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NH Malt Lymphoma of the Stomach

indydorsey13
Posts: 38
Joined: Sep 2009

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.

jhayslip
Posts: 12
Joined: Sep 2009

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
Posts: 38
Joined: Sep 2009

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
Posts: 148
Joined: Sep 2009

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
Posts: 5
Joined: Sep 2009

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.

indydorsey13
Posts: 38
Joined: Sep 2009

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
Posts: 38
Joined: Sep 2009

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 !
indydorsey13@att.net

Don21450
Posts: 5
Joined: Sep 2009

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
Posts: 1
Joined: Oct 2009

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

mbrown5227
Posts: 2
Joined: Oct 2009

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
Posts: 38
Joined: Sep 2009

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...

indydorsey13
Posts: 38
Joined: Sep 2009

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

Don21450
Posts: 5
Joined: Sep 2009

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
Posts: 38
Joined: Sep 2009

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.

Don21450
Posts: 5
Joined: Sep 2009

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
Posts: 38
Joined: Sep 2009

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....

indydorsey13
Posts: 38
Joined: Sep 2009

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
Posts: 5
Joined: Sep 2009

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
Posts: 1
Joined: Jan 2010

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
Posts: 38
Joined: Sep 2009

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

jeno48
Posts: 2
Joined: Feb 2010

Hello Fibroleo,

I was diagnosed with MALT Lymphoma 3 years ago. My symptoms were stomach burning, nausea, bloating, and a mind numbing fatigue. It was really the fatigue that tipped me off but everyone is different. After several tests came in negative I got a second opinion at Dartmouth Hospital in Lebanon NH. They found the lymphoma. I understand that there are 2 kinds of stomach related MALT, one is caused by H-pylori and the treatment is antibiotics. The second is not. I was treated with a drug called Rituxin. The lymphoma was diagnosed with a scope...blood tests...cat & pet scans. I had a 6 week treatment plan followed by endoscopy exams every 3 months. The tumor was completely gone by 9 months and I have been cancer free for 3 years. Please get a second opinion if you are not happy with your treatment. If I hadn't insisted that something was wrong I never would have received treatment. Good Luck!

indydorsey13
Posts: 38
Joined: Sep 2009

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

PBJ44
Posts: 1
Joined: Apr 2010

I was diagnosed in 2005 with Malt Lymphoma in my stomach but had no signs of H Pylori. I received one month of radiation treatments. So far I have not had any signs of the Malt Lymphoma since.

miss maggie
Posts: 929
Joined: Mar 2010

I am thrilled to read the good news from your post.

Did you have non-hodgkins malt lymphoma? When you were dx in 2005, how was it discovered?

I was dx in sept 2009. I had terrible pain, went to ER, bowel perforated and ulcers. I had surgery. I was in the hospital for 3 weeks, and also received heavy doses of antibiotics. A biopsy confirmed h-pylori, stage 1, b cell, low grade NHL. I received 4 weeks rituxan in dec 2009. I will be going for a pet scan in may or june 2010. Curious, why you were given radiation, and no rituxan?

Stay well, and God Bless

lvraider
Posts: 5
Joined: May 2010

Tried 8-rituxan & 6-velcade (bortezomib, fast push 30-seconds, with vein scarring asked after two doses, asked for 3-min slow injections) did not work at all. Then in Oct 04 23-days radiation at UCLA. Result: remission. I did have rituxan every 6-month maintenance for 3-yrs after 4-doses each time ending 1-09. Did have side effects from those treatments. Shortness of breath & short-term memory problems. Mine may have been also caused from lots of 100mg vioxx.

Anyone with memory problems?

jeno48
Posts: 2
Joined: Feb 2010

I was diagnosed 3 years ago with MALT lymphoma. If you still have questions please feel free to email me.

indydorsey13
Posts: 38
Joined: Sep 2009

I don't have an email address for you...Is your Malt Lymphoma Stomach ? Anyone with experience with Stomach Malt Lymphoma can email me at: indydorsey13@att.net

indydorsey13
Posts: 38
Joined: Sep 2009

jeno,

How are you doing with your lymphoma ???? I was diagnosed Sept. 22, 2009....I will have my 4th biopsy & ultrasound this Wed.... My biggest complaint is that I am TIRED to the place that I feel SICK... My husband had his lung REMOVED 2 wks ago from LUNG CANCER diagnosed same week as this my stomach lymphoma problem !!! He had 2 mo. of chemo. & rad. before the pneumonectomy...( all of this could add to TIRED ). I had the 2500 mg antibiotic for 14 days in Oct.....got rid of he H-pylori, but still have the cancer ( lymphoma ) cells so the biopsy shows !! Back to 3rd trip to hemotologist Mar. 9.... Do you think I have a chance of escaping treatment ? Nothing like a good miracle...just goes away !!! indydorsey13@att.net

indydorsey13
Posts: 38
Joined: Sep 2009

jeno,

How are you doing with your lymphoma ???? I was diagnosed Sept. 22, 2009....I will have my 4th biopsy & ultrasound this Wed.... My biggest complaint is that I am TIRED to the place that I feel SICK... My husband had his lung REMOVED 2 wks ago from LUNG CANCER diagnosed same week as this my stomach lymphoma problem !!! He had 2 mo. of chemo. & rad. before the pneumonectomy...( all of this could add to TIRED ). I had the 2500 mg antibiotic for 14 days in Oct.....got rid of he H-pylori, but still have the cancer ( lymphoma ) cells so the biopsy shows !! Back to 3rd trip to hemotologist Mar. 9.... Do you think I have a chance of escaping treatment ? Nothing like a good miracle...just goes away !!! indydorsey13@att.net

indydorsey13
Posts: 38
Joined: Sep 2009

jeno,

How are you doing with your lymphoma ???? I was diagnosed Sept. 22, 2009....I will have my 4th biopsy & ultrasound this Wed.... My biggest complaint is that I am TIRED to the place that I feel SICK... My husband had his lung REMOVED 2 wks ago from LUNG CANCER diagnosed same week as this my stomach lymphoma problem !!! He had 2 mo. of chemo. & rad. before the pneumonectomy...( all of this could add to TIRED ). I had the 2500 mg antibiotic for 14 days in Oct.....got rid of he H-pylori, but still have the cancer ( lymphoma ) cells so the biopsy shows !! Back to 3rd trip to hemotologist Mar. 9.... Do you think I have a chance of escaping treatment ? Nothing like a good miracle...just goes away !!! indydorsey13@att.net

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

I finally found threads regarding malt NHL. I found your threads on the discussion board very enlightning. I will also paste a copy of this email on the discussion board in the event it might be helpful to others.

The middle of sept 2009 I had the most terrible pain in my stomach, which I have no memory of to this day. I was rushed to the hospital ER. I had a ct scan which showed my bowel had perforated. I was immediately operated on, and was in ICU for 2 weeks, then 1 more week of hospitalization. Total 3 weeks in hospital. I thought I would never leave the hospital. The DX was stage 1, low grade, B cell NHL. They also found H-pylori bacteria and ulcers. Since I was in ICU I would imagine I was on very strong anti-biotics. I went to my oncologist, had a pet scan, pet scan showed node in neck, but after a neck biopsy negative. Then a bone marrow biopsy, which also came back negative.

In dec 2009, I had treatment of rituxan once weekly for 4 weeks. I had no side effects from the rituxan. I saw my oncologist the end of jan 2010, and have another appointment with the oncologist the end of may 2010. I will then be scheduled for another pet scan. I am so scared that the H-Pylort might return. How do they test for that? Someone told me they can test for this bacteria by a blood test and my siliva??? Perhaps it is better to have a colonoscopy????

Anything you can add, will be greatly appreciated. Let me know how you are doing. Your last thread, I believe was in feb 2010.

God bless you and others. By the way, our DX is very positive with everything I have read. I would be more than glad to forward the text on our DX to anyone that is interested.

Take care Maggie tcfcmaggie@aol.com

miss maggie
Posts: 929
Joined: Mar 2010

I am pasting your reply to this discussion board in the event it can help others.

Dear Dorsey,

Thank you for your speedy reply to my email.

I am so saddened to hear both you and your husband have to go through such trials at the same time. I understand how heartbreaking it can be. I lost my husband may 25, 2004 to pancreatic cancer. He was dx in may 2002. But, at least I was well at the time. How difficult it must be for you, not feeling so well yourself. I suppose at least they are giving your husband treatment, not totally hopeless. That is good news. Most certainly, it is still a struggle.

Thanks for info of detecting H-Pylori. Yes, it is very rare our condition, but curable. I am glad to hear that the Pylori bacteria is gone. It sounds like you nhl is confined to the stomach lining only, and is still stage 1.. That is good news. Hopefully, and yes the radiation will zap the 20% left.

I have no idea the dosage of anti-biotics I was given at the hospital. All I know is this, perforation of the bowel is very serious. The doctors pulled me through, therefore I trust that I was given strong anti-biotics.
I am great at this time. I have a few problems with me knees, but I will learn to live with it.

God Bless both you and your husband. Prayers to both of you.

maggie

miss maggie
Posts: 929
Joined: Mar 2010

Hello all,

I just wanted to pass on info that I found on the sloan kettering website. Type in "cranberry juice" where it says "search". Cranberry juice is not only good for urinary tract, but is also helpful at keeping the H-Pylori bacteria away. And yes, please be tested often for the bacteria.

God Bless all. maggie

annie1968
Posts: 1
Joined: Mar 2012

Hello,
I was diagnosed with Gastric MALT Lymphoma on April 19, 2011. So far my treatments have not been entirely successful. I had the antiobiotics, then ritauxan, then radiation (20 sessions) and then another dose of antibiotics. Apparently, my cancer is puzzling. They haven't seen it like this before. I should be cured but am not. I have searched everywhere for a GML safe nutrtiional diet but come up empty. I have sought a second opinion and was told no. You can't get a second opinion without having the consent from the first doctor.

I am looking for support more because I have been told that if my next scope is still showing no signs of improvement I will be looking at chemo and will lose my hair. I am devastated. I found a treatement that helps chemo patients keep their hair but my oncologist said this treatment would not be a good idea. I have been searching and some say it is safe and some do not (peguin ice caps therapy). Has anyone out there been through chemo? Did you lose your hair? Has anyone tried the Penguin Ice Caps? Does anyone have a good diet regimen? Help please!!

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hello, I've been through chemo twice, once for head and neck cancer and once for my NHL. Losing your hair does suck, the second time around I shaved it off myself. I know being a guy its easier losing your hair, but you have to realize that hair does not make the person you are inside, male or female. Your number one goal is to beat cancer! Stay as positive as possible. Believe it or not my oncologist gave me a script for a wig, I never used it... your hair will grow back...... Vinny

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Annie,

First of all, I am sorry that you have to be on this sight, but you have come to the right place... great people and tons of info here.

Who told you that the first doc has to give consent for a second opinion?? When I was diagnosed,May 2010, I not only got a second, but a third opinion! I still have two different oncologists involved! I would say check with your healthcare provider first to check for coverage, but it is important! Especially with your doctors being puzzled!

I have Nodal Marginal Zone Lymphoma stage iv and Malt lymphoma in my stomach. The malt was found while doing stomach biopsies and there are no tumors at this time. H Pylori is negative. Right now they are waiting for a bacterial overgrowth in my sm intestine to clear and then they want to treat with chemo because the Marginal Zone NHL is on the move. They are not concerning with the Malt right now but keeping a watch on it.

I don't know of any specific diet- others may know. I just stay on a healthy diet. Right now - no gluten, no sugar, no lactose because of the bacteria problem in my sm intestine. But generally I just stay away from junk food and eat healthy. I also stay very hydrated all the time.

I always get a second opinion - every step of the way. Both of my doctors know this.

I have not lost my hair from treatment, but others have (like Vinny) and i'm sure they'll chime in.

God Bless you and all the best.

Donna

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