Sharing some good news!

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1
I have a couple pieces of good news, and I thought I'd share in case it can help brighten up some folks who are just starting treatment.

I'm through the first week of treatment and into the second. When they checked my blood before my second chemo treatment, the platelets, white blood cell count and kidney function all came back 100% normal. That's great not just because it means there's no toxicity (yet) but also because it means I'm more likely to make it through the next 5 chemo treatments.

I'm reacting strongly to the radiation, in good, bad and weird ways. My throat is already starting to burn, and I'm not even half through the second week! I also have a pretty dry mouth (feels like less than half normal saliva) which I thought didn't really start until the third week or so. On the good side, the tumor is definitely shrinking. I used to feel it pressing down on the back of my tongue, and that's almost all gone. On the weird side, during radiation each day, I can feel jumping under the skin underneath my chin on both sides... which is where the one active and two "suspicious" lymph nodes are located. I asked the radiation techs if that was normal, and they looked surprised and said no, it's not. I like to think it's the cancer cells going, "NOOOOOOOO!" :-)

The Emend is doing better for me in terms of nausea, but it's not 100%. Instead of feeling nauseous, I feel like I have a sour stomach and a mild case of motion sickness. I think "woozy" is the best way to put it. It's WAY better than last week, though, and I'll ask the nurse if there are any tweaks we can make. I think the medical marijuana will probably fix that too.

And here's the best news: despite the strong reaction to radiation, I have no mouth sores. I can tell that I totally SHOULD have them right now. I feel hot spots starting, and there are whole sections of my cheeks where the skin is kind of peeling off or feeling rough and degraded. But NO SORES. I'm using a salt and baking soda rinse a couple times a day, and Manuka honey once a day... but I think it's the MuGard. I'd encourage everyone to talk to your doctor about it. There is a form you can fill out here: http://www.mugard.com/how-to-order-mugard-healthcare-professionals/. Take it to your doctor and ask him/her to complete it and then you can fax it. Your insurance probably won't cover it, but MuGard wants to get the word out so there is a chance they will send it to your doctor FREE. The studies show GREAT effects against mucositis, and I'm hoping it continues to do great things for me.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Good News...
    Congrats.....

    Not to bust your bubble, but more than likely some of that might change.

    I only say this so that if and when, you won't get discouraged. I can't remember off hand the type of chemo you are having.

    For me, it was nine weeks (three week cycles) of cisplatin, taxotere and 5FU. Then seven weeks of weekly carboplatin concurrent with the daily rads.

    Along the way, my platlets dropped from around 202, to less than 90 something...and that was even with getting the Neulasta injections...blood (WBC and RBC) dropped from around 5+ to below 2.

    The good news on that, even at that low, I was still OK for the chemo with no delay.

    I also had skin discoloration and peeling, but no open sores, and no mouth sores. My rinse was baking soda and hydrogen peroxide in a little water. I never used MuGard, or anything similar.

    The worse time for your rads doesn't usually start until around the 3-4th week in, lasting until 3-4 weeks post treatment. Even though you are finished, the effects (or cooking) are still going on for a good month post treatment.

    Again, just saying..., and you might not get any worse for wear than now... Even so, if you do...it's just part of the process. You too will survive and get through this.

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Good for you.....!!
    You are about 10 days ahead of me...did you start witht he soda/salt rinse right away during rads? I've only had two, with my third tomorrow...thinking that maybe this is the way to get ahead of the game.

    I tried the link for the Mugard, it wouldn't come up, but did find a place to order the brochure, and did so. I will take that into my Dr. My nose part on my mask is tight, so if it ever gets hard to breath thru my mouth, I don't know what I'll do.

    What does Manuka honey do? Do you get it from the Health Food store?

    I feel like you after the chemo...not pukey, but woozy/wimpy...I just want to sleep...sure it's the anti-nausea drugs. Trying to eat is a chore because my stomach says "no thanks"...did get my smoothie in this morning, and some homemade noodles tonight...and some manderin oranges with jello...mmmmmmm, they really tasted good...Now I still have to walk the dog, and then beddie bye...for the 14th hour today...give or take :).

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    phrannie51 said:

    Good for you.....!!
    You are about 10 days ahead of me...did you start witht he soda/salt rinse right away during rads? I've only had two, with my third tomorrow...thinking that maybe this is the way to get ahead of the game.

    I tried the link for the Mugard, it wouldn't come up, but did find a place to order the brochure, and did so. I will take that into my Dr. My nose part on my mask is tight, so if it ever gets hard to breath thru my mouth, I don't know what I'll do.

    What does Manuka honey do? Do you get it from the Health Food store?

    I feel like you after the chemo...not pukey, but woozy/wimpy...I just want to sleep...sure it's the anti-nausea drugs. Trying to eat is a chore because my stomach says "no thanks"...did get my smoothie in this morning, and some homemade noodles tonight...and some manderin oranges with jello...mmmmmmm, they really tasted good...Now I still have to walk the dog, and then beddie bye...for the 14th hour today...give or take :).

    p

    MuGard
    Here's the link P...


    MuGard

    My rinsed actually consisted of baking soda and hydrogen peroxide in a little water several times a day...

    Never any mouth sores and actually helped with the paste like taste you more than likely will get eventually.

    Even water tasted like sweat..kinda nasty.

    Best,
    John
  • Laralyn
    Laralyn Member Posts: 532
    #5
    Skiffin16 said:

    MuGard
    Here's the link P...


    MuGard

    My rinsed actually consisted of baking soda and hydrogen peroxide in a little water several times a day...

    Never any mouth sores and actually helped with the paste like taste you more than likely will get eventually.

    Even water tasted like sweat..kinda nasty.

    Best,
    John

    Thanks for posting the link!
    Thanks for posting the link! How did you get it to paste as an actual link instead of text? You can tell I'm new. :-)

    You can get Manuka Honey at a health food store, like Whole Foods. Look for real Manuka Honey from New Zealand. Here's an article on it from LiveStrong: http://www.livestrong.com/article/91676-use-manuka-honey/. There was a study that completed late last year in its effectiveness, but no results are out yet. It's an organic substance (just a special kind of honey) and not that expensive so IMO, no harm in trying!

    I use the salt and baking soda rinse too, and John's right--it REALLY freshens my mouth. It's better for that than any dry mouth rinse. It feels like it resets my mouth back to a normal taste and state for a short time.

    It's definitely worth following up on the MuGard. Here's a link to preliminary results from their latest study, specifically for H&N cancer patients: http://markets.on.nytimes.com/research/stocks/news/press_release.asp?docTag=201204170830PR_NEWS_USPRX____NY88414&feedID=600&press_symbol=42293.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Laralyn said:

    Thanks for posting the link!
    Thanks for posting the link! How did you get it to paste as an actual link instead of text? You can tell I'm new. :-)

    You can get Manuka Honey at a health food store, like Whole Foods. Look for real Manuka Honey from New Zealand. Here's an article on it from LiveStrong: http://www.livestrong.com/article/91676-use-manuka-honey/. There was a study that completed late last year in its effectiveness, but no results are out yet. It's an organic substance (just a special kind of honey) and not that expensive so IMO, no harm in trying!

    I use the salt and baking soda rinse too, and John's right--it REALLY freshens my mouth. It's better for that than any dry mouth rinse. It feels like it resets my mouth back to a normal taste and state for a short time.

    It's definitely worth following up on the MuGard. Here's a link to preliminary results from their latest study, specifically for H&N cancer patients: http://markets.on.nytimes.com/research/stocks/news/press_release.asp?docTag=201204170830PR_NEWS_USPRX____NY88414&feedID=600&press_symbol=42293.

    HTML
    You just need to play around with the HTML code and you can do some limited things on here;

    NY Times

    JG
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #7
    Skiffin16 said:

    HTML
    You just need to play around with the HTML code and you can do some limited things on here;

    NY Times

    JG

    MuGard
    I had a case of MuGard delivered to my house and I used it on and off (not as much
    as I should) and I have not been plagued with mouth sores as of yet (2 weeks post rads)
    just one ulcer at the side of the tongue that doesn't really hurt.
    I also use bicarb/salt and aloe which works wonders but remember not all aloe's are
    equal so be careful.

    God bless
    Tonsil Dad,

    Dan.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    Tonsil Dad said:

    MuGard
    I had a case of MuGard delivered to my house and I used it on and off (not as much
    as I should) and I have not been plagued with mouth sores as of yet (2 weeks post rads)
    just one ulcer at the side of the tongue that doesn't really hurt.
    I also use bicarb/salt and aloe which works wonders but remember not all aloe's are
    equal so be careful.

    God bless
    Tonsil Dad,

    Dan.

    Dan...what are the differences in aloe?
    I picked some up at the health food store, just saw it and bought it...now I'm thinking...uh oh...what should I have been looking for?

    Laralyn...do you just eat a teaspoon of honey, or put it in tea...how do you apply it to your mouth?

    p
  • Laralyn
    Laralyn Member Posts: 532
    #9
    phrannie51 said:

    Dan...what are the differences in aloe?
    I picked some up at the health food store, just saw it and bought it...now I'm thinking...uh oh...what should I have been looking for?

    Laralyn...do you just eat a teaspoon of honey, or put it in tea...how do you apply it to your mouth?

    p

    I take a teaspoon of honey
    I take a teaspoon of honey and hold it in my mouth until it starts to melt. Then I roll it around and swish with it for about 30 seconds, and swallow. Bonus calories (for those of us who need them)! :-)
  • KareGiver
    KareGiver Member Posts: 301 Member
    #10
    Laralyn said:

    I take a teaspoon of honey
    I take a teaspoon of honey and hold it in my mouth until it starts to melt. Then I roll it around and swish with it for about 30 seconds, and swallow. Bonus calories (for those of us who need them)! :-)

    Yes!
    Love good news!
  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    Laralyn said:

    I take a teaspoon of honey
    I take a teaspoon of honey and hold it in my mouth until it starts to melt. Then I roll it around and swish with it for about 30 seconds, and swallow. Bonus calories (for those of us who need them)! :-)

    Thanks Laralyn.....
    The honey is on my "get list" for tomorrow....as well as a couple other things from the health food store.

    p
  • Laralyn
    Laralyn Member Posts: 532
    #12
    phrannie51 said:

    Thanks Laralyn.....
    The honey is on my "get list" for tomorrow....as well as a couple other things from the health food store.

    p

    It's funny how taste
    It's funny how taste changes. I'm left with mostly sweet taste buds at this point, so the taste of the honey was pretty overwhelming! I may start watering it down just a bit with a little warm water.
  • Grandmax4
    Grandmax4 Member Posts: 723
    #13
    Sharing some good news!
    Very happy for you and the good news!! Praying the bad news will turn to good

Discussion Boards