ATTN: Paintslinger!!

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dunny
dunny Member Posts: 5
My husband was just diagnosed with hpv+ base of tongue cancer. His, too, was discovered through a bronchial cleft cyst. His, too, was needle biopsied with no signs of cancer. His, too, was removed and found to have a cancerous growth on the inner wall. And then the pet scan which lit up on the left side of the base of tongue. ( I believe yours was right. This seems to be the only difference.)

When I read your story on another post, it just seemed too weird to be true. We are headed for our 2nd opinion next week but the dr here wants to do 7 wks of radiation with chemo. We see the chemo doc later this week. I guess I really want to know what we should expect as far as side effects. And it seems you two are nearly identical as far as this stuff goes.

Any direction we could get from you will be so greatly appreciated.

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  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    side effects
    Hi dunny,

    I am sorry about the dicey situation you and your husband are in. If things haven’t moved fast enough for you lately, hold on, they are not going to slow down yet. Each of us here has conditions which are similar to your husband and we have each experienced a variety of side effects. It is best to be prepared, but don’t think you are guaranteed every side effect or the worst case of some side effect. You just need to take it as it comes, be prepared and be thankful if the tide goes your way.

    I’ll let others feel you in on the specific side effects, but be positive, you are in the right place for information and remember NONE of us asked to be here.

    Best,

    Matt
  • Paintslinger
    Paintslinger Member Posts: 70
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    Brachial celft cyst imposter
    Dunny,
    Yeah, it is wierd.Sorry that you have to be here, but glad that you found the site. My ENT doctor told me (as I'm sure you've already read) that the pathologists were just floored that there was cancer. How old is Hubby? Did you read my profile? Hubby, no doubt, is looking at the same treatment I got: seven weeks of chemo (cis-platen every three weeks) and radiation (every day except Saturday and Sunday). It's rough but he'll make it. I had my first post-cancer PET scan in April and was cancer-free. I saw that someone in one of these discusssions remarked that a doctor told them that if they were going to get cancer, this was the one to get (i.e., it responds well to treatment).
    I lost about 20-25 pounds and some hair (that grew back). I was nauseous, and had a hard time (that's an understatement) keeping anything (including water) down. They thought that I would probably need a feeding tube, but I didn't (thankfully). That metallic/salty taste after chemo was a real bummer, but the TOTAL loss of taste mid-way through was even worse. EVERYTHING tasted like wet cardboard (not that I've actually tasted wet cardboard).For a while I literally lived on Rice Crispies and Manhattan clam chowder because these were the ONLY things I could "almost" taste (sounds strange, but that's the only way I can describe it). Six months out I've gotten most of my taste back except for the "sweet": Completely gone.
    I still don't have much saliva in my mouth but I'm told that lasts quite a while. The mucous that accumulates in your throat after several radiation treatments is another very unpleasant aspect of this treatment, along with a chronically sore throat and (with me) the front of your neck looking as though you've had a skin graft. I'm just trying to let him know that this stuff is coming:It's rough, but he'll make it.
    THIS IS A BIGEE: Stay hydrated! Toward the end of my treatment, I had a hard time even keeping water down. I actually had to go over to the hospital to be hydrated three seperate times.
    And Hubby is going to be tired...a LOT. And I mean TIRED. Ask him if he's ever had a REALLY bad hangover. Then tell him to imagine feeling approximately fifty times (if you can even assign a number to something like this)that bad for days on end. I told one of my nurses that it was like being encased in plastic. She said that no one had ever described this fatigue that way, but it was only way I could express what I was feeling. But again, HE WILL GET THROUGH THIS!!!!!!
    Good luck and if there's anything I can do don't hesitate to ask,
    Paul (Paintslinger)
  • dunny
    dunny Member Posts: 5
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    Brachial celft cyst imposter
    Dunny,
    Yeah, it is wierd.Sorry that you have to be here, but glad that you found the site. My ENT doctor told me (as I'm sure you've already read) that the pathologists were just floored that there was cancer. How old is Hubby? Did you read my profile? Hubby, no doubt, is looking at the same treatment I got: seven weeks of chemo (cis-platen every three weeks) and radiation (every day except Saturday and Sunday). It's rough but he'll make it. I had my first post-cancer PET scan in April and was cancer-free. I saw that someone in one of these discusssions remarked that a doctor told them that if they were going to get cancer, this was the one to get (i.e., it responds well to treatment).
    I lost about 20-25 pounds and some hair (that grew back). I was nauseous, and had a hard time (that's an understatement) keeping anything (including water) down. They thought that I would probably need a feeding tube, but I didn't (thankfully). That metallic/salty taste after chemo was a real bummer, but the TOTAL loss of taste mid-way through was even worse. EVERYTHING tasted like wet cardboard (not that I've actually tasted wet cardboard).For a while I literally lived on Rice Crispies and Manhattan clam chowder because these were the ONLY things I could "almost" taste (sounds strange, but that's the only way I can describe it). Six months out I've gotten most of my taste back except for the "sweet": Completely gone.
    I still don't have much saliva in my mouth but I'm told that lasts quite a while. The mucous that accumulates in your throat after several radiation treatments is another very unpleasant aspect of this treatment, along with a chronically sore throat and (with me) the front of your neck looking as though you've had a skin graft. I'm just trying to let him know that this stuff is coming:It's rough, but he'll make it.
    THIS IS A BIGEE: Stay hydrated! Toward the end of my treatment, I had a hard time even keeping water down. I actually had to go over to the hospital to be hydrated three seperate times.
    And Hubby is going to be tired...a LOT. And I mean TIRED. Ask him if he's ever had a REALLY bad hangover. Then tell him to imagine feeling approximately fifty times (if you can even assign a number to something like this)that bad for days on end. I told one of my nurses that it was like being encased in plastic. She said that no one had ever described this fatigue that way, but it was only way I could express what I was feeling. But again, HE WILL GET THROUGH THIS!!!!!!
    Good luck and if there's anything I can do don't hesitate to ask,
    Paul (Paintslinger)

    Wow!
    Thanks for the quick responses from both of you! Technology is truly an amazing thing! I will be sure to show this to my DH. He is 50, btw. Our doc made it very clear that it will be very very rough. He is not sugar-coating it at all, which I appreciate. What would you say was your over all time line? I am seeing that most patients start feeling the effects about 3 weeks in, get really bad around 5 weeks, and feel the effects until about a month after treatment ends. Would you say that seems to be about right?

    Thanks to you both and happy fourth!
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    dunny said:

    Wow!
    Thanks for the quick responses from both of you! Technology is truly an amazing thing! I will be sure to show this to my DH. He is 50, btw. Our doc made it very clear that it will be very very rough. He is not sugar-coating it at all, which I appreciate. What would you say was your over all time line? I am seeing that most patients start feeling the effects about 3 weeks in, get really bad around 5 weeks, and feel the effects until about a month after treatment ends. Would you say that seems to be about right?

    Thanks to you both and happy fourth!

    wow is right
    Hi dunny,

    You are close enough on the timeline, what is a week sooner here or week later there, especially between friends. I have to agree with you, Paintslinger did not sugar coat anything.

    Both of you will be alright, there are plenty of people to add words of advice around here, just ask.

    Best,

    Matt
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    dunny said:

    Wow!
    Thanks for the quick responses from both of you! Technology is truly an amazing thing! I will be sure to show this to my DH. He is 50, btw. Our doc made it very clear that it will be very very rough. He is not sugar-coating it at all, which I appreciate. What would you say was your over all time line? I am seeing that most patients start feeling the effects about 3 weeks in, get really bad around 5 weeks, and feel the effects until about a month after treatment ends. Would you say that seems to be about right?

    Thanks to you both and happy fourth!

    Hi Dunny
    Base of tongue stagee III HPV16+ with one lymph node invovled.

    I had no surgery or plantinum chemo / just raidation and Erbitux.

    I began tx Nov 2011 and finshed tx January 2012. I had a few stops due to burnig of my neck from radition. Mine was pretty bad - you can see my pic under my profile.

    I am now 6+ months out of treatmnet and have 90% of my taste buds back, but no spicy food for me yet :) I am on NO pain meds and I had my feeding tube removed aove

    Bottom line is you have to hurt to get better ...and better


    Best,

    Tim
  • Paintslinger
    Paintslinger Member Posts: 70
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    dunny said:

    Wow!
    Thanks for the quick responses from both of you! Technology is truly an amazing thing! I will be sure to show this to my DH. He is 50, btw. Our doc made it very clear that it will be very very rough. He is not sugar-coating it at all, which I appreciate. What would you say was your over all time line? I am seeing that most patients start feeling the effects about 3 weeks in, get really bad around 5 weeks, and feel the effects until about a month after treatment ends. Would you say that seems to be about right?

    Thanks to you both and happy fourth!

    Right back at ya
    Dunny,
    Happy fourth to you guys too. I hope I wasn't too harsh with my description of the trip that BOTH of are about to embark on. Just wanted to add that the timeline is about right and Hubby's cancer is treatable and if a dead horse could winny, this one would: It's going to be one hell of a ride for the BOTH of you but you'll make it through this. The treatment is rough, but very effective for the beast your husband and I have found ourselves facing. Sounds like he's really lucky to have you.
    Take care,
    Paul