One side of radiation compared to both sides

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Hello question has anyone experienced having just one side that needed radiation and if so how were the side affects for you?  Second questions to the individuals that needed treatment on both sides how were side affects for you? I realize all are different but the common realm of things how did each cope? And this magic mouthwash I have been reading about where do I find it, and what’s the best product that you have used that helped. I read someone did his rinse right before treatment does that help? I also have floride trays from my dentist, anyone have issues with that? And not to be vain because I am not but has anyone lost their hair? And let’s face it we women like our hair...

What items in form of nutrition should I stock my home with?? I haven’t met with the nutritionist yet hope to this week. Also creams for neck etc.....

God Bless and thanks y’all for the help

Charlene ❤️

Comments

  • Steve1959
    Steve1959 Member Posts: 28 Member
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    Hi Charlene,

    Hi Charlene,

    I had a radical neck disection on the left side of my neck and my left chest was used to rebuild my neck (flap) wth 37 lympth nodes removed from my neck. I also had 30 radiation therapy treatments directed specifically on the left side of my neck. I managed to stay hydrated and a high level of nutritional intake by drinking lots of water, smoothies (with protien added), protien bars, etc. My tastebuds were greatly effected by the radiation and my throat was very sore. I did make it through this ordeal and I actually gained weight through my treatment. Never used any mouth wash, simply drank a lot of water to keep hydrated and mouth/throat wet. I also have floride trays for life, but, this is a minor inconvenience for the complex operation and treatment that I endured. My operation and radiation therapy was in July and September/October 2016 respectively. I still have dry mouth and will for the rest of my life as my major salivary gland (left side) was removed. Additionally, I have dry mouth, at times dificullty swallowing, sore throat, sore left jaw, numb neck and shoulder/arm (left side), tight and sore neck, and headaches at times. I take gabapentin to numb the nerve damage. All is manageable but the side effects appear to be for life. Better than the alternative if I didn't have the operation and radiation therapy. I am currently experiencing some swelling in my tonsils both left and right with the lefft side being silghtly larger than the right. I see the onconogist May 04, 2018 and I am hoping for the best.

     

    Take care Charlene.


    Steve

  • Charmit
    Charmit Member Posts: 87
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    Hi Steve

    Hi Steve

    Wow what a journey you had and I pray May 4 brings you good news!!! I have had a cyst removed and three nodes two affected and now a third according to the PET scan and both tonsils removed a month part from each other and the cancer was found in the left at the base they really had to dissect to find. The right lite up in the PET scan but thank god it was negative. So basicly three surgeries since March 1 and now treatments are underway on April 30. I’m not familiar with the terms but I’m sure I will be soon enough. Trying to eduate myself and hear stories of others who have dealt with this. Oh and mine was HPV positive woohoo 

    I have to say y’all made me feel ,ore calm then I felt in weeks and weeks....the doctors can say i will be good but it a tough road but hearing others who have walked the walk and are hear to talk that’s just the abso best feeling. The first radiation doc I spoke to scared Me to the point I was sobbing begging my mom to take me home. He basically said I will be begging for him to quit all his patients do but he won’t let me. I heard nothing after that I just wanted to run. Now I’m at Smilow Cancer Center For head and neck cancer at Yale. And I feel safe!!!

    Thanks for talking with me and hope we can talk some more!!

    Prayers to you for your May 4 visit 

  • OKCnative
    OKCnative Member Posts: 326 Member
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    I was radiated in three spots

    I was radiated in three spots (left, right neck and dead center of chin to hit the base of my tongue). 35 rads total, plus chemo.

    Like most people, I didn't experience any effects of the radiation until about week 5. If you're doing chemo it all just depends on the individual. Chemo didn't hit me very hard. I just slept a lot more than usual because I felt like i had a slight flu.

    My first side effects were a sore throat that eventually got very bad. Are you using a PEG tube (can't remember from your other thread). I didn't use a PEG tube and eventually had to consume liquids only for a couple of weeks.

    I survived on Boost VHC (order on Amazon). 530 calories in only 8 ounces. Tests pretty bad but it's only 8 swallows for me 4x a day.

    I also did the baking soda and salt gargling right before my radiation treatments and also used a disposable mouth swab to get all the gunk out prior to radiation each morning.

    I bulked up (put on about 20 pounds) prior to treatment and made sure to walk at least 3 miles EVERY DAY. You want to keep your body moving and good circulation. 

    Tons of water and calories are your friend at all times during treatment. Less of either and you're just making symptoms worse.

    Magic Mouthwash is a prescription and there are slightly different mixtures. It did not work for me because my tumor was at the base of my tongue and the Mouthwash doesn't go back that far. 

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    Options
    The side effects are gradual...

    Though I didn't have chemo so with that they may be accelerated somewhat.  You don't feel anything during radiation.  They zap you and you are done and you get up and walk out.  A week or two in you question whether it's doing anything...  Then 3-4 weeks in you notice that something is happening....then 5-6 weeks in you know that it's doing it's job.  A few weeks after you're done you wonder if you'll ever heal...  Then one day you wake up and notice that you feel a little better.  Before you know it, you're eating cheeseburgers and drinking beer.  My experience anyway.  Hope you experience the same!  I worked all through my treatments...hopefully you can do the same.  Keep busy, keep your mind off it.

     

    There was just a drug approved that helps reduce oral mucositis.  We actually trialed it in my cancer center and it just received breakthrough status from the FDA because the results were so good.  92% reduction in oral mucositis...  It's called Galera.  Ask your team about it!  It's an exciting new treatment...

     

    I experienced some sunburn type irritation toward the end of treatment on both sides of my neck.  Nothing to big.  Again, chemo can change how you are affected and I didn't have chemo.  I found that really thin sensitive skin lotions were the best for me...went on smooth.  A lot of people recommend Aquaphor but it is a really thick ointment (like vaseline) and while I'm sure it protects well it's heavy to put on.

     

    The salt/baking soda rinse was really helpful and the best thing I used.  Just do it all day long, every day...  I don't think there is any direct benefit to doing it right before your treatment...except that it probably does help to get any thick saliva and such out of your mouth and throat just before you get put in the mask and have to lay there for 10 minutes.  Drink tons of water.  Water is your friend and will help keep your tissues moist and heal.  I had magic mouthwash and used it once...it numbed me up...but I didn't like it so I never used it again.  I did have some protein shake thingys for some extra calories.  Otherwise I ate a ton of mash potatos and gravy.  Soft stuff that wasn't scratchy going down.

     

    I lost my beard on my neck up onto my chin.  It's mostly back but a little splotchy.  Didn't lose any hair on my head (that I noticed anyway).

     

    Didn't have any issues with the floride trays...dont' forget them for your treatments.  You'll continue to do them for the rest of your life as your teeth will be more susceptible to damage afterwards.  No big deal really.

     

    Good luck!

     

    Brandon

  • AlreadyOne
    AlreadyOne Member Posts: 9
    Options
    You got this!

    Hi Charmit, I was diagnosed with HPV right side blah, blah. They decided to radiate my left side as well but with a lower dose of radiation. As people have said, it is a gradual pain that gets worse as you go along. the first 10 treatments are not so bad but as time goes on you will feel nausiated, have a sore throat, sores on your tongue, mucus that is hard to get up and out of your mouth. Magic mouthwash is a perscription drug that your Dr. with perscribe for you. I was on morphine for pain, but would have like to have liquid CBD if it is available. I was also treated with Cisplatan once a week (chemo.). I did lose some of my hair but I think that may have been from the stress that my body was under. By week four I was not tasting a whole lot and was having difficulty with most foods. I found anything remotely flavourful would burn my sensitive mouth. Even gravey. I did have a tube put in and, I know it sounds awful, it really did save me when i was not able to drink enough liquid to stay hydrated. Eventually I did use it for ensure, boost, whatever. By the sixth and final week I was very uncomfortable. It got worse before getting better. The two weeks following my last treatment got pretty bad, but after that, just like magic, I began to feel a little better every day. What a relief to have the sores on my tongue and inside check heal up. It is a long slow process, but 15 months post, I can gulp water, eat spicy foods, drink beer and red wine and basically feel fine. I hope that you have people around you that will love and nurture you. Best of luck with all of it. You will get through it. You got this!

  • Jbrooks
    Jbrooks Member Posts: 43
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    Hi Charmit... I didn't have

    Hi Charmit... I didn't have rad's to one side but to both. I did manage to "get clipped" as the red nurse put it , to the back o my head on both sides.  Meaning...I lost hair!  Meaning... my hairline in the back is a lot higher up!  I am hoping it will grow back. I feel kinda naked now back there.  I am almost 3 months out from radiation and have my first ct scan in a couple weeks.  Wishing you the best...

  • Billie67
    Billie67 Member Posts: 898
    Options
    My tumor was on my R side but

    My tumor was on my R side but all of my drs agreed that I needed to do both sides and center of neck since my CA was vocal cords which is pretty centrally located.

    During treatment you feel nothing, just focus on your country jams!

    The magic mouthwash is by RX and they will gladly write you for some. Just ask so you have it in advance.  My dr gave me tons of aquaphor to keep my skin healthy. Towards the end and for a short time after treatment I used a RX cream. You can cross that bridge if you ever come to it.

    You can try and bulk up now before the 30th when you start treatment. That helps for some people. I’m thin by nature so I didn’t have any luck doing so. I ended up with a PEG but it doesn’t mean you will. Some do, some don’t. I feel like its almost an even split. 

    We all get fluoride trays. You will wear them during treatment, with no fluoride in them and then use the fluoride at night. 

    I found for me that during treatment, and pretty early on that food first lost its taste. Then it became terrible tasting! Like even water tasted disgusting BUT not everyone has that issue. Just preparing you so that if it does happen, its common and you don’t think something is wrong.

    My mouth is still dry and its been 5 years but I just never go anywhere without water or some other drink. I also chew a lot of gum which helps a ton. Xylamelts are really good too! 

    Bless your heart, I know that this is a difficult time for you. You will find the worrying about the unknown is worse than the treatment. I promise YOUVE GOT THIS! We wil all be here for you.

    My taste is pretty much back with the exception of any melon type fruit or pineapple. Still tastes very metallic and that is sad for me as I once couldn’t get enough of that! 

    Swallowing may be difficult and you may get some mouth sores, all of which is common but not a given. I got them but many don’t. There are remedies for that should you get them. 

    After treatment is all completed you will gradually get your strength back because during treatment you get very tired and just want to sleep a lot. DO IT!! Rest up when you can but also get out and at least walk around the block if you can, it helps a ton! 

    We are here for you! 

  • Billie67
    Billie67 Member Posts: 898
    Options
    Jbrooks said:

    Hi Charmit... I didn't have

    Hi Charmit... I didn't have rad's to one side but to both. I did manage to "get clipped" as the red nurse put it , to the back o my head on both sides.  Meaning...I lost hair!  Meaning... my hairline in the back is a lot higher up!  I am hoping it will grow back. I feel kinda naked now back there.  I am almost 3 months out from radiation and have my first ct scan in a couple weeks.  Wishing you the best...

    Clipped! I love that term! I

    Clipped! I love that term! I forgot about that part, yes I too was clipped. Us girls can hide it by letting our longer hair on top cover it. Guys, not so much. It does grow back I promise. Mine was super curly at first! So I had this super straight hair on top and super curly hair on the bottom, made a great conversation peice 

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    Options
    Eat.

    Eat while you can! Pack on some weight now, because you may need it in the future. As far as the hair, I was walking a round half bald and did not even know it. Someone ask me who cut my hair because the whole posterior scalp fell out.  I then proceeded to give my Chemo nurses heck for not telling me.  All in fun, because they will be come your best friends, advocates, call doctors and just flat out listen to you cry. Hydration and calories are the key. Take great care of you neck tissue and oral cavitiy. Good Luck and fight the fight.  I am a year and a half out and still am searching for my new normal. It's always an evolving process. 

  • Charmit
    Charmit Member Posts: 87
    Options
    OKCnative said:

    I was radiated in three spots

    I was radiated in three spots (left, right neck and dead center of chin to hit the base of my tongue). 35 rads total, plus chemo.

    Like most people, I didn't experience any effects of the radiation until about week 5. If you're doing chemo it all just depends on the individual. Chemo didn't hit me very hard. I just slept a lot more than usual because I felt like i had a slight flu.

    My first side effects were a sore throat that eventually got very bad. Are you using a PEG tube (can't remember from your other thread). I didn't use a PEG tube and eventually had to consume liquids only for a couple of weeks.

    I survived on Boost VHC (order on Amazon). 530 calories in only 8 ounces. Tests pretty bad but it's only 8 swallows for me 4x a day.

    I also did the baking soda and salt gargling right before my radiation treatments and also used a disposable mouth swab to get all the gunk out prior to radiation each morning.

    I bulked up (put on about 20 pounds) prior to treatment and made sure to walk at least 3 miles EVERY DAY. You want to keep your body moving and good circulation. 

    Tons of water and calories are your friend at all times during treatment. Less of either and you're just making symptoms worse.

    Magic Mouthwash is a prescription and there are slightly different mixtures. It did not work for me because my tumor was at the base of my tongue and the Mouthwash doesn't go back that far. 

    No PEG unless they deem i

    No PEG unless they deem i necessar. So I’m to going to try my best to avoid that. 

  • Charmit
    Charmit Member Posts: 87
    Options
    johnsonbl said:

    The side effects are gradual...

    Though I didn't have chemo so with that they may be accelerated somewhat.  You don't feel anything during radiation.  They zap you and you are done and you get up and walk out.  A week or two in you question whether it's doing anything...  Then 3-4 weeks in you notice that something is happening....then 5-6 weeks in you know that it's doing it's job.  A few weeks after you're done you wonder if you'll ever heal...  Then one day you wake up and notice that you feel a little better.  Before you know it, you're eating cheeseburgers and drinking beer.  My experience anyway.  Hope you experience the same!  I worked all through my treatments...hopefully you can do the same.  Keep busy, keep your mind off it.

     

    There was just a drug approved that helps reduce oral mucositis.  We actually trialed it in my cancer center and it just received breakthrough status from the FDA because the results were so good.  92% reduction in oral mucositis...  It's called Galera.  Ask your team about it!  It's an exciting new treatment...

     

    I experienced some sunburn type irritation toward the end of treatment on both sides of my neck.  Nothing to big.  Again, chemo can change how you are affected and I didn't have chemo.  I found that really thin sensitive skin lotions were the best for me...went on smooth.  A lot of people recommend Aquaphor but it is a really thick ointment (like vaseline) and while I'm sure it protects well it's heavy to put on.

     

    The salt/baking soda rinse was really helpful and the best thing I used.  Just do it all day long, every day...  I don't think there is any direct benefit to doing it right before your treatment...except that it probably does help to get any thick saliva and such out of your mouth and throat just before you get put in the mask and have to lay there for 10 minutes.  Drink tons of water.  Water is your friend and will help keep your tissues moist and heal.  I had magic mouthwash and used it once...it numbed me up...but I didn't like it so I never used it again.  I did have some protein shake thingys for some extra calories.  Otherwise I ate a ton of mash potatos and gravy.  Soft stuff that wasn't scratchy going down.

     

    I lost my beard on my neck up onto my chin.  It's mostly back but a little splotchy.  Didn't lose any hair on my head (that I noticed anyway).

     

    Didn't have any issues with the floride trays...dont' forget them for your treatments.  You'll continue to do them for the rest of your life as your teeth will be more susceptible to damage afterwards.  No big deal really.

     

    Good luck!

     

    Brandon

    Hi Brandon thanks for the

    Hi Brandon thanks for the words of wisdom. I’m hoping my treatment has no major issues, and I will surly ask about the medication Galera!! Also pray the 7 weeks go quick and no I took an,eave from work seeing I work in a daycare and all the germs told I can’t work. So home and all I do it think of what’s to come. Warm weather is coming so hope to be able to spend time outside. I spoke with the radiologist today and he seem confident I will manage well, I’m hoping he is correct cause my pain level is a negative zero. 

    ‘Nice talking with you and glad your well!!

    Charlene

  • Charmit
    Charmit Member Posts: 87
    Options

    You got this!

    Hi Charmit, I was diagnosed with HPV right side blah, blah. They decided to radiate my left side as well but with a lower dose of radiation. As people have said, it is a gradual pain that gets worse as you go along. the first 10 treatments are not so bad but as time goes on you will feel nausiated, have a sore throat, sores on your tongue, mucus that is hard to get up and out of your mouth. Magic mouthwash is a perscription drug that your Dr. with perscribe for you. I was on morphine for pain, but would have like to have liquid CBD if it is available. I was also treated with Cisplatan once a week (chemo.). I did lose some of my hair but I think that may have been from the stress that my body was under. By week four I was not tasting a whole lot and was having difficulty with most foods. I found anything remotely flavourful would burn my sensitive mouth. Even gravey. I did have a tube put in and, I know it sounds awful, it really did save me when i was not able to drink enough liquid to stay hydrated. Eventually I did use it for ensure, boost, whatever. By the sixth and final week I was very uncomfortable. It got worse before getting better. The two weeks following my last treatment got pretty bad, but after that, just like magic, I began to feel a little better every day. What a relief to have the sores on my tongue and inside check heal up. It is a long slow process, but 15 months post, I can gulp water, eat spicy foods, drink beer and red wine and basically feel fine. I hope that you have people around you that will love and nurture you. Best of luck with all of it. You will get through it. You got this!

    God Bless you and glad your

    God Bless you and glad your well. As I gear up for my day way I am here longing to see day 35. I guess from what I’m reading we are all different with reactions from the therapy but I’m learning a lot. Not sure how my run will go and how it will leave me and that is the scary part for me. But one day at a time I guess and pray it not more then I can handle. 

  • Charmit
    Charmit Member Posts: 87
    Options
    Jbrooks said:

    Hi Charmit... I didn't have

    Hi Charmit... I didn't have rad's to one side but to both. I did manage to "get clipped" as the red nurse put it , to the back o my head on both sides.  Meaning...I lost hair!  Meaning... my hairline in the back is a lot higher up!  I am hoping it will grow back. I feel kinda naked now back there.  I am almost 3 months out from radiation and have my first ct scan in a couple weeks.  Wishing you the best...

    Best of luck on your CT scan

    Best of luck on your CT scan my god be with you and you get the best results. The hair I suppose is a small price to pay in the scheme of things.

    God Bless and thanks 

    Charlene

  • Charmit
    Charmit Member Posts: 87
    Options
    Billie67 said:

    My tumor was on my R side but

    My tumor was on my R side but all of my drs agreed that I needed to do both sides and center of neck since my CA was vocal cords which is pretty centrally located.

    During treatment you feel nothing, just focus on your country jams!

    The magic mouthwash is by RX and they will gladly write you for some. Just ask so you have it in advance.  My dr gave me tons of aquaphor to keep my skin healthy. Towards the end and for a short time after treatment I used a RX cream. You can cross that bridge if you ever come to it.

    You can try and bulk up now before the 30th when you start treatment. That helps for some people. I’m thin by nature so I didn’t have any luck doing so. I ended up with a PEG but it doesn’t mean you will. Some do, some don’t. I feel like its almost an even split. 

    We all get fluoride trays. You will wear them during treatment, with no fluoride in them and then use the fluoride at night. 

    I found for me that during treatment, and pretty early on that food first lost its taste. Then it became terrible tasting! Like even water tasted disgusting BUT not everyone has that issue. Just preparing you so that if it does happen, its common and you don’t think something is wrong.

    My mouth is still dry and its been 5 years but I just never go anywhere without water or some other drink. I also chew a lot of gum which helps a ton. Xylamelts are really good too! 

    Bless your heart, I know that this is a difficult time for you. You will find the worrying about the unknown is worse than the treatment. I promise YOUVE GOT THIS! We wil all be here for you.

    My taste is pretty much back with the exception of any melon type fruit or pineapple. Still tastes very metallic and that is sad for me as I once couldn’t get enough of that! 

    Swallowing may be difficult and you may get some mouth sores, all of which is common but not a given. I got them but many don’t. There are remedies for that should you get them. 

    After treatment is all completed you will gradually get your strength back because during treatment you get very tired and just want to sleep a lot. DO IT!! Rest up when you can but also get out and at least walk around the block if you can, it helps a ton! 

    We are here for you! 

    I’m trying to bulk up but 9

    I’m trying to bulk up but 9 days out from having tonsil out its somewhat hard. But I’m able to eat but still down 5lbs....playing catch up I guess. And your right worrying is my biggest thing and my biggest enemy but I’m managing. Met with my speech doctor today and had a swallow study for my baseline. I seen grown men in the waiting room with burns to the front and side of their necks and completely so much thinner just by how big their cloths looked on them. So that was overwhelming to say the least. My heart ached in fact.

    Luckly I’m not working at the time I took time off, main reason I work at a daycare and the germs, but also need this time to take care of me. I’m scared but not as sacred at the moment so tonight is a good night. Spoke to my radiologist and he again said one Side treated means less good tissue being damaged so he is optomistick I will handle the treatment fine. I’m holding faith to that. I went out tonight and bought a humidifier because I believe I read on here that helps. 

    ‘Keeping busy and now waiting for next Monday.....

    Thahis for the insight and words of encouragement in such a scary and crazy world we live in so many amazingly nice souls on here who have helped me so much and I will be forever grateful!!!

     

  • Charmit
    Charmit Member Posts: 87
    Options

    Eat.

    Eat while you can! Pack on some weight now, because you may need it in the future. As far as the hair, I was walking a round half bald and did not even know it. Someone ask me who cut my hair because the whole posterior scalp fell out.  I then proceeded to give my Chemo nurses heck for not telling me.  All in fun, because they will be come your best friends, advocates, call doctors and just flat out listen to you cry. Hydration and calories are the key. Take great care of you neck tissue and oral cavitiy. Good Luck and fight the fight.  I am a year and a half out and still am searching for my new normal. It's always an evolving process. 

    I’m trying to gain but had

    I’m trying to gain but had right tonsil out 9ndays ago so lost 5lbs from that and trying to gain back, but not easy. So much to take care of and all overwhelming for sure. Florid trays I pick up tomorrow and cleanings every three month for a while so great dentist for sure. Neck tissue have my scare from the removal of a cyst that started all this on March 1 and believe it or not part of it is still numb hope it holds up well during radiation. As for the hair I think I will cry not going to lie. But small price to pay and it better grow back!!!

    God Bless and thanks for reaching out 

    Charlene

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    Options
    Charmit said:

    I’m trying to gain but had

    I’m trying to gain but had right tonsil out 9ndays ago so lost 5lbs from that and trying to gain back, but not easy. So much to take care of and all overwhelming for sure. Florid trays I pick up tomorrow and cleanings every three month for a while so great dentist for sure. Neck tissue have my scare from the removal of a cyst that started all this on March 1 and believe it or not part of it is still numb hope it holds up well during radiation. As for the hair I think I will cry not going to lie. But small price to pay and it better grow back!!!

    God Bless and thanks for reaching out 

    Charlene

    It will, just chill.

    You may not lose any hair. And it will grow back. I wore it like a badge of courage. You got this. I had a Right tonsilectomy, 37 Rads, 7 Cisplastins and partridge in a pear tree. 

    You will find a wealth of real world knowledge on this forum. Don't go to Dr. Google, it will have sick before you even start. We will all be keeping an eye on you. Good Luck.

  • DanceSkater
    DanceSkater Member Posts: 62
    Options
    Charmit said:

    Hi Brandon thanks for the

    Hi Brandon thanks for the words of wisdom. I’m hoping my treatment has no major issues, and I will surly ask about the medication Galera!! Also pray the 7 weeks go quick and no I took an,eave from work seeing I work in a daycare and all the germs told I can’t work. So home and all I do it think of what’s to come. Warm weather is coming so hope to be able to spend time outside. I spoke with the radiologist today and he seem confident I will manage well, I’m hoping he is correct cause my pain level is a negative zero. 

    ‘Nice talking with you and glad your well!!

    Charlene

    Galera

    I think the company that makes the drug is Galera.  The last I can find the drug is called GC4419.   Not sure the drug has a name yet.

    The results for the drug look great !!

  • Charmit
    Charmit Member Posts: 87
    Options

    Galera

    I think the company that makes the drug is Galera.  The last I can find the drug is called GC4419.   Not sure the drug has a name yet.

    The results for the drug look great !!

    Awesome thank you going to

    Awesome thank you going to mention for Sure!!!

  • Charmit
    Charmit Member Posts: 87
    Options

    It will, just chill.

    You may not lose any hair. And it will grow back. I wore it like a badge of courage. You got this. I had a Right tonsilectomy, 37 Rads, 7 Cisplastins and partridge in a pear tree. 

    You will find a wealth of real world knowledge on this forum. Don't go to Dr. Google, it will have sick before you even start. We will all be keeping an eye on you. Good Luck.

    My treatment plan sounds much

    My treatment plan sounds much like yours. And your right yall have help me more then I can express!!! Past few days I have been calm with boughts of fear. As I approach Monday I’m sure the nerves will gear up again....until now I’m focused on the now and not what’s to come.

  • Billie67
    Billie67 Member Posts: 898
    Options
    Charmit said:

    I’m trying to bulk up but 9

    I’m trying to bulk up but 9 days out from having tonsil out its somewhat hard. But I’m able to eat but still down 5lbs....playing catch up I guess. And your right worrying is my biggest thing and my biggest enemy but I’m managing. Met with my speech doctor today and had a swallow study for my baseline. I seen grown men in the waiting room with burns to the front and side of their necks and completely so much thinner just by how big their cloths looked on them. So that was overwhelming to say the least. My heart ached in fact.

    Luckly I’m not working at the time I took time off, main reason I work at a daycare and the germs, but also need this time to take care of me. I’m scared but not as sacred at the moment so tonight is a good night. Spoke to my radiologist and he again said one Side treated means less good tissue being damaged so he is optomistick I will handle the treatment fine. I’m holding faith to that. I went out tonight and bought a humidifier because I believe I read on here that helps. 

    ‘Keeping busy and now waiting for next Monday.....

    Thahis for the insight and words of encouragement in such a scary and crazy world we live in so many amazingly nice souls on here who have helped me so much and I will be forever grateful!!!

     

    ok more in common....at the

    ok more in common....at the time of my treatment I was working as a pre school teacher! I also took the time off for the same reasons. As it turned out, even if I worked an office job I would have needed the time off. I became very exhausted and nauseaus, no way could I have worked. But thats me, some people don't seem to be affected as severly. I did get the burns on my neck but not everyone does. I didn't get them until close to the end. Like maybe #36 of 45 treatments. Also keep in mind my treatment was on both sides and front of my neck. After I was finished with treatment was when it actually hit me. I lost a lot of weight too but the feeding tube helped me a lot. 

    You came to the right place, we've got ya girl!