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Extranodal marginal Zone Lymphoma on the roof of mouth

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

Hi all, my story short version - I was told my very "insignificant" cancer was kind of rare. I was wondering if anyone else had this in a similar location (mouth). In August of 2012 I had a lump about the size of a nickel in diameter appear on the roof of my mouth. It was strange but I just thought it was one of those things that would appear and then would be gone in a week or two. Well, I ignored it for almost 4 months but it persisted. I finally made myself go to the doctor. He looked at it and said it was a mucosa and needed to be lanced but I needed to go to the ear nose and throat doctor. The ENT said it was not a mucosa and he took a biopsy. That came back unconclusive so he removed the whole lump and sent it to the lab. It came back as extranodal marginal zone lymphoma. I could tell that he was unhappy to tell me it was cancer but he said "it is very treatable". He said you will just have a very low dose of radiation to clear it. I thought OK, let’s get it done. I had several doctors tell me the radiation was no big deal. They did a CT scan to make sure there were no other lymphomas. There weren't any but they found other non-related problems which I will deal with later this year.

 So, when I went to the radiologist he scared me half to death with "you will lose taste buds, you will have permanent dry mouth, you will need a feeding tube and we need to treat the neck to make sure it does not have a chance to spread. Well, he worked it out using IMRT to treat around the saliva glands so I was happy with that mostly. I started the radiation two weeks ago. Radiation is apparently nothing compared to Chemo but by itself it is no joke! It certainly is a bigger deal than I was told. I think I am doing the right thing because there is a good chance this will be a "cure". But seriously, that little lump turned out to be a really big deal. Granted, left alone it might have killed me but I never expected all this. My radiation will be 20 treatments. Five day a week until finished. The treatment does not hurt. You can't feel it but the feelings in my mouth were not covered for the first 12 treatments so the radiation scatter caused me to develop a lot of sores in my mouth. Add to that very swollen tonsils. Eating is a painful experience and almost impossible without the "magic mouth wash" they prescribed. I have 7 more treatments to go and I'm told those will be worse. Dog! So, anyone else gone through this?  

 

DD.

Rocquie's picture
Rocquie
Posts: 488
Joined: Mar 2013

DD, I have not heard of lymphoma in the mouth (yet). Someone here will likely have some experience with it. I have learned, since my own diagnosis, about many, many types and locations of lymphoma.

Good luck with the rest of your treatments and keep in touch.

Rocquie

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi DD,

 I can't help either about this type of cancer, but wanted to wish you well, none the less. I have Follicular NHL which didn't require radiation, just 6 rounds of chemo and then 2 years maint Rituxan infusions. Radiation is no walk in the park by any means and I have at least 3 friends that have gone through it. It's rough, but it looks like you are on the home stretch now, and if all goes as hoped for, you will be cured. I wish you all the best. Take care and let us know how things go for you. Best wishes....Sue

(Follicular NHL-grd2-stg3-typA-Dx 6/10-age62)

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi DD.  I wanted to welcome you to the site.  I'm afraid I can't offer you information as my experience is different.  Hopefully someone will post with similar experience.  Also, you might find some information from the throat and neck boards here.  I hope your treatments go well and please keep us updated.  You are not alone here.

Hugs - Jim

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

I'm not doing so hot with the side effects of this treatment but I feel bad complaining seeing what other folks have endured. The mouth pain is intense and the lidocaine only last a few hours. They offered pain medicine but I thought I didn't need it. Now, the pain has started waking me up at night. I'm going to ask for pain medicine when I get back there Monday. It is ironic that the cancer never directly caused me pain. I just had a lump on the left side and a "pimple" sized one on the right side of the roof of my mouth. I guess it is like my cousin said "Cancer can be sneaky". The treatment certainly is not.  

Rocquie's picture
Rocquie
Posts: 488
Joined: Mar 2013

Stating the side effects of your lymphoma treatment is not complaining. I'm very sorry you are in pain and I hope you get relief soon. There should be someone on call for the weekend, so you don't have to wait? Do you think ice would help?

(((Hugs)))

Rocquie

 

hiccup (not verified)

Hi DD,

I do not have the same diagnosis, nor have I undergone radiation; however, I have had some crazy mouth sore troubles. I'd really recommend taking some pain reliever like oxycodone to help. It did with me. The Magic Mouthwash is great and all, but doesn't cut it all the time. Sometimes a combination of both was all I could do to keep eating.

 

I also found some aloe juice at the store and kept it in the fridge, it was such a refreshing drink. I know it sounds weird, but it's GOOD!

Good luck,

Nathan

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

Thank you guys for the helpful comments. I went in for another treatment this morning. I ask for pain medicine and they gave me a prescrib for liquid hydrocodone\acetaminophen. I have some of the aleo juice. I really did not like the taste of it but come to think of it I can't taste much right now anyway. The coolness of it from the fridge does feel good though. I'll see how the pain med does this afternoon. I hope I can sleep more than 2 hours at a time.  

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

I hope you found some relief from the pain and that you got some meds to help.  Thanks for updating us.

Hugs - Jim

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

Well, when the first doctor said I had lymphoma on the roof of my mouth, he said "It should be able to be cleared with just a little radiation". I thought ok, no big deal. I had read of many people who said "I never missed a day of work". After all this was to be a "low dose" of radiation. I have a much greater respect and almost amazement for people who have "high dose" radiation. I had 12 to 15 small ulcers in my mouth after the first week. The pain stopped me from eating solid foods and I could not talk without pain. Maybe it is because the doc treated my neck as well as my upper pallet and the first two doctors did not expect that but this is not what I expected. I have missed almost two weeks of work because of weakness and inability to talk without pain. (my work requires me to talk to customers a lot). Fortunately, I have a lot of sick time saved up but this seems crazy. As the doctor predicted, the effects of the last treatment have been the worst. I'm not sure what I would have done if I had know exactly what to expect, but waiting to see if the lymphoma came back instead of enduring all this would have looked a lot more attractive. I just wanted to decrease the chance that it would return. I wonder if I did the right thing. All 20 treatments are complete now. I look forward to eating again. I've lost 8 lbs in 4 weeks. Not too bad. But I sure would like a big ole cheeseburger. lol. :)

 

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

I am hoping you get that big ole cheeseburger soon....rest assured that you made the right choice....Cancer sucks period, but enduring the treatments is not for the weak. I am to assume that the alternative would suck much worseWink. Have faith in yourself and in your body, you are a CHAMPION to go through with the treatments and conquer such an ugly disease. Congrats on finishing your treatments.

Carie

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Well...the bright part of this is that it's now done!  When I was done with my chemo treatments I put all of the bad experiences out of my mind and just focused on the end prize of reaching remission. It took 2 years of bi-monthly Rituxan infusions, but it finally happened this month and now it's ALL behind me. Take time to heal and listen to your body, and before you know it, eating a big yummy cheeseburger will be a reality instead of a wish. Take care, and thank you for letting us know how your doing. Best wishes...Sue  (FNHL-2-3A-6/10-age62)

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

Thank you guys for the kind words. I did need to hear someone tell me it was all worth it whom I consider experts. I know that when you or a loved one live through something like this you become experts as much as anyone can. Most doctors do care but unless they have lived it they cannot have the full picture. My mouth, tongue and throat finally healed up enough for me to start eating "real" food again without numbing everything. I got that cheeseburger, minus the cheese and lettuce only added. I could hardly taste it but still, it was delicious! :) 

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

I guess must people would call it a "hamburger" LOL?  I remember well many times not being allowed to eat during my journey because of tests, procedures and surgery.  A couple times all I got was a liquid diet but I tell you it was as good as a cheeseburger at the time :).  Who thought bland broth and jello would taste so good ;).  Of course it only lasted a few minutes and I wanted real food.

Thanks for your good wishes and same back to you.  Hugs - Jim

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

My thoughts and prayers are with all you guys. May you all be cured or in remission. May you all have the strength you need for the fight. Congratulations for your successes! May God bless. 

oldknight58's picture
oldknight58
Posts: 7
Joined: Apr 2013

Well, I am getting along great on this side of the radiation treatment but I still cannot taste sugar. I sure hope that comes back, although I suppose one month out is way too soon to write it off. If it doesn't come back I will be dissapointed but if the cancer never comes back, I suppose that is a worthwhile trade. Life is still sweet in other ways. 

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