Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

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Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by judysellsnaples on Fri Dec 26, 2008 12:00 AM

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What time frame can one expect to have "latent" side effects of radiation.  I had 40 treatments to neck, and base of tongue.  I have continuous pain inside my throat and on the exterior of my throat where neck dissection was done--40 lymph nodes removed.

I am 4 years out now with a continous "good bill of health" but they believe the pain is a latent side effect--I have had it from day one. Lyrica helps but has anyone had "latent: problems from the radiation?  If so, when?  You longer than I am radiation patients--please tell me your stories.  Am I to figure this will get worse over time? 

Thank you all.  Judy and Lou

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by OhioGolfer on Fri Dec 26, 2008 12:00 AM

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Sorry I am not further out than you, but your post hit a cord with me, so wanted to chime in.  I am coming up on two years post diagnosis, and the fibrosis and related issues with neck and shoulders is getting worse, not better.  I am told it is a combination of the nerve damage done during the neck dissection (SAN apparently takes a beating even when it is spared) and the radiation fibrosis.

I have not experienced the sore throat  internally, but the neck itself is tight and painful to the touch, particularly along the SCM and the posterior aspects.  Like you, I had BOT treatment.  39 IMRT, bilateral MRND with SAN, SCM and IJV spared.  Cisplatin weekly for the 8 weeks of radiation. 

I am about to start on a physical therapy program to see if that helps, but will be anxious to see what other replies you get.

 

 

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by judysellsnaples on Sat Dec 27, 2008 12:00 AM

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On 12/26/2008 judysellsnaples wrote:

What time frame can one expect to have "latent" side effects of radiation.  I had 40 treatments to neck, and base of tongue.  I have continuous pain inside my throat and on the exterior of my throat where neck dissection was done--40 lymph nodes removed.

I am 4 years out now with a continous "good bill of health" but they believe the pain is a latent side effect--I have had it from day one. Lyrica helps but has anyone had "latent: problems from the radiation?  If so, when?  You longer than I am radiation patients--please tell me your stories.  Am I to figure this will get worse over time? 

Thank you all.  Judy and Lou


 

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by judysellsnaples on Sat Dec 27, 2008 12:00 AM

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On 12/26/2008 OhioGolfer wrote:

Sorry I am not further out than you, but your post hit a cord with me, so wanted to chime in.  I am coming up on two years post diagnosis, and the fibrosis and related issues with neck and shoulders is getting worse, not better.  I am told it is a combination of the nerve damage done during the neck dissection (SAN apparently takes a beating even when it is spared) and the radiation fibrosis.

I have not experienced the sore throat  internally, but the neck itself is tight and painful to the touch, particularly along the SCM and the posterior aspects.  Like you, I had BOT treatment.  39 IMRT, bilateral MRND with SAN, SCM and IJV spared.  Cisplatin weekly for the 8 weeks of radiation. 

I am about to start on a physical therapy program to see if that helps, but will be anxious to see what other replies you get.

 

 

Thank you for your message.  It always makes me feel better reading someone else is having the same symptoms.  It loooks like you know more medical terms than I.  What is SAN?  BOT ?  SCM? 

I did not have the chemo as they said my body could not have taken it.  I just found this--check it out  Pentoxifylline --a new med.  I am not taking any pain meds but I did recently start to take Lyrica.  It took me from a 8 level of pain (24 hrs a day) to a 2.  Life saving.  I don't know how long I can take this med but hopefully long term. 

I am having a BIG issue now with shoulder dropping and rotator cuff issues due to the massive amounts of muscle and tissue they took from my neck and shoulder.  I do not know if there is a reconstruction that can be done or not.  I try and wear a sling but it is a pain too.  Sounds like you may be having an issue here too?  I have done the PT and also accupuncture---to no relief. 

I look forward to more responses and hearing back from you!  Lou and Judy  (Lou is the one with the cancer issues)  Judy and Lou

 

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by pcn17 on Sat Dec 27, 2008 12:00 AM

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Judy & Lou!

I am so glad to hear someone with these same symptoms as I. So sorry to hear the pain, but do know it does hurt, a lot!

2 1/2 years out, left neck disection, 11 lymphnodes taken, 2 positive, with primary Left Tonsil.

I have been tight to the neck since day 1. Very sensitive to touch as well.  I have a great bill of health on the check ups, but always in pain. Was referred to Pain Management Clinic,  I am currently on Hydro & Soma.  I don't take as much pain med & muscle relaxant as I should per the doc, the Hydro does help the pain, but gives me a lot of energy, so I take it 2-3 times a day as opposed to the 4-6.  The soma helps but gets me drowsy, so only take 1/2 at night.  I work full time, so don't want to be drowsy during the day, Sounds like the Lyrica has helped you tremendously.  I've had 6-7 injections to the neck from the pain management, hurt like hell and did not do much for me.  Sometimes when I eat something difficult, the neck really gets tight on me, don't know why it happens during this time.  I do stretching excersizes but don't know if this will ever get better.

When I ride in the car as a passenger, when the driver presses the gas and I'm not looking, just the force of the car hurts my neck a lot.  I would like to do massage therapy but to scared to let anyone touch or rub that area.  It is so hard to explain all this to someone who does not understand this situation.  My husband has been my wonderful caregiver, but does not think being on pain medicine like this is such a good idea.  Worries I'm going to turn into some drug addict, but I don't know what else to do or who to go see.

I will be reading these post and hope a releif is in site for you as well as others.

God Bless you both & thank God we are here to keep on beating this disease!

Patricia

 

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by judysellsnaples on Sun Dec 28, 2008 12:00 AM

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On 12/27/2008 pcn17 wrote:

Judy & Lou!

I am so glad to hear someone with these same symptoms as I. So sorry to hear the pain, but do know it does hurt, a lot!

2 1/2 years out, left neck disection, 11 lymphnodes taken, 2 positive, with primary Left Tonsil.

I have been tight to the neck since day 1. Very sensitive to touch as well.  I have a great bill of health on the check ups, but always in pain. Was referred to Pain Management Clinic,  I am currently on Hydro & Soma.  I don't take as much pain med & muscle relaxant as I should per the doc, the Hydro does help the pain, but gives me a lot of energy, so I take it 2-3 times a day as opposed to the 4-6.  The soma helps but gets me drowsy, so only take 1/2 at night.  I work full time, so don't want to be drowsy during the day, Sounds like the Lyrica has helped you tremendously.  I've had 6-7 injections to the neck from the pain management, hurt like hell and did not do much for me.  Sometimes when I eat something difficult, the neck really gets tight on me, don't know why it happens during this time.  I do stretching excersizes but don't know if this will ever get better.

When I ride in the car as a passenger, when the driver presses the gas and I'm not looking, just the force of the car hurts my neck a lot.  I would like to do massage therapy but to scared to let anyone touch or rub that area.  It is so hard to explain all this to someone who does not understand this situation.  My husband has been my wonderful caregiver, but does not think being on pain medicine like this is such a good idea.  Worries I'm going to turn into some drug addict, but I don't know what else to do or who to go see.

I will be reading these post and hope a releif is in site for you as well as others.

God Bless you both & thank God we are here to keep on beating this disease!

Patricia

 


Thank you so much Patricia.  If it makes you feel any better, at 2 1/2 yrs out, when the car accerated, it hurt Lou's neck due to tightness.  It doesn't now.  Stopped at about 3 yr. mark. 

Maybe you ought to try the Lyrica as it is not a narcotic but a nerve stopping thing--Neurontin works as well but appears to have more side effects.  Lou was dizzy the first 4-5 days of the Lyrica but now can't live without it.  He is happier too due to the lessened pain. 

Lou does the stretching exercises as well as a door pulley system to keep his shoulder and arm stretched due to the dropping of the shoulder. 

I hope others continue to reply on this topic.  It helps Lou to hear about others and that he is not alone.  Judy and Lou

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by Zotos on Mon Dec 29, 2008 12:00 AM

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On 12/26/2008 judysellsnaples wrote:

What time frame can one expect to have "latent" side effects of radiation.  I had 40 treatments to neck, and base of tongue.  I have continuous pain inside my throat and on the exterior of my throat where neck dissection was done--40 lymph nodes removed.

I am 4 years out now with a continous "good bill of health" but they believe the pain is a latent side effect--I have had it from day one. Lyrica helps but has anyone had "latent: problems from the radiation?  If so, when?  You longer than I am radiation patients--please tell me your stories.  Am I to figure this will get worse over time? 

Thank you all.  Judy and Lou


 

Hi, I also had a neck diession and 35 treatments of radiation It 5 yrs. now since, I have no taste buds, no saliva , and I have a Lot of deep soreness all around the neck area,Ive also have a good bill of health, but have terible dry mouth, and trouble swallowing.Ive changed my diet to make sure everything I eat is ver wet, and I drink more water and Tea,then ever before, Plus Im always trying different massage thereapies and heat and moist pressure on the sore neck area. Habg in there keep a positive attitude,and God Bless...Joe t

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by pcn17 on Mon Dec 29, 2008 12:00 AM

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Judy, thanks so much for answering.  I hope you didn't think I meant I  was happy to hear about Lou, because I certainly did not mean to come across so strong, please forgive if it did!  Sometimes I think and the fingers are not up with the brain here.  It felt good to know "I am not alone". And am not going crazy, or think it's in my head.   I read these post, don't answer too much, but definately do read.  It is so hard for others who don't know about our symptoms understand.  Sometimes I talk to my husband, and hate to just complain about my ailments from all of this.  Or, who wants to keep thinking of these side effects, I wish for an hour, 2 hours, a day....I could let this stuff go.  It's uncomfortable, its' bothersome, and I'm sure others wonder sometimes, why I look??? why I make noises??? why I can't eat certain things?? why I add water to almost everything?????

But I am so glad to be here, especially for my little grandchildren.  I see God is not ready for me yet.

I called my PCP today left a message with the nurse regarding Lyrica, she called back, him saying I need to speak to my pain management doctor, and mentioned this medication was in form orthopedic in nature.  That threw me off, so I wonder if she said anything.  When I told her I wanted to try to get some form of other relief instead of those Hydro pills, thought she would understand.  I told her it was my neck disection area, no orthopedics involved that I know of.  Guess it was bad timing!  I do go see the Pain mgmt doctor on the 19th of Jan.  I wil mention this, I think they just want to keep you coming back and in lala land forever.  He does not even know what he is dealing with I think.  I'll keep trying,

Thank you Judy & thank Lou as well for all you insight.  Wanted to ask if Lou has had trouble with his jaws', teeth, hearing due to the mucous?  I have a lot of hearing loss in the right ear which all this stuff happened on the left side.  My jaw is always sore, especially under the ear area.  I take Musinex, transderm patch, nose wash for this mucous that forms daily.  But with the teeth just didn't hurt, I'm usually rubbing my bottom teeth with my finger nails back and forth for relief.  I'm trying to keep them healthy!  Your input is so greatly appreciated.  God bless you all and have a wonderful rest of the year!

Love & Hugs

Patricia

 

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by OhioGolfer on Wed Dec 31, 2008 12:00 AM

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Sorry for the medical jargon -- SCM = Sternocleidomastoid muscle, the large muscle that extends from your collarbone in front, up the sides of yor neck to the base of your skull.   SAN = Spinal Accessory Nerve, which is often removed during a radical neck dissection, but can easily be damaged during any neck dissection, especially any dissection that removes nodes from the area in the posterior triangle behind the SCM.  BOT -- Base of Tongue.  IJV = Internal Jugular Vein.

It sounds like you are having more acute problems than I am -- I don't have an appreciable shoulder droop, but do have pain and weakness.  I see my MO on the 14th, so am going to pursue PT with him then.  Next week I start yoga, so hopefuly that will help too.

RE: Latent side effects of Radiation? 4 yrs out --shall I expect worsening?

by sealady on Fri Jan 02, 2009 12:00 AM

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My husband had stageIV agressive H&N squamous cell. he was treated with Hyperbarics chamber immediately after the radiation and cisplatin treatments were over. Hyperbarics helped to heal the burn in his throat. He also went to a therapist in Marco Island who did a great job softening the tissue on his neck where the surgery and radiation had been performed. My husband had no saliva til I found a homeopathic called NUX MOSCHATA by Boiron (pick up at a health food store-they may need to order for you) This product is amazing. He also uses one for his postnasal drip- all health food stores carry it-use the 30c solution. It has been 6 years in remission and my husband still cough up scar tissue which we have nicknamed "the oysters". I do suggest you eat an organic diet or as close as possible. My husband eats no sugar since CANCER lives on sugar. We take CURCUMIN to kill off cancells ...you can get it thru www.LEF.com .LEF even has a cancer protocol to follow. check it out! Best of luck ...enjoy every moment of life you are granted. By any chance did your boyfriend serve in Vietnam? my husband got his cancer from exposure to Agent Orange.
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