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craniotomy or SRS?

Forums General Melanoma Community craniotomy or SRS?

  • Post
    Laurie from maine
    Participant

      I have a question for people who have had radiation vs craniotomys and how they did

      I am having a cranitomy tomorrow.  I had a tumor SRS in june and unfortunately the area has kept slowly swelling to the point that we need to take that out.

      I have a question for people who have had radiation vs craniotomys and how they did

      I am having a cranitomy tomorrow.  I had a tumor SRS in june and unfortunately the area has kept slowly swelling to the point that we need to take that out.

      Meanwhile they found another 1cm met on the other side.  I was told that the surgeon would rather I try radiating second  tumor because that one is by my temple and trickier.  I am just wondering if people would suggest to just do a craniotomy on the second one (once i have recovered from first) or do SRS again and hope that I dont have to deal with time frame of swelling again

       

      The reason I ask is I have been off any treatment since april when I finished Ippi. I feel my time is runing out to hope the ippi is keeping my tumors under control that long.  I have bad pain in side and tumrs in lung, liver, adrenal and in arms and legs all being kept fairly stable for now but you can understand why i want to get brain hopefully clear so we can start a new treatment.

      I did BRAF but it only worked for 3 months with me.  My doctor is hopeful that we can clear brain asap and get me into pd-1 trial.

       

      so question is would you do craniotomy on second (risking possibility of right hand being effected by surgery) or do radiation and hope that it worked on this tumor?

       

      I realize that a lot depends on how well i recover from tomorrows surgery, but they say it should be easy

       

      thank you for your help – you are all in my prayers

      laurie from maine

       

       

       

    Viewing 14 reply threads
    • Replies
        kylez
        Participant

          HI Laurie,

          Good luck tomorrow. Are you going into MGH for the neurosurgery? They're ranked #3 neurosurgery facility in country in one assessment (my current hospital is ranked #6). 

          I can't really say about the preferability of craniotomy vs. radiation. I've had both variations done. The location issues that you mention contibute to the decision being very unique to each person. 

          Qualifying for clinical trials with a history of brain mets is trickier than it already is without (except for the rare trials specifically tailored for brain met patients) because of the typical exclusions unless brain mets are both treated and stable for a period of time. This will likely makes it harder to get systemic treatment quickly post-craniotomy. The FDA approved immunotherapy alternative to anti-PD1, namely Ipilimumab/Yervoy, doesn't have that problem, which made it a possibility for me. Even though PD1 seems to have (phase I only) response rates a little higher. My history in the brain:

          Round 1: 
          *Oct 2010: craniotomy left occipital
          *Nov 2011: cyberknife to resected tumor bed, also to new left parietal tumor

          Round 2
          *June 2011: double craniotomy (the left parietal tumor previously cyberknifed), plus new right temporal tumor
          *June 2011: Gamma Knife to resected tumor beds, plus to 2 addt'l new small brain mets (bringing total to 5)
          *June-Aug 2011: Ipilimumab (Yervoy)

          So far since round 2, my brain has been stable.

          Differences between my rounds 1 and 2:
          *Systemic immunotherapy treatment — Yervoy — beginning very shortly after surgery. Maybe I've been lucky enough to be a responder.
          *My 2nd radiation oncologist (for the 2nd round) favors the Gamma Knife system for radiating brain tumors.
          *Finally, there's been some recent speculation (by oncologists) about synergy between radiation and immune therapies like IPI. The radiation blasts lots of melanoma cells apart, the theory being that leaves a lot of raw material for the immune system to develop a response against. My first IPI started 16 days after the 2nd craniotomy. Could that be helping in my case? 

          Best of luck tomorrow and keep us posted.

          kylez
          Participant

            HI Laurie,

            Good luck tomorrow. Are you going into MGH for the neurosurgery? They're ranked #3 neurosurgery facility in country in one assessment (my current hospital is ranked #6). 

            I can't really say about the preferability of craniotomy vs. radiation. I've had both variations done. The location issues that you mention contibute to the decision being very unique to each person. 

            Qualifying for clinical trials with a history of brain mets is trickier than it already is without (except for the rare trials specifically tailored for brain met patients) because of the typical exclusions unless brain mets are both treated and stable for a period of time. This will likely makes it harder to get systemic treatment quickly post-craniotomy. The FDA approved immunotherapy alternative to anti-PD1, namely Ipilimumab/Yervoy, doesn't have that problem, which made it a possibility for me. Even though PD1 seems to have (phase I only) response rates a little higher. My history in the brain:

            Round 1: 
            *Oct 2010: craniotomy left occipital
            *Nov 2011: cyberknife to resected tumor bed, also to new left parietal tumor

            Round 2
            *June 2011: double craniotomy (the left parietal tumor previously cyberknifed), plus new right temporal tumor
            *June 2011: Gamma Knife to resected tumor beds, plus to 2 addt'l new small brain mets (bringing total to 5)
            *June-Aug 2011: Ipilimumab (Yervoy)

            So far since round 2, my brain has been stable.

            Differences between my rounds 1 and 2:
            *Systemic immunotherapy treatment — Yervoy — beginning very shortly after surgery. Maybe I've been lucky enough to be a responder.
            *My 2nd radiation oncologist (for the 2nd round) favors the Gamma Knife system for radiating brain tumors.
            *Finally, there's been some recent speculation (by oncologists) about synergy between radiation and immune therapies like IPI. The radiation blasts lots of melanoma cells apart, the theory being that leaves a lot of raw material for the immune system to develop a response against. My first IPI started 16 days after the 2nd craniotomy. Could that be helping in my case? 

            Best of luck tomorrow and keep us posted.

              kylez
              Participant

                correction: 2nd craniotomy -> 16 days -> Gamma Knife -> 10 days -> Ipi infusion #1

                kylez
                Participant

                  correction: 2nd craniotomy -> 16 days -> Gamma Knife -> 10 days -> Ipi infusion #1

                  kylez
                  Participant

                    correction: 2nd craniotomy -> 16 days -> Gamma Knife -> 10 days -> Ipi infusion #1

                  kylez
                  Participant

                    HI Laurie,

                    Good luck tomorrow. Are you going into MGH for the neurosurgery? They're ranked #3 neurosurgery facility in country in one assessment (my current hospital is ranked #6). 

                    I can't really say about the preferability of craniotomy vs. radiation. I've had both variations done. The location issues that you mention contibute to the decision being very unique to each person. 

                    Qualifying for clinical trials with a history of brain mets is trickier than it already is without (except for the rare trials specifically tailored for brain met patients) because of the typical exclusions unless brain mets are both treated and stable for a period of time. This will likely makes it harder to get systemic treatment quickly post-craniotomy. The FDA approved immunotherapy alternative to anti-PD1, namely Ipilimumab/Yervoy, doesn't have that problem, which made it a possibility for me. Even though PD1 seems to have (phase I only) response rates a little higher. My history in the brain:

                    Round 1: 
                    *Oct 2010: craniotomy left occipital
                    *Nov 2011: cyberknife to resected tumor bed, also to new left parietal tumor

                    Round 2
                    *June 2011: double craniotomy (the left parietal tumor previously cyberknifed), plus new right temporal tumor
                    *June 2011: Gamma Knife to resected tumor beds, plus to 2 addt'l new small brain mets (bringing total to 5)
                    *June-Aug 2011: Ipilimumab (Yervoy)

                    So far since round 2, my brain has been stable.

                    Differences between my rounds 1 and 2:
                    *Systemic immunotherapy treatment — Yervoy — beginning very shortly after surgery. Maybe I've been lucky enough to be a responder.
                    *My 2nd radiation oncologist (for the 2nd round) favors the Gamma Knife system for radiating brain tumors.
                    *Finally, there's been some recent speculation (by oncologists) about synergy between radiation and immune therapies like IPI. The radiation blasts lots of melanoma cells apart, the theory being that leaves a lot of raw material for the immune system to develop a response against. My first IPI started 16 days after the 2nd craniotomy. Could that be helping in my case? 

                    Best of luck tomorrow and keep us posted.

                    kylez
                    Participant

                      Laurie, I missed that you more recently already have done a course of IPI.

                      Do your docs feel you've been a responder to IPI in your body? Sounds like they do since the body's been stable? Since you've already been on a course of IPI, it makes sense that anti-PD1 would be a desirable goal. If for whatever reason you can't get a trial slot, I wonder if another course of IPI would be an alternative. Or if you can get the brain stable, there's other clinical trials out there too that your docs probably know about, like anti-PDL1, for one.

                      kylez
                      Participant

                        Laurie, I missed that you more recently already have done a course of IPI.

                        Do your docs feel you've been a responder to IPI in your body? Sounds like they do since the body's been stable? Since you've already been on a course of IPI, it makes sense that anti-PD1 would be a desirable goal. If for whatever reason you can't get a trial slot, I wonder if another course of IPI would be an alternative. Or if you can get the brain stable, there's other clinical trials out there too that your docs probably know about, like anti-PDL1, for one.

                        kylez
                        Participant

                          Laurie, I missed that you more recently already have done a course of IPI.

                          Do your docs feel you've been a responder to IPI in your body? Sounds like they do since the body's been stable? Since you've already been on a course of IPI, it makes sense that anti-PD1 would be a desirable goal. If for whatever reason you can't get a trial slot, I wonder if another course of IPI would be an alternative. Or if you can get the brain stable, there's other clinical trials out there too that your docs probably know about, like anti-PDL1, for one.

                          lhaley
                          Participant

                            Laurie,

                            I'm wishing you the best tomorrow.  When I had my crainectomy I recovered quickly which they did  because the edema was so bad.  When I had 2 more SRS's both of those ended up bleeding. We talked to my nuerosurgeon but he was against 2 more crainectomies unless necessary because each time there can be to much brain damage. 

                            I only took a few pain pills while in the hospital and none at home.  The worse part was the high steroids but at that point I had been on them for 6 months before and was so anxious to get off of them. 

                            Post when you can so we know how you are!

                            Linda

                            lhaley
                            Participant

                              Laurie,

                              I'm wishing you the best tomorrow.  When I had my crainectomy I recovered quickly which they did  because the edema was so bad.  When I had 2 more SRS's both of those ended up bleeding. We talked to my nuerosurgeon but he was against 2 more crainectomies unless necessary because each time there can be to much brain damage. 

                              I only took a few pain pills while in the hospital and none at home.  The worse part was the high steroids but at that point I had been on them for 6 months before and was so anxious to get off of them. 

                              Post when you can so we know how you are!

                              Linda

                              lhaley
                              Participant

                                Laurie,

                                I'm wishing you the best tomorrow.  When I had my crainectomy I recovered quickly which they did  because the edema was so bad.  When I had 2 more SRS's both of those ended up bleeding. We talked to my nuerosurgeon but he was against 2 more crainectomies unless necessary because each time there can be to much brain damage. 

                                I only took a few pain pills while in the hospital and none at home.  The worse part was the high steroids but at that point I had been on them for 6 months before and was so anxious to get off of them. 

                                Post when you can so we know how you are!

                                Linda

                                Swanee
                                Participant

                                  Hi Laurie from Maine…..I just want to wish you good vibes for your procedure tomorrow.  I wish I had something I could offer, but I don't have any experience for the procedure you are asking about.  However, without a doubt, I will be thinking of you and sending  positive thoughts to help you get through this procedure  with good results!  With all the knowledge on this site, hopefully someone can offer you helpful insight and answers to your questions.  Thanks for the update on your situation and good luck with your treatment.  Keep up your positive attitude and keep us posted!  

                                  Swanee

                                  Swanee
                                  Participant

                                    Hi Laurie from Maine…..I just want to wish you good vibes for your procedure tomorrow.  I wish I had something I could offer, but I don't have any experience for the procedure you are asking about.  However, without a doubt, I will be thinking of you and sending  positive thoughts to help you get through this procedure  with good results!  With all the knowledge on this site, hopefully someone can offer you helpful insight and answers to your questions.  Thanks for the update on your situation and good luck with your treatment.  Keep up your positive attitude and keep us posted!  

                                    Swanee

                                    Swanee
                                    Participant

                                      Hi Laurie from Maine…..I just want to wish you good vibes for your procedure tomorrow.  I wish I had something I could offer, but I don't have any experience for the procedure you are asking about.  However, without a doubt, I will be thinking of you and sending  positive thoughts to help you get through this procedure  with good results!  With all the knowledge on this site, hopefully someone can offer you helpful insight and answers to your questions.  Thanks for the update on your situation and good luck with your treatment.  Keep up your positive attitude and keep us posted!  

                                      Swanee

                                      Caretaker
                                      Participant

                                        Laurie, you will be in my prayers today, with hope for a wonderfully positive outcome for you! I am in awe of your courage. {{{}}}

                                        If someone else is reading, would you be so kind as to let me know what IPI is? I tried a search, but not coming up with anything that applies here…many thanks.

                                        All best,

                                        Caretaker

                                        Caretaker
                                        Participant

                                          Laurie, you will be in my prayers today, with hope for a wonderfully positive outcome for you! I am in awe of your courage. {{{}}}

                                          If someone else is reading, would you be so kind as to let me know what IPI is? I tried a search, but not coming up with anything that applies here…many thanks.

                                          All best,

                                          Caretaker

                                          Caretaker
                                          Participant

                                            Laurie, you will be in my prayers today, with hope for a wonderfully positive outcome for you! I am in awe of your courage. {{{}}}

                                            If someone else is reading, would you be so kind as to let me know what IPI is? I tried a search, but not coming up with anything that applies here…many thanks.

                                            All best,

                                            Caretaker

                                              Janner
                                              Participant

                                                IPI is Ipilimumab – the scientific name for the drug Yervoy.  Before Yervoy became an FDA approved drug, it was only known as Ipilimumab, IPI here for short.

                                                Janner
                                                Participant

                                                  IPI is Ipilimumab – the scientific name for the drug Yervoy.  Before Yervoy became an FDA approved drug, it was only known as Ipilimumab, IPI here for short.

                                                  Janner
                                                  Participant

                                                    IPI is Ipilimumab – the scientific name for the drug Yervoy.  Before Yervoy became an FDA approved drug, it was only known as Ipilimumab, IPI here for short.

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