Radiation Therapy Help?

Bunnymom
Bunnymom Member Posts: 212 Member

 

I wonder if anyone could help me. I'm trying to do research so as to better inform myself to the best available options for radiation therapy. I've looked at IMRT but am wondering if there is an even more advanced system that would help limit the side effects and, or damage to sensitive areas that do not require radiation. 

thank you 

BunnyMom

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    Perhaps two others

    I had a friend who underwent brachytherapy where the radioactive seed pods are used. I know this was done while he was in the hospital. I assume they can control the amount more stringently with the pods. I don't remember why but he wasn't a candidate for traditional therapy. I know that Proton radiation is making strides but do not know if it has been used for Head and Neck? I hear a hospital in Loma Linda advertising it all the time on local radio, you might try calling them. I think it goes by the same name?

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    ratface said:

    Perhaps two others

    I had a friend who underwent brachytherapy where the radioactive seed pods are used. I know this was done while he was in the hospital. I assume they can control the amount more stringently with the pods. I don't remember why but he wasn't a candidate for traditional therapy. I know that Proton radiation is making strides but do not know if it has been used for Head and Neck? I hear a hospital in Loma Linda advertising it all the time on local radio, you might try calling them. I think it goes by the same name?

    My doctor (surgeon) told me

    My doctor (surgeon) told me the proton beam radiation was not strong enough to knock it out. But, I'm getting confused about this and just want to go with the best type of treatment that will do the best job and have the least chance of damaging surrounding tissue. 

    Thank you for the help

  • phrannie51
    phrannie51 Member Posts: 4,716
    I don't know

    very much about the subtle differences in radiation types.  Cyberknife, Proton, and SBRT are supposed to do less collateral damage to good tissue, but they machines aren't everywhere.  I also don't know if the medical community knows how effective they are on HNC.  When I was fist diagnosed I jumped on the Proton therapy, but realizing I'd have to go to Texas to get it, do my chemo down there, also....be away from family and home for a long time.....I finally decided on the IMRT. 

    Talk to your Oncologist.....they keep up on things....or should.  You can have your scans sent out to anywhere you choose.....see what other places offer in the way of information.  The Cancer Center in my hospital did all the work for me....gathering CD's of the scans, the paperwork from the ENT, etc....to send out to MD Anderson and Mayo.

    p

  • phrannie51
    phrannie51 Member Posts: 4,716
    Bonny....I found this in another

    HNC group about differences in Proton and IMRT.....this guy has had both.

     "I did have IMRT twice, which is photon therapy, HD-IORT twice, which is Neutron radiation, basiclly a newer high dose brachytherapy, and Just finished Proton Therapy, which is particle beam radiation. They are all External Beam Radiation. Each is used for different situations. Proton is more precise, organ sparin, higher dose in the entrance and into the tumor with no exit wound. I don't know if it would be practical with large tumors, to treat a wide area like IMRT does, since Proton Therpy takes twice as long as IMRT does. I had two areas to the carotid area, and it took 30-40 minutes, had to change snouts, aperture, body position. When I had IMRT, bilaterally, from brifge of nose down to shoulders they had 17 zaps to both sides of the neck, and took 17 minutes. I know of someone who had IMRT for 20 sessions, followed by Proton Therapy for 10 or 15 sessions. There is a new type of Proton Therapy, IMPT, may also be called pencil beam, may only be at one location or will soon be. There is no need to make any changes with the snouts. Also, there are only 11 Proton Therapy centers in the country."

     

  • Goyca
    Goyca Member Posts: 220
    What they told me

    One of the doctors i have visited said the proton beam is the best, but its not available everywhere.

    He also mentioned another machine, saying its the BEST till now, which is found ONLY in Germany, i didnt write down its name but i'll make sure to ask about it next time i see him. If i have the name soon I'll let you know

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    Goyca said:

    What they told me

    One of the doctors i have visited said the proton beam is the best, but its not available everywhere.

    He also mentioned another machine, saying its the BEST till now, which is found ONLY in Germany, i didnt write down its name but i'll make sure to ask about it next time i see him. If i have the name soon I'll let you know

    Tomo Therapy

     

     

    does anyone have information about Tomo Therapy? It is supposed to be a refinement of IMRT 

     

    THANK YOU!!!

     

    BunnyMom

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    Goyca said:

    What they told me

    One of the doctors i have visited said the proton beam is the best, but its not available everywhere.

    He also mentioned another machine, saying its the BEST till now, which is found ONLY in Germany, i didnt write down its name but i'll make sure to ask about it next time i see him. If i have the name soon I'll let you know

    Proton Beam

    I'm at the University of Chicago. They do have the Proton Beam. Talked to just the surgeon because I haven't had my appointment with the Rad Dr. Yet. The surgeon doesn't think the proton beam will be strong enough to know out the cancer. 

     

    Im im trying to investigate the TomoTherapy. They have it at Rush in Chicago. 

     

    Thank you 

    BunnyMom

  • Steve5
    Steve5 Member Posts: 147
    You are doing your homework and that is good

    Doing your homework is important - between the experiences people have on this network, your private education and your calling and meeting with specialists of the different disciplines you can help yourself a great deal in trying to make the right decision - a big part of me says that if after consulting with the specialists it is determined that one particular type is best I would opt for that type - this is me - the smaller part would make a decision that might not be based on the decision of the specialist.  My personal experience was with IMRT - I let the H&N specialist decide for me - I asked about proton therapy but it was not conducive to my tonsil cancer treatment plan that they thought was best for me.  Proton therapy is growing as another avenue and has been popping up at new places around the country  - but again my input is go with the specialist H&N treatment plan.  The information gained on this network was invaluble on what I should expect, the support was beyond outstanding and cannot be put into words suitable to do justice from the people on this network, and the care and expertise of the physicians and nurses and other support personnel in the treatment was the best - it has to be - I learned through postings and replies that side effects vary from one person to another, there is a general time during treatment where all seem to come together a bit and then divide again after treatment.  I hope you make the best informed decision you can make, sounds like you are doing your homework!!

    Thoughts and Prayers

    Steve

  • PJ47
    PJ47 Member Posts: 376
    Bunnymom said:

    Proton Beam

    I'm at the University of Chicago. They do have the Proton Beam. Talked to just the surgeon because I haven't had my appointment with the Rad Dr. Yet. The surgeon doesn't think the proton beam will be strong enough to know out the cancer. 

     

    Im im trying to investigate the TomoTherapy. They have it at Rush in Chicago. 

     

    Thank you 

    BunnyMom

    Not sure why the surgeon said it is not strong enough?

    Try and get his/her rationale on the strength issue.  

    As far as I know they can calibrate the Proton therapy to 70 GY s just like the Photon (IMRT).  I think one of the biggest issues with Proton therapy Is the cost which is much higher and also it is newer in use with head and neck cancer treatment.  

    At one time, IMRT was the new kid on the block and the same issues were present.  Now it is the norm and soon Proton therapy may be also. It would be great if our health care system would build regional Proton centers so more patients would have access like they do in Japan. Anyway, I digress.

    Keep doing your research and go with what you are comfortable with.  Your health insurance will also have input into the decision as any treatment must be pre authorized.

     

    Best wishes to you.

    PJ

     

  • PJ47
    PJ47 Member Posts: 376
    Bunnymom said:

    Tomo Therapy

     

     

    does anyone have information about Tomo Therapy? It is supposed to be a refinement of IMRT 

     

    THANK YOU!!!

     

    BunnyMom

    I had TOMO/IMRT therapy

    It is supposed to cause less collateral damage and my RO did something called "dose painting"  we were trying to spare my parotid so I would still make saliva someday (I have about 50% back at 4+ mos post rads.  I watched a good video about it from Sloan-Kettering Memorial.   Dr. Nancy Lee who was my RO's memtor does this.  See what you think.  

    I did experience severe mouth sores at day 8 and neck burns at 6 weeks.  I did not need a feeding tube (but had one at MD's insistance) and was able to swallow the entire time, but did choke on some things and had to mainly exist on smoothies, pureed soups, cream of wheat etc.   

    Do not know if this helps,  feel free to ask more questions,

    PJ

  • donfoo
    donfoo Member Posts: 1,771 Member
    Bunnymom said:

    Proton Beam

    I'm at the University of Chicago. They do have the Proton Beam. Talked to just the surgeon because I haven't had my appointment with the Rad Dr. Yet. The surgeon doesn't think the proton beam will be strong enough to know out the cancer. 

     

    Im im trying to investigate the TomoTherapy. They have it at Rush in Chicago. 

     

    Thank you 

    BunnyMom

    we aren't doctors

    Hi,

    Your heart is in the right place. Be proactive, learn as much as you can, and be as informed as you can to understand what is being discussed and being able to ask intelligent questions. No amount of reading and research is going to allow you to have an an't chance to discuss the various therapies. No offence. My recommendation is do as you are doing, write as many questions as you can and PRESS REAL HARD to get your case to tumor board and insist you ATTEND!

    Let the professionals discuss and debate with the many decades of experience behind them. The power of their wisdom will soothe any concerns about the recommendation(s).

    Best to you, Don

  • Bunnymom
    Bunnymom Member Posts: 212 Member

    I don't know

    very much about the subtle differences in radiation types.  Cyberknife, Proton, and SBRT are supposed to do less collateral damage to good tissue, but they machines aren't everywhere.  I also don't know if the medical community knows how effective they are on HNC.  When I was fist diagnosed I jumped on the Proton therapy, but realizing I'd have to go to Texas to get it, do my chemo down there, also....be away from family and home for a long time.....I finally decided on the IMRT. 

    Talk to your Oncologist.....they keep up on things....or should.  You can have your scans sent out to anywhere you choose.....see what other places offer in the way of information.  The Cancer Center in my hospital did all the work for me....gathering CD's of the scans, the paperwork from the ENT, etc....to send out to MD Anderson and Mayo.

    p

    How did IMRT go for you? What

    How did IMRT go for you? What were your side effects? Did you do the chemo concurrently with the radiation? Or were they done separately? 

     

    thanks for your help. 

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    PJ47 said:

    I had TOMO/IMRT therapy

    It is supposed to cause less collateral damage and my RO did something called "dose painting"  we were trying to spare my parotid so I would still make saliva someday (I have about 50% back at 4+ mos post rads.  I watched a good video about it from Sloan-Kettering Memorial.   Dr. Nancy Lee who was my RO's memtor does this.  See what you think.  

    I did experience severe mouth sores at day 8 and neck burns at 6 weeks.  I did not need a feeding tube (but had one at MD's insistance) and was able to swallow the entire time, but did choke on some things and had to mainly exist on smoothies, pureed soups, cream of wheat etc.   

    Do not know if this helps,  feel free to ask more questions,

    PJ

    Hi PJ

    Thank you for the post. How are you doing now? I will watch the video and thank you for the information. How long was your treatment? Did you do chemo and rad at the same time? How did you handle the mouth sores? Did they give you medication or some sort of mouth rinse to help?

     

    i hope you are doing well. I will keep you in my thoughts for well health. 

     

    Bunnymom

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    donfoo said:

    we aren't doctors

    Hi,

    Your heart is in the right place. Be proactive, learn as much as you can, and be as informed as you can to understand what is being discussed and being able to ask intelligent questions. No amount of reading and research is going to allow you to have an an't chance to discuss the various therapies. No offence. My recommendation is do as you are doing, write as many questions as you can and PRESS REAL HARD to get your case to tumor board and insist you ATTEND!

    Let the professionals discuss and debate with the many decades of experience behind them. The power of their wisdom will soothe any concerns about the recommendation(s).

    Best to you, Don

    I have an appointment with

    I have an appointment with the board on Tuesday and a second opinion on Thursday. I just came home from the hospital yesterday after surgery. I. Doing well Considering this was my fourth surgery And third neck dissection. 

     

    BunnyMom

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    PJ47 said:

    Not sure why the surgeon said it is not strong enough?

    Try and get his/her rationale on the strength issue.  

    As far as I know they can calibrate the Proton therapy to 70 GY s just like the Photon (IMRT).  I think one of the biggest issues with Proton therapy Is the cost which is much higher and also it is newer in use with head and neck cancer treatment.  

    At one time, IMRT was the new kid on the block and the same issues were present.  Now it is the norm and soon Proton therapy may be also. It would be great if our health care system would build regional Proton centers so more patients would have access like they do in Japan. Anyway, I digress.

    Keep doing your research and go with what you are comfortable with.  Your health insurance will also have input into the decision as any treatment must be pre authorized.

     

    Best wishes to you.

    PJ

     

    proton

    pj

    my surgeon said the proton beam therapy was not strong enough. They have the traditional IMRT. But, I am having a second opinion with a hospital that has TomoTherapy. the first appointment is Tuesday and the appointment with the hospital that has TomoTherapy is Thursday. I'll just have to see what each recommends. 

     

    Thank you so much 

     

    bunnyMom

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    anyone

    while sorta on the subject of radiation

    it is my understanding back in the late 80's was general radiation, then in the late 90's was tomo therapy, followed by 2000's IMRT followed closely by Photon Therapy. 

    the dates may be very general and wrong but the order of availability is what i thought it was. 

    does any one know for certainty the order?

    thanks 

    John 

    Good discussion here, BunnyMom good luck with your choice. 

     

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    PJ47 said:

    I had TOMO/IMRT therapy

    It is supposed to cause less collateral damage and my RO did something called "dose painting"  we were trying to spare my parotid so I would still make saliva someday (I have about 50% back at 4+ mos post rads.  I watched a good video about it from Sloan-Kettering Memorial.   Dr. Nancy Lee who was my RO's memtor does this.  See what you think.  

    I did experience severe mouth sores at day 8 and neck burns at 6 weeks.  I did not need a feeding tube (but had one at MD's insistance) and was able to swallow the entire time, but did choke on some things and had to mainly exist on smoothies, pureed soups, cream of wheat etc.   

    Do not know if this helps,  feel free to ask more questions,

    PJ

    Pj Video

    I watched the video I think you are referring to. It was helpful. Thank you. 

     

    BunnyMom

  • donfoo
    donfoo Member Posts: 1,771 Member
    Bunnymom said:

    I have an appointment with

    I have an appointment with the board on Tuesday and a second opinion on Thursday. I just came home from the hospital yesterday after surgery. I. Doing well Considering this was my fourth surgery And third neck dissection. 

     

    BunnyMom

    wonderful

    Make sure you have your open questions with your representing doctor. He wiill be the presenter and would likely be probing the others about your topics. You are more an observer but you might get time to ask yourself. Also, feel out your doctor about his discussing your questions. He might be reluctant to pose questions to which there is general consensus to which you are the one that wants to see the nods. Maybe not a big deal. Also, your doc may be in board well before your case is heard so make sure to touch base on Monday. Make sure to let the people there know who you are just to make sure you don't get forgotten. Generally, patients do not attend tumor board so they might go from one case to the next.  Good luck, Don

  • PJ47
    PJ47 Member Posts: 376
    Bunnymom said:

    Pj Video

    I watched the video I think you are referring to. It was helpful. Thank you. 

     

    BunnyMom

    If I lived in NY I would have gone to Dr. Lee

    Her way with patients brought me to tears.  I am doing well with 80% energy back, 70% taste buds and 60% saliva at 4 1/2 months post TOMO treatment.  I had a tongue base tumor as primary and had it removed (TORS) surgically before treatment and a left neck dissection also before radiation.  I had a reduced dose of radiation to the tongue base and both sides of my neck.  I opted not to have chemo due to the small advantage it would provide with my type of cancer and situation.  I was HPV 16 + and was hyper  reactive to the radiation (meaning I had severe mouth sores after 7 treatments).  My radiation oncologist adjusted the doses, and I had to take a short brake from radiation.

    If you have not already done so, ask your physician why he thinks Proton therapy will not be strong enough.  It could be where your cancer is located and there may be a good reason for a more diffuse type of radiation.  I am sure he has a reason for saying that but often they do not let the patient in on their thinking until we ask.  Every time I go to my MDs I learn something new and get another piece of the puzzle.  

    Keep us posted and all the best to you,

    PJ 

  • PJ47
    PJ47 Member Posts: 376
    Bunnymom said:

    I have an appointment with

    I have an appointment with the board on Tuesday and a second opinion on Thursday. I just came home from the hospital yesterday after surgery. I. Doing well Considering this was my fourth surgery And third neck dissection. 

     

    BunnyMom

    Wow, 3 neck dissections

    You are amazing!  It took me 6 months to get my range of motion back in my arm and shoulder after my one and only dissection.  The area where the scar is is still quite tender.  I feel for you.  Which ever kind of radiation you have will most likely destroy the cancer.

    Oh,BTW  I just had my first PET scan and it showed abnormal activity on the side where I had the neck dissection.  The radiation oncologist is not worried and believes it is inflamation from the neck dissection on the muscle.  It is diffuse and not focal or looking like a lymph node.  So we shall see...  I am getting a second look at the scan just to be sure.

    Take care and hope you will heal fast.

    PJ