3-Weeks Post Treatment

OKCnative

I'm a 47yr old male, non-smoker, non-drinker, in very good health. Diagnosed with Stage 3 SCC base of the tongue, HPV+. Did the traditional 35 rads and 3 doses of chemo. I did NOT use a chemo port or feeding tube.

 

On This coming Tuesday marks three weeks since treatment ended.

I think the entire treatment process went fairly smoothly for me (compared to many stories I've read here). I had my last solid food meal on Aug. 15th (a few weeks into treatment). While I didn't do the feeding tube, I did have to switch to Boost VHC (4x day) and a protein supplement.

The only symptoms I experienced in treatment were; fatigue, general sick feeling, dry heaving (from gagging reflex), sweats and chills, extreme mucus production, extremely sore throat (as in tears to my eyes while trying to swallow my meals). I also lost 15-20 pounds from my normal weight (actually 35-40 if you count the 20 pounds my wife made me put on prior to treatment).

I never experienced nausea, never threw-up, no chronic mouth sores, no dry mouth, no loss of taste and no jaw issues.

Currently, the only symptoms I suffer from are; fatigue, extremely sore throat and mucus.

The fatigue is to be expected and I assume will be with me for awhile.

The sore throat is getting better. It's down to medium pain with the first and second swallow and then goes away. I expect that will get better as time goes by.

The mucus is still an issue. While it has slowed a lot, it is still so frequent that it greatly affects my ability to sleep or go out in public. I do not seem to be swallowing anything - spit, saliva or mucus. When I do it often makes me gag and is painful. So, I end up spitting literally every 5-30 minutes. This makes it impossible to sleep. I take pain meds at night and that lets me sleep for about 45 minutes at a time. But, I still wake up because I start gaging on the mucus collecting in my mouth.

I really hope the mucus stops soon! I see my doctors and my ENT next week and will ask them about it.

Last week I tried a few bites of eggs and a vanilla shake. I only literally had two bites of each. Both irritated my throat and the eggs seemed to get hung at the base of my throat for awhile. I decided to give it another week or two before I try again.

Overall I feel lucky to have not have a rougher time at treatment.

CivilMatt

sitting pretty

OKC,

You are a lucky duck, no dry mouth, no lost taste; I want what you had (for treatment).  They should take samples of your blood and make-up an anti-side effects treatment for H&N patients.

I hope the issues you have are short term while you return to a (very good) new normal.

Matt

tommyodavey

Congrats

Good deal with not losing so many other senses.  Most of us lost taste and saliva.  The mucus is the worst of all.  But like you stated, it will get better.  To me, it was so disgusting hacking up all that vile gunk that I tried to go somewhere other than where my wife was so she wouldn't see it.

That is the bodies response to trauma.  Once you get better it will lessen gradually.  Mine wasn't as near as bad as yours so I'll let the other members chime in for support. But yes, you are correct that most all others had it a lot worse than you.  It is welcome news to us here so congratulations!

soonermom

It's a long process

From my experience as a caregiver, you won't be eating as much, all the things you want or as soon as you want but it will get better slowly over time.  I do know that the speech path after some post treatment issues my husband had, really stressed to him that it is not just swallowing that counts but swallowing something with what she called "heft" on a regualr basis as well.  She encouraged him to try to move beyond liquids and blended foods as soon as possible.  This was after a pretty extensive evaluation showing he could do that safely.  We have learned that the lack of saliva plays a huge role in swallowing issues long term.  If you still have active saliva production, that I think will be great for you in the future.  Best wishes and sounds like you are making good progress and have avoided a lot of unpleasant issues.  We are still finding maintaining his weight a challenge almost 6 months post-treatment.  

Lady54

Similar experience

OKC,

I had a similar experience. I, too, was spitting out mucus post-treatment and went through a roll of paper towels a day, and woke up every hour through the night feeling like I was suffocating from the mucus that collected at the back of my throat.  Lots of retching it up during that time. Three weeks post-treatment the mucus suddenly stopped and the dry mouth started. I was then waking every hour to drink water, but from this forum have learned about using Xylimelts and they’ve helped tremendously. I’m now waking up only every two or three hours to sip water.  I never lost my sense of taste (it just got unbearably stronger) but it returned to pretty much normal five weeks post-treatment.  At about that same time, my throat became sore when eating and is still sore. It eases about an hour after eating.  I’m now ten weeks post-treatment and am only able to eat oatmeal with lots of milk, lukewarm smooth soups, custard, soft-boiled eggs, and flat noodles with lots of butter, but I’m thankful I can eat at least those foods and have had the feeding tube removed.  My biggest complaints are the sore throat, mouth sores and dry mouth.  My energy levels are back to normal, have returned to the gym and I feel terrific.

 I hope this helps you see that you’re not alone in dealing with your side effects and that things will improve with a little time.

Andy13460

Congrats

I was wondering how you did coming out the other end Im 15 weeks tomorrow all is pretty much normal a few aches and a bit of mucus. Taste 95% back to normal, saliva about 80% I think my red blood cells are down a bit as Im not running as fast but Im up to 50 miles a week. Ive taken my weight back to my pre treatment racing weight of 135 lbs I was 152 at the start of treatment.

It started improving quickly after the initial 3 weeks I was still on the shakes till week 4 (2 shakes the rest food) I was back to work full time at 5 weeks.  I run my first marathon of the year 2nd week in November!!!

Teeth are a lot more sensative Ive started using different toothpaste for that