Has anyone gone through the 30gy DART therapy, what is recovery like?

P.S. If you are having serious throat pain this early in treatment it may be thrush. That happened to me on the same timeframe.

Ask a doc to check. Nystatin worked fast and got me back on track. The bad pain didn’t return until the end of treatment (that was the radiation effect).

Gagging from phlegm was my biggest challenge. Losing all taste is awful too, but I’m three months out now and it’s probably 80% restored.

@jfh1970
Thanks for sharing all that. I wasn't a candidate for surgery either, similar circumstance
with the lymph node and a 3.5 cm tonsil tumor. No doubt larger by the time I got into treatment 3 mos later after diagnosis.
The NavDx test is available and might have blood drawn for that next week if the VA insurance will cover it.
Find that out tomorrow. you are 3 months out now good luck with the PET scan hope you are clear after all that !
Getting the IMRT photon therapy here so pretty concerned about swallowing issues , other
long term ailments and quality of life if the treatment continues much longer,
I am intrigued by a MSK study showing 2 chemo cycles and 30 gy is effective for non surgical
H&N HPV pos. patients .
https://www.mskcc.org/news/low-dose-radiation-possible-game-changer-treating-hpv-positive-head-and-neck

@woodsy1 I know photon produces significantly more side effects than proton, but it is equally as effective with this disease.

Suggest you do everything possible to stick it out. When eating becomes nearly impossible, try to sleep more. You’ll be tired anyway and the days go by faster that way.

@jfh1970

Good call on the Thrush because that came on strong starting about the 3rd week.
Never had that before and thought those white spots in my mouth and throat were just the effects from chemo/radiation but the Doc diagnosed it properly.
Getting that resolved now.
That is great news you are recovering fairly well from treatments and cancer free to boot !

Hi @jagsromp, I was just reading this discussion, and I am wondering if you proceeded with the DART 2 week 30gy chemo/radiation treatment and if yes, what was your experience like? My husband begins this treatment in a couple of weeks.

Copy and paste from my first post here. Hope it helps and prayers to you and your husband for an uncomplicated course of treatment. It's unpleasant, it's really tough some days, and.....it is temporary. Keep posting with your progress!

First post after joining the forum today. I hope my experiences can be helpful.

I am enrolled in DART 2.0 and had TORS surgery at St. Mary's mid November. I completed the two week (2xday) chemoradiation regimen a little over four weeks ago. I am very happy I did it and have high hopes I don't experience recurrence.

* The first week was fairly easy with minimal symptoms of any kind. I am not claustrophobic but having the positioning mask clamped down on my face/chest really gave me some anxiety. I managed with Ativan 30min prior to treatment and I was able to manage it from there.

* By the end of the second week I began to develop some serious mouth ulcers, fatigue, and definite changes in my ability to taste food or having altered taste. I also experienced the ropey, thick saliva they told me to expect.

* I was sent home with a fentanyl transdermal patch x nine days to control pain which worked well. I did not use the additional opioids or lidocaine gargle rinse, and found I was able to swallow water and soft food / shakes despite moderate pain.

* I am a little over four weeks out from end of treatment and I am doing spin classes, normal house chores, eat anything I chose to (taste is only 25%).

I wouldn't even consider not doing the chemoradiation therapy prescribed in the study. It sucked going through it (for a relatively short time), but I deal with the neck dissection surgical complications much more. I am incredibly grateful to be included in the study and am doing EVERYTHING they told me to do to give myself the best odds of a cancer free life full of vitality.

I wish you all the best!

@cara5 Apologies....I just noticed we had been sharing notes previously. I sent off my reply without checking who the question was coming from. Your husband is in great hands!

@rebgen Hahaha, no worries! And yes, I agree that he is in very capable hands.
I am wondering (and I know everyone's pain tolerance can be different) but did you find the pain after the radiation to be more, less or equivalent to the post TORS/Neck Dissection surgical pain??

@cara5 As you mentioned, pain tolerance is so subjective. I consider myself reasonably pain tolerant...lots of practice in the last six months 🙂

My chemo/radiation began 3 1/2 weeks post-op and I was starting to feel better at that point. The pain and other symptoms didn't really develop until the last few days of my two week regimen. By the last day I was not feeling well and I was developing some significant mouth ulcers, loss of taste and appetite, and serious fatigue.

I experienced more pain and discomfort compared to surgery, especially for the 10 days after going home. Swallowing was pretty difficult but possible with patience and small amounts of soft food and water.

Here's the good news. My team had prepared me so well in terms of what to expect and were available anytime if I needed additional support. They also provided me with several drugs to be used depending on the severity of my pain or difficulty swallowing. Beginning the day of my release home I was on a fentanyl transdermal patch for 9 days. That seemed to provide a good foundation to manage my pain. Combined with that I took an alternating combo of Tylenol / ibuprofen every 3 hours. The pain was still significant but it was under control and manageable.

Additionally, they provided me with liquid oxycodone for additional pain control and "Magic Mouthwash" / lidocaine rinse to numb my throat in order to swallow. I didn't require any of those options thankfully.

Finally, they also prescribed a series of IV infusions every 2-3 days for hydration support if I wasn't able to drink enough fluids every day. I did take advantage of that even though I was able to drink 45-60oz per day. In hindsight I would not do that again as I felt really crappy and didn't feel better after the infusions. I was able to swallow well enough to hydrate without it.

The wonderful thing about all of this is that it's temporary and you will have even more confidence you're putting all of this cancer stuff behind you. My first quarterly follow exams were in later March and getting a NavDX score of 0 plus negative PET/MRI scans was a huge relief for me! Now it's a lot of biking, golf, and getting back to enjoying life again! My son's wedding is in a few weeks and I am so thankful all of this stuff didn't happen during that time....grateful!

My comments aren't super organized but I wanted to get my experience out to you as you prepare for treatment. Let me know if I can add anything if you want more feedback about the chemo and/or radiation treatments. You got this and I look forward to hearing how you're husband is progressing.

@rebgen My husband begins his radiation/chemo 8 weeks post op as initially he wasn't going to do the radiation and when he did make the decision to do it, this was when there was availability. So far, he has been provided with his anti nausea/vomiting medications Dexamethason(taken the day before, day of and day after his baby dose of chemo) and also Ondansetron, Olanzapine and Prochlorper, on an as needed basis.(So many!) Did you need these as well? We will need to get clarification on how to discern when and which ones to take. He has not been given any of his pain medications yet, but I remember the nurse discussing the lidocaine mouthwash and pain meds, so it was helpful to hear what you were given for your treatment. And finally, congratulations on those positive test results and your son's wedding! It's wonderful that you will be able to attend especially while feeling back to your 'old self' again!