Fistula/hole in back of mouth

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

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.

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?

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 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 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 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 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 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 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).