Newly Diagnosed Adcc

longtermsurvivor

tjheron said:

Two down, 28 to go.  Two

Two down, 28 to go.  Two treatments in and I'm thinking to myself this isn't so bad.  I've been able to fight off the clautrophobia from the mask.  Thank god I only have it on for 10 mintues or so. I'm continuing to exercise and drink glutamine laced water.  I know its very early in the game but so far so good.  I do feel nauseous immediately after the treatment. Anyone else experience that feeling?     

question

Many  experience nausea after treatment, some enough to require specific treatment for it.   Lucky me, that was one problem I never encountered.  In an early post you said you were headed for 37 treatments, which would equate to about 74Gy of radiation.  These last two posts you have said 30, which would be more like 60Gy.  Long term side effects being what they are, it makes a big difference which of these you are headed for.  With the lower limit, long term side-effects, all of them, are much less.  Shorter term, of course, the majority of us are't lucky enough to completely done with our treatments without symptoms, mostly felt towards and after the end. 

 

keep up the good work.

 

Pat

tjheron

longtermsurvivor said:

question

Many  experience nausea after treatment, some enough to require specific treatment for it.   Lucky me, that was one problem I never encountered.  In an early post you said you were headed for 37 treatments, which would equate to about 74Gy of radiation.  These last two posts you have said 30, which would be more like 60Gy.  Long term side effects being what they are, it makes a big difference which of these you are headed for.  With the lower limit, long term side-effects, all of them, are much less.  Shorter term, of course, the majority of us are't lucky enough to completely done with our treatments without symptoms, mostly felt towards and after the end. 

 

keep up the good work.

 

Pat

Yes, you are correct.  My ENT

Yes, you are correct.  My ENT doctor initially said 37 treatments.  After I spoke to the radiation oncologist the number dropped to 30.  Not sure the reason for the change except maybe the ENT doctor threw out the wrong number.  Good thing too I guess!  Like everyone before me, I’m hoping to get through this with minimal battle damage. 

On a separate note I was asked if I wanted to keep my mask after all is said and done.  I hadn’t really thought about it but it made me wonder what other folks have done?  I’m thinking I’ll bid it au revoir in the fire pit followed by a shot of bourbon. 

 

lornal

tjheron said:

Yes, you are correct.  My ENT

Yes, you are correct.  My ENT doctor initially said 37 treatments.  After I spoke to the radiation oncologist the number dropped to 30.  Not sure the reason for the change except maybe the ENT doctor threw out the wrong number.  Good thing too I guess!  Like everyone before me, I’m hoping to get through this with minimal battle damage. 

On a separate note I was asked if I wanted to keep my mask after all is said and done.  I hadn’t really thought about it but it made me wonder what other folks have done?  I’m thinking I’ll bid it au revoir in the fire pit followed by a shot of bourbon. 

 

mask

we kept it, but my husband put it away somewhere.  Several years later, I stumbled across it - freaked me you - ran and threw it in the trash.

burn it!

 

Lorna 2007 & 2014

meaganb

tjheron said:

Yes, you are correct.  My ENT

Yes, you are correct.  My ENT doctor initially said 37 treatments.  After I spoke to the radiation oncologist the number dropped to 30.  Not sure the reason for the change except maybe the ENT doctor threw out the wrong number.  Good thing too I guess!  Like everyone before me, I’m hoping to get through this with minimal battle damage. 

On a separate note I was asked if I wanted to keep my mask after all is said and done.  I hadn’t really thought about it but it made me wonder what other folks have done?  I’m thinking I’ll bid it au revoir in the fire pit followed by a shot of bourbon. 

 

I kept mine. Its hanging in

I kept mine. Its hanging in the garage. For some reason I just can't destroy it. There is someone who makes art out of donated masks which is kind of cool.

jackflash22

tjheron said:

Yes, you are correct.  My ENT

Yes, you are correct.  My ENT doctor initially said 37 treatments.  After I spoke to the radiation oncologist the number dropped to 30.  Not sure the reason for the change except maybe the ENT doctor threw out the wrong number.  Good thing too I guess!  Like everyone before me, I’m hoping to get through this with minimal battle damage. 

On a separate note I was asked if I wanted to keep my mask after all is said and done.  I hadn’t really thought about it but it made me wonder what other folks have done?  I’m thinking I’ll bid it au revoir in the fire pit followed by a shot of bourbon. 

 

To keep or not to keep

it depends what you want to do with it, I kept mine because I'm a crafter and thought I'd use it as a mould for papier mâché masks like the Italian wall masks............I haven't used it yet, it's in my stair cupboard and as my gas meter is also in there it's scares the meter readers when they open the cupboard......some like putting it in front of their car and running backwards and forwards over it. Halloween is coming up maybe I'll put it on the doorstep with a candle in it....might keep the kids from knocking on my door every few minutes. (All tongue in cheek)

tjheron

Twelve down, 18 to go!  I'm

Twelve down, 18 to go!  I'm so glad I have the weekend off from getting zapped.  I've been getting my treatments at 8am everyday.  I wake up feeling fine, just a little nauseous, but after treatment its downhill the remiander of the day.  The nausea and lathargy are the worst!  Taste is going away too.  It feels like I'm eating food inside a platic bag. I can taste it, but its masked.  The good news is zero throat pain. The gluamine is working! I'm guessing by the end of the week I'll feel more of the cumulative effects. Can't wait until this is over.

wmc

tjheron said:

Twelve down, 18 to go!  I'm

Twelve down, 18 to go!  I'm so glad I have the weekend off from getting zapped.  I've been getting my treatments at 8am everyday.  I wake up feeling fine, just a little nauseous, but after treatment its downhill the remiander of the day.  The nausea and lathargy are the worst!  Taste is going away too.  It feels like I'm eating food inside a platic bag. I can taste it, but its masked.  The good news is zero throat pain. The gluamine is working! I'm guessing by the end of the week I'll feel more of the cumulative effects. Can't wait until this is over.

That is good news....

This is good news. 1st you're almost half done. 2nd you are still able to eat and still some taste but you will get most if not all of that back in....time. 3rd no throat pain. You seem to be doing better than most at this time and you  still have that great attitude, which you do need to fight this. This has it's own time frame and it seems to be slow at times. Just take one day at a time, and enjoy each and every accomplishment you make because you work hard for them and there a big deal. Hope your tomorrows are even better.............

Bill

meaganb

Before you know it you will

Before you know it you will have more behind you than in front of you. Just expect to still be feeling the effects after treatment is done. The two weeks following treatment were my worst but it got better from there. Sounds like you are doing great! Keep eating as long as you can!!

debbiejeanne

tjheron said:

Twelve down, 18 to go!  I'm

Twelve down, 18 to go!  I'm so glad I have the weekend off from getting zapped.  I've been getting my treatments at 8am everyday.  I wake up feeling fine, just a little nauseous, but after treatment its downhill the remiander of the day.  The nausea and lathargy are the worst!  Taste is going away too.  It feels like I'm eating food inside a platic bag. I can taste it, but its masked.  The good news is zero throat pain. The gluamine is working! I'm guessing by the end of the week I'll feel more of the cumulative effects. Can't wait until this is over.

tj, 12 down and the weekend

tj, 12 down and the weekend off!!!  that's great!  enjoy the break and remember, you'll be done soon!

God bless you,

dj

phrannie51

tjheron said:

Twelve down, 18 to go!  I'm

Twelve down, 18 to go!  I'm so glad I have the weekend off from getting zapped.  I've been getting my treatments at 8am everyday.  I wake up feeling fine, just a little nauseous, but after treatment its downhill the remiander of the day.  The nausea and lathargy are the worst!  Taste is going away too.  It feels like I'm eating food inside a platic bag. I can taste it, but its masked.  The good news is zero throat pain. The gluamine is working! I'm guessing by the end of the week I'll feel more of the cumulative effects. Can't wait until this is over.

You're bearing down on the halfway

point.....that was a huge milestone for me!  I liked being on the short end of the tunnel far better than the long end.  You're doing great!  Won't be long before you're in the single digit countdown.

p

tjheron

meaganb said:

Before you know it you will

Before you know it you will have more behind you than in front of you. Just expect to still be feeling the effects after treatment is done. The two weeks following treatment were my worst but it got better from there. Sounds like you are doing great! Keep eating as long as you can!!

Thanks everyone for the

Thanks everyone for the encouraging words.  It is unbelieviably helpful!  

tjheron

Seventeen down!!  I finished

Seventeen down!!  I finished number 17 today and thankful the side effects have been minimal thus far.  I'm tired from about 10 minutes after I wake up in the morning till I go to sleep around 8pm....and I struggle to make it till then.  Very hard to keep my eyes open throughout the day.  My throat feels scratchy, but not sore.  I have no problems eating as my scale can atest. I've somehow gained 7 lbs since treatment started.  I was so worried about not being able to eat I over compensated.  I have a nice red target on the side of my neck thats easy to see because a patch of my beard fell out.  The doc said not to shave the remainder because she'd have to redo the entire treatment plan. I guess the the hair that already fell out doesn't count....hmmmm....seems questionable. I did catch a cold but started mixing Emergen-C with my glutamine. It seems to have helped a lot.  I'm happy the weekend is here so my body can repair some of the damage.  As a bonus I get Veteran's Day off from treatment!

lornal

tjheron said:

Seventeen down!!  I finished

Seventeen down!!  I finished number 17 today and thankful the side effects have been minimal thus far.  I'm tired from about 10 minutes after I wake up in the morning till I go to sleep around 8pm....and I struggle to make it till then.  Very hard to keep my eyes open throughout the day.  My throat feels scratchy, but not sore.  I have no problems eating as my scale can atest. I've somehow gained 7 lbs since treatment started.  I was so worried about not being able to eat I over compensated.  I have a nice red target on the side of my neck thats easy to see because a patch of my beard fell out.  The doc said not to shave the remainder because she'd have to redo the entire treatment plan. I guess the the hair that already fell out doesn't count....hmmmm....seems questionable. I did catch a cold but started mixing Emergen-C with my glutamine. It seems to have helped a lot.  I'm happy the weekend is here so my body can repair some of the damage.  As a bonus I get Veteran's Day off from treatment!

Glad

Glad you are doing so well. 

When I went through chemo and radiation in 2007, it was about at the place where you are - I was sleeping 20 hours a day.  I'd wake up - try to eat, nap, try to eat something for lunch, nap again, something for dinner, and another nap.  Then I would wake up for an hour or so, and take a sleeping pill.

Keep eating and keep hydrated - it will be over soon!

Lorna 2007 & 2014

tjheron

Rang the Bell

Just finished treatment 30 the day before Thanksgiving...yay.  I'm so glad it is over as I went downhill fast over the last seven treatments.  The rapidarc machine broke down Wed and Thurs of last week so I ended up getting seven treatments over six days (I doubled up this past Tuesday). The metallic taste and nausea were almost overwhelming.  The worst side effect, however, is the constant salivation.  Its like I'm rabid.  Not only is it enormous amounts, but it tastes horrible and I'm guessing the primary source of my nausea.  Anyone experience this side effect? Strangely enough, no mouth sores until the next to the last day of treatment.  Although not hungry for any Thanksgiving food, I tried to eat but everything tasted like metal. I'm hoping the metallic taste goes away quickly.  

I was told to expect the nausea to hang around for 2-3 weeks and tastebuds to regenerate within 3-4 months.  Any recommendations to speed those processes along?  All in all I'm very thankful I made it through treatment with minimal side effects.  One month hence I have my first post treatment appointment. I'm going to keep my fingers crossed there are no surprises waiting for me.  

Thank you everyone for the information, advice and encouragement that helped me get through this. Happy Thanksgiving!!!

lornal

tjheron said:

Rang the Bell

Just finished treatment 30 the day before Thanksgiving...yay.  I'm so glad it is over as I went downhill fast over the last seven treatments.  The rapidarc machine broke down Wed and Thurs of last week so I ended up getting seven treatments over six days (I doubled up this past Tuesday). The metallic taste and nausea were almost overwhelming.  The worst side effect, however, is the constant salivation.  Its like I'm rabid.  Not only is it enormous amounts, but it tastes horrible and I'm guessing the primary source of my nausea.  Anyone experience this side effect? Strangely enough, no mouth sores until the next to the last day of treatment.  Although not hungry for any Thanksgiving food, I tried to eat but everything tasted like metal. I'm hoping the metallic taste goes away quickly.  

I was told to expect the nausea to hang around for 2-3 weeks and tastebuds to regenerate within 3-4 months.  Any recommendations to speed those processes along?  All in all I'm very thankful I made it through treatment with minimal side effects.  One month hence I have my first post treatment appointment. I'm going to keep my fingers crossed there are no surprises waiting for me.  

Thank you everyone for the information, advice and encouragement that helped me get through this. Happy Thanksgiving!!!

Thanksgiving

Truely a Thanksgiving Day when you were ablt to rignt the bill.

Congratulations!

Lorna 2007 & 2014

wmc

tjheron said:

Rang the Bell

Just finished treatment 30 the day before Thanksgiving...yay.  I'm so glad it is over as I went downhill fast over the last seven treatments.  The rapidarc machine broke down Wed and Thurs of last week so I ended up getting seven treatments over six days (I doubled up this past Tuesday). The metallic taste and nausea were almost overwhelming.  The worst side effect, however, is the constant salivation.  Its like I'm rabid.  Not only is it enormous amounts, but it tastes horrible and I'm guessing the primary source of my nausea.  Anyone experience this side effect? Strangely enough, no mouth sores until the next to the last day of treatment.  Although not hungry for any Thanksgiving food, I tried to eat but everything tasted like metal. I'm hoping the metallic taste goes away quickly.  

I was told to expect the nausea to hang around for 2-3 weeks and tastebuds to regenerate within 3-4 months.  Any recommendations to speed those processes along?  All in all I'm very thankful I made it through treatment with minimal side effects.  One month hence I have my first post treatment appointment. I'm going to keep my fingers crossed there are no surprises waiting for me.  

Thank you everyone for the information, advice and encouragement that helped me get through this. Happy Thanksgiving!!!

Ring that BELL and right at Thanksgiving too.

This is a Thanksgiving Day you and your family will never forget and in a good way. The road is bumpy but you seemed to get down it and now the road to recovery. The speed for some things can be at a slower pace, but it is moving forward and the worst is behind. Soon the smell seemes to get better, then you get more tast. You just selabrate each and every improvement, they are all major to us. You battled the beast and came out the victor. Bless you and your family, and may all tour tomorrows be better than today.

Bill

tjheron

Should I worry?

Yesterday I developed the exact same pain on my right side submandibular as I experienced on my left side prior to getting diagnosed.  Now I'm worried!  I keep telling myself I just finished radiation so it should be nothing....maybe just an infection or something.  Anyone else ever experience this? I'm hyper-sensitive to any ache or pain in and around my head and neck, but it sure does feel the same and its at the exact spot, just on the oppisite side.

meaganb

tjheron said:

Should I worry?

Yesterday I developed the exact same pain on my right side submandibular as I experienced on my left side prior to getting diagnosed.  Now I'm worried!  I keep telling myself I just finished radiation so it should be nothing....maybe just an infection or something.  Anyone else ever experience this? I'm hyper-sensitive to any ache or pain in and around my head and neck, but it sure does feel the same and its at the exact spot, just on the oppisite side.

It never  hurts to get

It never  hurts to get something that worries you checked out. You recently finished Rads, correct? The radiation should have targeted the exact area where the tumor was which could lead to pain that mimics the tumor. My tumor was sitting on a nerve & caused a severe earache. Surgery resolved the earache by removing the tumor. By the end of Rads the earache was back full force & it eventually subsided. I still have times where my ear aches & I willl be 3 years out from diagnosis in March. Radiation is the gift that keeps on giving. So, from my experience, it is probably just a part of the healing process but if you're stressed about it then definitely call your doctor!