not there. SO what usually happens at the next scan more tumors show up. By then if we used lots of what I do the immune system should be getting really good again but then they want to give more treatments...ugh....how is that all supposed to work. I like to give the leaking row boat analogy. If there is a hole and we are bailing the water...ok...for awhile but we need to fix the hole or eventually we will sink. Check out the site chris beat cancer and his facebook AND this article below.....Good Luck... Another great site run by an MD http://nutritionfacts.org/topics/cancer/ A good book is THE CHINA STUDY http://www.greenmedinfo.com/blog/preventing-and-reversing-cancer-naturally-anticancer-diet-shopping-list?utm_source=www.GreenMedInfo.com&utm_campaign=56de99d27b-Greenmedinfo&utm_medium=email&utm_term=0_193c8492fb-56de99d27b-87148481 The site Chris Beat Cancer AND his amazing Face Book page is a MUST. Check out the book Radical Remission by Doctor Kelly Turner PHD... I don't have any symptoms yet after almost 8 months I take Reishi and Green Tea Extract, ginger, soy/genistein complex, curcumin, resveratrol, dandelion extract, IP6, Glutamine Powder and others. I added Broccoli and Kale Sprouts. I eat lots of strawberries, pineapple, blueberries, melons, bananas and other fruits and pumpkin seeds, almonds, raisins and sunflower seeds first meal everyday. For dinner I eat Huge salad with broccoli sprouts. Recently I added whole wheat crackers and special Veggie/Bean Soups from The Life Extension Foundation that are delicious. They mail them to my house. many other vegetables and nuts and apples and cranberries and walnuts etc. I munch on the nuts all day and LOVE them all. My taste buds changed and a little sunflower seed actually tastes sweet. I take a powdered green drink twice a day and take apple cider vinegar every morning and some whey protein powder and syllium seeds. I deep breath all day and walk twice a day. I also PRAY a LOT.

    12 Comments
  4. 4
    over 6 years ago
    barryboomer's Avatar

    Cancer is shrinking

    Celebration

    It is now 19 months since D-Day and I'm feeling great...Still Not chemo or radiation and NO Oncologist. I am still on my 99% Vegan Diet but added salmon and a sweet potato on Saturday Night. Also added Organic Bean, Veggie and Tomato Soups for dinner with a lot of extra vegetables. I know canned is not good but I needed something else to eat and to keep on the weight. I also added canned peas and corn kernel's.....I take them out of the can and wash them off. I love my whole grain crackers and manna bread with raisins and nuts. I eat two bananas a day because I am trying to eat enough calories to maintain between 140 and 150...and I'm 69 and thin legs and five foot ten. I had three large lymph nodes in my left groin area that went down at the 13th month but still have some in right side of my neck. I haven't had a Pet Scan from the beginning and don't know if it spread or how they are doing in the spleen, abdomen and under my arms or inside the groin. I feel a slight softening and flattening of the ones in my neck and HOPE they go the same way the groin ones have gone. I Pray a Lot and try and keep the stress levels down although that is hard. I still see the original Biopsy Surgeon and he took me on as a GP and Cancer helper.....He is my cheerleader and believes in what I'm doing. I have NO other symptoms yet but am always nervous with each new lump or bump or sore etc. It never goes away. BTW...I write songs and post them at barrydbutler channel on youtube IF you would like to take a listen. I'll post again soon...B

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  5. 5
    over 5 years ago
    barryboomer's Avatar

    Oh No

    This person has yet to add any details about this experience.

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  6. 6
    over 5 years ago
    barryboomer's Avatar

    Side Effects

    This person has yet to add any details about this experience.

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  7. 7
    over 5 years ago
    barryboomer's Avatar

    Radiation

    This person has yet to add any details about this experience.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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