Thank you Paul!

Where were you treated?

Too many places lol. I was treated at Mt Sinai at 95th Street, Staten Island Radiology, Staten Island University Hospital, St Vincent’s in SI, Beth Israel at Union Square, Beth Israel West, but think they may had another name, ProCure for Protons in NJ, NYU on 34th steet and on 1st ave, 38th Street, and a private oncologist in Staten Island.

Paul,

So happy I found your post here. My free flap essentially failed and they had to salvage with a pec flap. I see you have a pec flap too! I would be grateful to hear about your experience and any advice you can give me.


Jay

Maria,

Thank you for the rundown of your situation. I'm glad the treatments are in your rearview mirror! I'm in my third week and even that seems like an accomplishment compared to where I started. How are you feeling now?


Jay

Hi Jay,

I have a pec flap in the left neck from a recurrence in 2012, and did good with that, but had a recurrence to another area close by in the carotid in 2013, so I had my left carotid removed, IORT during surgery, and 6 weeks later, had proton radiation and chemo, which seemed to do the trick so far!

The segmental mandibularectomy was for osteoradionecrosis side effect of radiation and tooth extraction (injury), beginning in 2014, but this type surgery is the same as if it was cancer the the jaw area.

I hope you’re doing well with radiation? You cav start a new thread, and may get more responses.

Good luck

Hi Jay,

Now two weeks post Rads and am feeling considerably better. I am now able to eat many foods and actually starting to taste some flavors. I think I was emotionally unprepared for the duration of the radiation process taking 8 -9 weeks, not 6. I am going to see my surgeon this week and begin my monthly checks. I wonder how everyone deals with the fear of recurrence. I suppose we just try and take it one day at a time but the thought is never far from your mind. Hope you are doing better as well.

Maria

Maria, Im so glad you are starting to feel batter!!! The first few weeks after finishing rads are the hardest ones. Keep up with hitting your daily minimums of calories and hydration and you will soon see even more improvements.

As far as everyone's fear of having a recurrence goes, that one hits us all. After going thru so much with the radiation treatments thinking of having to go thru it again is terrifying!

Hang in there!!!

Thank you Christine!

Your advise has been very helpful as I’ve tried to get through the last few weeks of radiation.

Knowing there are others who understand your anxiety and fear makes you feel less alone.

Very grateful for this community!

Thats what were here for... to help each other! I had a terrible time struggling thru my rads and recovery. I hope to pass along what I learned to help others avoid the mistakes Ive made. OC is a horrible disease that causes patients to suffer so much. Its not just hard on the body, mentally its just as difficult to get thru. Being able to connect with others who have been in the same situation can make a huge difference to patients who are struggling. Its ok to lean on us to get thru the worst of it. We get it and are here for you and everyone else who needs us.

Best wishes with your continued recovery

The month after radiation was the most difficult for me. In retrospect I wish I had rested more and not tried to do so much. I followed Christine B’s advice strictly and my treatment team told me I was in the top 1% of minimal complication and side effects they had seen.

All credit to Christine!