Starting RT Soon

Options
tommyodavey
tommyodavey Member Posts: 727 Member
in Head and Neck Cancer #1
Hi All,

I am healing well from my neck dissection and I must applaud my surgeon for leaving such a minor incision. He used dissolving sutures and Super Glue, which I keep picking off daily as it heals.

Last Thursday I was fitted for my head mask. That was a weird one, with the hot soft plastic covering your head. Had to put KY jelly on my hair and eyebrows so it wouldn't stick to it. They will call me when the mask is ready and make me an appt for my first treatment.

My question to the tech who did the work was what style of radiation machine did they have? An IMRT or what? He said it is the latest and greatest that allows them to pinpoint exactly where to radiate so it misses areas not needing exposure. It's called a True Beam and Googling it, it did seem to be impressive.

Considering I am getting low dose RT, time will tell what kind of side effects I will have. Not many I hope. I am to get 25 treatments.

This is my last thing to do to wrap this cancer treatment up. Two surgeries, three if you count the biopsy. I'm really tired of having body parts removed so I'm glad that's over.

I only have one question for ya'll. How does one figure out which type they had. I see a lot of folks here say they had T1NOMO, or something like that. I will ask my Oncologist next time what mine is, but I would like to know what the letters and numbers represent.

Thanks,

Tommy

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Options
    Staging....
    Great News....

    Here's the staging links from the SuperThread;


    Staging - Long

    Staging - Thread

    Staging - Short

    Your ENT or Chemo MD should be able to provide you with yours....

    Best,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    Options
    25 treatments
    You will likely get lots less long-term side effects with low dose, but you will get some short term ones. The term low dose is a little deceptive. It still equates to about 5000 rads depth dose. Full dose is typically 6500-7400. Although symptoms vary a lot from patient to patient, by about 20 fractions, most have dry mouth, loss of taste, etc. Since you are spared the top end of this treatment, you should not be as affected, nor should your symptoms last as long. It's a good deal for you.


    pat
  • pjandmary
    pjandmary Member Posts: 8
    #4
    Options
    Good luck with radiation!
    I was diagnosed with Adenoid Cystic one year ago this month. I had surgery and 6 weeks of daily radiation treatments. THe mask fitting was very traumatic for me but once I got used to it I was okay.
    I don't want to scare you but honestly I was not given a complete picture of what I could expect to happen. So I try to share what I know and have learned with others.
    If you have any metal in your mouth, fillings in your teeth, partial plates whatever, make sure they give you protection for that area from the radiation. If you don't cover those areas you will end up with scatter burns from the radiaiton and it will create a lot more pain.
    Be prepared for fatigue, loss of taste buds, loss of ability to produce saliva and you may not be able to eat or drink very well because of the burns caused by radiaiton. I lost 40 pounds during my treatments.
    Fatigue can set in at any time but honestly it was about the 4th week of my treatment that it hit hard and lasted until about the 5th week after treatment was over. Lots of sleep and walking. The mild exercise helped too.
    The good news is MRI and PET Scans came back clean on me and I hope it does for you as well.
    Good luck to you!
  • jtl
    jtl Member Posts: 456
    #5
    Options
    TrueBeam is the newest of
    TrueBeam is the newest of the newer machines along with TomoTherapy and CyberKnife. They are all similar in that they are higher precision machines that can better control the radiation beam so that healthy tissue is spared. I had TomoTherapy with saliva gland sparing and while I don't have full salva function at 3 months post it is pretty good. With a lower overall dose and the benefits of the latest technology you should do very well. Like Pat said hopefully avoiding the long term effects of the older style IMRT is a huge benefit to these newer devices. Here is a link I ran across that explains the machines and shows videos of how they work. I don't know how to post a direct link so you will need to cut and past the URL.
    http://singularityhub.com/2010/05/25/radiation-robots-fry-cancer-cells-with-ultra-high-precision-video/
    Regards,
    John
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #6
    Options
    jtl said:

    TrueBeam is the newest of
    TrueBeam is the newest of the newer machines along with TomoTherapy and CyberKnife. They are all similar in that they are higher precision machines that can better control the radiation beam so that healthy tissue is spared. I had TomoTherapy with saliva gland sparing and while I don't have full salva function at 3 months post it is pretty good. With a lower overall dose and the benefits of the latest technology you should do very well. Like Pat said hopefully avoiding the long term effects of the older style IMRT is a huge benefit to these newer devices. Here is a link I ran across that explains the machines and shows videos of how they work. I don't know how to post a direct link so you will need to cut and past the URL.
    http://singularityhub.com/2010/05/25/radiation-robots-fry-cancer-cells-with-ultra-high-precision-video/
    Regards,
    John

    Thanks for the Info
    John(skiffin), thanks for the rating links. Too much for me to figure out but you're correct, my RT Onc will tell me what it is next time I go in.

    BTW, what kind of monster fish are you holding there? I don't think my fly rod with 2lb test would land that little puppy.☺

    Pat, my Onc told me the same thing. 5,000 rads still sounds like a lot to me. Considering everyone is different, time will tell just how I'll do. I feel fairly positive that it will be minor. And yes, he said the taste buds are the first to go.

    Mary, I have several fillings but they didn't say anything about them. Once they had the mask on I had a CT scan. Wouldn't that tell them what not to radiate? I'm keeping the faith that they know what they're doing.

    Jtl, thanks for the machine links, I'll have to check them out.

    Tommy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Options
    tommyodavey said:

    Thanks for the Info
    John(skiffin), thanks for the rating links. Too much for me to figure out but you're correct, my RT Onc will tell me what it is next time I go in.

    BTW, what kind of monster fish are you holding there? I don't think my fly rod with 2lb test would land that little puppy.☺

    Pat, my Onc told me the same thing. 5,000 rads still sounds like a lot to me. Considering everyone is different, time will tell just how I'll do. I feel fairly positive that it will be minor. And yes, he said the taste buds are the first to go.

    Mary, I have several fillings but they didn't say anything about them. Once they had the mask on I had a CT scan. Wouldn't that tell them what not to radiate? I'm keeping the faith that they know what they're doing.

    Jtl, thanks for the machine links, I'll have to check them out.

    Tommy

    GAG Grouper...
    Tampa Bay, a few months ago...

    Those ratings are over rated, LOL..... treatment is pretty much the same regardless (unless maybe you,ve just been exposed and Dx) maybe with a STGI you might have a different Tx....

    Best,
    John
  • nwasen
    nwasen Member Posts: 235 Member
    #8
    Options
    Skiffin16 said:

    GAG Grouper...
    Tampa Bay, a few months ago...

    Those ratings are over rated, LOL..... treatment is pretty much the same regardless (unless maybe you,ve just been exposed and Dx) maybe with a STGI you might have a different Tx....

    Best,
    John

    teeth
    Be sure to get to your dentist before your radiation starts. You need to be sure that you don't have even the smallest of cavities. I also had my mouth heavily flourided....I had no problems but I know some have....
    I had a mantra I repeated silently thru each treatment (this is where I am supposed to be) AND I had the techs blast my Rolling Stones CDs loud while I waited for the 20 minutes that I was "microwaved"
    this too shall pass and we are all here to cheer you on!
    Peace, Nancy
  • jtl
    jtl Member Posts: 456
    #9
    Options
    nwasen said:

    teeth
    Be sure to get to your dentist before your radiation starts. You need to be sure that you don't have even the smallest of cavities. I also had my mouth heavily flourided....I had no problems but I know some have....
    I had a mantra I repeated silently thru each treatment (this is where I am supposed to be) AND I had the techs blast my Rolling Stones CDs loud while I waited for the 20 minutes that I was "microwaved"
    this too shall pass and we are all here to cheer you on!
    Peace, Nancy

    The big issue is not
    The big issue is not cavities but tooth extraction. They really need to do that before rads to avoid osteoradionecrosis. My rad onc just educated me today on that very topic. Thankfully my teeth are in good shape but I do need to get a crown on one of them sooner rather than later.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Options
    jtl said:

    The big issue is not
    The big issue is not cavities but tooth extraction. They really need to do that before rads to avoid osteoradionecrosis. My rad onc just educated me today on that very topic. Thankfully my teeth are in good shape but I do need to get a crown on one of them sooner rather than later.

    Saliva or Lack Of...
    That's also one of the real issues... But yes, lower jaw bone damage from rads is also a big concern as for healing on extractions.

    But lack of saliva can cause a lot of cavities which lead to the tooth decay and destruction.

    I just actually had a tooth crack recently...result of a lot of filling over the years, and I'm sure the rads didn't help any....

    I have been doing pretty good as for cavities, none actually last go around.

    But the cracked tooth did result in me having a crown put in as well.

    Best,
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    Options
    Skiffin16 said:

    Saliva or Lack Of...
    That's also one of the real issues... But yes, lower jaw bone damage from rads is also a big concern as for healing on extractions.

    But lack of saliva can cause a lot of cavities which lead to the tooth decay and destruction.

    I just actually had a tooth crack recently...result of a lot of filling over the years, and I'm sure the rads didn't help any....

    I have been doing pretty good as for cavities, none actually last go around.

    But the cracked tooth did result in me having a crown put in as well.

    Best,
    John

    Tommy
    Know my rad place just got a new machine, and wonder if it's the same as your's.

    Of note regarding the teeth: I was NPC, so a significant part of my rads was to the nasal area and mouth. I was not told anything about the 5 Crowns and Bridge I already had, or the fillings before or during treatment. Over a year after tx, due to the deteriorating condition of the tops of my regular teeth, I drove out to the University of Iowa, which is said to be one of the top 5 ENT centers in the USA. The Dental Dr at the Hospital told me it has long been the standard to start flouride trays even before tx starts, and to continue during and after. IF YOU ARE GETTING RADS TO THE MOUTH, I would suggest you check into starting the trays, as the rads do a number on the teeth.

    Since tx ended in 4/09, I've had one Root Canal, two Crowns, and by tomorrow at Noon the number of teeth I've had the tops rebuilt will be 8, with a number of others needing the same. My Drs and Dentist dropped the ball in regards to my teeth, and things could have been longterm better for me. Hope you will not let this happen to you- if you are getting rads to the mouth.

    kcass
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #12
    Options
    Kent Cass said:

    Tommy
    Know my rad place just got a new machine, and wonder if it's the same as your's.

    Of note regarding the teeth: I was NPC, so a significant part of my rads was to the nasal area and mouth. I was not told anything about the 5 Crowns and Bridge I already had, or the fillings before or during treatment. Over a year after tx, due to the deteriorating condition of the tops of my regular teeth, I drove out to the University of Iowa, which is said to be one of the top 5 ENT centers in the USA. The Dental Dr at the Hospital told me it has long been the standard to start flouride trays even before tx starts, and to continue during and after. IF YOU ARE GETTING RADS TO THE MOUTH, I would suggest you check into starting the trays, as the rads do a number on the teeth.

    Since tx ended in 4/09, I've had one Root Canal, two Crowns, and by tomorrow at Noon the number of teeth I've had the tops rebuilt will be 8, with a number of others needing the same. My Drs and Dentist dropped the ball in regards to my teeth, and things could have been longterm better for me. Hope you will not let this happen to you- if you are getting rads to the mouth.

    kcass

    Teeth
    My team of doctors are very good. The team consists of my Surgeon, Oral Surgeon, and my RT Oncologist. They work together and share all information. I feel very blessed to have them.

    One of the first things my ENT Surgeon did was to send me to the Oral Surgeon to remove any teeth that were questionable. All my teeth are in good condition and not one was extracted. I was then fitted for the Fluoride trays. I was told to start them right after the first treatment. Both surgeons said their goal was to see me not lose any teeth.

    My OS said to make sure my dentist is familiar with radiation patients. I drilled my dentist and they did seem to know what problems arise with RT.

    And you may have read this from me when I first joined, but my Oral Surgeon does not accept any payment from his Oral Cancer patients. A saint indeed. He said if any teeth need to be pulled he is doing it. He will also refer me to a HBO place for that beforehand.

    As far as saliva, there shouldn't be too much of a problem. During my neck dissection my Dr. removed my right saliva gland, and moved my left one to the center of my mouth so the RT won't fry it. I'll have saliva at 50% or normal. Hopefully enough to save my teeth. All my cancer was on the right so that is why my gland was removed. My type of cancer is glandular so he didn't want to take the chance of it coming back there. That is my guess. I actually didn't ask, just assuming here.

    I don't have anxiety about having the mask on or being in tight places. A little music and meditation should work for me just fine.

    Thanks for all the tips and support,

    Tommy
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #13
    Options
    tommyodavey said:

    Teeth
    My team of doctors are very good. The team consists of my Surgeon, Oral Surgeon, and my RT Oncologist. They work together and share all information. I feel very blessed to have them.

    One of the first things my ENT Surgeon did was to send me to the Oral Surgeon to remove any teeth that were questionable. All my teeth are in good condition and not one was extracted. I was then fitted for the Fluoride trays. I was told to start them right after the first treatment. Both surgeons said their goal was to see me not lose any teeth.

    My OS said to make sure my dentist is familiar with radiation patients. I drilled my dentist and they did seem to know what problems arise with RT.

    And you may have read this from me when I first joined, but my Oral Surgeon does not accept any payment from his Oral Cancer patients. A saint indeed. He said if any teeth need to be pulled he is doing it. He will also refer me to a HBO place for that beforehand.

    As far as saliva, there shouldn't be too much of a problem. During my neck dissection my Dr. removed my right saliva gland, and moved my left one to the center of my mouth so the RT won't fry it. I'll have saliva at 50% or normal. Hopefully enough to save my teeth. All my cancer was on the right so that is why my gland was removed. My type of cancer is glandular so he didn't want to take the chance of it coming back there. That is my guess. I actually didn't ask, just assuming here.

    I don't have anxiety about having the mask on or being in tight places. A little music and meditation should work for me just fine.

    Thanks for all the tips and support,

    Tommy

    Rad sessions
    If the rad sessions stress you- I found that taking a 1/2-tab of Xanax a half-hour before my rad session did wonders for making it easier, along with having my teeth in an overbite position- which seemed to help with the saliva/swallowing thing. And, yes, it does sound like your Drs are the ones I shoulda had, and wished I did have.

    kcass

Discussion Boards