Hi All,

I have the following lingering effects, 7 months post IMRT, 10 months post op:

Physical:

--Very very dry mouth while sleeping. Need water to hydrate at night.
--Difficult to swallow meats--need to wash down with water. Pork and steak are the worst.
--Saliva is generally good, but nothing like the old days.
--Taste comes and goes--fruits taste weird, especially apples (which I used to love). In general, it is about 60% back, I would guess.
--No sweat glands on my neck.
--Tingly sensation in butt/legs when lower chin to chest.
--Neck is tight, sore when arising in morning, sore when I stretch it.
--Numb neck, feeling is back to maybe 30%.
--Skin texture is different on treated side...it's thinner and less elastic...looks like prematurely aged. Also in chin area. Skin has a permanent tan also.
--No neck whiskers at all.
--Hair on back of head is returning, but is different from other hair (soft and whispy).
--Neck scar looks pretty good, as the skilled surgeon cut in a natural wrinkle.
--Seems like my gums are looser.
--Seems like my hearing has been affected--I'm going to get this checked out.

All in all, not too bad and manageable. I'm thankful that I have plenty of energy and am able to do all of the things I used to be able to do physically. I guess the bad part is that basically my tissue DNA has been damaged in the treated areas and there's not much you can do except live with it--it's not going away anytime soon.

Mentally:

Generally, if I don't think about it, I'm fine. But, there's always the 3 month followups that force me to revisit the whole nightmare again. This is equivalent to watching a car wreck in which you were injured on video, again an again, when all you want to do is move on. That's the tough part. But the toughest is thinking about the possibility of another lump in my neck, another surgery, and God forbid more radiation (if that's even possible). And the need to do google searches for "tonsil cancer recurrence" and rereading the same articles and analyzing the statistics again and again.

I'm a Stage IV survivor, with a good prognosis. My primary tumor was small (T1), I had only one affected node (greater that 3 cm), and very importantly, no extracapsular spread (ECS) which spared me chemotherapy. All prognostic indicators for me are up. But I can't escape that I was a Stage IV...i.e. an advanced case due to the spread to the lymph nodes. Obviously, this is something I need to work out within myself and be confident in the treament I received as a...can I use this word...CURE. And CURE means that the evil sneaky diabolical thief in the night SCCA stays away forever.

So, I'm doing what I should do with my new life...so much for tipping a few back with the boys with a Crown Royal chaser. Those days are gone forever. Now, it's keeping healthy and strong for my family...I guess that's not such a bad option either.

My best to all of the other brave souls who share their minds and hearts on this board.

Regards,

Oscar

Oscar,

you still can expect significant improvements. With taste you have to try and try again all of a sudden something new is there.
Well, if sideburns are ever going to be in again I can definitely participate. These have come back within the last half year, thank you, thank you very much.
I have no neck issues but I did not have any type of ND, the other reason may be of the 13 (yes) different irradiation positions. (I was counting them every time....)

M

Oscar,

Congrats and yes the anticipation is one of the many things we have to put up with but I can tell you that time without incidences heals all of the mental aspects of this cancer.

I was also a Stage IV due solely to the nodal involvement so hang in there and start to reclaim your life. BTW I use to enjoy an occasional beer and I also thought that my drinking days were over but since my taste came back 16 months post Tx I still find that I can enjoy an occasional beer and it tastes just like it did pre Tx only I get a buzz now after only 1 so I'm in the "cheap Date" category.

I'm bout the same time away from treatment as you and have many of the same problems.

I've found some dry mouth relief using the Biotene Oragel product at night before retiring. Have also been trying to teach myself to sleep with my mouth closed. I still keep some water at bedside for emergencies.

Try milk instead of water with your meals. I found it does a better job of coating than water. Some foods just don't work for me yet. Pork is one. Gravey or a sauce does help it go down.

Fruits taste odd to me too.

I can taste sugar, but have a limited sense of salty and bitter.

I'd say my biggest issue is that I have to chew so thoroughly now that I get tired of eating, especially with company.

Stay on top of the dental stuff. If you're not seeing a dentist with an oncology background it would be a good idea to do so.