Started TOMO/IGRT

PJ47
PJ47 Member Posts: 376
in Head and Neck Cancer #1

Hi all,

Yesterday went well and my radiation oncologist who was trained at Sloan Kettering in NY with Dr. Nancy Lee (look at her video and how she treats her patient it moved me to tears).  My r/o Dr. Sophia Edwards-Bennett spent a lot of her precious time with me explaining and going over the treatment plan looking at the art of the dose painting and how she plans to spare organs at risk etc.  I feel blessed to have her and told her that.  Met many other cancer survivors and plan to engage with as many as I can during the treatment waiting times.

I do not know how many of you were treated with TOMO/IMGT or TOMO/IMRT not sure which it really is, but would love to hear from you.  You have a scan done each time to insure exact position with treatment plan.

She is blocking my spinal cord will have very low dose in the brain stem area, will spare one of my parotids, not affect the ear, eyes, mandible etc.

This is not to say I will not have many of the side effects you all had.  The drive is about 3 hours round trip, as Wilmington NC does not have TOMO.  

I have been researching meal supplements that are healthy, liquid, and quick to make and wondered if anyone has tried the Garden of Life raw protein meal replacement?  Any other low sugar high cal. healthy options you can recommend?  I do not drink milk or eat dairy. I  drink almond, soy or rice milk.  

 

Thanks for all your support so far,

PJ

 

Comments

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #2
    Tomotherapy

    I had Tomo at Johns Hopkins. 30 sessions. While it's more precise in it's delivery, I still got my butt kicked. But as they say in the H&N biz... "everyone is different" ;)

    Positive thoughts and prayers

    "T"

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    one down

    PJ,

    I think it is a well-choreographed balance of exams, scans, spread, location, machines, science, experience, body acceptance, luck and the unknown which are brought to focus on our plight.

    I had a first rate rad onc and a “first string” rad techs to help me through and stick with the plan.  There was always some warm-up time for me and some line-up time for the IMRT (each treatment).

    The machines are more precise and better than before, but the development of the cancer dictates the course (within reason).  After all, they know how to kill it, but doing it safely is key.

    I had eye holes in my mask and found interest in watching the line-up lasers and the machine rotating.  There was one particular position where I could see me reflection in my mask, which I did not care for much.

    Peace,

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    IMRT...

    I had IMRT, nothing to it....

    Nothing as for blocking or moving anything, and I regained all taste and 95% or co of my saliva back..., just slowly..

    Best,

    John

  • Jim B
    Jim B Member Posts: 4
    #5
    Tomography (Radiation) and Chemo

    I finished Tomo and Chemo treatments on March 21st of 2012 I had Back of Tongue Squamous Cell Carcinoma Cancer and the PET Scan I had after completion of the two therapies did not show any Cancer. Since then I have had two PET scans and the Cancer has Metatacised to my Lungs and is also appearing in my neck Lymph Nodes. It is very slow growing Cancer and I seem to be holding my own well, no symptoms.

    Quite honestly the Tomo Radiation literally Kicked My Butt, Chemo was a piece of cake compared to Tomo. All in all, I came through well, losing my taste buds and Saliva but both are returning slowly. I was treated at Oregon Health and Science University (OHSU) in Oregon. It sounds like you also have a "dream team" for your treatments. I personally am extremely gratified that there are so many qualified, caring doctors and nurses treating Cancer.

    If you have any other questions about Tomo therapy, please ask. I had 7 weeks of Tomo, 35 days/treatments and 7 weeks of consecutive Chemo. I was told that Tomo and Chemo worked hand-hand to treat the specific Cancer I have.

    I will be going back for 18 weeks of Chemo starting Dec. 4th, to treat the Cancer that has metastacised to my lungs. This is considered terminal Cancer but the Chemo may be able to help "put a lid" on the growth of the Cancer and hopefully slow it down.

    I have a good attitude and I am again very grateful for my care team of doctors and nurses!!

     

    Jim

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    Jim B said:

    Tomography (Radiation) and Chemo

    I finished Tomo and Chemo treatments on March 21st of 2012 I had Back of Tongue Squamous Cell Carcinoma Cancer and the PET Scan I had after completion of the two therapies did not show any Cancer. Since then I have had two PET scans and the Cancer has Metatacised to my Lungs and is also appearing in my neck Lymph Nodes. It is very slow growing Cancer and I seem to be holding my own well, no symptoms.

    Quite honestly the Tomo Radiation literally Kicked My Butt, Chemo was a piece of cake compared to Tomo. All in all, I came through well, losing my taste buds and Saliva but both are returning slowly. I was treated at Oregon Health and Science University (OHSU) in Oregon. It sounds like you also have a "dream team" for your treatments. I personally am extremely gratified that there are so many qualified, caring doctors and nurses treating Cancer.

    If you have any other questions about Tomo therapy, please ask. I had 7 weeks of Tomo, 35 days/treatments and 7 weeks of consecutive Chemo. I was told that Tomo and Chemo worked hand-hand to treat the specific Cancer I have.

    I will be going back for 18 weeks of Chemo starting Dec. 4th, to treat the Cancer that has metastacised to my lungs. This is considered terminal Cancer but the Chemo may be able to help "put a lid" on the growth of the Cancer and hopefully slow it down.

    I have a good attitude and I am again very grateful for my care team of doctors and nurses!!

     

    Jim

    hang in there

    Jim,

    Good luck on your continued treatment.

    I was treated just down the road in Corvallis.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    Jim B said:

    Tomography (Radiation) and Chemo

    I finished Tomo and Chemo treatments on March 21st of 2012 I had Back of Tongue Squamous Cell Carcinoma Cancer and the PET Scan I had after completion of the two therapies did not show any Cancer. Since then I have had two PET scans and the Cancer has Metatacised to my Lungs and is also appearing in my neck Lymph Nodes. It is very slow growing Cancer and I seem to be holding my own well, no symptoms.

    Quite honestly the Tomo Radiation literally Kicked My Butt, Chemo was a piece of cake compared to Tomo. All in all, I came through well, losing my taste buds and Saliva but both are returning slowly. I was treated at Oregon Health and Science University (OHSU) in Oregon. It sounds like you also have a "dream team" for your treatments. I personally am extremely gratified that there are so many qualified, caring doctors and nurses treating Cancer.

    If you have any other questions about Tomo therapy, please ask. I had 7 weeks of Tomo, 35 days/treatments and 7 weeks of consecutive Chemo. I was told that Tomo and Chemo worked hand-hand to treat the specific Cancer I have.

    I will be going back for 18 weeks of Chemo starting Dec. 4th, to treat the Cancer that has metastacised to my lungs. This is considered terminal Cancer but the Chemo may be able to help "put a lid" on the growth of the Cancer and hopefully slow it down.

    I have a good attitude and I am again very grateful for my care team of doctors and nurses!!

     

    Jim

    jim, i'm so very sorry to

    jim, i'm so very sorry to hear ur news.  i will be praying 4 the chemo to work.  stay positive and let us know how ur do'n.

    God bless you,

    dj

  • PJ47
    PJ47 Member Posts: 376
    #8
    Jim B said:

    Tomography (Radiation) and Chemo

    I finished Tomo and Chemo treatments on March 21st of 2012 I had Back of Tongue Squamous Cell Carcinoma Cancer and the PET Scan I had after completion of the two therapies did not show any Cancer. Since then I have had two PET scans and the Cancer has Metatacised to my Lungs and is also appearing in my neck Lymph Nodes. It is very slow growing Cancer and I seem to be holding my own well, no symptoms.

    Quite honestly the Tomo Radiation literally Kicked My Butt, Chemo was a piece of cake compared to Tomo. All in all, I came through well, losing my taste buds and Saliva but both are returning slowly. I was treated at Oregon Health and Science University (OHSU) in Oregon. It sounds like you also have a "dream team" for your treatments. I personally am extremely gratified that there are so many qualified, caring doctors and nurses treating Cancer.

    If you have any other questions about Tomo therapy, please ask. I had 7 weeks of Tomo, 35 days/treatments and 7 weeks of consecutive Chemo. I was told that Tomo and Chemo worked hand-hand to treat the specific Cancer I have.

    I will be going back for 18 weeks of Chemo starting Dec. 4th, to treat the Cancer that has metastacised to my lungs. This is considered terminal Cancer but the Chemo may be able to help "put a lid" on the growth of the Cancer and hopefully slow it down.

    I have a good attitude and I am again very grateful for my care team of doctors and nurses!!

     

    Jim

    Hello Jim

    Sorry for taking so long to respond, but had 1 1/2 weeks of tomo/igrt so far. Trying to have an early Thanksgiving with our daughters, before they leave.  Family here and it makes for a very busy time.  Mouth very dry and food is tasting bad but ok otherwise.  Your attitude is amazing and I will keep you in my thoughts.  Did they radiate your neck and lymph nodes when they did your tongue base?  I too am thankful for my team.  Take care, 

    PJ

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