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HELP-RADIATION QUESTIONS

danielsm
Posts: 3
Joined: Mar 2006

Hi, I will be starting radiation for Mucoepidermoid Carcinoma of the minor salivary glands, low grade. My question is all I seem to hear is how bad things can go from the radiation. Has anyone had things go good for them? Also how long has it been since the radiation, and did you have any cancer come back? Thanks!

tavz77
Posts: 10
Joined: Jul 2005

Hey there, good luck with the radiation. I had about 8 weeks of rad to the neck area for Tonsil cancer. I am about a year and a half out and the side effects that I am experiencing are stiffness in the neck and dry mouth. I keep water by myside 24-7 now, but the good thing is that I am still on this side of the grass...and I praise God for that...good luck and let us know how you are doing...
Rich Tavender

tiff1169's picture
tiff1169
Posts: 2
Joined: May 2006

I am experiencing extreme pain in my neck and the back of my head ... after 8 weeks of radiation / chemotherapy? And I'm really afraid that my cancer has come back now after 4 months! (my treatments ended January 23, 2006) Has anyone experienced the same thing that can maybe comfort me that these are really "residual side effects" from the treatments? As my Oncologist keeps telling me... He says I'm "Cancer free" based on a "full-body PET scan", which he says is the most extensive test they can do to see if I have re-occurring cancer or not??? Help??? someone.

TereB
Posts: 288
Joined: May 2003

Hi Danielsm,
I've had radiation so many times I think I glow in the dark! I've had radiation in the head, neck, spine and pelvis for tumors different from yours. Radiation in head/neck damaged my salivary gland. The first time I had radiation I thought it was horrible because it was new to me. It doesn't bother me much these days. Usual side effects for rad in head/neck/abdomen areas is nausea but there are medicines to help with that. You may lose appetite and cannot taste food (taste buds) but it will come back 2-3 months after you finish rad. You may feel tired and sleepy too. My salivary gland is damaged forever so I have dry mouth. You need to see dentist regularly and there are many things you can use for dry mouth such as toothpaste, rinses, gum, etc. Radiation in head area and dry mouth may affect your teeth so it is important to have your teeth cleaned regularly and have good oral hygiene. Your skin may darken in the radiation area, like a deep tan but it will go back to the normal color later. When I had rad in head and neck, I lost some hair, not terribly noticeable (I have a lot of hair.

The good thing for me is that I know all the side effects will go away little by little. Radiation has shrunk my tumors and encapsuled them, they are sort of dead. I've had no problems with the tumors that were radiated. I have several tumors on right hip and also radiation scar on bone there.

First radiation for tumor in head was in 1992, more or less. That tumor is still there, dead, no growth, no problems. Last radiation was July 2005 in pelvic area. This was a different type of radiation, it was STRT and I liked it a lot, better than the other kind, no nausea, pain caused by tumor disappeared in just two weeks, etc. I do not know if this type of radiation can be used for all types of tumors.
All the best,
TereB

JMD1960
Posts: 5
Joined: Apr 2006

danielsm: I'm a 46 year old male. I had a mass removed from my upper lip that was cancerous. It had also spread to one lymph node on the right of my neck, that node along with 17 others were removed. I've just finished all the dental prep,Deep cleanings, filling replacements, dental trays made and 3 extractions, OUCH! Now I am about to have my first of 30 radiation treaments to my upper lip and right side of my neck starting may 2. I to have read about the terrible side effects from head and neck radiation and one thing I have learned is, everyone is different. We all have different cancers in different areas. Some recieve high dose's and some recieve minimal dose's so the side effects will be different for each person. I have been told I will recieve a minimal dose and to expect dry mouth, soar throat, loss of facial hair, loss of taste, and I will be very tired. I have been told I will not feel any of these effects until my 3rd week of treatment. Doesn't sound like fun, but it's got to be done Hang in there and stay positive. Best wishes.

danielsm
Posts: 3
Joined: Mar 2006

Hi,I want to thank everyone for all their info. I'm seeing the doctor on May 2 to set up my radiation treatments. I'll let you know how things are going for me. Please keep me informed on how all of you are making out too. Thanks again. Marc

JMD1960
Posts: 5
Joined: Apr 2006

Well today was treatment number two. I go every day at 10:00am, it takes only 10 minutes. I don't feel any different so far. They said I wouldn't until my 3rd week. So far so good.

marlaj
Posts: 3
Joined: May 2006

Good luck JMD1960! My husband finished radiation and chemo 7 weeks ago, for tonsil cancer, which had spread to lymph nodes in his neck. He started to feel some side effects about the third week. He was tired, and developed some sores in his mouth. But you will get through it! He is still recovering, but doing much better. We are pulling for you...you sound like you have a good attitude and that is key to getting through your treatments.

JMD1960
Posts: 5
Joined: Apr 2006

Today was treatment number 26, only 9 left to go. I've lost some hair on the back of my head and on my face. I have a red mark on the treated area's, looks like a bad sunburn, feels like it to. I only have a minor soar throat so far which is great because I can still eat. Food is starting to taste less and less good each day. The fatigue is the worst side effect I'm having. I feel real tired every day now, oh and my mouth is dry as a a desert. I constantly drink water. Still it has not been as bad as I was expecting it to be.

jmb1148
Posts: 1
Joined: Mar 2005

will start rad/chemo wed for 7 weeks for nodes in neck and tumor in throat. really scared +would like to keep in touch with someone doing similar + compare notes. I am 56 f and live in PA. email me jmb1148@aol.com

marlaj
Posts: 3
Joined: May 2006

Let us know how you are doing, danielsm. My husband finished 7 weeks ago, and he is doing much better, but still recovering. He also had chemo, so his treatment was a bit more complicated than what yours sounds like. But the good news is that 7 weeks after finishing, he is much better. Just keep your eye on the finish line...you will get there!

tracy_csn
Posts: 15
Joined: Jul 2005

56 yr old male, tonsil cancer. Treatment finished 15 mos ago. No recurrence of cancer to date.
Short term side effects: throat pain, mucous, difficulty swallowing, major fatigue. But all of those side effects have gone away. Another very difficult effect was complete loss of taste; everything was sawdust or cardboard, couldn't eat anything... but I had a peg feeding tube and used it for months after treatment ended. Two different doctors recommended that I get the feeding tube as a contingency in case I could not eat after I got into treatment. I'm very glad I did have it. Even with the tube and ~3500 calories per day, I lost 35 lbs overall...
Long term effects: major pain in neck (but may be as much from neck surgery as from radiation), and dry mouth. I expect both to improve but continue to some degree for the rest of my life.

dragonlady1353
Posts: 1
Joined: Jun 2006

Hi; I'm glad to hear you are feeling better. I had radiation in 1990 and again in '94 so it was many years ago. I thought everything was fine. I had no paralysis (i had nerve cancer in the paratoid gland) and everything seem normal. About 6 years after the radiation i started to get a drooping in my face and eye. In the past years I've had so mush that I no longer have a smile, I bite my lip when I eat and have absolutely no function in that side of the face. I can't close my eye and have pain and itching all the time. I've been checked and rechecked. There is no return of cancer. They tell me it is scar tissue from the surgery and radiation and it is strangling the nerves and that it will continue to progress forever. They are going to try some sessions in a hyperbaric chamber because it may loosen some of the scar tissue or at least slow it down. The concerns are the closing a loss of use of my throat. So if noone else has been told.....the effects of radiation return. And they often go on forever. Its a sad thing but I think you should know what can happen.

Yofi
Posts: 1
Joined: Mar 2008

Hi there...I’m a 50-yr-old female, and I had seven weeks of radiation to my face/neck 5 years ago for tonsil cancer that spread to the neck. My biggest problem, I think, lay in the fact that the doctors didn't tell me what to expect as far as long-term side effects go. The radiation doctor (really a wonderful man, highly overworked) only told me that I could expect to have a moderate to severe dry mouth, and I should carry water with me wherever I go (which I don’t do all the time). Because I didn't realize there could be further side effects (i.e., pain, etc.), I was in a panic every time I developed a new pain or sensation in my mouth or neck. I’ve now come to realize that side effects can be ongoing, and can vary from person to person, or even vary in the same person from day to day.

Sometimes I feel absolutely normal - aside from dry mouth - and sometimes (like today) I get pain in the radiated area of my neck where the tissues were damaged from the radiation. It feels like a twisting/pressure sensation, and the feeling can be localized to the area where the tumor was, or it can sometimes run up my face, my jaw, and/or affect my ear on that side. The doctor did finally tell me (after a couple of years of my not knowing what this was) that the muscles and tissue will be sensitive in that area, and there can be some discomfort. He suggested taking painkillers if it bothered me too much, but other than that didn’t have more to offer. For the poster who was afraid that the cancer had returned, I’ll tell you that I went through that feeling many many times, simply because my body in that area felt so foreign to me after the radiation. The pain/pressure was not dissimilar to the sensation of ‘something’ being there, but it is actually the damaged tissue that is reacting. Another thing I find I have to deal with these days is oral thrush. Had two bouts of that (Nystatin helps to clear it up), but I believe thrush is highly connected to Candida overgrowth in the body...something I was dealing with for many years before ever having radiation. Oh, and I also underwent a round of chemo at the beginning of the treatment as well (optional treatment that they offered me)...but they decided to not go the other two rounds as it was aggravating the mouth sores I had. Apparently I had one of the worst cases of mouth sores they’d seen. And one other longterm side effect I have...my hearing has gone down considerably; I now need to get hearing aids (which I keep putting off...lol). However, that was an effect of the chemo if I remember correctly, and I already had slight hearing loss - inherited condition - so my hearing loss is probably worse than someone who has good hearing and goes through the treatment.

As far as shortterm side effects, when I underwent treatments I wound up with a dry mouth, extremely sore throat (more toward the end of the treatments though, it came on gradually), and enormous exhaustion. I also had a plethora of mouth ulcers that eventually prevented me from eating most solid foods - again more toward the end of the treatment - but all of that eventually went away. The height of the shortterm side effects hit me probably a week or two after treatments ended. To maintain my weight I made my own meals - liquid diet for a couple of months that consisted of fresh fruits and veggies blenderized and mixed with high protein energy drinks. I wound up only losing a couple of pounds throughout, which was fortunate, as I had initially lost almost 45 lbs of my 130-lb body weight before I had been diagnosed.

Dry mouth is something that is almost inevitable, although I was reading about some places where the doctors will perform ‘preventative’ measures to try and keep the patient from losing major salivary function...from deciding how to radiate around those glands (depending on the tumor location) to pre-treatment surgery to move a major salivary gland out of harm’s way - again, depending on tumor location, and perhaps some other factors as well. There is a drug(?) called pilocarpene that I recently read about as well, which is supposed to help many who suffer from dry mouth, and a mouth rinse that I cannot recall the name of right now; it is supposed to help relieve dry mouth symptoms quite well. (I’m at work, but when I can go home I can look it up and post it here if anyone is interested.) Chewing gum helps to stimulate the salivary glands, and a couple of products that are also not too bad are Oral Balance (a mouth gel) and Biotene mouthwash. I find Biotene to be very refreshing and soothing.

If I can think of anything else to share I’ll post again...and if anyone can suggest what they use to ease the longterm pain in the neck (which it literally is!) when it flares up, I’d love to have some suggestions. I find that regular painkillers don’t help me a whole lot. And while the pain isn’t terrible, it is distracting, and it would be nice to be able to erradicate it when it does show up.

Oh, and this is my first time here, so...hi everyone! :o)

Di

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