I guess this one has hit me by complete suprise--I've got a patch of missing hair now by the base of my skull (in the neck area). They failed to mention this as a side effect and it pisses me off.

Does this hair grow back after radiation is complete?

I noticed my beard hair has stopped growing on my neck--this they said would happen, but not on my scalp.

Also, my mouth is one giant canker sore, eating and swallowing and drinking are damn HARD to do, even with painkillers, magic mouthwash, etc. It seeem like I only have a tight window of opportunity to eat and drink when it isn't so damn uncomfortable.


Waking up 10x in the middle of the night to spit out grotesque hockers is no picnic either.

I hope radiotherapy is worth it, because it sure is extracting a price from me right now.

Sorry to vent, but this is not a very merry Christmas for me.

Oscar

I had hair fall out on the back of my neck also. It just started growing back in good about a month ago. As far as the waking up thing to spit get used to it for awhile. It was with me until about 3 weeks after rad ended. It started easing up then and one day I noticed it was gone but the dsaliva hasnt returned to what it used to be as of yet and probably wont but Im hoping it will get better.

Billy

I have had the thick mucus problem since day 1 and I had no radiation.. Must be from where they took nodes out. I see that frequently in the forums.

I had quite a large patch of hair at the back of my hair fall out. I was pissed too because I had no idea the radiation field was that large(halfway up the back of my head). They said it could be permanent, or when it did come in would take approx. 8 months to grow back. The reality: It began to grow back 2 months post TX, and there is now 3" of growth. Are you taking robitussin for the mucus?? I had problems sleeping so I took ativan at night. I also slept with my head elavated to alleviate acid reflux and the gagging mucus. Oscar, things WILL get better. It's hard to see it right now, but this too shall pass. Stay hydrated and best of luck to you.

Oscar,

We loose the hair on the back of your neck because that's where the radiation exits and it normally will grow back in time. Mine, 16 mos post Tx is completely back. I lost all my wiskers from my chin down and except for a very few stragglers it hasn't come back which is a good thing. The wiskers on the sides on my face fell out somewhat and then came back much darker and now are just as before Tx.

On thing to mention since we're on the neck area is the Turkey Chin we all get from the rad. In the middle of your neck right below your chin will grow this thing akin to a rabbits dewlap. It will jiggle from side to side and make you look a few decades older. It will come in due time so don't be shocked. It's painless and it usually will get smaller but won't go away (believe me I have tried all conventional approaches) and we are advised not to remove it.

If your interested I have reposted a post I made after my Tx ended to tell newbies what to expect from the Tx. Here it is:

................................................
Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

.................................................

Hope this helps. Remember your entire Tx ordeal will ONLY last from about the 2nd to 3rd week of Tx until the 3rd to 4th week post Tx so usually about 7 weeks. It seems like more but your only put thru hell for a short period of time to save your life. When you finally walk out of that tunnel 3 weeks post Tx you really know it's OVER. Hang in there and before you know it you will be advising others to come after you.

Yes it will grow back. I completed treatments 2 months ago, and my hair is just starting to grow back. Irnically I am still loosing hair as well. I have almost lost all my hair, and it is painful. I wear a hat. I know how you feel about the ###3 waking up to spit. There is hope. It will stop in time. It stopped for me about a month after I stopped treament. I still can not eat very much, and it is very hard to bear. It is worth stayig alive and I know it is very hard. Be positive. Christmas was hard for me as well. It helped me to make sure my kids had a good christmas.

Oscar:

Hang in there, it does get easier. David's post pretty much sums it up what to expect. Going thru this during the holidays makes it even worse.

Im 3 months post radiation and chemo. I kept my hair all but the patch you described. So far I dont have any regrowth there yet.

The most important thing is to keep your nutrition up. Thats what makes you heal. I struggle with this on a daily basis. Get something for the mucous and drink lots of water. I know its very difficult right now but it really will get easier.

The hair loss at the base of the skull may be a surprise (exit radiation), but as many have said it is not likely to be permanent. Depending on your radiation schedule/area you may even get your beard or at least some of it back.... but it will take time and may look funny and even less grey. The radiation damage to your skin/neck also depend on the radiation dosage you get on your skin and how sensitive you are. In my case this has not been an issue; once the radiation stopped the red went away and other than a lack of tone the skin seems normal enough.
My mustache came back Charlie Chaplin style... to my great dismay. Given some time it has now filled in and my initial resolve to do something about it was not necessary (and would have been premature). The take home message is all of this needs time and you must be patient (which is easily said).
M

I too lost a great deal of hair at the base of my skull. It took about four months after radiation ended but it did all grow back

That was the only place I had any hair loss. Just now, about 5.5 months out, it is starting to grow back out. Nothing major, and only my barber really commented on it at all.

I lost the hair on the back of my head at the base of my skull, but it grew back like it was never gone. The nasty mucus will decrease, too. Keep hydrated and be patient. Radiation and its effects are no picnic.

My son also lost hair at two exit points at the back of his neck and when it grew back it came in darker but now his hair is just like before. At the time, I offered to let him borrow my eyebrow pencil but he didn't go for it.

LOL Anne-Marie,, that made me laugh. Glad hair might come back darker, Maybe the grey will disappear.