MRF-Logo2019-Horizontal-RGB
More brain radiation
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

More brain radiation

› Forums › General Melanoma Community › More brain radiation

  • Post
    • January 26, 2011 at 7:00 pm
    Sharyn
    Participant

       

       

      Hi friends!
      Just a quick update. I went to Montreal yesterday and met with my oncologist Dr Mihalcioiu and radiation oncologist Dr Roberge. They went over my Dec 8 brain CT scan in great detail, and here's how things are looking.
       
      Back in May I had 4 brain tumors treated with Stereotactic Radiosurgery (SRS). I'm delighted to say that 3 of them are gone, and what's left of the 4th one isn't even worth bothering with. But (there's always gotta be a "but"), I have 2 new tumors. One is on my left occipital lobe (I had one on the right side in May), and that affects vision. Lately I have been having mild loss of peripheral vision on the right side (left controls right side of the brain), so that explains my sight problems. The other tumor is in the internal capsule, and (I think) can affect arm and/or leg movement, although I haven't had any of those symptoms. Dr Roberge thinks these 2 new tumors could possibly have been present when I had my last SRS treatment, but were still too small to be detected. So this doesn't necessarily mean new growth.
       
      So here's the game plan: I go myself back to Montreal on Tuesday (Feb 1) to check my radiation mask to see if it still fits. Remember, I had no hair last year, so the new hair may have thrown the measurements out of whack. If it doesn't fit, I have to get one made Tues morning. Then I go for an MRI, after which is a planning session to figure out lines and angles, etc. Back home Tues night.  Back to Montreal again, with Jim this time, the following Monday (Feb 7 & 8) for the actual treatment. It would have been nice to do it all in the one trip, but a lot has to be done from the 1st to the 7th, co-ordinating physicists, figuring out radiation dosages, etc.
       
      Then I resume the next phase of ipilimumab, which, by the way, the doctors are absolutely thrilled with! They can't believe the drastic reduction in other parts of my body. They'll do another CT scan before we start up again to see what my new starting points are.  
       
      So that's it — just another little bump in the road. I'll let you know how it goes after the 8th.
       
      Hugs
      Sharyn

       
    Viewing 13 reply threads
    • Replies
        • January 26, 2011 at 7:18 pm
        NicOz
        Participant

          At least this "bump" had the common decency not to assert itself over Christmas (:D) Great to hear the ipi is being so good for your systemic bits and pieces, Sharyn- I'm rapt to hear it!

          I hear you on how wonderful it would be to be able to manage some treatments in one fell swoop, it can be quite frustrating when having to go back and forth. Damned inconvenient, frankly! (Possibly the most annoying factor of my mel :P)

          Will be watching to hear how things went, and thinking of you in the meantime, hun.

          Fingers crossed for a smooth treatment (logistical planning, treatment and post) for you!

          Cheers,

          Nic

          • January 26, 2011 at 7:18 pm
          NicOz
          Participant

            At least this "bump" had the common decency not to assert itself over Christmas (:D) Great to hear the ipi is being so good for your systemic bits and pieces, Sharyn- I'm rapt to hear it!

            I hear you on how wonderful it would be to be able to manage some treatments in one fell swoop, it can be quite frustrating when having to go back and forth. Damned inconvenient, frankly! (Possibly the most annoying factor of my mel :P)

            Will be watching to hear how things went, and thinking of you in the meantime, hun.

            Fingers crossed for a smooth treatment (logistical planning, treatment and post) for you!

            Cheers,

            Nic

            • January 26, 2011 at 11:33 pm
            Vermont_Donna
            Participant

              Hi Sharyn,

                Overall good news with the IPI. Sorry about the brain mets BUT you have a pretty good plan. How long does it take to fly from home to Montreal? Are you getting help with something like Angelflight?? How about with hotel rooms? Any help with those? 

              Wishing the best of luck and smooth treatments! You are my hero! Or is that "heroine"? lol

              Vermont_Donna

              stage 3a currently doing IPI

                • January 28, 2011 at 4:58 am
                Sharyn
                Participant

                  Hi Donna,

                  It takes about 2 and a half hours flying direct, but most flights have at least 1 stop, making it about a 5-6 hour trip.  I'm not getting any reimbursement for the ipi treatments, but I am getting 50% reimbursement for the SRS. Each trip costs me about $800 (including hotel) if I go myself and if I luck into a seat sale. Otherwise, it's about $1000 per trip, $2000 if Jim comes with me.  It gets expensive after awhile. I tried the Angel route, but apparently I make too much money to qualify. I don't know how poor one has to be, but my credit line is closing in on 6 figures. I can't keep up that kind of debt for much longer. But I'll keep going until I run out of money.

                  Hugs

                  Sharyn

                  • January 28, 2011 at 4:58 am
                  Sharyn
                  Participant

                    Hi Donna,

                    It takes about 2 and a half hours flying direct, but most flights have at least 1 stop, making it about a 5-6 hour trip.  I'm not getting any reimbursement for the ipi treatments, but I am getting 50% reimbursement for the SRS. Each trip costs me about $800 (including hotel) if I go myself and if I luck into a seat sale. Otherwise, it's about $1000 per trip, $2000 if Jim comes with me.  It gets expensive after awhile. I tried the Angel route, but apparently I make too much money to qualify. I don't know how poor one has to be, but my credit line is closing in on 6 figures. I can't keep up that kind of debt for much longer. But I'll keep going until I run out of money.

                    Hugs

                    Sharyn

                  • January 26, 2011 at 11:33 pm
                  Vermont_Donna
                  Participant

                    Hi Sharyn,

                      Overall good news with the IPI. Sorry about the brain mets BUT you have a pretty good plan. How long does it take to fly from home to Montreal? Are you getting help with something like Angelflight?? How about with hotel rooms? Any help with those? 

                    Wishing the best of luck and smooth treatments! You are my hero! Or is that "heroine"? lol

                    Vermont_Donna

                    stage 3a currently doing IPI

                    • January 27, 2011 at 12:31 am
                    jag
                    Participant

                      Thanks for the update Sharyn,  

                      I wish you the best of luck-keep the good updates coming!

                      • January 27, 2011 at 12:31 am
                      jag
                      Participant

                        Thanks for the update Sharyn,  

                        I wish you the best of luck-keep the good updates coming!

                        • January 28, 2011 at 1:44 am
                        glewis923
                        Participant

                          Thanks for this post, as it sounds like i'll be having similar brain experience…..gives me hope.

                          • January 28, 2011 at 1:44 am
                          glewis923
                          Participant

                            Thanks for this post, as it sounds like i'll be having similar brain experience…..gives me hope.

                            • January 28, 2011 at 11:41 pm
                            triciad
                            Participant

                              Sharyn,

                              Best of luck to you with the radiation, and  I'm so happy to hear that you are responding to Ipi.  Keep the faith and we'll send the prayers.

                              Tricia

                              • January 28, 2011 at 11:41 pm
                              triciad
                              Participant

                                Sharyn,

                                Best of luck to you with the radiation, and  I'm so happy to hear that you are responding to Ipi.  Keep the faith and we'll send the prayers.

                                Tricia

                                • January 29, 2011 at 2:11 pm
                                Nancy
                                Participant

                                  Wishing the best for you…Keeping you in my prayers..Stay strong..

                                  Nancy-Maryland

                                  • January 29, 2011 at 2:11 pm
                                  Nancy
                                  Participant

                                    Wishing the best for you…Keeping you in my prayers..Stay strong..

                                    Nancy-Maryland

                                    • January 29, 2011 at 5:18 pm
                                    Jan in OC
                                    Participant

                                      Wishing you the best of luck Sharyn. I have been reading your posts as my husband and I are now in the same position.  He had his first IPI infusion yesterday (went well, no side effects so far).  We go next Thursday to meet the radiation Oncologist for his brain tumor.  Our travel is less than your but exhausting.  Our drive is only about 70 miles ($40 in gas each visit plus parking and food), but it takes all day as we travel the busiest freeway (parking lot!) in LA.  It  can take 2-3 hours in the morning and 3-4 in the evening for the drive and 3 hours at UCLA.  Just this month, we have been there 6 times.

                                      Take care

                                      Jan, wife to Dirk

                                      • January 29, 2011 at 5:18 pm
                                      Jan in OC
                                      Participant

                                        Wishing you the best of luck Sharyn. I have been reading your posts as my husband and I are now in the same position.  He had his first IPI infusion yesterday (went well, no side effects so far).  We go next Thursday to meet the radiation Oncologist for his brain tumor.  Our travel is less than your but exhausting.  Our drive is only about 70 miles ($40 in gas each visit plus parking and food), but it takes all day as we travel the busiest freeway (parking lot!) in LA.  It  can take 2-3 hours in the morning and 3-4 in the evening for the drive and 3 hours at UCLA.  Just this month, we have been there 6 times.

                                        Take care

                                        Jan, wife to Dirk

                                    Viewing 13 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