Have my 'swallowing test' tomorrow (along with catscans) so should find out what's what. Also have scehduled visit with ENT on next day. So next couple days should prove VERY interesting and hopefully productive as far as the recent swallowing issues go....not to mention the results of the catscans.

YEP...very interesting couple days coming up.

Warren...you hang in there. It's almost over!!!

thx gary. good luck tommorrow

and thx gail on the color regarding swallowing. i now definitely plan to get tested post treatment no matter how i am doing

So I am officially done with my radiation treatment and it sure feels great to say so. Friday was my 30th and final treatment. It went much faster than I thought it would go. I realize I'm far from done yet but still thrilled to have completed the treatments and know I won't have to go to Sloan as part of my daily routine anymore.

I want to thank everyone on the OCF who helped arm me with such amazing information and such support. I had decided to post a diary of my process after reading Gary's and appreciating how helpful his was for me. Thanks to Brian Hill of course, for making this all possible.

In summarizing my experience I would say so far I found it easier than I had expected based on what I've read on this site and others experiences. No question that everyone has a unique experiene dealing with radiation and its side effects. I was able to work throughout my entire treatment process and glad I did. I am taking this week off to recover and excited I won't have to travel to new york city everyday as I have been doing for work and treatment. I know this week is supposed to be the toughest but so far its been about same as the last few.

Before I review my side effects thought it would be helpful to remind everyone my exact treatment. In order to treat a recurrence of SCC to left lateral border of my tongue (first primary 4 years ago) i was given 30 doses of radiation at 5 angles toward my tongue, stronger dosage on the left side where both tumors were, one angled straight at midle of tongue and 2 angled at right side of tongue. Because both of my primaries were stage 1 in terms of size and i had a neck disection confirming no nodal involvement at time of original tumor and this recent tumor was small and removed with decent margins and i had a clean pet/ct scan it was decided i did not need my neck radiates at all given minimal likelihood of nodal involvement. Goal of radiation was to really get at my entire toungue to make sure there were no micrscopic cancer cells floating around.

As far as side effects went, I had excess saliva for weeks 2 and 3 then went back down a bit. Never had major issues with mucous, just enough that it took me a while in shower to clear myself out in morning. I started losing some taste 3-4 weeks into process but now my taste is just neutral and in fact i can taste chocalate, coffe and vanilla. I've been able to eat a soft diet throughout and haven't lost any weight. Fatigue has yet to be much of an issue. Did get nauseous a few times and that was definitely unpleasant but got drugs to take care of that.

Mouth sores have been my biggest issue and they really started to hurt the last 2 weeks of treatment and still do. Had a sore throat for a couple of days that just went away. Patches and oxycodone and lydocaine rinses have really helped and I have it pretty well under control. Constipation is my latest issue and i'm doing all the normal stuff to mitigate that. Still having issues.

All in all I think it went great. I listened to everyone's advice and went in with a positive attitude and set mini-goals for myself along the way. Best thing i did for myself is avoided being horizontal as much as possible. Going to work helped alot. So did having such a localized treatment with no chemo. I drank tons of water and other fluids.

To those yet to go through this process know that its tough but very doable. the rewards far outweigh the temporary quality of life issues.

Now I must deal with what I think will be my most difficult challenge yet. Making the most of this new lease on life i am lucky enough to have received. I am 32 and the proud father of 2 little girls (age 2.5 and 1 yr old) and proud husband of one amazing woman. My career is just taking off and in the midst all of this I just survived cancer for the second time in my young life. I must learn from this experience just how precious my life is and become that much better of a father, husband, son, friend, employee (hopefully partner soon), etc. I must constantly remind myself not to sweat the small stuff and enjoy life for what it is. I know I am going to be a better person having gone through this experience and will look back at my life one day and appreciate that this experience was meant to be and helped shape me into the person who was able to reach his fullest potential in all important aspects of life.

Everything happens for a reason and while I'm not deeply religious I'm a believer that life has a way of balancing itself out over time. I know in the end I will have been better off having had to deal with this. (hard to think that at this specific moment nut i just know its the case just like i knew i was going to breeze through radiation)

Thanks again to all my new OCF friends and I will be in touch soon. My follow-up entails meeting once every 2 months with my surgeon and once every 2 months ( alternating) with my radiation oncologist such that one of them will be doing an oral exam each month for at least the next year. I need to research what scans I should expect and insist on getting as well.

PS. thanks to all my doctors and i look forward to working with those on this forum in pursuing oral cancer issues. theres alot more for me to learn.

Chad

Well said, Chad[it's nice to know your 1st ? name}With that attitude you will be a very sucessful husband and father and will excel at whatever goals you set for yourself. I hope one of those goals is to contribute and give back to this forum in whatever way you can. Way to Go. Amy

Yo Chad:

Congrats on finishing treatments. It is amazing how fast they go, isn't it? Making that trip...day in and day out....is sort of a pain though. Imagine you're really glad that part is over. I know I was glad I didn't have to make that 60 mile round trip 10 times a week, every other week for 5 weeks just to lay on a table for 15-20 minutes any more.

It also amazes me how different people are affected by all this as far as side effects go. I had zero pain and zero nausea but did have fatigue and swallowing problems. And you had mostly the complete opposite.

But, the one thing I think we BOTH had going in was the positive attitude which has brought us this far.

Now is the time for you to get a bit of rest and let the body catch up.

Chad,
Is sounds as if you have had a relatively easy time compared to so many of us on this forum. I hope that things keep going just as well in your recovery and that you will one day enjoy giving those precious girls away at their weddings and be there for the birth of their children as well.

Keep up the good work.

Danny G.

Update - 10 days since last treatment. This las week has been by far my worst week but think i reached bottom. biggest issues are side efects of the pain meds. the severe constipation has really messed up my system causing bloating, nausea, sweats and just general horrible feeling. was able to go finally and that helped but still constantly clogged up and i tried lowering pain med dosage but underlying pain still too much. now its a balancing act of taking laxatives to keep things moving but not taking too much which makes you feel ad too. i had been able to eat throughout and only in last week hae i gone to liquid diet and not because of swallowing or mouth pain probs but because am so constipated i ve no desire to eat and get more bloated, guess i just have to wait it out untl i can ge off these awul narcotics

The Hopkins oncology nurses have the following advice for constipation associated with pain medications: "Smooth Move" herbal tea (based on Senna, they say more effective and gentler than Senakot -- though this can also be used) PLUS (and this is important) the stool softener Colace. We found the tea at lots of different health food stores including GNC. It has a mild minty flavor and is very tasty! It can be given by PEG. It is also important to drink drink drink!

If you go three days without "action" use a enema as bowel impaction can be a real problem (we heard of couple of folks getting this, needing "lavage" which was not very much fun, per their reports!)

It WILL get better, just hang in!

Gail

Yo Chad:

You still hanging in there??? Haven't heard from you in awhile???

I'm back. Doing well. Today is one month out from my last radiation treatment. Went to work this week after 3 weeks off. prob 85% right now with only probs being a bit of fatigue (although that might just be from going back to working 10 hours a day), lack of taste, and a bit of mouth pain, although i just let my last patch wear out and didn't replace it so hopefully done with the heavy narcotics. was away from internet last week so didn't get a chance to post. hope everyone is well.

this site kept me so prepared for everything. thanks to all.

things i wish i did differently were using more patch and less oxycodone when pain peaked to avoid such severe constipation. using lactulose laxitive right away when i started heavy narcotics as opposed to waiting until it was too late.