Tomotherapy radiation question – especially for spinal tumors

Forums General Melanoma Community Tomotherapy radiation question – especially for spinal tumors

  • Post
    nickmac56
    Participant

      My wife's scans last week came back with pretty bad news – she has about a dozen tumors in the epidural space along her spinal column. She was going to have the one causing pain in her tailbone area treated with Cyberknife radiation, but now the radiologists are recommending Tomo Therapy radiation. Apparently this is the latest, greatest radiation treatment there is – precision and real time targeting of multiple tumor sites (can get all 12). Supposed to be painless (of course) and minimal side effects (all I can find are references to anemia and hair loss).

      My wife's scans last week came back with pretty bad news – she has about a dozen tumors in the epidural space along her spinal column. She was going to have the one causing pain in her tailbone area treated with Cyberknife radiation, but now the radiologists are recommending Tomo Therapy radiation. Apparently this is the latest, greatest radiation treatment there is – precision and real time targeting of multiple tumor sites (can get all 12). Supposed to be painless (of course) and minimal side effects (all I can find are references to anemia and hair loss). There is only one machine in Seattle. The alternatives are not good at all – total body radiation which has awful side effects or watch and wait for 2-3  months (until her brain calms down from the Gamma Knife brain radiation treatment she had las week) and try direct injection chemo into spinal column via a brain port (sounds lovely doesn't it). That assumes she doesn't present symptoms which force some action (likely).

      Anyone done this type of radiation treatment and can speak to side effects?

      thanks, Nick

    Viewing 5 reply threads
    • Replies
        lhaley
        Participant

          Nick,

          I cannot begin to suggest what to do.  I wanted to tell you that what you describe as the direct injection of chemo via a brain port sounds like what Amy Busby had done. This did keep Amy stable for quite some time.  My suggestion is to do a search on Amy along with IL2 and see if you can find any of her posts talking about this. 

          I hope someone can give you some information on the Tomo Therapy.  At least they can hit 12 areas without subjecting the entire body.

          Linda

          lhaley
          Participant

            Nick,

            I cannot begin to suggest what to do.  I wanted to tell you that what you describe as the direct injection of chemo via a brain port sounds like what Amy Busby had done. This did keep Amy stable for quite some time.  My suggestion is to do a search on Amy along with IL2 and see if you can find any of her posts talking about this. 

            I hope someone can give you some information on the Tomo Therapy.  At least they can hit 12 areas without subjecting the entire body.

            Linda

              nickmac56
              Participant

                Thank you Linda – I do know about the brain port thing – it's just that my wife can't do that as an option for 2-3 months because she just had Gammaknife treatment on her brain and is on steroids and anti-seizure meds. Her seizures after her last Cyberknife brain radiation treatment put her at high risk for use of IL-2 and direct import of chemo into the spinal column.So we are all over that if she can keep free of brain mets for the wait period. These damn brain mets really screw up treatment options.

                nickmac56
                Participant

                  Thank you Linda – I do know about the brain port thing – it's just that my wife can't do that as an option for 2-3 months because she just had Gammaknife treatment on her brain and is on steroids and anti-seizure meds. Her seizures after her last Cyberknife brain radiation treatment put her at high risk for use of IL-2 and direct import of chemo into the spinal column.So we are all over that if she can keep free of brain mets for the wait period. These damn brain mets really screw up treatment options.

                Janner
                Participant

                  I believe this is what my father had for his lung cancer (NSCC).  Instead of doing the normal daily radiation for 30 days, he did 3 high dose real time treatments MWF.  He was basically fitted in some type of inflatable body cast and they did studies to determine / predict lung movement.  Then he just had the 3 high dose treatments which has hopefully killed his lung tumor.  His only real side effects were fatigue (he was 84) and some residual skin burns on his back.  My Dad didn't want any real invasive treatments given his age, and he tolerated this quite well.

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    I believe this is what my father had for his lung cancer (NSCC).  Instead of doing the normal daily radiation for 30 days, he did 3 high dose real time treatments MWF.  He was basically fitted in some type of inflatable body cast and they did studies to determine / predict lung movement.  Then he just had the 3 high dose treatments which has hopefully killed his lung tumor.  His only real side effects were fatigue (he was 84) and some residual skin burns on his back.  My Dad didn't want any real invasive treatments given his age, and he tolerated this quite well.

                    Best wishes,

                    Janner

                    lyndaloo
                    Participant

                      Hello – we are located in Canada, my husband had whole brain radiation along with tomo therapy to target some brain mets.  He managed to work thru it all but was very tired wtih some nausea.  Its been a few months since and he seems to be regressing with his radiation symptoms, sleeping more, he also lost his hair.  We have heard great things about tomo therapy and its targeted approach, I only hope that it has done its job. His memory remains good and it hasn't affected his personality.

                      lyndaloo
                      Participant

                        Hello – we are located in Canada, my husband had whole brain radiation along with tomo therapy to target some brain mets.  He managed to work thru it all but was very tired wtih some nausea.  Its been a few months since and he seems to be regressing with his radiation symptoms, sleeping more, he also lost his hair.  We have heard great things about tomo therapy and its targeted approach, I only hope that it has done its job. His memory remains good and it hasn't affected his personality.

                    Viewing 5 reply threads
                    • You must be logged in to reply to this topic.
                    About the MRF Patient Forum

                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                    Popular Topics