Frustrated with radiation washout period

› Forums › General Melanoma Community › Frustrated with radiation washout period

  • Post
    • December 23, 2016 at 11:18 am
    Shaneswife
    Participant
      So hubby had WBRT and radiation to the groin. He finished last week but doesn’t start the braf mek combo til january 3rd. He has a rare form of metasteses in a miliary pattern in both the brain and both lungs. That he needed treatment right away but they have us stuck in this radiation washout period and I don’t understand why the wait. It’s just so frustrating knowing that there is nothing happening and he’s getting more symptoms everyday as he’s weaned off his steroids.
    Viewing 2 reply threads
    • Replies
        • December 24, 2016 at 4:50 pm
        debwray
        Participant

          hI,

          Can't really add much except to say I can feel your frustration and have been similarly placed pressing for treatment  or surgeries to take place when you know the wait won't improve things. I got out of hospital last Christmas eve following a inguinal and pelvic   lymph node disection.. but would have had to wait till the end of Jan for an NHS procedure….and had endured assorted waits for scans , ultrasound etc going back to 3 Nov.

          That said- the BRAF drugs do seem to work very quickly and by Jan 3 the team managing your husband should be at full strength ready to handle any side effects if and when they arise. Also, your treatment start is still pretty close to the radiation so you may get benefits from multiple treatment methods. 

          We know its a roller coaster white knuckle ride at times- hold on tight…enjoy the good things you can today.

          The wait may have been to make it easier to identify any problems arising from The WBRT ( Seizures or bleeds ) and it sounds like he is doing well but tired. 

          It will feel better when the next treatment starts- I promise- but maybe you can both use this time to enjoy what you can both enjoy right now- family, supporting friends a break from medical appointments etc.

          Wishing you both a speedy response come New Year…

          Hang on in there- Hugs  

          Deb

           

           

           

            • December 24, 2016 at 5:53 pm
            Shaneswife
            Participant
              Hi Deb. Thanks for the reply. Some days this just gets me down. All the waiting.
              • December 24, 2016 at 5:53 pm
              Shaneswife
              Participant
                Hi Deb. Thanks for the reply. Some days this just gets me down. All the waiting.
                • December 24, 2016 at 5:53 pm
                Shaneswife
                Participant
                  Hi Deb. Thanks for the reply. Some days this just gets me down. All the waiting.
                • December 24, 2016 at 4:50 pm
                debwray
                Participant

                  hI,

                  Can't really add much except to say I can feel your frustration and have been similarly placed pressing for treatment  or surgeries to take place when you know the wait won't improve things. I got out of hospital last Christmas eve following a inguinal and pelvic   lymph node disection.. but would have had to wait till the end of Jan for an NHS procedure….and had endured assorted waits for scans , ultrasound etc going back to 3 Nov.

                  That said- the BRAF drugs do seem to work very quickly and by Jan 3 the team managing your husband should be at full strength ready to handle any side effects if and when they arise. Also, your treatment start is still pretty close to the radiation so you may get benefits from multiple treatment methods. 

                  We know its a roller coaster white knuckle ride at times- hold on tight…enjoy the good things you can today.

                  The wait may have been to make it easier to identify any problems arising from The WBRT ( Seizures or bleeds ) and it sounds like he is doing well but tired. 

                  It will feel better when the next treatment starts- I promise- but maybe you can both use this time to enjoy what you can both enjoy right now- family, supporting friends a break from medical appointments etc.

                  Wishing you both a speedy response come New Year…

                  Hang on in there- Hugs  

                  Deb

                   

                   

                   

                  • December 24, 2016 at 4:50 pm
                  debwray
                  Participant

                    hI,

                    Can't really add much except to say I can feel your frustration and have been similarly placed pressing for treatment  or surgeries to take place when you know the wait won't improve things. I got out of hospital last Christmas eve following a inguinal and pelvic   lymph node disection.. but would have had to wait till the end of Jan for an NHS procedure….and had endured assorted waits for scans , ultrasound etc going back to 3 Nov.

                    That said- the BRAF drugs do seem to work very quickly and by Jan 3 the team managing your husband should be at full strength ready to handle any side effects if and when they arise. Also, your treatment start is still pretty close to the radiation so you may get benefits from multiple treatment methods. 

                    We know its a roller coaster white knuckle ride at times- hold on tight…enjoy the good things you can today.

                    The wait may have been to make it easier to identify any problems arising from The WBRT ( Seizures or bleeds ) and it sounds like he is doing well but tired. 

                    It will feel better when the next treatment starts- I promise- but maybe you can both use this time to enjoy what you can both enjoy right now- family, supporting friends a break from medical appointments etc.

                    Wishing you both a speedy response come New Year…

                    Hang on in there- Hugs  

                    Deb

                     

                     

                     

                Viewing 2 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