Update: 18 months Post

ProustLover

Hi Everyone - It's been about 18 months since my husband finished treatment for Stage 4 HVP+ tongue cancer, with mets to lymph nodes in neck.  (Tongue surgery, chemo, radiation, modified radical neck dissection.)  Third scan just came back NED, which is especially great, since in the meantime he'd developed a "new" cancer on tongue.  The new cancer was on site of a lesion (or sore, or ulcer) which had been there right along, but radiation made it worse. The expectation was that it would heal, but it only got worse, eventually showing mild dysplasia, then candida and fungus, and finally severe dysplasia/cancer in situ.  It was non-invasive, and decision made to attack it with CO2 laser ablation.  That surgery went well, but of course the poor guy didn't heal.  After 8 weeks, the site had sprouted a thin "stalk" with a big mushroomy thing growing out of it.  Surgeon was seeing him regularly, and attempting to cauterize using silver nitrate. Then the dental oncologist got involved and "snipped" the stem of the thing, requiring another biopsy.  The biopsy and CT scan were both fine, but the spot is sore and leukoplakia is starting to develop.  We are relieved at the test results, but dismayed at leukoplakia, which started the whole darn ordeal.   They've given him lidocaine "jelly" for his tongue.  We're not scheduled to see anyone for about 6 weeks, so we'll  do our best to live it up and enjoy fall before jumping on Phrannie's fan again.  Thanks for listening!  I'm hoping this helps anyone out there dealing with the leukoplakia thing...it's not common on this forum.  Sending our best to all you courageous fighters out there...

wbcgaruss

Well ProustLover Glad your Hubby

Is 18 months and counting with his last scan clear. But so sorry you are having so much trouble with this leukoplakia thing. You get through all this treatment and just want to finish up and heal up and recover and get it over with but your hubby has this one thing hanging on that is a real bugger. Hopefully now that they "snipped" the stem of the thing as you say you can get it under control and complete his recovery-Take Care-God Bless

Sabrina23

ProustLover prayers to you

ProustLover prayers being sent to you for a positive outcome.  Hopefully the leukoplakia will clear itself out and be rid of it. It is a battle at times but it does get better I promise.  All Good thoughts coming your way!

ProustLover

Sabrina23 said:

ProustLover prayers to you

ProustLover prayers being sent to you for a positive outcome.  Hopefully the leukoplakia will clear itself out and be rid of it. It is a battle at times but it does get better I promise.  All Good thoughts coming your way!

Thank you, Sabrina23 - you

Thank you, Sabrina23 - you are so sweet and kind.  My hubby's ordeal began in 2009 with tongue leukoplakia.  It was monitored for almost 7 years before turning into cancer. It was caught early, but still managed to spread.  For most people, these white patches come and go, and never become a problem....but they should definitely be checked out and watched.  For us, they've always spelled trouble.  Can only hope things will be different next time around.

ProustLover

wbcgaruss said:

Well ProustLover Glad your Hubby

Is 18 months and counting with his last scan clear. But so sorry you are having so much trouble with this leukoplakia thing. You get through all this treatment and just want to finish up and heal up and recover and get it over with but your hubby has this one thing hanging on that is a real bugger. Hopefully now that they "snipped" the stem of the thing as you say you can get it under control and complete his recovery-Take Care-God Bless

The silver lining

If there is a silver lining, it's that a lot of docs are watching the thing, and will definitely see if someting gets worse.  We drive an hour each way in fairly intense traffic, but it's ok.  Plus, they've got him involved in a study. But you're so right...after going through so much, it's just a bummer and drag to see the same symptoms starting back up. Thanks for encouragement, and the same back to you in full force.

CivilMatt

A few words from Matt. Congratulations on 18m NED

 

ProustLover,

I am very glad you are presently at “Camp NED”, it is after all the place to be.

What I find interesting is your description of this “new” (your words) cancer. First off, I am just your typical H&N member who is trying to learn and absorb ALL this information about H&N cancer coming at us from everywhere. Second, one of my older sisters is a doctor of viro-biology (recently retired) who worked closely on the HPV for her last 9 years of work.  The hpv+ H&N member can have the hpv for many years before it (the hpv, human papilloma virus ) shows itself.  It often lays undetected in the tongue (buried) so no one is aware. And then one day a lymph node swells on your neck and an examination of the H&N finds the hpv caused ulcer on your tongue. This is what happened to me and many other members of the  H&N forum.

What I find interesting is it is a “new” cancer and it is in the same place of the previous cancer. I am sorry your first round of treatments didn’t get this. I do not doubt what you have told me, I just find it to be one (more) of the baffling thing about our cancer(s) here at H&N Central.

I do believe that in my case, the decision to have surgery and rads on the site of my “tongue hpv eruption” is what I work around all day long every day, ie, the dry mouth, the runny nose, the cough, the choking, small bites, chewing my food like a cow chewing it’s cud,  the three glasses of water with each meal, water all day long, using the restroom continually, taste different, all the things we all share here. I also believe that my team saved my life (for that I am very thankful), it would have been sad to never have known the members of the H&N forum.

Then ProustLover, yout have (most likely accidentally) outperform most H&N members (with your words and description)  in your story by mentioning it “only got worse, mild dysplasia, Candida and fungus, insitu (side note: I have used the word insitu in a report on storm water), non-invasive CO2 laser ablation”  (wow, laser ablation). He did not heal, sprouting thin stalks, big mushrooomy thing, cauterize using silver nitrate.  In comes the dental oncologist, snipped the stem, another biopsy and CT scan. Finally, it is not cancer but the spot is sore and dismayed at leukoplakia. Well, put some iodocaine “jelly” on his tongue and we will see you in 6 weeks.

Lastly, I have booked a fan blade for the two of you (Phrannie’s treat).

I get a little carried away on some posts, but this one was special. If you know me, then you know I am not being a smart alec.

The best of luck going forward and yes, I will be thanking my “lucky star” for my current condition at 7y, 5m, 26d post.

Matt

ProustLover

CivilMatt said:

A few words from Matt. Congratulations on 18m NED

 

ProustLover,

I am very glad you are presently at “Camp NED”, it is after all the place to be.

What I find interesting is your description of this “new” (your words) cancer. First off, I am just your typical H&N member who is trying to learn and absorb ALL this information about H&N cancer coming at us from everywhere. Second, one of my older sisters is a doctor of viro-biology (recently retired) who worked closely on the HPV for her last 9 years of work.  The hpv+ H&N member can have the hpv for many years before it (the hpv, human papilloma virus ) shows itself.  It often lays undetected in the tongue (buried) so no one is aware. And then one day a lymph node swells on your neck and an examination of the H&N finds the hpv caused ulcer on your tongue. This is what happened to me and many other members of the  H&N forum.

What I find interesting is it is a “new” cancer and it is in the same place of the previous cancer. I am sorry your first round of treatments didn’t get this. I do not doubt what you have told me, I just find it to be one (more) of the baffling thing about our cancer(s) here at H&N Central.

I do believe that in my case, the decision to have surgery and rads on the site of my “tongue hpv eruption” is what I work around all day long every day, ie, the dry mouth, the runny nose, the cough, the choking, small bites, chewing my food like a cow chewing it’s cud,  the three glasses of water with each meal, water all day long, using the restroom continually, taste different, all the things we all share here. I also believe that my team saved my life (for that I am very thankful), it would have been sad to never have known the members of the H&N forum.

Then ProustLover, yout have (most likely accidentally) outperform most H&N members (with your words and description)  in your story by mentioning it “only got worse, mild dysplasia, Candida and fungus, insitu (side note: I have used the word insitu in a report on storm water), non-invasive CO2 laser ablation”  (wow, laser ablation). He did not heal, sprouting thin stalks, big mushrooomy thing, cauterize using silver nitrate.  In comes the dental oncologist, snipped the stem, another biopsy and CT scan. Finally, it is not cancer but the spot is sore and dismayed at leukoplakia. Well, put some iodocaine “jelly” on his tongue and we will see you in 6 weeks.

Lastly, I have booked a fan blade for the two of you (Phrannie’s treat).

I get a little carried away on some posts, but this one was special. If you know me, then you know I am not being a smart alec.

The best of luck going forward and yes, I will be thanking my “lucky star” for my current condition at 7y, 5m, 26d post.

Matt

Ha Ha, Civil Matt!

If I can be entertaining along with thorough, that's a success!  I do crack myself up at times.  (Anyway,  I managed to edit out the part about his "granuloma" and "mucosal outbreak" - will regale you some other day).   Thanks for the art work...it's really nice.