Newly diagnosed with FNHL of the GI Tract

Hi. My name is Keith. I am 50 years old with a 16 year old daughter, 12 year old son and a wonderful supportive wife of 23 years. I was dx in May 2011 with FNHL in the GI tract, Grade 1, Stage 1E. I have a small tumor inside my small intestine, located in the terminal ileum. It was found by accident during a colonoscopy. I have no symptoms. I had a PET scan that didn't pick up on the lymphoma. I also had a CT Scan of my GI tract that didn't pick up the lymphoma. My blood work is fine, bone marrow biopsy was clear. Endoscopy showed my stomach to be clear. Onc says the soft tissue tumors inside the intestine sometimes won't show on a scan. I am scheduled to see Dr. Ronald Levy at the Stanford Cancer Center on July 26th for a second opinion.

I have quietly been lurking here reading all of your stories since my dx. Glad I found this site. I was scared beyond belief the first few weeks after reading all the outdated info on the web. I quickly found this forum is a wealth of current information and warm compassion from the community. I am very appreciative.

I still don't have a clear path towards a treatment. Since it appears that I have a primary location of the disease, a surgical resection of my terminal ileum is an option. Treating with Rituxan/Treanda will also be an option. Another option is watch and wait. Onc says the chemo will burn off the tumor rather quickly, but I read that I run the risk of perforating my intestinal wall during the process as the tumor shrinks. Local onc doesn't think the chances are high that this will happen. I'm hoping I can get better guidance from Stanford and Dr. Levy in a few weeks.

Does anyone have any knowledge of treatment options for GI-FNHL? Would love to hear past experiences before I make any decisions.

Can't say I'm glad to be joining the club here, but I'm looking forward to hearing from folks who understand the situation I'm now facing.

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    WELCOME
    Keith,
    Welcome to the site you never thought you'd be on. My name is John. My site name is cobra666. That sounds like a terrible name I know. It was originally cobra66 to coincide with a Shelby Cobra car that my son and I own. I couldn't get on one day so I had to make changes to the name and before I gave it any thought I just pressed an extra 6.
    i have follicular NHL in my nodes of the stomach mostly. They are not in my intestines. There is someone on here that does have it in their bowel and I am sure she will be in contact with you shortly. The people on here, as you already know are a world of information and a great bunch of people to boot.Sorry I could not help you a little more. I just wanted to welcome you to the site. John(FNHL-1-4A-5/10)
  • miss maggie
    miss maggie Member Posts: 929
    Here I am for help
    Dear Keith,

    I am so sorry you have to be on this cancer site. Let me explain what happened to me. My
    DX is not FNHL. My original DX is "marginal B cell, stage 1, low grade NHL". Sub-type
    "extranodal marginal zone B cell NHL".

    In Sept 2009 I was feeling in the best of health. I had a terrible pain in my abdomen, was
    rushed to the hospital, had a CT scan which showed my small bowel perforated. I had an
    operation to resect my small bowel. A biopsy was done on tissue from the operation, which
    showed NHL. NHL in the small bowel.

    I had a bone marrow biopsy in Oct 2009, negative. Colonscopy June 2010 negative, and Pet scans in June 2010, and Dec 2010 each negative.
    The only treatment I had was Rituxan once weekly for 4 weeks. In Jan 2011, rather than
    using the word remission, from now I will say the cancer is gone. I will be seeing my
    oncologist in Sept 2011. I will also have a colonscopy in Sept 2011. My oncologist feels
    the cancer will not return, if it would, it would be 4 or 5 years, I would be treated with Rituxn only. I had no side effects from this treatment.

    You did mention a pet scan didn't pick up the lymphoma. I am not a doctor, but from what I
    was told, if a pet scan doesn't pick it up the cancer, the growth is extremely small. Perhaps
    treatment of only Rituxan would be beneficial????? You also stated "a surgical resection of my terminal ileum is an option". Please ask your doctor is there a chance of perforation if you don't have the resection"??? As you read in a prior paragraph, I was feeling great, but yet my small bowel perforated. Good news, the Endoscopy showed your stomach to be clear. Since the colonscopy picked up the cancer, you will have to have coloncopies often.

    Since you are scheduled to see a Dr. Ronald Levy at the Stanford Cancer Center on July 26th for a second opinion, I would appreciate it very much if you would post his opinion.

    I was extremely depressed when I received my DX. I later found out it is treatable.

    I am sending you my positive energy, and blessings to you. Love Maggie
  • Keith1961
    Keith1961 Member Posts: 10
    COBRA666 said:

    WELCOME
    Keith,
    Welcome to the site you never thought you'd be on. My name is John. My site name is cobra666. That sounds like a terrible name I know. It was originally cobra66 to coincide with a Shelby Cobra car that my son and I own. I couldn't get on one day so I had to make changes to the name and before I gave it any thought I just pressed an extra 6.
    i have follicular NHL in my nodes of the stomach mostly. They are not in my intestines. There is someone on here that does have it in their bowel and I am sure she will be in contact with you shortly. The people on here, as you already know are a world of information and a great bunch of people to boot.Sorry I could not help you a little more. I just wanted to welcome you to the site. John(FNHL-1-4A-5/10)

    Thanks John
    Thanks for the welcome John. I saw that your Lymphoma was discovered by accident during a scan. Sounds similar to how mine was discovered. I turned 50 in January and my doc said now was the time for my first colonoscopy. Didn't really want to do it, but I knew I should. I'm a pretty healthy guy and eat a good diet, so I wasn't too worried about them finding anything bad. Wow, talk about a shock when I got the results. I'm dealing with it better now, but those first few weeks were rough.
  • Keith1961
    Keith1961 Member Posts: 10

    Here I am for help
    Dear Keith,

    I am so sorry you have to be on this cancer site. Let me explain what happened to me. My
    DX is not FNHL. My original DX is "marginal B cell, stage 1, low grade NHL". Sub-type
    "extranodal marginal zone B cell NHL".

    In Sept 2009 I was feeling in the best of health. I had a terrible pain in my abdomen, was
    rushed to the hospital, had a CT scan which showed my small bowel perforated. I had an
    operation to resect my small bowel. A biopsy was done on tissue from the operation, which
    showed NHL. NHL in the small bowel.

    I had a bone marrow biopsy in Oct 2009, negative. Colonscopy June 2010 negative, and Pet scans in June 2010, and Dec 2010 each negative.
    The only treatment I had was Rituxan once weekly for 4 weeks. In Jan 2011, rather than
    using the word remission, from now I will say the cancer is gone. I will be seeing my
    oncologist in Sept 2011. I will also have a colonscopy in Sept 2011. My oncologist feels
    the cancer will not return, if it would, it would be 4 or 5 years, I would be treated with Rituxn only. I had no side effects from this treatment.

    You did mention a pet scan didn't pick up the lymphoma. I am not a doctor, but from what I
    was told, if a pet scan doesn't pick it up the cancer, the growth is extremely small. Perhaps
    treatment of only Rituxan would be beneficial????? You also stated "a surgical resection of my terminal ileum is an option". Please ask your doctor is there a chance of perforation if you don't have the resection"??? As you read in a prior paragraph, I was feeling great, but yet my small bowel perforated. Good news, the Endoscopy showed your stomach to be clear. Since the colonscopy picked up the cancer, you will have to have coloncopies often.

    Since you are scheduled to see a Dr. Ronald Levy at the Stanford Cancer Center on July 26th for a second opinion, I would appreciate it very much if you would post his opinion.

    I was extremely depressed when I received my DX. I later found out it is treatable.

    I am sending you my positive energy, and blessings to you. Love Maggie

    Maggie
    Thanks for sharing your story Maggie. My dx showed follicular lymphoma, but that will be verified at Stanford. I have the original slides, so I'm hoping they will take a look and verify the original pathology report.

    I am concerned about bowel perforation and plan on discussing this with Dr. Levy at length. I want to know how dangerous this is to "watch and wait" and how dangerous it is to go with the Rituxan. My local onc really doesn't want to go with a surgical rescection.

    During the colonoscopy they took a very clear picture of the tumor. It looks like it's blocking about 50% of my small intestine. The gastroenterologist I saw says most all of the stuff that goes thru here is very liquified, so that's why I don't notice anything wrong. He didn't feel comfortable about doing a capsule endoscopy because he was afraid it could get stuck at the tumor site. This would have been good to get a very clear look at the entire small bowel since it is about 20 feet long.

    I am glad to hear your cancer is gone. This gives me hope. I will post everything I hear from Dr. Levy at Stanford.
  • allmost60
    allmost60 Member Posts: 3,178
    Keith1961 said:

    Maggie
    Thanks for sharing your story Maggie. My dx showed follicular lymphoma, but that will be verified at Stanford. I have the original slides, so I'm hoping they will take a look and verify the original pathology report.

    I am concerned about bowel perforation and plan on discussing this with Dr. Levy at length. I want to know how dangerous this is to "watch and wait" and how dangerous it is to go with the Rituxan. My local onc really doesn't want to go with a surgical rescection.

    During the colonoscopy they took a very clear picture of the tumor. It looks like it's blocking about 50% of my small intestine. The gastroenterologist I saw says most all of the stuff that goes thru here is very liquified, so that's why I don't notice anything wrong. He didn't feel comfortable about doing a capsule endoscopy because he was afraid it could get stuck at the tumor site. This would have been good to get a very clear look at the entire small bowel since it is about 20 feet long.

    I am glad to hear your cancer is gone. This gives me hope. I will post everything I hear from Dr. Levy at Stanford.

    Welcome
    Hi Keith,
    I have FNHL(indolent)grade2-stage3(no bone involvement)typeA-diagnosed in June 2010. I did the CVP-R protocol, 6 rounds total, given every 21 days. Finished on Dec 14th,2010. My follow up CT scan in January showed the cancer to be stable(small area under the colar bone slight activity) so my Onc started Rituxan maint on Feb 14th to be given every other month for the next 2 years. Another CT scan was done in April and results showed everything is still stable. Next scan will be done in April 2012 unless something new developes..(new lumps or aggressive symptoms appear)etc. I was told the Rituxan can keep us in remission, or as in my case, stable, for years to come. If not, I still have other chemo protocols available to try. So far so good with the Rituxan. Fatigue and sore achey joints in my knees and left hip, but nothing so extreme that it keeps me from doing most of the activities I enjoy doing. I was told the cancer will come back in the future, but until it does, I plan to live each day as worry free and as full as possible. Please keep us informed on what your doctors decide to do and remember we are always here to help. Best wishes... Sue..(age 60).
    (FNHL-2-3A-6/10)
  • Keith1961
    Keith1961 Member Posts: 10
    allmost60 said:

    Welcome
    Hi Keith,
    I have FNHL(indolent)grade2-stage3(no bone involvement)typeA-diagnosed in June 2010. I did the CVP-R protocol, 6 rounds total, given every 21 days. Finished on Dec 14th,2010. My follow up CT scan in January showed the cancer to be stable(small area under the colar bone slight activity) so my Onc started Rituxan maint on Feb 14th to be given every other month for the next 2 years. Another CT scan was done in April and results showed everything is still stable. Next scan will be done in April 2012 unless something new developes..(new lumps or aggressive symptoms appear)etc. I was told the Rituxan can keep us in remission, or as in my case, stable, for years to come. If not, I still have other chemo protocols available to try. So far so good with the Rituxan. Fatigue and sore achey joints in my knees and left hip, but nothing so extreme that it keeps me from doing most of the activities I enjoy doing. I was told the cancer will come back in the future, but until it does, I plan to live each day as worry free and as full as possible. Please keep us informed on what your doctors decide to do and remember we are always here to help. Best wishes... Sue..(age 60).
    (FNHL-2-3A-6/10)

    Stanford says "Watch and Wait"
    I had my appointment with Dr. Levy at Stanford yesterday. He feels the best approach I should take now is "watch and wait" since I have no B symptoms. He says I shouldn't be concerned about perforation of the small intestine since this rarely happens with follicular b cell lymphoma. He also said it's rare to see perforation during treatments. He pointed out follicular lymphomma in the GI tract is very, very rare. He has 5 patients at Stanford with this disease (GI-Follicular Lymphoma) and they are all on watch and wait. One patient has been watching for 10 years. He also said I don't want to start treatments too early because then the Rituxan isn't as effective the next time I might need it. He stated the longer I am NED and watching, the more likely new treatments will be avaialable for me when needed. The Stanford opinion was consistent with what my local onc has recommended as well. I probably won't seek a third opinion.
  • allmost60
    allmost60 Member Posts: 3,178
    Keith1961 said:

    Stanford says "Watch and Wait"
    I had my appointment with Dr. Levy at Stanford yesterday. He feels the best approach I should take now is "watch and wait" since I have no B symptoms. He says I shouldn't be concerned about perforation of the small intestine since this rarely happens with follicular b cell lymphoma. He also said it's rare to see perforation during treatments. He pointed out follicular lymphomma in the GI tract is very, very rare. He has 5 patients at Stanford with this disease (GI-Follicular Lymphoma) and they are all on watch and wait. One patient has been watching for 10 years. He also said I don't want to start treatments too early because then the Rituxan isn't as effective the next time I might need it. He stated the longer I am NED and watching, the more likely new treatments will be avaialable for me when needed. The Stanford opinion was consistent with what my local onc has recommended as well. I probably won't seek a third opinion.

    Sounds good
    Hi Keith,
    Sounds like a good plan. You will know if something changes in your body. Watchful waiting seems to be a good option when possible to do. Good luck, and hopefully you will go years and years and not have to do anything. Best wishes...Sue (FNHL-2-3A-6/10)
  • miss maggie
    miss maggie Member Posts: 929
    Keith1961 said:

    Stanford says "Watch and Wait"
    I had my appointment with Dr. Levy at Stanford yesterday. He feels the best approach I should take now is "watch and wait" since I have no B symptoms. He says I shouldn't be concerned about perforation of the small intestine since this rarely happens with follicular b cell lymphoma. He also said it's rare to see perforation during treatments. He pointed out follicular lymphomma in the GI tract is very, very rare. He has 5 patients at Stanford with this disease (GI-Follicular Lymphoma) and they are all on watch and wait. One patient has been watching for 10 years. He also said I don't want to start treatments too early because then the Rituxan isn't as effective the next time I might need it. He stated the longer I am NED and watching, the more likely new treatments will be avaialable for me when needed. The Stanford opinion was consistent with what my local onc has recommended as well. I probably won't seek a third opinion.

    Watch and wait
    Dear Keith,

    I am so glad you confirmed that no treatment is needed. I was just worried
    because you brought up the chance of perforation. Watch and wait sounds good to
    me.

    Love Maggie
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    Keith1961 said:

    Stanford says "Watch and Wait"
    I had my appointment with Dr. Levy at Stanford yesterday. He feels the best approach I should take now is "watch and wait" since I have no B symptoms. He says I shouldn't be concerned about perforation of the small intestine since this rarely happens with follicular b cell lymphoma. He also said it's rare to see perforation during treatments. He pointed out follicular lymphomma in the GI tract is very, very rare. He has 5 patients at Stanford with this disease (GI-Follicular Lymphoma) and they are all on watch and wait. One patient has been watching for 10 years. He also said I don't want to start treatments too early because then the Rituxan isn't as effective the next time I might need it. He stated the longer I am NED and watching, the more likely new treatments will be avaialable for me when needed. The Stanford opinion was consistent with what my local onc has recommended as well. I probably won't seek a third opinion.

    the Watch-N-Wait program
    Hi Keith, Welcome to the site. this is a good place to be. I know of one person who was on watch-n-wait for 8 years and when NHL reared it's ugly head in Jan 2010, it was only in one place so that lymphnode was surgery removed and he continues to be on watch-n-wait.

    The longer you can put off chemo of any kind is best, as I have found Treanda has some tough late effects that I will probably have to deal with for the rest of my life. Flexerol does take the strongest and sharpest aches away, but there are some days I feel 90, when I'm only 53. the cold weather months are the worse. I do believe Treanda + Rituxan was a good plan for me, but I just now know there are other issues later on. so Watch-N-Wait sounds like a good plan.

    since yours wasn't found by PET or CT, will you be doing a colonoscopy yearly, plus the scans? Just curious as to how it's being watched or monitored?
    Thanks and Good Luck!
    Hugs
    Janelle
  • Keith1961
    Keith1961 Member Posts: 10

    the Watch-N-Wait program
    Hi Keith, Welcome to the site. this is a good place to be. I know of one person who was on watch-n-wait for 8 years and when NHL reared it's ugly head in Jan 2010, it was only in one place so that lymphnode was surgery removed and he continues to be on watch-n-wait.

    The longer you can put off chemo of any kind is best, as I have found Treanda has some tough late effects that I will probably have to deal with for the rest of my life. Flexerol does take the strongest and sharpest aches away, but there are some days I feel 90, when I'm only 53. the cold weather months are the worse. I do believe Treanda + Rituxan was a good plan for me, but I just now know there are other issues later on. so Watch-N-Wait sounds like a good plan.

    since yours wasn't found by PET or CT, will you be doing a colonoscopy yearly, plus the scans? Just curious as to how it's being watched or monitored?
    Thanks and Good Luck!
    Hugs
    Janelle

    watchin and waitin
    Hi Janelle,

    So sorry to hear about your experience with Treanda.

    Yes, I will be doing another colonoscopy in 6 months. They can get a good look at the tumor and check for any growth. Stanford says they have 5 other patients with GI follicular lymphoma and all are on watch and wait. One patient has been watching for 10 years. Hopefully that can be me in 2021!

    I will also have another MRI on my right femur in 2 months. Local onc thinks a small spot that showed up in the PET on my femur is red marrow conversion. I've had 2 MRIs of this area 2 months apart and the second MRI showed less intensity in the area, suggesting to the onc that it is not lymphoma, just red marrow conversion. Stanford docs raised a flag on this, and want it monitored more closely. Biopsy would be tough in this spot, drilling into bone and putting me on crutches for 8 weeks. No one wants to do this, so Stanford docs say with a few more MRIs they can rule out lymphoma as well. If it looks worse, a biopsy will be done. Follicular lymphoma on the bone is extremely rare BTW.

    It's going to take awhile for me to get comfortable with this watch and wait program. Sometimes I wake up in the middle of the night and just wonder what is going on inside my body. It's hard to put out of your mind because you know it's still there. I'm just taking each day one at a time right now and trying to enjoy my summer.

    Good luck to you.