Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[CAP]

I’m not sure if anyone mentioned mouth sores from radiation. Do you know an average time it usually takes for them to go away once radiation  is finished?

[Jen827]

@Roxy5g I went to the same proton center as well as my tumor (nasopharyngeal) was too close to my brain stem for traditional radiation.  I didn’t really need pain meds at all which was a plus.  I did however end up with a feeding tube and severe Mucositis (I also had debilitating chemo).  I’m five weeks out and still not eating.  I attribute very little of this to proton therapy.  I’m primarily not eating bc everything is gross. I believe that protons saved me from weeks of pain meds and hopefully future radiation complications! 

[Roxy5g]

To avoid a feeding tube I made. Daily shake from Boost 400 calories,  Rivalus 2 scoops 500- 600 calories, banana, strawberry etc.  That gave me a base of about 1200 calories. I drank melted ice cream. I had already lost 17 pounds after the surgery, leaving me at 110 pounds.  I remained at that weight during the 6 weeks of Proton therapy.   I am 2 months out of radiation and  am at the same weight. The Radiologist told me it would take a year to get my weight back.  I believe that it was having Proton instead of the regular Photon that saved me.  It was still very painful, moith sores etc. but it seems to Bea less destructive way to kill rogue cancer cells in the throat. I can only compare myself to others in my UCLA support group. I wish that they met more often than once a month.    Roxy5g

[CAP]

Thank you for the quick response. My husband isn’t having the proton therapy like you did, but I was wondering how long before the mouth sores cleared up.

[CaptainAustrali]

I don't think you'll ever get a happy answer with this kind of question.

An optimist will tell you "it should clear up within 2 weeks" (and yeah, the docs told me something like that with respect to the radiation dermatitis and internal sores)

But then, when there still problems after 2 weeks you get kick-in-the-guts demoralised.  

Oh the other hand, someone says something like "for me I still spat up blood after 6 months, and the sores and discomfort never really went away" .. it may not in any way apply to your situation, and it doesn't leave much room for hope and optimism.

My advice with any side effect that feels significant, is to take stock every fortnight.

Try and measure it, even keep a diary about it, and then two weeks later, compare how you are today to how you were then.  You'll get a sense of forward momentum, and honestly if you aren't seeing (even minor) improvements with any side effect over 2 weeks, it's worth framing a discussion with your doctor, and a side-effect diary would probably be helpful in them triaging and treating.

Mucositis for me took was horrible for the first month post treatment, really bad in the second month, bad in the third month, tolerable in months 4-5, and dwindling in month 6.

External radiation burns healed up gradually over a 2 week span, full neck motion returned (although I get spasms and cramps from internal nerve damage)

Sores in the mouth, I dunno.  Has anyone mentioned thrush medicines ?  In case it's useful, look at the possibility they might not be "sores" per se, like wounds .. but infection .. like thrush.  I got thrush during treatment (dry mouth etc etc exacerbates it), and some medicine (which tastes foul due to the dysgeusia) helped get it under control.

[Roxy5g]

I’m sure all of us wha have gone through with this have been given ‘ Magic Mouthwash’.  A must for the  mouth sores in mouth and tongue.

[Bill1]

hello everyone

i just read this on a site about Mucositis...perhaps the Capt. can comment or anyone else if they know anything about this product and if its worth having in the ready.....

.....

For the thick mucus, try Adding Qaufenistein to her meals. It is OTC at most drug stores and is cheap. It has no side effects and will thin out the thick mucus to nearly a water consistency. It is used in Mucinex products for this purpose. I take 1200 - 1600 mg/day - 400 each meal + 400 at bedtime. I have not found any info on max tolerable dosage yet beyond 2400gm/day. Make sure her head and shoulders are elevated at night so that the (now fluid) mucus will drain down her throat.

thanks

bill

[Roxy5g]

It was at its worst in the 4th or so. I got a lot of relief from the Magic Mouthwash.  The sores in my mouth and tongue were greatly relieved by constant gargling with it for the last few weeks of proton therapy.

[MikeR]

I just passed the five week post-treatment point and am happy to report that I am beginning to take on some foods by mouth (soups and juicy fruits). Looking forward to having the peg removed in September, when I have my follow-up scan (fingers crossed). In the meantime, I am exploring some modalities to help repair the damage off radiation and chemo. Would love feedback from anyone regarding these. The oncologist I see is entirely "Western" medicine, and has very little to say about any of these. In fact, his attitude is a bit contemptuous, which isn't very helpful, honestly.

In any event,  I had an appointment last week with an "alternative" health practitioner. She began the meeting with something called a "Zyto" scan. The results included supplement recommendations including something called "Paw Paw" (from the cancer-fighting paw paw plant). In addition, I had a "Bemer" microcirculation therapy, and was told to consider investing in a Bemer machine to use at home 2X daily. Really interested in feedback here. Anyone had experience with Bemer? Worth the investment? Also recommended was Rife Therapy-which seems to target cancer cells with sound frequency. Now, I am naturally a sceptic. These non-traditional approaches sound a bit "woo-woo" to me, but being vulnerable as I am, scared of dying, I am trying to be open to everything. But, with limited funds (and huge expenses), I need to be careful. 

I have also tried something called Rick Simpson oil, which contains a high level of THC. Honestly, I don't know how anyone follows the protocol for this (60 grams/90 days), because I was completely unable to function due to the high THC-felt like a complete stoner.

I am sorry to report that my hearing has worsened since my last chemo (Cisplatin). I understand that this may not improve. Recommend that everyone have a baseline hearing test before chemo.

Anyway, hoping to feel better over the next month and really appreciate any feedback.

[Jen827]

@MikeR I’m 38 with hearing aides now thanks to cisplatin.  

Has anyone on here had the experience of when trying to eat they have to chew for an absurd amount of time therefore turning the food into an unpleasant texture that is difficult to swallow?  If so does that go away?  I cannot taste most things but the inability to eat at this point is that texture issue.  I chew for so long everything essentially turns to slime and then I just need to spit it out.  Sorry - gross I know!  I’m getting very upset that I’m almost 6 weeks post treatment and this is still happening.