Radiation next

MICH4EL
MICH4EL Member Posts: 73
in Head and Neck Cancer #1

I am 3 weeks out from my surgery and preparing to move ahead with radiation treatment.  I met with my surgeon, a Mayo Clinic radiation oncologist, and a Minneapolis radiation oncologist this week to plan my radiation treatment.  I will be fitted for the mask on Monday and most likely will start treatments a week from Monday on April 29th. Five days a week for six weeks.

I will be receiving only radiation, not chemotherapy, because both the Mayo doctors and the Minneapolis radiation oncologist feel any possible marginal benefit of chemo is not worth the additional toxicity in my case.  I had a very small primary at the base of the tongue which was removed with negative margins and the chain of cancerous lymph nodes on both sides of my neck were removed and all were fully encapsulated with no spread to surrounding tissues.

I raised the issue of  taking Amifostene (ethyol) prior to radiation treatments to reduce the severity of permanent dry mouth.  My radiation oncologist does not normally recommend it because of the potential side effects, but he reviewed the literature and has agreed to administer it in my case.   Now I need to check to be sure it is covered by my insurance.  I will take an anti-nausea medication before the Amifostene injection and then will be monitored for 15 minutes in case my blood pressure drops.  We will discontinue it if I develop a stronger reaction.

Thanks, everyone, for all the advice on how to prepare for and endure radiation treatments.  My radiation oncologist did not sugarcoat it and I appreciate that.  I will stock up on the many supplies and aids that have been recommended on this Board.  I know what lies ahead, but I also know that I can get through it because so many of you have.

M

 

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Both John (Skiffin) and I had Amifostine

    during treatment....there are expected side effects, like blood pressure dropping, mine always came back up in time for the rads given 30 minutes after the injection (actually, they used to inject mine into an IV, after much fluids).  There is a flush that happens right after you get it too....my face would turn red, and I'd feel a little dizzy, uncomfortable, and slightly nausiated....but I was also taking an Ativan (Lorazipam) 30 minutes before the Amifostine. 

    John has all his saliva back....mine is coming slowly, and I don't know if that's due to getting Amifostine, or just the nature of things....however, the one thing both John and I agree on....the Amifostine saved us from the horrible thick, ropey mucous radiation causes.  I had absolutely not one ounce of mucous after 35 rads, and my rads were directed behind my nose, so I truly thought I'd be fighting it.

    I can tell you I was delighted to end Amifostine, but I'm sure glad I had it.

    p   

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #3
    I had it also

    I know from the board that doctors feel different about the Ami.  I felt it helped too.  My body handled it for 4 weeks.  I had red welts on my tummy and was happy on Friday--2 days no shot!  I used Cortizone cream on the tummy, dry and itchy.  I had 2 meds to take before shot, made me really tired, I slept for hours when I got home.  You can do this.  Check the Superthread for suggestions.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Amifostine

    Yep, I had it also...

    Same with me, in the tummy each day 15 - 30 minutes before rads... It's most efffective within that time frame too.

    But I also got an itchy welt about the size of a quarter..., they would rotate around my belly button so not to hit the same spot twice.

    I tolerated 32 before I started getting high fevers a few hours after the injection and rads.

    But I definitely don't regret having them, and I'd do it again (if I had to)...

    Best

    John

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    It is mask time next

    MICH4EL,

    To level the playing field, I did not have Amifostine and seem to be ok.  As I sit and type this I have a mouth full of saliva (pause, swallow) did have a mouth full of saliva. All I can say is if it worked for P51, Kteacher and John it is good enough for me. Now watch the blood pressure, red face and tummy rash.

    As you noted, you will do fine, the actual rad procedure is easy it is the (maybe) side effects which are fun. Not being one to spoil any surprises, just ask and we will respond with complete honesty.

    Best,

    Matt

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #6
    Hard to tell

    Hi Michael,

    I'm getting concurrent rads and chemo so it's a little difficult to differenciate between what sucks more ~lol~ Add that to the fact that I'm at the peak of treatment and it makes for one heck of a good time! (please read heavy sarcasm into that statement).

    If you haven't already, start preparing your skin for the rads. I was liberally using "Special Care Cream" 2 weeks prior to treatment. Other than a little redness, I don't have any burning issues with the skin on my neck. I know results may vary but I'm a blue eyed blond (when I had hair) and have fair skin... nuff said.  Turkey neck is another story. I developed the infamous "Gobble Gobble" about halfway through treatment. The cream is helping a lot. Of course, lymphodema is a distinct possibility but I haven't developed it yet. I met with a lymphodema specialist in physical therapy and learned massage techniques. I also had a "neck bra" made should it start to become an issue. Between the massage and support system, turkey neck should not be an issue long term. 

    I don't know about Amifostene. My RO was confident I didn't need it based on the game plan. Lawrence of Arabia couldn't get through my mouth right now but eventually an oasis will sprout in the next 6 months. Taste is gone for all intents and purposes. I still have ghosts and some active taste spirits but that whole aspect of sensory deprivation is skewed and has yet to process.  It happened fast too. I was tasting fine last week and this week it went.  On the bright side, I don't have to shave! Because of the unknown primary, a much broader area is being hit. Essentially everything South of my cheek bone line so my face is sssmmmoooth :)

    There's no doubt the chemo is adding a dimension of sick that rads alone don't have but still, "It's brutal but you'll survive" is accurate (note that I didn't say what condition you'll be in). 

    I'm gonna make it without the tube.....barely...  I'm 5 pounds short of the limit for my weight. Who knows what the next few weeks will hold but my RO saw signs of early healing in my throat and he thinks I'll be able to eat more. I was alble to go back to soft solids late this week and it's made a difference. so we'll see.

    Hydrate... Eat/Nutrition... Pain/Symptom management...  the keys to getting through this. 

    "T"

     

     

     

  • MICH4EL
    MICH4EL Member Posts: 73
    #7
    phrannie51 said:

    Both John (Skiffin) and I had Amifostine

    during treatment....there are expected side effects, like blood pressure dropping, mine always came back up in time for the rads given 30 minutes after the injection (actually, they used to inject mine into an IV, after much fluids).  There is a flush that happens right after you get it too....my face would turn red, and I'd feel a little dizzy, uncomfortable, and slightly nausiated....but I was also taking an Ativan (Lorazipam) 30 minutes before the Amifostine. 

    John has all his saliva back....mine is coming slowly, and I don't know if that's due to getting Amifostine, or just the nature of things....however, the one thing both John and I agree on....the Amifostine saved us from the horrible thick, ropey mucous radiation causes.  I had absolutely not one ounce of mucous after 35 rads, and my rads were directed behind my nose, so I truly thought I'd be fighting it.

    I can tell you I was delighted to end Amifostine, but I'm sure glad I had it.

    p   

    Amifostene

    Thanks, P.  Would you recommend having an IV port placed rather than getting the Ami as an injection every day? 

  • MICH4EL
    MICH4EL Member Posts: 73
    #8
    fishmanpa said:

    Hard to tell

    Hi Michael,

    I'm getting concurrent rads and chemo so it's a little difficult to differenciate between what sucks more ~lol~ Add that to the fact that I'm at the peak of treatment and it makes for one heck of a good time! (please read heavy sarcasm into that statement).

    If you haven't already, start preparing your skin for the rads. I was liberally using "Special Care Cream" 2 weeks prior to treatment. Other than a little redness, I don't have any burning issues with the skin on my neck. I know results may vary but I'm a blue eyed blond (when I had hair) and have fair skin... nuff said.  Turkey neck is another story. I developed the infamous "Gobble Gobble" about halfway through treatment. The cream is helping a lot. Of course, lymphodema is a distinct possibility but I haven't developed it yet. I met with a lymphodema specialist in physical therapy and learned massage techniques. I also had a "neck bra" made should it start to become an issue. Between the massage and support system, turkey neck should not be an issue long term. 

    I don't know about Amifostene. My RO was confident I didn't need it based on the game plan. Lawrence of Arabia couldn't get through my mouth right now but eventually an oasis will sprout in the next 6 months. Taste is gone for all intents and purposes. I still have ghosts and some active taste spirits but that whole aspect of sensory deprivation is skewed and has yet to process.  It happened fast too. I was tasting fine last week and this week it went.  On the bright side, I don't have to shave! Because of the unknown primary, a much broader area is being hit. Essentially everything South of my cheek bone line so my face is sssmmmoooth :)

    There's no doubt the chemo is adding a dimension of sick that rads alone don't have but still, "It's brutal but you'll survive" is accurate (note that I didn't say what condition you'll be in). 

    I'm gonna make it without the tube.....barely...  I'm 5 pounds short of the limit for my weight. Who knows what the next few weeks will hold but my RO saw signs of early healing in my throat and he thinks I'll be able to eat more. I was alble to go back to soft solids late this week and it's made a difference. so we'll see.

    Hydrate... Eat/Nutrition... Pain/Symptom management...  the keys to getting through this. 

    "T"

     

     

     

    Thanks, T

    Now that I can swallow again after surgery, I am trying to bulk up quickly again before radiation hits me.   I lost 12 pounds after surgery but have gained 3-4 back already.   

  • MICH4EL
    MICH4EL Member Posts: 73
    #9
    CivilMatt said:

    It is mask time next

    MICH4EL,

    To level the playing field, I did not have Amifostine and seem to be ok.  As I sit and type this I have a mouth full of saliva (pause, swallow) did have a mouth full of saliva. All I can say is if it worked for P51, Kteacher and John it is good enough for me. Now watch the blood pressure, red face and tummy rash.

    As you noted, you will do fine, the actual rad procedure is easy it is the (maybe) side effects which are fun. Not being one to spoil any surprises, just ask and we will respond with complete honesty.

    Best,

    Matt

    Surprises

    Thanks, Matt.  I appreciate the brutal honesty on this discussion Board.  I would rather know the truth and prepare for it than to be hit with unexpected pain and suffering and wonder why it is so hard.  Everyone's honesty is always coupled with great encouragement and optimism, though, so the message comes through that this will be very difficult but I will get through it and then will be glad to have endured the treatment in order to kill the beast.

     

    M

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Michael & T-Man

    Even though I had Amifostine, I still lost all (nearly) taste and saliva, for several months... The saliva seems to come back for most as does the taste, eventually... But as P said I didn't have the thick ropey phlegm that a lot seem to get. And that was the main objective of my onco...

    I say onco, because I too was concurrent at the time weekly carboplatin, and the daily rads...

    My rads MD wasn't really impressed with Amifostine injections...

    But I'm glad that I did have them...

    JG

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #11
    Skiffin16 said:

    Michael & T-Man

    Even though I had Amifostine, I still lost all (nearly) taste and saliva, for several months... The saliva seems to come back for most as does the taste, eventually... But as P said I didn't have the thick ropey phlegm that a lot seem to get. And that was the main objective of my onco...

    I say onco, because I too was concurrent at the time weekly carboplatin, and the daily rads...

    My rads MD wasn't really impressed with Amifostine injections...

    But I'm glad that I did have them...

    JG

    Being prepared

    John,

    I was a cub scout and boy scout in my youth and we were taught to always be prepared. Rope was something you just always had on you no matter what. I still carry some in my truck at all times. You never know when having thick ropey phlegm might come in handy or save a life! ;)

    "T"

     

  • MICH4EL
    MICH4EL Member Posts: 73
    #12
    fishmanpa said:

    Being prepared

    John,

    I was a cub scout and boy scout in my youth and we were taught to always be prepared. Rope was something you just always had on you no matter what. I still carry some in my truck at all times. You never know when having thick ropey phlegm might come in handy or save a life! ;)

    "T"

     

    I suppose the rope can keep the breath-eating cat away, too

    Just thinking...

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    fishmanpa said:

    Being prepared

    John,

    I was a cub scout and boy scout in my youth and we were taught to always be prepared. Rope was something you just always had on you no matter what. I still carry some in my truck at all times. You never know when having thick ropey phlegm might come in handy or save a life! ;)

    "T"

     

    Marines..

    We use parachute cord, LOL....

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #14
    The Fun Begins

    Wishing you the very best during radiation.  I did not start to have trouble eating until about 3 weeks in so just kept my nomal diet.  I wished I would have eaten a lot more during that time.  Both to bulk up and to remember how food tastes.  Slowly, very slowly getting taste back.  Did not drop below crtical weight but got close and still struggling to gain weight.  Was fairly slim to start  with.  In short my best observation is eat!

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