Clinical Trial

catfish_58

Back again, Had been taking Keytruda treatments since November 2018, all was well till February 2020, and started getting a sore throat again,had a CT scan done and found the tumor had started growing, sent back to MD Anderson, was told i need to have it taken care of had to make a decision on wheteher to get robotic surgery,which was staying in hospital for a week or more and would have issues talking some and swallowing, or I could go to the same procedure as my first treatment which was 35 radiations and a double dose of chemo, had to double to be agressive, finally last which is the one i chose is a new clinical trial which seeing i have already had 24 immunotherapy tratments i was a prime candidate for this, suppose to be like proton therapy, except it was a high dosage of radiation only at the tumor and all i had to do was five treatments one every other day, Was wondering if antone else has been through this and outcome if possibe?

Drivingdaisy

What to Do

Since you didn't mention where tumor is that sounds like maybe further down you throat to affect speech & swallowing if you went surgically plus consider scar tissue which can developed over time.  If your going to get photon Therapy only 5 treatments sounds doable.  But after what I have been through I tend to lean towards less seems best.  Quality over quantity of life.  My Drs never gave Me that option or even talked heart to heart with Me on My goals.  I had a very small case and wrong on Staging & what all was infected.  Glad you are at a very good large Center that is informed on H&N Cancers.  I wish I had waited & done that.  What ever you decide may the outcome by fantastic for you.  Good Luck......Lisa.     Keep Us posted 

phatut

Participating in a trial of lower dosage radiation

hi Catfish, 

I'm participating in such a trial - had the robotic surgery to remove my right tonsil (+ another easy surgery to remove infected lymph nodes in my neck) back in 10/2018 after which I received a lower dosage of protone therapy for a month after the treatment (5 days a week x 4 weeks) - which is the clinical trial i'm participating in. 

I'm now being monitored for a 5 year period (frequency of return visits gets reduced every year). 

The surgery wasn't the easiest of experiences - but it was bearable. Had to be tube fed for a couple of weeks to let the area heal. 

Effects of radiation are mainly the saliva glands getting ruined - which may cause dry mouth symptoms - mine aren't that bad and i'm able to live with it without any issue. 

latest neck MRI with contrast showed the area is clean (2 years post surgery) and a CAT scan showed I have a very small nodule in my lungs (doesn't seem suspicious and requires time for an additional scan to show if it is growing, and also might be related to some other causes etc.) 

 

Wishing you all the best, 

Dan