What's next?

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yensid683
yensid683 Member Posts: 349
edited June 2012 in Head and Neck Cancer #1
I'm new to these boards and have been reading threads and getting good information and now am at a point in my treatment where I have questions that are not well answered by the professionals.

I have SCC, HPV+, primary tumor is on the base of the tongue with involvement of the left cervical lymph nodes, put at stage IVa by my medical oncologist.

Initial treatment was induction chemo using TPF, it was supposed to be three rounds, but side effects from the first round changed that to a concurrent Erbitux and radiation. I'm about to hit the half way point in the rads and wonder what will be coming next?

I'm well into the side effects of the treatment, my sense of taste has been so badly altered that eating anything is just the nastiest experience that anyone can imagine. I've read posts that this may be temporary and I hope it will be. I'm maintaining my weight and nutrition with feedings through my PEG tube (thank goodness)and I force myself to eat small things and drink anything and everything I can. I am NOT going to lose my ability to swallow, no matter how much it hurts to do so.

My soft palate is a wreck from the rads, raw as a freshly skinned knee and swallowing is like dragging said knee over crushed glass, but I keep on doing it.

My "what's next" question is - will this get worse?

I have scripts for pain medications, lortab elixir and possibly fentenyl (?) but will I need that level of pain med? How long, once rads are done, will my sense of taste be wrecked? Will my ability to eat come back? Will my throat feel 'normal'? Will I be able to maintain my weight without the PEG tube?

I'm sorry to ramble, but one last ask, how will I know that the treatments have worked? I am encouraged by my oncologist's written remarks on the consent forms, that the objective of the treatments is a cancer cure. Given the vacillating nature of physicians and their usual non-committal responses, I think things will turn out okay, but it would be nice to hear of others experiences.

thanks

Peter - albany NY

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome Peter....
    From my histiory of STGIII SCC Tonsils...

    Also, the three rounds of chemo and seven weeks of concurrent carboplatin and daily rads.

    At mid point, you are just as would be expected.

    For me it didn't really get any worse, but it does last well into 3 - 4 weeks post rads...you are still cooking as we say.

    As for taste and saliva, most get some, to none, to nearly all back. I am one of the lucky that has regained around 95% back on the saliva and 100% on taste.

    That has been a very slow progression though, nealry two years for the level I am now (I'm three years post Tx).

    But after a month or two, you should start noticing improvement.

    Here is a link to our SuperThread that has tons of great info;

    SuperThread

    Good luck, and hang in there, it gets better....

    John
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Skiffin16 said:

    Welcome Peter....
    From my histiory of STGIII SCC Tonsils...

    Also, the three rounds of chemo and seven weeks of concurrent carboplatin and daily rads.

    At mid point, you are just as would be expected.

    For me it didn't really get any worse, but it does last well into 3 - 4 weeks post rads...you are still cooking as we say.

    As for taste and saliva, most get some, to none, to nearly all back. I am one of the lucky that has regained around 95% back on the saliva and 100% on taste.

    That has been a very slow progression though, nealry two years for the level I am now (I'm three years post Tx).

    But after a month or two, you should start noticing improvement.

    Here is a link to our SuperThread that has tons of great info;

    SuperThread

    Good luck, and hang in there, it gets better....

    John

    Welcome.
    Welcome to the board Peter, sorry you find yourself here but you'll be glad
    you did as most of your questions will be answerd. There is an abundance
    of knowledgable within the "Family" of people here.
    I was a high stage II HPV+ tonsil cancer no lymph involved, and I only had
    33 rad treatments. I pretty much sailed through it with just a few side effects,
    no taste, sore throat, fatigue nothing major. Now I am almost 2 months out
    and things seem a little worse, the soft pallet is as you describe and I cannot breath
    through my nose. The dry mouth is driving me crazy. I am still eating regular
    foods ( some with weird tastes) .I never had a peg but I lost 50lbs ( I could afford to)
    I can say it gets better but how long I don't know, everyone is different, Skiffin got
    most of everything back which is promising but it took alll of two years.
    Just stay positive it will get better.

    God bless
    Tonsil Dad,

    Dan.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    I'm so glad you decided to post, Peter.....
    this is a wonderfully support group of folks....with a lot of practical knowledge of how to get thru this disease as best as possible.

    I'm still being treated, as you are...so it's hard to predict how bad things might get...some people have a very hard time, others, like me...don't have it so bad (knock on wood, so far) :).

    I'm glad you have pain meds on hand, even if you never use them, you've got them. That's how I feel about my PEG tube....it's my safety insurance, and tho I haven't had to use it often, I'd be insecure without it.

    You'll hear that everyone is different...a lot the same, yet different. But having these people here to support you thru the more difficult times is a valuable resource.

    p
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    bad not terrible
    Hi Peter,

    I am stg III, scc, hpv+, with cancer lower tongue and 1 (cancerous, 3cm) lymph node removed from neck, left side. Treatment 35 rads with a chaser of 8 rounds of Erbitux, and I feel marvelous, well almost. On Friday I will be 12 weeks post treatments.

    Taste buds took a snooze at week 3 and stayed asleep till the past few weeks. Salt is coming back much faster than sweet. Prior to my recent developments I would say throw all food away and get me a smoothie. I am having some noodles tonight, which being a starch was on my extremely taboo list. So see it does get better. Believe you me, I love to eat and I thought it was all over for food and me, but not now.

    Do you have a heck of a rash on your torso and face, I did.

    Never needed much pain medicine but always had a supply just in case. Now magic mouth wash is another story. I blasted through 5 or 6 bottles of the stuff and loved every minute of it. It helped me swallow and sleep.

    Got terrible neck burn weeks 6, 7 & 8. I slathered on Solver Sulfadiazine tell it looked like I was wearing a white turtle neck. The burn was my worst pain, but with the cream it was no sweat.

    Prepping for radiation got more challenging with throat swelling up and the mucous, but after getting on the table I only had to ask one time to get back up and gargle, spit, and drink one more time. You will have weeks to figure it all out.

    Hope this helps, best of luck to you Peter

    Matt - Albany, Oregon
  • Mikemetz
    Mikemetz Member Posts: 465 Member
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    It probably IS working...
    ...but it's too early to tell. There is a very good chance that your rads + chemo are working--the success rate is very good these days. The problem is that even if your tumor is shrinking, you won't be able to tell because of the swelling from the rads. At some point they'll do a scan (don't recall exactly what kind)and verify that the tumor is shrinking. Until then, just have faith that it's working and don't let doubt take over your thinking and emotions.

    As for the side effects, being half way through, you can expect them to get worse before they get better. And, they will continue to get a little worse even after your treatments end. But one day you'll wake up feeling a little better than the day before, the pain and swelling will be slightly less, etc. and you'll have turned the corner on the side effects. There is no way to know how long the immediate side effects will linger, and which ones might hang around for a long time--or forever. The only for-sure thing is that everyone's case will be different and each one of us needs to know how our body is reacting, and what to do about it.

    Mike
  • yensid683
    yensid683 Member Posts: 349
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    CivilMatt said:

    bad not terrible
    Hi Peter,

    I am stg III, scc, hpv+, with cancer lower tongue and 1 (cancerous, 3cm) lymph node removed from neck, left side. Treatment 35 rads with a chaser of 8 rounds of Erbitux, and I feel marvelous, well almost. On Friday I will be 12 weeks post treatments.

    Taste buds took a snooze at week 3 and stayed asleep till the past few weeks. Salt is coming back much faster than sweet. Prior to my recent developments I would say throw all food away and get me a smoothie. I am having some noodles tonight, which being a starch was on my extremely taboo list. So see it does get better. Believe you me, I love to eat and I thought it was all over for food and me, but not now.

    Do you have a heck of a rash on your torso and face, I did.

    Never needed much pain medicine but always had a supply just in case. Now magic mouth wash is another story. I blasted through 5 or 6 bottles of the stuff and loved every minute of it. It helped me swallow and sleep.

    Got terrible neck burn weeks 6, 7 & 8. I slathered on Solver Sulfadiazine tell it looked like I was wearing a white turtle neck. The burn was my worst pain, but with the cream it was no sweat.

    Prepping for radiation got more challenging with throat swelling up and the mucous, but after getting on the table I only had to ask one time to get back up and gargle, spit, and drink one more time. You will have weeks to figure it all out.

    Hope this helps, best of luck to you Peter

    Matt - Albany, Oregon

    Matt:
    my taste buds starting

    Matt:

    my taste buds starting going to sleep in the first week of rads, surprisingly, not in the first two weeks of erbitux, but the rash did come on strong. My skin looked like I was a teenager again, not one of my favorite memories either.

    I do need the pain med for when I need to 'hawk' out the crap in my throat. I liken my soft palate to feeling like a freshly skinned knee, and the 'hawk' as feeling like dragging said knee over hot crushed glass.

    My neck skin is fortunately not a problem, I use aloe three times a day, especially just after rads and so far, no 'sunburn' yet. Not that it won't show, but as I am discovering, it is different for everyone.

    Here's to recovery for all of us!
  • yensid683
    yensid683 Member Posts: 349
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    Mikemetz said:

    It probably IS working...
    ...but it's too early to tell. There is a very good chance that your rads + chemo are working--the success rate is very good these days. The problem is that even if your tumor is shrinking, you won't be able to tell because of the swelling from the rads. At some point they'll do a scan (don't recall exactly what kind)and verify that the tumor is shrinking. Until then, just have faith that it's working and don't let doubt take over your thinking and emotions.

    As for the side effects, being half way through, you can expect them to get worse before they get better. And, they will continue to get a little worse even after your treatments end. But one day you'll wake up feeling a little better than the day before, the pain and swelling will be slightly less, etc. and you'll have turned the corner on the side effects. There is no way to know how long the immediate side effects will linger, and which ones might hang around for a long time--or forever. The only for-sure thing is that everyone's case will be different and each one of us needs to know how our body is reacting, and what to do about it.

    Mike

    I sure hope so....
    I can't see going through all of this only to have this little @#$%@!@ come back, though I know it is possible. I spoke with my Oncologist on how we know it is working and he said that we'll do a scan three months after the last rad, evidently it takes that long for the effects of the rads to complete their work and things to return to normal. I sure hope that things come back a little quicker, I'm hoping Matt is right that I'll get some taste back and be able to enjoy food again.

    I'm taking your advice and will look forward to the morning when instead of waking up feeling so bad, I'll wake up feeling 'not so bad' and won't that be a day to celebrate>
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
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    Can't add much
    Peter,

    You received allot of good information already, so I can't really add too much to that. Matt already mentioned the Magic Mouthwash prior to eating. I will mention a solution of Baking soda and Salt. 1 teaspoon of Baking Soda and 1 teaspoon of Salt mixed in 1 Quart of room temperature water. Sip, rinse and gargle just prior to eating orally helps semi-numb your mouth and throat. I would spit out most of the solution and then swallow the tiny bit I kept in my mouth so it would run down my throat. It helped.

    If at all possible, stay ahead of the pain/ discomfort with the pain med's. I didn't start using the pain med's until about week 5 of the Radiation and a week or two afterwards. My taste started to return slowly about week 4 or 5 after the final treatment.

    Glad you found the site, sorry you have to be here at all, but there are allot of people that have traveled this road and are here to help you along the way.

    My Best to You and Everyone Here
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    MarineE5 said:

    Can't add much
    Peter,

    You received allot of good information already, so I can't really add too much to that. Matt already mentioned the Magic Mouthwash prior to eating. I will mention a solution of Baking soda and Salt. 1 teaspoon of Baking Soda and 1 teaspoon of Salt mixed in 1 Quart of room temperature water. Sip, rinse and gargle just prior to eating orally helps semi-numb your mouth and throat. I would spit out most of the solution and then swallow the tiny bit I kept in my mouth so it would run down my throat. It helped.

    If at all possible, stay ahead of the pain/ discomfort with the pain med's. I didn't start using the pain med's until about week 5 of the Radiation and a week or two afterwards. My taste started to return slowly about week 4 or 5 after the final treatment.

    Glad you found the site, sorry you have to be here at all, but there are allot of people that have traveled this road and are here to help you along the way.

    My Best to You and Everyone Here

    Hi Peter...
    Welcome. Sorry I did not respond sooner ..work has been crazy for me as I live in a resort town.

    I would like to say you and I almost 100% identical.

    I was Base of Tongue (left side) and one lympn node involved (left side) and too was HPV+ stage III.

    I never had the old fashion chemo drugs, just Erbitux and radiation. I had feeding tube in the stomach BEFORE any treatments began (highly suggested by the onc so I did as they suggested) and I still lost 70 lbs.

    My last rad was January 20th and I believe based on my scans scopes and what the doctors tell me I am doing well.

    I did not lose taste until rads were nearly done, but my lympn node did not shrink until rads were nearly done (not that those two things together matter). On May 7th I had my first post PET / CT scan and onc. said it looked really good. My ENT did a scope the same day as well as finger exam ..said it looked really good and now 2 scopes later in addition..things are still looking good.

    As for will it get worse. Here goes the line you read so much here "everybody is different" bt it's true, so we have to say it. Most likely you will get worse. My worst month was the very first month AFTER my last rad. Pain and sleeping the whole month. Just could not do anything. The mucous was horrible. (I'm only sharing so you know my experience, not to be a downer) ..the 2nd month after rads was not much better, the 3rd a bit bettter ..than one day in the later part of the 3rd month it was almost as if overnight the mucous went away...the pain began to temper off and now almost a full 5 months after rads I am feeling MUCH better. Much less fatigue lately.....not so achey all the time ...but I do have dry mouth still (not as bad as it was) ...I did get my taste back about 2 months ago...If I had to make an educated guess I would say I am 90% back on taste, but fruit, especially citrus is out still and I still can't do spicey of any kind.

    Prayers for you Peter...the bottom line is even if it has to get worse before better...that's what it takes to get well and one day soon (never soon enough) you will be sharing your experience with someone right where you are now :):)

    Best,

    Tim