Fistula/hole in back of mouth

MST

Hello Everyone,

I am new to the group, having been checking in routinely for the past couple of months.  This is my first post/comment.

I had surgery to remove an invasive tumor of the left buccal mucosa last October, which resulted in a partial maxillectomy and free flap reconstruction.  The surgery was follwed up by 30 rad treatments/no chemo.

I seemed to be doing ok but three and a half weeks ago after removing my flouride trays I looked in into my mouth and saw a hole/fistula in back of the last mandibular molar on the left side of my mouth. It was shocking and devastating as it appeared literally overnight since I check my mouth every day.

Immediately contacted my Drs. and the plastics group responded saying that it was most likely a result of tissue damage from the radiation, but that they typically do not perform any surgery for 6-12 months post radiation, to allow things to "cool down".

The fistula has progressively increased in size, I have excessive sputum that is often tainted brown in color with an odor.  I have pain that extends throughout the radiated area, essentially the entire left side of my face. In the ear the pain can be sharp, while a throbbing pain runs from behind my left eye down into my shoulder.

 

I live overseas and when I got to Houston was told a 14 day self quaratine was required before I would be let into MDA. I am set to be in clinic in five days. Have been on nothing but liquids since the emergence of the fistula.

I am very worried. Has anyone else had an experience similar to this?

 

 

wbcgaruss

Hello MST

I am sorry you are having this problem post-radiation. I have not had any experience like you are having but hopefully, someone on here had it and can offer some helpful information. I am just responding to your post to say stay positive and stay strong. We certainly live in unusual and difficult times as you had to do a waiting period to get into MD Anderson whereas previously they could have gotten you right in. This gives you more time to be concerned but keep hope. I am glad you only have 5 days till you are going to be seen and they will get to the bottom of this and have a solution for it. I have heard the name MD Anderson on here many times and they are highly ranked for their treatment. Stay safe-prayers your way-Take Care-God Bless

MST

Thank you Russ for the kind

Thank you Russ for the kind words of support.

Logan51

MST

I've been on this Forum twice, starting in 2009, and I've never heard of this. Thing is- those on the Forum over said amount of Time are only a fraction of those w/H&N, so others may have had a like problem, and the place to be would be MD Anderson= one of the very best in the US. Please keep us informed. Thoughts and Prayers are with you.

MST

It turns out to be a an

It turns out to be a an aggressive recurrance of the cancer that has eroded through. Devastating news for my family. The radiation did not work at all.

Dr. told me there is not much they can do (no surgery can be done this close to the end of radiation). I'll start chemo next week but Dr. said I need "a real miracle" to continue living.

Preliminary results from CT scan indicated no metastsis, but I await the final report. Biopsy ananalysis not completed yet either.

I developed an arterial bleed going to the tumor a few days ago that required an emergency angioplasty procedure. I was bleeding profusely into my mouth. It was terrifying as intubation had to done while I was awake and sitting up to minimize aspirating blood.

Needless to say I am mentally and physically broken. This is a nightmare.

Logan51

MST

Very sorry to hear this. I cannot see how the Rads did not wipe it out- if done right. Any chance of reconstructive if samples come back negative?

wbcgaruss

I Am Sorry To Hear Of Your

Difficult situation. All I can say is look to whatever the positive is that you can find and be prepared for the best or worst news-Trust in the Lord for strengthening, courage and hope.

My Prayers are with you and your family-Take Care-God Bless

corleone

Sorry to hear that.

Sorry to hear that.

However, I do believe that chemotherapy should be effective, at least initially.

You mentioned that there was no chemo during first treatment; was this offered, or not (was it earlier stage)? What kind of tumor? Was it HPV positive? You should definitely have this info on the path report.

Ask for a combination chemo and targeted therapy; something that contains cisplatin and Cetuximab, for instance.

Also, look into immunotherapy, either FDA approved, or clinical trial.

I don’t understand why all they offered was (just) chemo. If that’s the case, ask for second opinion, something is not right.

MST

Logan51 said:

MST

Very sorry to hear this. I cannot see how the Rads did not wipe it out- if done right. Any chance of reconstructive if samples come back negative?

It was a tremendous shock to

It was a tremendous shock to have 30 rads to the entire left side of face with no impact at all.

No surgery can be done for at least 3 more months, need at least 6 months post rads they said.

MST

corleone said:

Sorry to hear that.

Sorry to hear that.

However, I do believe that chemotherapy should be effective, at least initially.

You mentioned that there was no chemo during first treatment; was this offered, or not (was it earlier stage)? What kind of tumor? Was it HPV positive? You should definitely have this info on the path report.

Ask for a combination chemo and targeted therapy; something that contains cisplatin and Cetuximab, for instance.

Also, look into immunotherapy, either FDA approved, or clinical trial.

I don’t understand why all they offered was (just) chemo. If that’s the case, ask for second opinion, something is not right.

Thank you for this

Thank you for this information. I will be sure to ask about it.

No chemo offered initially nor with radiation. Tumor was T4aN0M0

HPV negative.

 

MST

wbcgaruss said:

I Am Sorry To Hear Of Your

Difficult situation. All I can say is look to whatever the positive is that you can find and be prepared for the best or worst news-Trust in the Lord for strengthening, courage and hope.

My Prayers are with you and your family-Take Care-God Bless

Thank you Russ

Thank you Russ

corleone

MST said:

Thank you for this

Thank you for this information. I will be sure to ask about it.

No chemo offered initially nor with radiation. Tumor was T4aN0M0

HPV negative.

 

I am surprised that they only

I am surprised that they only offered surgery plus radiation. N4 is considered a more advanced stage, and concurrent chemo and radiation is the best bet, because they act synergistically together.  

Also you mentioned that you had 30 radiation sessions, where in fact should have been more like 35 (anyway, the idea is to get 70 Gy (2.0 Gy/fraction) over 35 sessions (7 weeks).

So the key point here is to ask for combination treatment. I don’t know what the best protocol for recurrence is, but for sure one chemo won’t do it. Should be a combination of 2 chemos (or just 1, if there are safety issues), plus a targeted one (I mentioned Cetuxumab, but could be a similar EGFR inhibitor monoclonal or TKI – doesn’t matter the terminology, just ask for targeted therapy, names vary). 

Immunotherapy is another good option, this is "hot" right now. The downside is that works only in ~20% cases, but when it does, it’s very effective. If unlucky, you can have chemo afterwards (as chemo tends to decrease the immune response).  Or, there is also combination Immunotherapy, depending on the staff's expertise. Some folks on this forum already went through this (I haven't).

And don't forget to ask about clinical trials (better early phase studies, with new compounds).

 

MST

corleone said:

I am surprised that they only

I am surprised that they only offered surgery plus radiation. N4 is considered a more advanced stage, and concurrent chemo and radiation is the best bet, because they act synergistically together.  

Also you mentioned that you had 30 radiation sessions, where in fact should have been more like 35 (anyway, the idea is to get 70 Gy (2.0 Gy/fraction) over 35 sessions (7 weeks).

So the key point here is to ask for combination treatment. I don’t know what the best protocol for recurrence is, but for sure one chemo won’t do it. Should be a combination of 2 chemos (or just 1, if there are safety issues), plus a targeted one (I mentioned Cetuxumab, but could be a similar EGFR inhibitor monoclonal or TKI – doesn’t matter the terminology, just ask for targeted therapy, names vary). 

Immunotherapy is another good option, this is "hot" right now. The downside is that works only in ~20% cases, but when it does, it’s very effective. If unlucky, you can have chemo afterwards (as chemo tends to decrease the immune response).  Or, there is also combination Immunotherapy, depending on the staff's expertise. Some folks on this forum already went through this (I haven't).

And don't forget to ask about clinical trials (better early phase studies, with new compounds).

 

I had another arterial

I had another arterial embolism last week on the 15th, which has delayed chemo treatment.

It looks like I will be meeting with the Oncologist this Thursday.  My wife spoke to the PA while I was admitted and was told that the following are the drugs they will be giving me: Keytruda, Carboplatin, Docetaxel.  So, as you noted, it will be a 3 drug combo.

I'll know more details as to why these 3 were chosen after meeting with the Oncologist.

 

Thanks again for the information you provided.

corleone

MST said:

I had another arterial

I had another arterial embolism last week on the 15th, which has delayed chemo treatment.

It looks like I will be meeting with the Oncologist this Thursday.  My wife spoke to the PA while I was admitted and was told that the following are the drugs they will be giving me: Keytruda, Carboplatin, Docetaxel.  So, as you noted, it will be a 3 drug combo.

I'll know more details as to why these 3 were chosen after meeting with the Oncologist.

 

Thanks again for the information you provided.

This is a combination of

This is a combination of immunotherapy (Keytruda) with 2 chemos. Sounds much better than initially told. As I mentioned before the response to immuno can be very good (complete remission) in ~20% cases, but you never know beforehand if it will work or not. I am pretty sure it will, though. The chemo combo contains a platin (carboplatin is less toxic than cisplatin) which works well with docetaxel (they have complementary mechanisms of action, as well as different set of adverse events (not overlapping much).

MST

corleone said:

This is a combination of

This is a combination of immunotherapy (Keytruda) with 2 chemos. Sounds much better than initially told. As I mentioned before the response to immuno can be very good (complete remission) in ~20% cases, but you never know beforehand if it will work or not. I am pretty sure it will, though. The chemo combo contains a platin (carboplatin is less toxic than cisplatin) which works well with docetaxel (they have complementary mechanisms of action, as well as different set of adverse events (not overlapping much).

Thank you

Thanks for following up on this. Your knowledge and feedback gives me hope.

I will be getting 6 treatments, 3.5 weeks apart.

corleone

MST said:

Thank you

Thanks for following up on this. Your knowledge and feedback gives me hope.

I will be getting 6 treatments, 3.5 weeks apart.

Google for info on the

Google for info on the medications you'll receive, so that you will know what to expect in terms of side effects (note, however, that you will not get "all" of them (it's a long list), so don't be scared, it's just to give you a hint).

One point to make for Keytruda - you may experience a "flare-up" of the tumor, that looks like increased tumor volume on CT. However, this may only be a so-called pseudo-progression, and indicates just an infiltrate of the tumor with lymphocites. This needs to be followed-up after 4-6 weeks by another scan, to confirm if it's indeed progression, or pseudo (in that case the volume will return to baseline value or even decrease).

wbcgaruss

corleone Thanks

for your input, I'm glad you thought of all those possibilities it gives hope-Your knowledge and help is a great blessing to this forum-Take Care-God Bless

MST

It has been a longtime since I last was here. The new format is nice.

I am still alive, obviously, as the chemo/keytruda treatment took care of the tumor. I had some terrible results from the treatment. The tumor had pressed against my left cheek and against my hard and soft palates. As the cancer died it created a large hole in my cheek. I also lost my left ramus and condyle. Pieces of my mandible literally calved off. It was painful. I also developed a smaller hole where whats left of my left side mandible protrudes. In addition I lost the left sides of my hard and soft palates. So, I live with terrible wounds on the left side of my face which I cover with a large patch covering the left side of my face, and have a huge open space in the left side of my mouth. The oncologist told me that I should expect dynamic changes during the treatment. I never expected the result I now live with. I can't talk and am on a feeding tube. Last few scans were NED. I go for another next month. Alive but severely limited. Often depressed.

Logan51

Very understandable on how you are feeling, MST: alive, but the quality of life sucks. All you can do is the best you can and check all options to rebuild via a plastic Surgeon, I should think. Hoping you get help, and the quality of life is acceptable in your mind.

I am FT-dependent for what's left of my life, and not far away from a trachea for life- all because of Rad damage done in '09. Because of my trouble breathing I did some research and found a report out of Cedar-Mt. Sinai about laryngeal stenosis. What caught my eye was it said the Patient will feel like he/she is in a "malaise," which is exactly the way it's been with me for months before I read the article. Malaise? "An indefinite feeling of debility or lack of health...a vague sense of mental or moral ill-being." It's like I'm here, but not me- no ambition, and not really caring much about anything, e.g. Think that's what's going on with me, rather than depression, but might be a fine line between the two.

Again, hoping for the best to come your way down the road.

MST

Logan51, Thank you for the response and kind words. I'll request a visit with the plastics surgeon who operated on me initially, see what he has to say. For some reason I am not hopeful but who knows.

I am sorry to hear about your laryngeal stenosis. I hope you don't end up needing a trachea. Malaise doesn't sound too different than depression. In fact, it sorta of describes me as well.

I found an article recently that stated radiotherapy can awaken cancer stem cells resulting in tumor relapse and metastasis. I suppose that's what probably happened to me. I am lucky it did not spread.

Wishing you the best Logan51, and thanks again for responding.

LitlCJdoll

https://csn.cancer.org/discussion/comment/1696960#Comment_1696960

Hey Logan,

Man, just be Grateful that you aren't where I am with Metastatic end stage Terminal , Second Primary cancer.... Which Yes, they say could well have been Caused By the 66 Gy Radiotherapy I got early 2018.

Of course, we do not know for sure and all mine have been Negative for all hpv types. I have none of that virus, which my RO told me is why Radiation treatments did not work for me.

Got Tumors ? Yeah... Got Pain? Yeah... No swallow, No Voice at all.

By the way, I am now 60 pounds. That's no misprint, in clinic/ at the hospital wearing clothes I am 60 pounds. I have Cancer Cachexia. Its eating my muscles away too. Got severe WEAKNESS? .yeah..

Crystal, in Hospice care.

MST, my strong hope is you can withstand all treatments, procedures, surgeries coming your way to try and restore your sense of Self normalcy or approachibgbit, anyway. Believe me, when I tell you I fully understand.

Crystal, in Hospice care.