No go for removal of tumor, Rads next

lizziek
lizziek Member Posts: 27
in Head and Neck Cancer #1
Well I had my surgery yesterday which was suppose to take out my supralaryngeal tumor with the transoral robotic surgery at Mt. Sinai with a neck resection for the two suspected nodes. They had to put the breathing tube in while I was still awake, real scary but the anesthesiologist was very good, used a ton of local and quickly got me under. I started to wake up and realized my neck wasn't cut. Next thing the surgeon leans over says squamous cell cancer, I only biopsied the tumor and couldn't remove it and you will need to go for radiation. Real bummer for me and my family. Nurses in PACU were good and let me stay till mid afternoon till I felt I get up.

Since they offered me radiation/chemo only a couple of weeks ago, I guess this isn't that much of a change in plans. I am recovering in Brooklyn at my daughters place and have already set up an appointment at Mt. Sinai on Monday. No use going back to Albany and then turn around in a couple of days to come back here.

The dry mouth I had yesterday from the anesthesia and the mouth sores from the procedure are giving me a preview of coming events. I still can't get much down my sore throat and the recommendations on foods from this site have helped greatly. Just had a great avocado and banana smoothie.

I could have the treatment in Albany or in NYC (they have Hope Lodge for out of towners) so I will check out my local oncology practice when I get home. I also plan to get a consult at Mass General since they have the proton therapy which I hope I might qualify for. Supposedly that therapy delivers the same radiation to the tumor but less to the surrounding tissue. Only about 20 centers in the world.

Any advice on the best places for radiation/chemo that minimize side effects, send them on. My cousin, who took care of both her parents till they died (her father had colon cancer),has volunteered to be my caregiver through treatment wherever I go. That will take a big load off of my husband so he can work.

You'll be hearing more from me now that I officially have head and neck cancer.

Thanks for being here

Lizzie

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
    Lizzie
    Sorry to hear you are "officially" now one of us, but welcome, again. Hey- you gave it a chance with Dr. Genden and the robotic, and it mighta been a better solution, but it is what it is, Lizzie. Both of my tumors were aced with the C&R two years ago in the little old Quad Cities. It would seem you have a known Primary, so that's a good thing. Not much of a consolation, but at least now you know where you stand. The proton thing might make a lotta sense with a known Primary, as that Primary gives them a main target to hit. By my way of thinking- that's a good thing, which might make it all more patient-friendly for you. Hoping that's the case.

    As for us "being here-" we're not going anywhere, Lizzie, other than where we want to be. And that means being here for people like you, and times like this. Nutrition, and keeping it in the Positive, are your new keys. And,

    Believe

    kcass
  • adventurebob
    adventurebob Member Posts: 691
    #3
    Sorry
    Sorry that didn't work out like we had all hoped Lizzie. We'll all be here for you as you go through the next phase. I just finished reading the book "Life over cancer" by Keith Block of the Block Center for Integrative Cancer Treatment. I recommend it and if I had to do everything over again I would go there. It's in Evanston Illinois and is famous for minimizing side effects through alternative treatments. I am in a group with a man who received treatment there. He reports minimal side effects and did very well with treatment.
    It's time to get tough and kick some cancer ****. Lifting you up,

    Bob
  • Scambuster
    Scambuster Member Posts: 973
    #4
    IMRT theory
    Lizzie,

    Check if you can get IMRT which is the later machine they use (Intensity Modulated Radiation Therapy). More accurate targeting and less collateral damage to surrounding areas.

    I had IMRT + Erbitux for SCC Left Tonsil - Aug 2009.

    You may also looking into taking some of the following concurrently:

    Melatonin - to reduce the side effects and increase efficacy: http://www.lef.org/magazine/mag2004/jan2004_report_melatonin_01.htm

    Turmeric: to reduce the side effects and increase efficacy http://www.sciencedaily.com/releases/2010/10/101019111712.htm

    You should seek advice from a good Naturopath who can work with (or backstage from) your Oncological team.

    Also ask your Doctor about Amifostine, which i thought to protect your Salivary glands during rads. i was not offered this unfortunately.

    There are others you may wish to consider.

    Regds
    Scam
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #5
    Scambuster said:

    IMRT theory
    Lizzie,

    Check if you can get IMRT which is the later machine they use (Intensity Modulated Radiation Therapy). More accurate targeting and less collateral damage to surrounding areas.

    I had IMRT + Erbitux for SCC Left Tonsil - Aug 2009.

    You may also looking into taking some of the following concurrently:

    Melatonin - to reduce the side effects and increase efficacy: http://www.lef.org/magazine/mag2004/jan2004_report_melatonin_01.htm

    Turmeric: to reduce the side effects and increase efficacy http://www.sciencedaily.com/releases/2010/10/101019111712.htm

    You should seek advice from a good Naturopath who can work with (or backstage from) your Oncological team.

    Also ask your Doctor about Amifostine, which i thought to protect your Salivary glands during rads. i was not offered this unfortunately.

    There are others you may wish to consider.

    Regds
    Scam

    Amifostine
    I was given this during treatment. Thought, though, if was for Thrush. Must've been something else. Think the Amifostine was the swish and spit. Thanks for reminding me, Scam.

    And, Lizzie- this is the sort of thing to write down for future reference you may want to ask your Dr. about. Treatment centers are typically close, but not exactly on the same page. Sweets got her Superthread with a long list of places to visit for different specifics, but it is typical when treatment starts to get overwhelmed by all they put on your table at once.

    kcass
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    Kent Cass said:

    Amifostine
    I was given this during treatment. Thought, though, if was for Thrush. Must've been something else. Think the Amifostine was the swish and spit. Thanks for reminding me, Scam.

    And, Lizzie- this is the sort of thing to write down for future reference you may want to ask your Dr. about. Treatment centers are typically close, but not exactly on the same page. Sweets got her Superthread with a long list of places to visit for different specifics, but it is typical when treatment starts to get overwhelmed by all they put on your table at once.

    kcass

    Amofostine
    AmofostIne is an injection that you get 30 minutes before table time. It is supposed to help preserve salivary gland function.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Kent Cass said:

    Amifostine
    I was given this during treatment. Thought, though, if was for Thrush. Must've been something else. Think the Amifostine was the swish and spit. Thanks for reminding me, Scam.

    And, Lizzie- this is the sort of thing to write down for future reference you may want to ask your Dr. about. Treatment centers are typically close, but not exactly on the same page. Sweets got her Superthread with a long list of places to visit for different specifics, but it is typical when treatment starts to get overwhelmed by all they put on your table at once.

    kcass

    Amifostine
    I had Amifostine injections in my stomach each day 15 - 20 minutes before rads.

    It's primarily for reduction of the thick ropey phlegm that can develope once your throat starts drying out and saliva starts reduction.

    It is also thought to help regaining saliva production after rads.

    I'm nearly two years out and can only speak for myself. I have regained 90% plus of both taste and salivary function.

    The Amifostine can be brutal though. I had dry itchy patches where the injections were. They rotatated the injections trying to relief the areas previously injected.

    Also, very few make all 35+ injections before having some reaction.

    Kent, if you remember with me, I started getting sever fever swings. Later in the evening around day 28 of 35, my fever rose to 102.7. Extreme and also very important to check with your MD's if this high. They advised me in the beginning that anything above 100.5 to call in, don't wait. Some people have thought on waiting and calling the next morning..bad dicision, they ended up hospitalized or even worse.

    Anyways, after a dew days we figured out it was the Amifostine I was reacting to and stopped them around day 32 of 35.

    I believe they helped me and if had to do it over, I would still stick with that decision...

    Best,
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #8
    Skiffin16 said:

    Amifostine
    I had Amifostine injections in my stomach each day 15 - 20 minutes before rads.

    It's primarily for reduction of the thick ropey phlegm that can develope once your throat starts drying out and saliva starts reduction.

    It is also thought to help regaining saliva production after rads.

    I'm nearly two years out and can only speak for myself. I have regained 90% plus of both taste and salivary function.

    The Amifostine can be brutal though. I had dry itchy patches where the injections were. They rotatated the injections trying to relief the areas previously injected.

    Also, very few make all 35+ injections before having some reaction.

    Kent, if you remember with me, I started getting sever fever swings. Later in the evening around day 28 of 35, my fever rose to 102.7. Extreme and also very important to check with your MD's if this high. They advised me in the beginning that anything above 100.5 to call in, don't wait. Some people have thought on waiting and calling the next morning..bad dicision, they ended up hospitalized or even worse.

    Anyways, after a dew days we figured out it was the Amifostine I was reacting to and stopped them around day 32 of 35.

    I believe they helped me and if had to do it over, I would still stick with that decision...

    Best,
    John

    Stand corrected
    That I do. The Amifostine name was close-sounding, or so I thought. Know I wasn't thinking of the NYStatin, but the Amifostine sure looks like the name on that large bottle of swish and spit stuff. I, too, got the Emend, but never had any injections before my rads.

    With me, John, I was advised by an Onco Nurse about the 101, and how anything under is considered typical with the body dealing with the Cisplatin/FU-5, mostly. ER Dr. also advised the same, but that's likely what the Onco Dr. told him. And, yes, that is when I spent the four nights in the hospital at the start of week #6. Maybe the 101 is just what the QC Onco office views as breakpoint, rather than the standard. Also, could just be in regards to my Chemo delivery. I was too sick to get any rads in week #5, and was running a small fever all week, but it wasn't until the end of that week that it spiked over 100, and then came the Monday morning of week #6, John, and the hospital. No doubt about my wishing I had not let it get so far. Thing is- never did vomit during that time. They said I'd developed an infection that my body was no longer strong enough to deal with. Anitbiotic IV drips proved the solution.

    I apologize for my error. The great thing about it all is- my treatment was A LONG TIME AGO, which kinda means I'm still alive two years after treatment. Do thank you, John and Sweet, for correcting me about the stuff. I'm bad.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Kent Cass said:

    Stand corrected
    That I do. The Amifostine name was close-sounding, or so I thought. Know I wasn't thinking of the NYStatin, but the Amifostine sure looks like the name on that large bottle of swish and spit stuff. I, too, got the Emend, but never had any injections before my rads.

    With me, John, I was advised by an Onco Nurse about the 101, and how anything under is considered typical with the body dealing with the Cisplatin/FU-5, mostly. ER Dr. also advised the same, but that's likely what the Onco Dr. told him. And, yes, that is when I spent the four nights in the hospital at the start of week #6. Maybe the 101 is just what the QC Onco office views as breakpoint, rather than the standard. Also, could just be in regards to my Chemo delivery. I was too sick to get any rads in week #5, and was running a small fever all week, but it wasn't until the end of that week that it spiked over 100, and then came the Monday morning of week #6, John, and the hospital. No doubt about my wishing I had not let it get so far. Thing is- never did vomit during that time. They said I'd developed an infection that my body was no longer strong enough to deal with. Anitbiotic IV drips proved the solution.

    I apologize for my error. The great thing about it all is- my treatment was A LONG TIME AGO, which kinda means I'm still alive two years after treatment. Do thank you, John and Sweet, for correcting me about the stuff. I'm bad.

    kcass

    Hi Lizzie

    Sorry to hear the news but there is hope, I too suggest taking the Amifostine and doing the Proton Therapy.

    Will be praying for you as well
    Hondo
  • honeybelle22
    honeybelle22 Member Posts: 70
    #10
    Best wishes
    Lizzie, I don't have all the info the others can offer you here. But, I also am having my own battle with squamous cell. So I do know your fears and all the other emotions that stay there inside. So, what I want to say is. We all pray for you and each other. So no matter... what come here and share and you will find the support you need. As much as family and friends try.... sometimes it helps so much to talk to someone who is in "same boat." So...God bless you and stay positive. You can do it. Rose
  • lizziek
    lizziek Member Posts: 27
    #11
    Hondo said:

    Hi Lizzie

    Sorry to hear the news but there is hope, I too suggest taking the Amifostine and doing the Proton Therapy.

    Will be praying for you as well
    Hondo

    Good Advice
    Thanks Hondo,

    I've been following your ordeal since I joined this site a few weeks ago and wish you all the best. I am planning on going to a proton center for an evaluation before I decide on treatment. I have a health care background (business side) and a master's in biology so I have already looked at a lot of the research and clinical trials. Amifostine certainly looks promising and whatever type of radiation I get I will ask about it.

    I plan to be a very educated and informed patient. With all that is available on the internet (especially the voices of cancer survivors) no one should be uninformed about their cancer. We have great medicine and great doctors (not all of them, unfortunately) but no one will research a disease like the person (or loved one of someone) that has that disease.

    I will continue to share my journey in hopes that not only I will benefit.

    Best

    Lizzie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    Skiffin16 said:

    Amifostine
    I had Amifostine injections in my stomach each day 15 - 20 minutes before rads.

    It's primarily for reduction of the thick ropey phlegm that can develope once your throat starts drying out and saliva starts reduction.

    It is also thought to help regaining saliva production after rads.

    I'm nearly two years out and can only speak for myself. I have regained 90% plus of both taste and salivary function.

    The Amifostine can be brutal though. I had dry itchy patches where the injections were. They rotatated the injections trying to relief the areas previously injected.

    Also, very few make all 35+ injections before having some reaction.

    Kent, if you remember with me, I started getting sever fever swings. Later in the evening around day 28 of 35, my fever rose to 102.7. Extreme and also very important to check with your MD's if this high. They advised me in the beginning that anything above 100.5 to call in, don't wait. Some people have thought on waiting and calling the next morning..bad dicision, they ended up hospitalized or even worse.

    Anyways, after a dew days we figured out it was the Amifostine I was reacting to and stopped them around day 32 of 35.

    I believe they helped me and if had to do it over, I would still stick with that decision...

    Best,
    John

    My shots
    Mine were in the backs of my arms. They alternated every day. It really burned and hurt going in. I had black and blues on the backs of my arms the whole time. I was told to take Tylenol and benedryl 30 minutes before my shot because it could spike a fever and cause a rash. I think I missed my last few shots because I ended up having a reaction.

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