Radiation starts tomorrow

eulerphi
eulerphi Member Posts: 17
in Head and Neck Cancer #1

Hi,

I am new here. I have a high grade MEC of submandibular gland, but stage 1 with extensive perineural invasion. My radiation treatment starts tomorrow.

  1. Does anyone have experience with neutron radiation?
  2. Also, my medical oncologist is currently not recommending chemotherapy even though this is high grade. Apparently chemotherapy hasn't been proven yet to be effective and the clinical trials are still undergoing for that. Given that there is no spread to lymph nodes, the oncologist believes that side effects from chemo are not worth pursuing at this point. Has any one had high grade MEC but no adjuvant chemotherapy?

Thanks!

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Welcome to the H&N

    Welcome to the group no one wants to be at. Sorry you need to be here, but this is the best place for information and support frome those that have been there. I will let the others answer your questions on radiation as I never had chemo or rad. I had surgery only, but did see your post and wanted to just say Hi. It is a bumpy road your going down, but so many have been down the road and it will get better. For now I will say to eat what you can and drink lots of water to stay hydrated. You might reat the top post called "Supperthread Read only"  It has lots of great info. Keep your spierts up and get an attitude to fight. [It does help] Also, when you have questions or just a bad, or good day it helps to write them down. Your not alone with this. Best to you and will add you in our prayers.

    Bill

  • eulerphi
    eulerphi Member Posts: 17
    #3
    wmc said:

    Welcome to the H&N

    Welcome to the group no one wants to be at. Sorry you need to be here, but this is the best place for information and support frome those that have been there. I will let the others answer your questions on radiation as I never had chemo or rad. I had surgery only, but did see your post and wanted to just say Hi. It is a bumpy road your going down, but so many have been down the road and it will get better. For now I will say to eat what you can and drink lots of water to stay hydrated. You might reat the top post called "Supperthread Read only"  It has lots of great info. Keep your spierts up and get an attitude to fight. [It does help] Also, when you have questions or just a bad, or good day it helps to write them down. Your not alone with this. Best to you and will add you in our prayers.

    Bill

    Thank you wmc!

    Hi, thanks for your welcoming reply and information. We've gone through the super thread (lots of useful information there), but didn't see any information related to neutron radiation. I am hoping to get in touch with others who have /had High grade MEC. In addition, last week, we found out that my husband's cancer has spread to skull base (foramen ovale) through the V3 (mandibular nerve). He will be getting Gamma knife radiosurgery at skull base once he is done with the neutron radiation to the neck region. His cancer is now considered stage 4 (with the new information about spread to skull base) and we are very concerned. :-(

    -Eulerphi's wife 

  • gdawg55
    gdawg55 Member Posts: 40
    #4
    eulerphi said:

    Thank you wmc!

    Hi, thanks for your welcoming reply and information. We've gone through the super thread (lots of useful information there), but didn't see any information related to neutron radiation. I am hoping to get in touch with others who have /had High grade MEC. In addition, last week, we found out that my husband's cancer has spread to skull base (foramen ovale) through the V3 (mandibular nerve). He will be getting Gamma knife radiosurgery at skull base once he is done with the neutron radiation to the neck region. His cancer is now considered stage 4 (with the new information about spread to skull base) and we are very concerned. :-(

    -Eulerphi's wife 

    Eulerphi, I'm new here and

    Eulerphi, I'm new here and getting ready for surgery for tonsil cancer.  I don't have any knowledge of neutron radiation,....I just wanted to wish you well.  Sorry to hear about your husband's cancer spreading.  You guys keep up the good fight.

    God Bless.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi newbie

     

    Like Bill and the others welcome to our little home of oldbie. When I did my first treatment I did not do chemo and my NPC came back a second time, so I did the radiation and chemo the second time, and it kicked my butt. Only to have it come back again a year later. All you can do is what you believe is best and take the advice of your doctors and go by the one you have the most faith in; foe me I make it a daily prayer as well.

     

    Tim Hondo    

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    I don't know anything about

    "Neutron Radiation".....I did look it up and it appears to be very high tech, so I'm thinking you're going to do very well once this is over.  Some of the side effects appear to be the same....changes in taste and saliva.....but still, it sounds like you're in very good hand.

    p

  • eulerphi
    eulerphi Member Posts: 17
    #7
    phrannie51 said:

    I don't know anything about

    "Neutron Radiation".....I did look it up and it appears to be very high tech, so I'm thinking you're going to do very well once this is over.  Some of the side effects appear to be the same....changes in taste and saliva.....but still, it sounds like you're in very good hand.

    p

    Neutron radiation

    Thanks Hondo and Phrannie! 

    Yes, the side effects are similar, but according to the doctor, neutron radiation is more toxic and the side effects are more severe. However, they have had much better loco-regional control rates with neutron radiation than IMRT/Proton for salivary gland cancer, which tend to be radio-resistant. MEC is also supposed to be more resistant to Chemotherapy.

    So far (we are in week 2 of neutron radiation), he has had

    Week 1: Lack of appetite for a few days, dry mouth, a slight change in taste.

    Week 2: Mouth sores/ ulcers, tiredness during evenings.

    He is doing good otherwise and is continuing to train for his marathon (he ran 10 miles last weekend).

     

  • Moki
    Moki Member Posts: 53
    #8
    MEC

    Hello. I had a low grade MEC, but with the behavior of a mid grade, that was removed from my parotid gland in September. I finished my Rapid Arc treatment (60G) 2 weeks ago. Because I had negative margin at biopsy during the removal, my ENT said that IMRT was the only treatment needed as a precaution for possible tumoral cells left.

    Did they remove everything? If you were clear in biopsy, you should be good without chemio.

     

    All the best

     

    Monica

  • eulerphi
    eulerphi Member Posts: 17
    #9
    Moki said:

    MEC

    Hello. I had a low grade MEC, but with the behavior of a mid grade, that was removed from my parotid gland in September. I finished my Rapid Arc treatment (60G) 2 weeks ago. Because I had negative margin at biopsy during the removal, my ENT said that IMRT was the only treatment needed as a precaution for possible tumoral cells left.

    Did they remove everything? If you were clear in biopsy, you should be good without chemio.

     

    All the best

     

    Monica

    MEC with Positive margin

    Hi Monica.

    No, unfortunately they couldn't remove everything. There is perineural spread with skull base invasion.

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    eulerphi said:

    Thank you wmc!

    Hi, thanks for your welcoming reply and information. We've gone through the super thread (lots of useful information there), but didn't see any information related to neutron radiation. I am hoping to get in touch with others who have /had High grade MEC. In addition, last week, we found out that my husband's cancer has spread to skull base (foramen ovale) through the V3 (mandibular nerve). He will be getting Gamma knife radiosurgery at skull base once he is done with the neutron radiation to the neck region. His cancer is now considered stage 4 (with the new information about spread to skull base) and we are very concerned. :-(

    -Eulerphi's wife 

    e's wife, i'm so sorry to

    e's wife, i'm so sorry to hear this new development.  i am praying for you and your hubby.  stay strong and know that we are here for you when you need us. 

    God bless you,

    dj

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