Newbie

ricksmithgolfer said:

support

I have my wife of 44 years to help me thru this. And yes, my mind is traveling at Warp speed right now. Just got my appoitment for Monday to get my Mask fitted and what ever else they do that day. Thanks for your reply.

Hi golfer - Bebo is right: it's good to understand the possible side effects, but you won't experience all of them.  In April my husband  (of 40 mostly blissful years) finished radiation and chemo for SCC HPV+ tongue cancer which had spread to his neck.  I found this site and did the reading and research, then kind of doled it out to him as things came up. Key advice starting out is to drink loads ofwater and do whatever swallow exerrcises they might suggest.  Read the superthread for product tips like magic mouthwash and aquaphor lotion and liquid supplements. If a feeding PEG Iis suggested, It's not the end of the world and can be a big help. We are now 3 months post treatment and things do improve slowly but surely.  Take care.  You (and your wife) can do this.

dalaitom said:

My situation was very simliar

My situation was very simliar to yours. It was planned for me to get 35 rads and 3 chemo also. I had a rough time after the 2nd chemo and will not be getting the 3rd due to the fear that the 3rd chemo would damage my kidneys. If I had it to do over, I think I would have asked for the weekly chemo. You must be in pretty good shape for them to suggest the 3 chemos as usually anyone the least bit frail will get the weekly.

I find that listening to the clicks and thumps made by the the radiation machine and then counting the seconds until it ends helped. That way I got to where I knew how long it took and when it would be over as I lay there. If your radiation techs are as good as mine, they'll do everything possible to make you comfortable and they are always very quck to get in there and get the mask off once the treatment is over.

Good luck. You can do this.

I was very active at diagnosis and was prescribed weekly cisplatin. I was told that the larger dose/3 times was for patients who lived long distances from the treatment center, to lessen their travel. But my kidneys didn’t like the cisplatin, and I was changed to a 40% dose every other week. The reduced dose concerned me but at 2.5 years I was NED. 

ricksmithgolfer said:

Mask

Went in for my Mask making today. I was so nerveous and scared I could not believe it.  After taking 1 1-2 mg of Activin I sailed right thru the procedure. All that freten and stuin for nothing. I had really good medical staff helping me out, and my beautiful wife of 44 years rubbing my leg for me to help calm me down.

Rick, 

Glad to hear you got thru today. Great to have support with you as well. You can do this.

My Best to You and Everyone Here

ricksmithgolfer said:

Mask

Went in for my Mask making today. I was so nerveous and scared I could not believe it.  After taking 1 1-2 mg of Activin I sailed right thru the procedure. All that freten and stuin for nothing. I had really good medical staff helping me out, and my beautiful wife of 44 years rubbing my leg for me to help calm me down.

That after the first or 2nd treatment on the table that the radiation experience isn't really too much to get worked up about.  You'll get to know your technicians and they'll chit chat with you to get you to relax.  After a time or two you'll just lay there a stare off into space as this giant machine moves around you.  For me, I'd go in, take my shirt off, put my mouth pieces in, lay on the table, they'd put the mask on and line me up.  Then they'd leave and push the magic yellow biohazard button (I always envisioned it looks like a big yellow button with a nuclear symbol on it) and it would start moving around.  10 minutes later they'd come crusing back in, take the mask off and off I'd go.

You'll do fine.  As you said, it's extremely curable so just suffer through and get it over with!  There is a light at the end of the dark crappy tunnel.

Brandon

Sorry you’ve found yourself here, but just know it’s simply a slight speed bump for most. I am now one year since treatment started (base of tongue, HPV+, stage 3). I had the same treatment you mentioned and within weeks of treatment ending I was back to 100% pre-treatment condition with only slightly less saliva. You’ll make it, just keep a positive attitude and keep your eye on the prize.

Didn't know about the reclassification.  My wife and I disagreed on whether I was II or III or IV (T3, N1, M0)  I always knew I was a II, glad medicine finally agreed.  The next 8 - 10 weeks will be tough, but your odds are very good (you will see a range of numbers from the 80% to +95%.  Best evidence is those are made up on the fly, the reality is your odds are pretty good).  Eat now, you will lose weight, even if they do a tube.   

I am 65, did 35 rad/6 carbol-taxol.  The effects of treatment tend to be backend loaded.  The first two weeks I was wondering when the sucky part started.  Weeks 5, 6, and 7 were in a wheelchair on oxygen, but it was from side effects (embolisms).  Get a couple of the forehead reading digital thermometers, do a couple of readings a day.  Also, your wife should have a notebook in which she records all vitals, all names and phone numbers.  She is now in charge, including doing the driving.    Mine hung a loud soccer referee whistle on me, it made her feel better.  I bounched back very quickly when treatment ended. Yes, your taste will come back, at least partially, but it takes its own time.

  Look in to portable phlemgh suction pumps.  Your med team should be able to give you a prescription for a rental.  Know that the infusion center where you get chemo also probably does saline drip.  I ended up getting saline every day from week 3 onward.  It helped a lot.  It also helps your nurses keep a watch on you, which literally saved my life when the side effects kicked in.  This is a very good site for any questions.  Your wife is also very welcome, she will probably be wondering how to get calories in to you.

At 18 months post my ENT just said I'm still clean, see him again in 4 months.  I feel very good, lead a normal life with new lower weight, and most old bad habits.   I still see continuing small improvement on things like taste, dry mouth, so never give up hope.

Rick, similar situation for me 5 years ago and today I'm doing great and back to as close to normal as possible.       The treatment is rough, the raditiation was really tough but my chemo was not too bad.   I had Erbitux vs Cisplatin, and many of us on this site had Erbitux as well.   the side effects are much more tolerable (bad skin rash/acne was the side effect i had) and much easier to deal with.

I asked my oncologist a few years ago why Erbitux vs Cisplatin and he said he thought Erbitux would work well for me and that's what he went with.     I would definitely ask the question for sure.

Mine started in my right tonsil as well and I did not have a neck dissection as they said my cancer was wrapped around so many critical things in the neck they felt that it was too risky and felt the chemo and radiation would take care of it.  So far so good.

Good luck!