NH Malt Lymphoma of the Stomach

indydorsey13
indydorsey13 Member Posts: 38
Doe anyone have any knowledge / experience with Malt NH Lymphoma of the stomach ?? I haven't found ANYONE who has been diagnosed with this cancer !!! I was just diagnosed Sept. 22.
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Comments

  • jhayslip
    jhayslip Member Posts: 11
    MALT of the stomach
    We have experience with this type of lymphoma. There are national guidelines for the evaluation and treatment of this type of lymphoma and they are a good deal different than other lymphomas.

    I would consider being seen by someone who specializes in treatment of lymphoma or else ask your local oncologist if they can go over the national guidelines for initial evaluation and treatment of stomach MALT lymphoma.

    Feel free to let us know here how we can be of help.

    John
  • indydorsey13
    indydorsey13 Member Posts: 38
    jhayslip said:

    MALT of the stomach
    We have experience with this type of lymphoma. There are national guidelines for the evaluation and treatment of this type of lymphoma and they are a good deal different than other lymphomas.

    I would consider being seen by someone who specializes in treatment of lymphoma or else ask your local oncologist if they can go over the national guidelines for initial evaluation and treatment of stomach MALT lymphoma.

    Feel free to let us know here how we can be of help.

    John

    Malt Lymphoma
    I am on 2000 mg. Amoxicillin, 80 mg. Omeprazole & start a 3rd antibiotic tomorrow 500 mg per day. I had a scope / biopsy.. Will go to Hematologist next week....another scope/ biopsy &
    MRI the following week.... I have read a lot on the internet ( ACS ), and that seems to be the reasonable treatment so far.
    I appreciate any info. from anyone on this Malt stomach lymphoma
    Thanks
  • DennisR
    DennisR Member Posts: 148
    Hi Indy,
    You might find some

    Hi Indy,
    You might find some of the answers you're looking for on the Leukemia & Lymphoma website. I've found a lot of great info and support there over the years. They seem to very up to date on the latest treatments, discoveries, clinical trials, and even co-pay help etc.
    Good luck, keep on keepin' on.
    DennisR
  • Don21450
    Don21450 Member Posts: 5
    malt lymphoma stomach-
    I was also recently diagnosed with low grade B cell Malt lymphoma in my stomach. It is the size of a ping pong ball based on a PET/CT fusion scan. Maybe we can keep each other up to date. The web has been my source so far. I live in the northeast and will be going to MSK on Oct 20 to get the ball rolling.
  • Don21450
    Don21450 Member Posts: 5
    one mor thing about my MALT Lymphoma Stomach
    The pylori bacteria was not found in my stomach, stool, or biopsies. But I still had the anti-biotic treatment just in case it will slow the cancer down.
    Luckily I was very aggresive in asking and getting a PET/CT scan and the PET part showed a 1.3 inch diameter activie site outside or in my stomach wall with the CT part showing a mass at the same location. Initially my first doctors (not MSK) wanted to wait 5 months before any follow up with an endoscope of my stomach to check and see if the cancer had responded to the treatment. The EUS and biopies confirmed the MALT lymphoma within the mass but not in the near by lymphnodes.
    Should I start my own thread? I too would like to see a thread which goes from start to finish-- the ups and downs, maybe on a weekly or twice a month basis.
    Don
  • cindychgo
    cindychgo Member Posts: 1
    Don21450 said:

    one mor thing about my MALT Lymphoma Stomach
    The pylori bacteria was not found in my stomach, stool, or biopsies. But I still had the anti-biotic treatment just in case it will slow the cancer down.
    Luckily I was very aggresive in asking and getting a PET/CT scan and the PET part showed a 1.3 inch diameter activie site outside or in my stomach wall with the CT part showing a mass at the same location. Initially my first doctors (not MSK) wanted to wait 5 months before any follow up with an endoscope of my stomach to check and see if the cancer had responded to the treatment. The EUS and biopies confirmed the MALT lymphoma within the mass but not in the near by lymphnodes.
    Should I start my own thread? I too would like to see a thread which goes from start to finish-- the ups and downs, maybe on a weekly or twice a month basis.
    Don

    Malt lymphoma
    Hi Don

    Another newbie here looking for answers. I also have a diagnosis of this type of NHL.
    They could not find the source of the Malt. Had a stomach scope done which came clear. To complicate matters, my tumors(3) were found on my upper thigh at the lymph node location.
    My Onocolgist started me on Prevpac, used to clear up the Hpylori virus, which I didn't have but he thought it would be a good idea anyway. My concern is if Malt is a stomach related cancer, why don't I have it to begin with. I under went radiation which significantly reduced the tumors. It would be a good thing to get a thread going on this. I'd be interested to hear from others with the same condition.
    Thanks
    Cindy
  • indydorsey13
    indydorsey13 Member Posts: 38
    Don21450 said:

    malt lymphoma stomach-
    I was also recently diagnosed with low grade B cell Malt lymphoma in my stomach. It is the size of a ping pong ball based on a PET/CT fusion scan. Maybe we can keep each other up to date. The web has been my source so far. I live in the northeast and will be going to MSK on Oct 20 to get the ball rolling.

    Malt Lymphoma / stomach
    I was given 2500 mg. of antibiotic for 14 days for malt lymphoma...had another biopsy & ultrasound Oct. 14, and go back for another one next week...Nov. 19th...This is caused by the H-Pylori bacteria,and can often be treated with just the antibiotic if caught early...I will soon find out.....still must continue with biopsies for---ever...How are you ? What's happening with your Lymphoma now ?
  • indydorsey13
    indydorsey13 Member Posts: 38
    Don21450 said:

    one mor thing about my MALT Lymphoma Stomach
    The pylori bacteria was not found in my stomach, stool, or biopsies. But I still had the anti-biotic treatment just in case it will slow the cancer down.
    Luckily I was very aggresive in asking and getting a PET/CT scan and the PET part showed a 1.3 inch diameter activie site outside or in my stomach wall with the CT part showing a mass at the same location. Initially my first doctors (not MSK) wanted to wait 5 months before any follow up with an endoscope of my stomach to check and see if the cancer had responded to the treatment. The EUS and biopies confirmed the MALT lymphoma within the mass but not in the near by lymphnodes.
    Should I start my own thread? I too would like to see a thread which goes from start to finish-- the ups and downs, maybe on a weekly or twice a month basis.
    Don

    Malt Lymphoma / Stomach
    I would like to communicate with anyone who has Malt Lymphoma ( especially stomach ).. I was diagnosed Sept. 22... I had another biopsy / ultrasound Oct. 14 after taking 2500 mg. antibioticfor 14 days for the H Pylori bacteria... I go back for another biopsy (? ) / procedure on Nov. 19, and see the Hemotologist again in Dec.
  • mbrown5227
    mbrown5227 Member Posts: 2
    cindychgo said:

    Malt lymphoma
    Hi Don

    Another newbie here looking for answers. I also have a diagnosis of this type of NHL.
    They could not find the source of the Malt. Had a stomach scope done which came clear. To complicate matters, my tumors(3) were found on my upper thigh at the lymph node location.
    My Onocolgist started me on Prevpac, used to clear up the Hpylori virus, which I didn't have but he thought it would be a good idea anyway. My concern is if Malt is a stomach related cancer, why don't I have it to begin with. I under went radiation which significantly reduced the tumors. It would be a good thing to get a thread going on this. I'd be interested to hear from others with the same condition.
    Thanks
    Cindy

    Malt Lymphoma
    Is not only a stomach cancer. My son had it in his Parotid Glands,(located on bilateraly beneath a person ears).
    Those of you diagnosed with the stomach variety, what were your symptoms?
  • indydorsey13
    indydorsey13 Member Posts: 38

    Malt Lymphoma
    Is not only a stomach cancer. My son had it in his Parotid Glands,(located on bilateraly beneath a person ears).
    Those of you diagnosed with the stomach variety, what were your symptoms?

    malt lymphoma ( stomach )
    Not to many symptoms actually: Casually mentioned to my Dr. that I had noticed that my stools were very dark...he sent me for biopsy, scope, and colonoscopy... I also did the hemmocult test.... Biopsy showed Malt Lymphoma caused by the H-Pylori bacteria that one can get in many different ways such as water we drink, food, etc. etc. Many people have the H-pylori bacteria in their stomach AND never even know it...Rarely does it turn into / cause Malt Lymphoma Cancer !!!! Dark stool from stomach bleeding & hemmocult test was positive for blood in stool... I did have some burning in upper part of my stomach that I thought was from the aspirin that I was taking everyday !!
    I had biopsy in Sept., another biopsy & ultrasound on Oct. 14, and I go next Thur.( Nov.19 ) for another biopsy & scope.... I took the 2500 mg. of antibiotic for 14 days, 2nd biopsy after taking antibiotic shows no H-Pylori bacteria, and have some residual tumor... The plan is tha when caught very early the antibiotic often reverses it all back to normal... so to speak.
    For more info. look at the Lymphoma and Lukemia Society... I will see the Hemotologist again next month...
  • Don21450
    Don21450 Member Posts: 5

    Malt Lymphoma / Stomach
    I would like to communicate with anyone who has Malt Lymphoma ( especially stomach ).. I was diagnosed Sept. 22... I had another biopsy / ultrasound Oct. 14 after taking 2500 mg. antibioticfor 14 days for the H Pylori bacteria... I go back for another biopsy (? ) / procedure on Nov. 19, and see the Hemotologist again in Dec.

    malt lymphoma stomach, Don's story
    I read the comments and I'll add more from my story. I live in Delaware and go up to Sloan Kettering in NYC every week day.
    Malt lymphoma of the stomach doesn't have any symptom unique to it. I had a burning sensation in my throat and tried Nexium, thank goodness it didn't work. A scope of my stomach and biopsy showed the cancer. PLEASE GET A PET SCAN to show the size of the tumor. If it doesn't show up above background that will be a good sign. My doctors in Delaware were shocked to see the pingpong ball size tumor in my stomach after they told me to come back in 5 months after the antibiotic treatment even though no bacteria. Had I not insisted 6 months to a year may have passed before the radiation treatment. Time matters because the cells can transform to an aggresive type. I insisted on the PET scan, they have an SUV number which indicates the agresiveness of the tumor and background is in the 2-4 range. My tumor was 9 SUV which is high, 12 and above indicates aggresive cancer cells.
    FYI, 15 years ago, that's in the 1980s, removing the stomach and radiation were the treatment and now its just the radiation if only tpe B cells are present. This was found out because a patient refused the surgery so the doctor tried just the radiation and it worked.
    I've now been treated with radiation 6 days with no problems. The treatment takes about 10 minutes. The radiation is no longer delivered with a single point source. Accordingly to the therapist at Sloan Kettering said the new method of a shaped beam was introduced just 6 years ago.
    Don
  • indydorsey13
    indydorsey13 Member Posts: 38
    Don21450 said:

    malt lymphoma stomach, Don's story
    I read the comments and I'll add more from my story. I live in Delaware and go up to Sloan Kettering in NYC every week day.
    Malt lymphoma of the stomach doesn't have any symptom unique to it. I had a burning sensation in my throat and tried Nexium, thank goodness it didn't work. A scope of my stomach and biopsy showed the cancer. PLEASE GET A PET SCAN to show the size of the tumor. If it doesn't show up above background that will be a good sign. My doctors in Delaware were shocked to see the pingpong ball size tumor in my stomach after they told me to come back in 5 months after the antibiotic treatment even though no bacteria. Had I not insisted 6 months to a year may have passed before the radiation treatment. Time matters because the cells can transform to an aggresive type. I insisted on the PET scan, they have an SUV number which indicates the agresiveness of the tumor and background is in the 2-4 range. My tumor was 9 SUV which is high, 12 and above indicates aggresive cancer cells.
    FYI, 15 years ago, that's in the 1980s, removing the stomach and radiation were the treatment and now its just the radiation if only tpe B cells are present. This was found out because a patient refused the surgery so the doctor tried just the radiation and it worked.
    I've now been treated with radiation 6 days with no problems. The treatment takes about 10 minutes. The radiation is no longer delivered with a single point source. Accordingly to the therapist at Sloan Kettering said the new method of a shaped beam was introduced just 6 years ago.
    Don

    Malt Lymphoma ( stomach ) >> Don
    I found your expearience with Malt Lymphoma very interesting, and could just be an " eye opener " for me.... My biopsy done on Oct. 14 came back with: No H-Pylori bacteria, and " residual " tumor !!! I am getting another scope / biopsy Nov. 19th. I had some burning in my stomach (upper part) during the time of diagnosis, and bleeding, but I no longer have any of those symptoms... The " residual" tumor concerns me more after reading your story... I have felt like this " cancer " is not treated as seriously as other cancers....It's only common sense that there is no such thing as any cancer that is not serious !!!!! The Hemotologist did not seem to be very concerned...( about anything ) I go back to see him again in Dec.... I did not have any other test other than ultra sound, biopsy, and scope...
    Your story has me thinking... It seems that when it comes to CANCER, WE had better be the one to be thinking !!!!! It's our life !! My husband was diagnosed with Stage III-B inoperable Lung Cancer SIX ( 6 ) days after my Lymphoma diagnosis.(even though he has had recent chest x-rays that were clear...I just, for the most part, put mine on the back burner so to speak as his is VERY life threatening...He will start chemo AND rad. next week... It seems to be quite a nightmare for US. I would be interested in hearing more about how things are going with you and this MALT LYMPHOMA ( or from anyone else )...The graphic print out that I was given also said that I have " mild chronic pancreatitis." My daughter questioned that, and Dr. said it was scar tissue...He ask if I drank which I DO NOT !!!! The result of the test also shows: Gastric mucosal abnormality, mild in body and fundus >>> photo: Gastric Body: Abnormal Mucosa....
  • Don21450
    Don21450 Member Posts: 5
    cindychgo said:

    Malt lymphoma
    Hi Don

    Another newbie here looking for answers. I also have a diagnosis of this type of NHL.
    They could not find the source of the Malt. Had a stomach scope done which came clear. To complicate matters, my tumors(3) were found on my upper thigh at the lymph node location.
    My Onocolgist started me on Prevpac, used to clear up the Hpylori virus, which I didn't have but he thought it would be a good idea anyway. My concern is if Malt is a stomach related cancer, why don't I have it to begin with. I under went radiation which significantly reduced the tumors. It would be a good thing to get a thread going on this. I'd be interested to hear from others with the same condition.
    Thanks
    Cindy

    malt lymphoma stomach, (gastric),
    Cindy,
    Did you ever have lymphoma (B cell)in your stomach? If no, then you don't have gastric malt lymphoma. The reason doctors continue to try and kill of the bacteria which isn't there is because they are the uniformed. If there is no bacteria and say what my first doctor said when I didn't have any H pylori bacteria, "Take it anyway, it can't hurt and come and see me in 5 months." Your oncolgist must not be a lymphoma specialist.
    If all three of the tumors are in your thigh then you most likely have nodual marginal zone lymphoma which is also slow growing. Search the ACS page for nodual lymphoma and/or marginal zone lymphoma. The good news is your lymophoma may be slow growing (but it could change at any time).
    Please get a 2nd opinion from a cancer hostipal, I drive 3.5 hours each way per day for my treatment. Sometimes surgery is used to remove the node. The cancer is in the node now but can break out into the rest of the nodal system. I was at a conference last month and a dinner companion had marginal zone lymphoma in a node on her neck. The symptom was a swollen node without any fever or sign of an infection. One or two weeks before she was to have surgery the node went back to a normal size. The bad news is the cells had left the node and spread to the rest of the lymphatic system. In her opinion, if the node had been removed using surgery she most likely have been "cured".
  • indydorsey13
    indydorsey13 Member Posts: 38
    Don21450 said:

    malt lymphoma stomach, Don's story
    I read the comments and I'll add more from my story. I live in Delaware and go up to Sloan Kettering in NYC every week day.
    Malt lymphoma of the stomach doesn't have any symptom unique to it. I had a burning sensation in my throat and tried Nexium, thank goodness it didn't work. A scope of my stomach and biopsy showed the cancer. PLEASE GET A PET SCAN to show the size of the tumor. If it doesn't show up above background that will be a good sign. My doctors in Delaware were shocked to see the pingpong ball size tumor in my stomach after they told me to come back in 5 months after the antibiotic treatment even though no bacteria. Had I not insisted 6 months to a year may have passed before the radiation treatment. Time matters because the cells can transform to an aggresive type. I insisted on the PET scan, they have an SUV number which indicates the agresiveness of the tumor and background is in the 2-4 range. My tumor was 9 SUV which is high, 12 and above indicates aggresive cancer cells.
    FYI, 15 years ago, that's in the 1980s, removing the stomach and radiation were the treatment and now its just the radiation if only tpe B cells are present. This was found out because a patient refused the surgery so the doctor tried just the radiation and it worked.
    I've now been treated with radiation 6 days with no problems. The treatment takes about 10 minutes. The radiation is no longer delivered with a single point source. Accordingly to the therapist at Sloan Kettering said the new method of a shaped beam was introduced just 6 years ago.
    Don

    Malt Lymphoma ( stomach )
    Was told by Dr. after taking the 2500 mg. of antibiotic for 14 days that H-Pylori was gone based on last biopsy, and " residual " tumor left...indicating that the Lymphoma would be history... I have next biopsy Thursday, Nov. 19... I am once again having the burning in upper part of stomach..( did not have before the Lyphoma problem ) now little concerned. Any comments ?
  • Don21450
    Don21450 Member Posts: 5

    Malt Lymphoma ( stomach )
    Was told by Dr. after taking the 2500 mg. of antibiotic for 14 days that H-Pylori was gone based on last biopsy, and " residual " tumor left...indicating that the Lymphoma would be history... I have next biopsy Thursday, Nov. 19... I am once again having the burning in upper part of stomach..( did not have before the Lyphoma problem ) now little concerned. Any comments ?

    Malt Lymphoma (stomach/gastric)
    Let us know the result of the biopsy and the look-see they'll do. Maybe then you'll know why you have the burning sensation. Did you do the PrevPac antibiotic?
    I'm now half way through with my radiation and still no side effects except a slightly upset stomach.
    Don
  • fibroleo
    fibroleo Member Posts: 1
    Don21450 said:

    malt lymphoma stomach, Don's story
    I read the comments and I'll add more from my story. I live in Delaware and go up to Sloan Kettering in NYC every week day.
    Malt lymphoma of the stomach doesn't have any symptom unique to it. I had a burning sensation in my throat and tried Nexium, thank goodness it didn't work. A scope of my stomach and biopsy showed the cancer. PLEASE GET A PET SCAN to show the size of the tumor. If it doesn't show up above background that will be a good sign. My doctors in Delaware were shocked to see the pingpong ball size tumor in my stomach after they told me to come back in 5 months after the antibiotic treatment even though no bacteria. Had I not insisted 6 months to a year may have passed before the radiation treatment. Time matters because the cells can transform to an aggresive type. I insisted on the PET scan, they have an SUV number which indicates the agresiveness of the tumor and background is in the 2-4 range. My tumor was 9 SUV which is high, 12 and above indicates aggresive cancer cells.
    FYI, 15 years ago, that's in the 1980s, removing the stomach and radiation were the treatment and now its just the radiation if only tpe B cells are present. This was found out because a patient refused the surgery so the doctor tried just the radiation and it worked.
    I've now been treated with radiation 6 days with no problems. The treatment takes about 10 minutes. The radiation is no longer delivered with a single point source. Accordingly to the therapist at Sloan Kettering said the new method of a shaped beam was introduced just 6 years ago.
    Don

    MALT
    I am new to this site and find all of your info very helpful.I was initially diagnosed w/a gastric ulcer(from H Pylori) and did the prevpac protocol, then biopsy confirmed MALT. I repeated the Prevpac treatment in hopes of alleviating the MALT (which it sometimes does) but it didn't clear. So now, this week I'll be referred to an oncologist (specializing in Lymphoma).

    What I found interesting about your situation is the "tumor". My GI said nothing about a "tumor"; only random cells. My GI said that I would probably only need 1 session of chemo. Was it your GI or Oncologist who reccommended the PET SCAN?

    I also see that you are @ MSK. Obviously,you feel that they are the best? Was your Oncologist there as well?

    Thanks for your help.
  • indydorsey13
    indydorsey13 Member Posts: 38
    Don21450 said:

    malt lymphoma stomach-
    I was also recently diagnosed with low grade B cell Malt lymphoma in my stomach. It is the size of a ping pong ball based on a PET/CT fusion scan. Maybe we can keep each other up to date. The web has been my source so far. I live in the northeast and will be going to MSK on Oct 20 to get the ball rolling.

    Malt Lymphoma
    Don, How are you doing with your Lymphoma ? I finished the antibiotic treatment which got rid of the H-pylori bacteria, but I still have the lymphoma... I will go to GI appt. soon, another biopsy, and back to oncology hemotologist...No treatment planned yet. The hemotologist said the Lymphoma was caught early, and the treatment is so harsh that he prefers to wait for another biopsy & see if there are any changes... I have been having some burning in my upper stomach and suspicious of stomach bleeding again... Cancer is EVIL !
    [email protected]tt.net
  • indydorsey13
    indydorsey13 Member Posts: 38
    fibroleo said:

    MALT
    I am new to this site and find all of your info very helpful.I was initially diagnosed w/a gastric ulcer(from H Pylori) and did the prevpac protocol, then biopsy confirmed MALT. I repeated the Prevpac treatment in hopes of alleviating the MALT (which it sometimes does) but it didn't clear. So now, this week I'll be referred to an oncologist (specializing in Lymphoma).

    What I found interesting about your situation is the "tumor". My GI said nothing about a "tumor"; only random cells. My GI said that I would probably only need 1 session of chemo. Was it your GI or Oncologist who reccommended the PET SCAN?

    I also see that you are @ MSK. Obviously,you feel that they are the best? Was your Oncologist there as well?

    Thanks for your help.

    fibroleo
    I still have the Malt Lymphoma / stomach after the H-pylori was treated with antibiotic...H-pylor gone...Lymphoma remains...not sure where I go next....I do know that I go for another biopsy and back to see the oncology hemolotogist for 3rd time.. Would like to know how you are doing...
    indydorsey
  • indydorsey13
    indydorsey13 Member Posts: 38
    fibroleo said:

    MALT
    I am new to this site and find all of your info very helpful.I was initially diagnosed w/a gastric ulcer(from H Pylori) and did the prevpac protocol, then biopsy confirmed MALT. I repeated the Prevpac treatment in hopes of alleviating the MALT (which it sometimes does) but it didn't clear. So now, this week I'll be referred to an oncologist (specializing in Lymphoma).

    What I found interesting about your situation is the "tumor". My GI said nothing about a "tumor"; only random cells. My GI said that I would probably only need 1 session of chemo. Was it your GI or Oncologist who reccommended the PET SCAN?

    I also see that you are @ MSK. Obviously,you feel that they are the best? Was your Oncologist there as well?

    Thanks for your help.

    fibroleo
    I still have the Malt Lymphoma / stomach after the H-pylori was treated with antibiotic...H-pylor gone...Lymphoma remains...not sure where I go next....I do know that I go for another biopsy and back to see the oncology hemolotogist for 3rd time.. Would like to know how you are doing...
    indydorsey
  • indydorsey13
    indydorsey13 Member Posts: 38

    Malt Lymphoma
    Is not only a stomach cancer. My son had it in his Parotid Glands,(located on bilateraly beneath a person ears).
    Those of you diagnosed with the stomach variety, what were your symptoms?

    Stomach Malt Lymphoma
    Sometimes no symptoms. I had some bleeding ( blood in stool ), and burning in upper part of my stomach...biopsy...Lymphoma & H-Pylori bacteria