Am I blessed or just lucky?

Bigfuzzydoug
Bigfuzzydoug Member Posts: 154
edited March 2014 in Head and Neck Cancer #1
So far I'm not doing so badly with this radiation thing. (I sure hope I haven't jynxed myself there!) Of course I have a wussy cancer compared to what many of you are going through / have gone through. Stage 2, don't need chemo, just radiation, localized in the larynx and so only targeting the larynx and neck nodes - all below the jawline. I'm also only on my 22nd treatment out of 35 with 2-1/2 weeks to go, so maybe I haven't begun to "feel the burn".

* But so far I don't feel any pain, only when swallowing so I'm not on pain meds.
* I can still eat solids, albeit soft solids and I have to chew it up like crazy. I'm only down about 4 pounds.
* Just moderate saliva issues, but sipping water throughout the day handles that.
* No changes in taste.
* I'm still working and getting stuff done, mild fatigue - usually starting around 4pm.
* Skin is red, burned, dry and itchy, but not painfully so. RadiaGel, Aquaphor and Cortizone takes care of it.
* The only thing that is bad (but bareable) is that the voice is gone. Totally dysphonic. But it'll come back.

So maybe I'm blessed. Maybe I'm lucky. But in some twisted way, I think maybe at this point 22 out of 35, I'm doing considerably better than a lot of people who've been in the same boat.
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Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    blessed
    I vote for blessed.

    My husband at (early?) Stage IV hypopharyngeal and base of tongue cancer, was also blessed with having a relatively easy time of things when it comes to treatment.

    Blessed. Definitely blessed.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    Blessed - check mark
    You are so blessed, we continue throw positive your way and pray that it does not get worse.

    Please keep us updated.

    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Lucky
    Hope it continues for you....guess you'll know in another few weeks.... Then you'll be blessed...LOL.

    I think I started getting some reaction about your time frame. I never really got bad burning, just discolored and some peeling. How about your hairline around your collar, I lost about two inches, but it's pretty much came back?

    If it doesn't or hasn't messed with your salivary function or taste that much, then you're Blessed... I did get pretty tore up on the inside of the throat eventually. About seven weeks of not much more than Ensure and water after drugs.

    Good Luck (may it continue)...
    John
  • JUDYV5
    JUDYV5 Member Posts: 392
    #5
    Blessed
    All the side effects of the radiation were very managable for me. I didn't use the pain meds either. The chemo was another story. You are blessed that you didn't have to have it. I hope your good fortune continues.
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    #6
    JUDYV5 said:

    Blessed
    All the side effects of the radiation were very managable for me. I didn't use the pain meds either. The chemo was another story. You are blessed that you didn't have to have it. I hope your good fortune continues.

    :)
    I pray your blessing continues FOREVER!! I'm so glad to hear you're handling things well!
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #7
    Skiffin16 said:

    Lucky
    Hope it continues for you....guess you'll know in another few weeks.... Then you'll be blessed...LOL.

    I think I started getting some reaction about your time frame. I never really got bad burning, just discolored and some peeling. How about your hairline around your collar, I lost about two inches, but it's pretty much came back?

    If it doesn't or hasn't messed with your salivary function or taste that much, then you're Blessed... I did get pretty tore up on the inside of the throat eventually. About seven weeks of not much more than Ensure and water after drugs.

    Good Luck (may it continue)...
    John

    Radiation hair removal technique
    Well I'm just getting radiation from the jawline down so it's not really affecting the hairline in the back. The neck is fried so I don't have to shave there anymore. Some of my shoulders and top of my chest are getting some dosage, but since I'm not Italian, I have no issues with large amounts of hair loss there.

    IT'S A JOKE PEOPLE! A JOKE! No need to put a hit out on the Bigfuzzydoug for that wise crack! ;-p
  • RushFan
    RushFan Member Posts: 224
    #8
    KristynRuth86 said:

    :)
    I pray your blessing continues FOREVER!! I'm so glad to hear you're handling things well!

    Amazing report, your doctors
    Amazing report, your doctors must be impressed...I sure am. Way to go, you are doing great.
  • rozaroo
    rozaroo Member Posts: 665
    #9
    RushFan said:

    Amazing report, your doctors
    Amazing report, your doctors must be impressed...I sure am. Way to go, you are doing great.

    Happy!
    It is great to hear that you are having an easy time with your treatment. Good new's like this makes us all feel better! I wish you my best for the rest of your treatment & a great recovery!
    Roz
  • friend of Bill
    friend of Bill Member Posts: 87
    #10
    No "wussy cancer" in my book
    Cancer and its treatment suck but for some it's worse than others. Stay positive, expect the best, but don't fall off that bike if you wake up one morning in the next few weeks feeling a lot worse. You'll deal with it. Till then, may you continue to be blessed!

    Vince
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #11
    Blessed and Lucky
    Doug,

    I felt that I was both, Blessed to not have as bad side effects as the other patients who were going through treatment the same time as me. I also felt that I was lucky to have the Surgeon and Radiation Oncologist that I had.

    I was in the same boat as you at the beginning of week 5. 20 treatments under my belt and didn't start my pain med's yet. I was using the Baking Soda and Salt solution as a rinse/gargle every 30 minutes to take the edge off of the discomfort. I had also increased the amount of 1 teaspoon of each in a quart of water to 1 tablespoon of each in the 1 quart of water. My Oncologist was surprised that I hadn't started the pain med's and said I had sores the size of quarters in my mouth. I said I wasn't in any pain, and his reply was for me to start taking at least one pain pill 3 times a day to stay ahead of the up coming pain that he said I would eventually get.

    Smart man, as the 5th week went on, the pain started and continued for several weeks after the last treatment. Once the pain was do-able, I started weaning myself off of the pain med's. Just a heads up for you. My suggestion would be, to be prepared for the pain and jump on it as soon as it shows it's ugly head.

    My Best to You and Everyone Here
  • Pam M
    Pam M Member Posts: 2,196
    #12
    Excellent
    Doug,
    As my docs would put it "Your body is tolerating the treatment in a spectacular manner". Great to hear - hope it keeps up. Glad you don't need chemo. Durng treatment, it seemed I had lots more "gifts" from chemo than rads. Keep doing well.
  • chark
    chark Member Posts: 14
    #13
    Pam M said:

    Excellent
    Doug,
    As my docs would put it "Your body is tolerating the treatment in a spectacular manner". Great to hear - hope it keeps up. Glad you don't need chemo. Durng treatment, it seemed I had lots more "gifts" from chemo than rads. Keep doing well.

    Blessed; with big question
    Doug,

    I think you are blessed, as luck is not in my vocabulary. Luck did not get me to where I needed to be, it is by the grace of God.

    Big question: What kind of radiation are you having? Is it by chance Proton? I ask because I begin Proton Oct 5 to my nasal cavity, check sinus, and up my ethmoid sinus to the skull. I am told that side effects tend to be less with Proton.

    I will continue to pray for blessings your way!

    Christy
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #14
    chark said:

    Blessed; with big question
    Doug,

    I think you are blessed, as luck is not in my vocabulary. Luck did not get me to where I needed to be, it is by the grace of God.

    Big question: What kind of radiation are you having? Is it by chance Proton? I ask because I begin Proton Oct 5 to my nasal cavity, check sinus, and up my ethmoid sinus to the skull. I am told that side effects tend to be less with Proton.

    I will continue to pray for blessings your way!

    Christy

    Proton Radiation
    I am undergoing IMRT radiation, not proton for a couple of reasons: I don't live anywhere near a proton facility which are still pretty rare. And I don't really need it.

    I've done a bunch of research on it. The key word is "drop-off". With standard and IMRT radiaton, targeting is handled by angle, beam shape and depth. It's the depth that's the issue. Radiation dosage looks like a bell-curve. The top is the target, say the tumor, where you want the highest rads to hit. But the radiation goes past that and affects other healthy tissues behind it. Proton radiation looks more like a curve on the left side and then a cliff on the right. Once the target depth is achieved, the radiation very quickly drops off and does not affect tissue behind the target site.

    This is good for certain locations of radiation targets. Prostate radiation with standard or IMRT can be brutal on the colon. In your case they're trying to protect your brain. So yes - the side effects with proton are less because less healthy tissue is getting hit.

    In my case (larynx cancer) they're targeting my throat and neck lymph nodes. Everything below the jawline. I've seen the targeting scans. My drop-off from straight on ends before the spinal cord. And with IMRT, they hit me from 8 different locations. The only thing that's getting hit that can't be helped is my thyroid gland. But since they can avoid my spine, there's nothing behind the target zone and the target zone is so broad, proton isn't necessary.

    It's also 50 times more expensive (I doubt insurance would cover it) and I would have to temporarily move for 7 weeks to get it where it's available.

    Good luck with yours Christy!!!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Hi Doug


    Sound like you are doing very good, the last week or so may give you some problems but hang in there you look to come out of this with flying colors.
  • chark
    chark Member Posts: 14
    #16
    Bigfuzzydoug said:

    Proton Radiation
    I am undergoing IMRT radiation, not proton for a couple of reasons: I don't live anywhere near a proton facility which are still pretty rare. And I don't really need it.

    I've done a bunch of research on it. The key word is "drop-off". With standard and IMRT radiaton, targeting is handled by angle, beam shape and depth. It's the depth that's the issue. Radiation dosage looks like a bell-curve. The top is the target, say the tumor, where you want the highest rads to hit. But the radiation goes past that and affects other healthy tissues behind it. Proton radiation looks more like a curve on the left side and then a cliff on the right. Once the target depth is achieved, the radiation very quickly drops off and does not affect tissue behind the target site.

    This is good for certain locations of radiation targets. Prostate radiation with standard or IMRT can be brutal on the colon. In your case they're trying to protect your brain. So yes - the side effects with proton are less because less healthy tissue is getting hit.

    In my case (larynx cancer) they're targeting my throat and neck lymph nodes. Everything below the jawline. I've seen the targeting scans. My drop-off from straight on ends before the spinal cord. And with IMRT, they hit me from 8 different locations. The only thing that's getting hit that can't be helped is my thyroid gland. But since they can avoid my spine, there's nothing behind the target zone and the target zone is so broad, proton isn't necessary.

    It's also 50 times more expensive (I doubt insurance would cover it) and I would have to temporarily move for 7 weeks to get it where it's available.

    Good luck with yours Christy!!!

    Proton Radiation
    Thanks, Doug.

    They are targeting my check sinus, nasal cavity, and ethmoid sinuses ( right by the right eye) so that is why I am doing proton. I am very blessed insurance is covering it and I live in Maine, 2 hours from Boston. Harvard and Mass General Hospital have the proton.

    Be blessed,
    Christy
  • Chewy2009
    Chewy2009 Member Posts: 7
    #17
    Are you still blessed?
    I am slightly behind you in radiation treatments. Today was day 20 - thirteen more to go. I have been doing very well until last night. I have been going into coughing fits and getting excess mucus in the back of my throat which make me cough more. My voice is gone. I am still working FT, because in general I do not classify myself as sick. I still feel very lucky compared to most everyone - I seem to be following in your path so just wanted to know how you were doing. I feel blessed also. It was caught early and no chemo.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #18
    Chewy2009 said:

    Are you still blessed?
    I am slightly behind you in radiation treatments. Today was day 20 - thirteen more to go. I have been doing very well until last night. I have been going into coughing fits and getting excess mucus in the back of my throat which make me cough more. My voice is gone. I am still working FT, because in general I do not classify myself as sick. I still feel very lucky compared to most everyone - I seem to be following in your path so just wanted to know how you were doing. I feel blessed also. It was caught early and no chemo.

    I don't know if it's blessed
    I don't know if it's blessed or luck. Does that mean I wasn't blessed because my side effects were so severe? But what I do know is that I am glad and very happy for you that your side effects are minimal and managable! Hope it continues!!
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #19
    sweetblood22 said:

    I don't know if it's blessed
    I don't know if it's blessed or luck. Does that mean I wasn't blessed because my side effects were so severe? But what I do know is that I am glad and very happy for you that your side effects are minimal and managable! Hope it continues!!

    Can't compare
    You went through something ten times worse than me! So just being here means you're blessed.

    And besides... Don't worry about it. I jynxed myself. For some reason after taking a 2 day weekend break, Mondays always seem hardest and side effects always seem to suddenly jump each Monday. Well right on queue with what everyone said about the second to last week, yesterday brought it to a new level. Now I've got the pain. My neck looks like somebody took a blow torch to it. And I left work at 2, went home and slept for 15 hours.

    So much for being lucky or blessed! ;-)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #20
    Bigfuzzydoug said:

    Can't compare
    You went through something ten times worse than me! So just being here means you're blessed.

    And besides... Don't worry about it. I jynxed myself. For some reason after taking a 2 day weekend break, Mondays always seem hardest and side effects always seem to suddenly jump each Monday. Well right on queue with what everyone said about the second to last week, yesterday brought it to a new level. Now I've got the pain. My neck looks like somebody took a blow torch to it. And I left work at 2, went home and slept for 15 hours.

    So much for being lucky or blessed! ;-)

    Aww. Sorry that it's getting
    Aww. Sorry that it's getting worse for you. I honestly would cry Monday mornings cause I didn't want to go. I would start to feel a little better Monday and I didn't want to get zapped again. By wednesday I would start getting nausea after rads. I was sleeping a lot too. But I was on 75mcgs of Fentanyl and then the benedryl they said to take. Forget it. I would get home and pass out and nap for three hrs. Ugh. Hang in there. I am impressed that you are working thru rads! I couldn't because my company would not bend any rules for me. (minimum 48 hrs a week, must work 8 hrs at least every fri, sat and Monday mandatory. Two 12 hr days. My job was too physical anyway. ) I was so fatigued and sick that I'm not sure I could have worked thru even with a desk job.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #21
    Bigfuzzydoug said:

    Can't compare
    You went through something ten times worse than me! So just being here means you're blessed.

    And besides... Don't worry about it. I jynxed myself. For some reason after taking a 2 day weekend break, Mondays always seem hardest and side effects always seem to suddenly jump each Monday. Well right on queue with what everyone said about the second to last week, yesterday brought it to a new level. Now I've got the pain. My neck looks like somebody took a blow torch to it. And I left work at 2, went home and slept for 15 hours.

    So much for being lucky or blessed! ;-)

    The Jinx
    Doug, Yeah I was the same way, I was worried about the jinx also. Like you, I didn't have it too bad during treatment, but didn't want to bring it up too much in case it turned around on me and bit me in the butt, so to speak. The worst part for me was the last week of treatment and the 1st week post tx. But 4-5 days after tx ended, I started to feel better and the improvement has continued pretty steadily since. I am now 8 weeks out and feeling good. (Hope I didn't just jinx myself!!) I hope your recovery mirrors mine, big guy.

    Have you continued working out/exercise during treatment? I tried to stay active during treatment and believed that helped with fatigue and recovery. Cheers

    Jimbo

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