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sudden deterioration with brain mets. advice and what has helped caregivers ?

Forums Caregiver Community sudden deterioration with brain mets. advice and what has helped caregivers ?

  • Post
    AlisonC
    Participant

      Hi everyone

      My friend Dave – who posts here as DavidfromSingapore – is in the hospital and an MRI yesterday showed multiple new lesions. It looks like those of you who posted below about WBR were on the right track.

      So any advice from here on ?  They are going to do the final 3 WBR treatments, cease temodar and return to zelboraf, although zelboraf doesn't seem to have held it in check.  The feeling is that there isn't time to start Ipi and have it take effect given the speed of progression.

      Hi everyone

      My friend Dave – who posts here as DavidfromSingapore – is in the hospital and an MRI yesterday showed multiple new lesions. It looks like those of you who posted below about WBR were on the right track.

      So any advice from here on ?  They are going to do the final 3 WBR treatments, cease temodar and return to zelboraf, although zelboraf doesn't seem to have held it in check.  The feeling is that there isn't time to start Ipi and have it take effect given the speed of progression.

      your advice thoughts on any medications to (a) help fight the mel and (b) keep him comfortable ?  He is on dex but getting a lot of breakthrough headaches and pain which are preventing him (and his wife) from resting. Not wanting to throw in the towel treatment wise but being very realistic.  Any suggestions for possible avenues and advice on what has helped you/your loved ones at this stage ?

      Many thanks in advance for any replies

      AlisonC

      Stage IIIB

      NED since 2001

    Viewing 11 reply threads
    • Replies
        deardad
        Participant

          Oh Im sorry to hear that David has new lesions. I can't offer any advice but thoughts and prayers are with him.

          Hope some useful advice comes your way.

          We are thinking of him.

          Nahmi from Melbourne

          deardad
          Participant

            Oh Im sorry to hear that David has new lesions. I can't offer any advice but thoughts and prayers are with him.

            Hope some useful advice comes your way.

            We are thinking of him.

            Nahmi from Melbourne

            deardad
            Participant

              Oh Im sorry to hear that David has new lesions. I can't offer any advice but thoughts and prayers are with him.

              Hope some useful advice comes your way.

              We are thinking of him.

              Nahmi from Melbourne

              FormerCaregiver
              Participant

                Alison, the sudden deterioration that you mention could be caused by melanoma itself and/or the side effects of treatment. However, I suspect that Dave's tumour burden is the main problem now.

                I am not sure if another type of chemo would be beneficial, but it would be worthwhile to ask his oncologist about this.

                Unfortunately, Zelboraf has limited effectiveness in many cases due to BRAF inhibitor resistance. However, I understand that early trial results have found that this can possibly be overcome by using a MEK/PI3K or an HSP90 inhibitor (XL888). See: http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612

                Hope this helps

                Frank from Australia

                FormerCaregiver
                Participant

                  Alison, the sudden deterioration that you mention could be caused by melanoma itself and/or the side effects of treatment. However, I suspect that Dave's tumour burden is the main problem now.

                  I am not sure if another type of chemo would be beneficial, but it would be worthwhile to ask his oncologist about this.

                  Unfortunately, Zelboraf has limited effectiveness in many cases due to BRAF inhibitor resistance. However, I understand that early trial results have found that this can possibly be overcome by using a MEK/PI3K or an HSP90 inhibitor (XL888). See: http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612

                  Hope this helps

                  Frank from Australia

                  FormerCaregiver
                  Participant

                    Alison, the sudden deterioration that you mention could be caused by melanoma itself and/or the side effects of treatment. However, I suspect that Dave's tumour burden is the main problem now.

                    I am not sure if another type of chemo would be beneficial, but it would be worthwhile to ask his oncologist about this.

                    Unfortunately, Zelboraf has limited effectiveness in many cases due to BRAF inhibitor resistance. However, I understand that early trial results have found that this can possibly be overcome by using a MEK/PI3K or an HSP90 inhibitor (XL888). See: http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612

                    Hope this helps

                    Frank from Australia

                    MeNDave
                    Participant

                      Hi Alison,

                      I'm so sorry to hear about David's brain mets – I wish I could offer advice, but I'm not familiar with the brain met scenario.  I pray they can find something treatment wise and to help ease the pain.

                      We are thinking of him and his family.

                      Maria

                      MeNDave
                      Participant

                        Hi Alison,

                        I'm so sorry to hear about David's brain mets – I wish I could offer advice, but I'm not familiar with the brain met scenario.  I pray they can find something treatment wise and to help ease the pain.

                        We are thinking of him and his family.

                        Maria

                        MeNDave
                        Participant

                          Hi Alison,

                          I'm so sorry to hear about David's brain mets – I wish I could offer advice, but I'm not familiar with the brain met scenario.  I pray they can find something treatment wise and to help ease the pain.

                          We are thinking of him and his family.

                          Maria

                          ElaineLinn
                          Participant

                            Hi Alison I am sorry to hear of your friend brain mets and am writing to tell you that I am also going through this. I just had brain surgery on the 12 of March but went through a new clinical trial called bendamuskin which they gave me 3 chemo treatments before the surgery on the last day of treatment they were wheeling me into surgery as they last drop of chemo went in the vein. The surgery went great they got the whole 1 1/2cm tumor and removed all the fluid around the tumor. I had to stay in ICU for 2 days they did another Mri and it came back good. I was released from the hospital on Monday after being in there for 12 DAYS and was doing very good untill they took me off the steriods and then the headaches began. I am still pretty sick and weak. I will begin radation in 2 weeks I will have to have 4 weeks of that then I will go back to the IPPI treatments that I was doing before because of the METS on my lungs.  I am having trouble right now with my liver function but they think that it was the chemo and hope that it will return to normal in a week or to.  I started the steriods back again yesterday an started feeling normal again. I have faith that God and the drs are going to do all they can do for me. I just have to fight and not give up. and I  hope your friend also does not give up. I will be praying for him and the rest of us that we find a cure for this  cancer and NO ONE ever has to suffer they way that most of us have suffered.

                            ElaineLinn
                            Participant

                              Hi Alison I am sorry to hear of your friend brain mets and am writing to tell you that I am also going through this. I just had brain surgery on the 12 of March but went through a new clinical trial called bendamuskin which they gave me 3 chemo treatments before the surgery on the last day of treatment they were wheeling me into surgery as they last drop of chemo went in the vein. The surgery went great they got the whole 1 1/2cm tumor and removed all the fluid around the tumor. I had to stay in ICU for 2 days they did another Mri and it came back good. I was released from the hospital on Monday after being in there for 12 DAYS and was doing very good untill they took me off the steriods and then the headaches began. I am still pretty sick and weak. I will begin radation in 2 weeks I will have to have 4 weeks of that then I will go back to the IPPI treatments that I was doing before because of the METS on my lungs.  I am having trouble right now with my liver function but they think that it was the chemo and hope that it will return to normal in a week or to.  I started the steriods back again yesterday an started feeling normal again. I have faith that God and the drs are going to do all they can do for me. I just have to fight and not give up. and I  hope your friend also does not give up. I will be praying for him and the rest of us that we find a cure for this  cancer and NO ONE ever has to suffer they way that most of us have suffered.

                              ElaineLinn
                              Participant

                                Hi Alison I am sorry to hear of your friend brain mets and am writing to tell you that I am also going through this. I just had brain surgery on the 12 of March but went through a new clinical trial called bendamuskin which they gave me 3 chemo treatments before the surgery on the last day of treatment they were wheeling me into surgery as they last drop of chemo went in the vein. The surgery went great they got the whole 1 1/2cm tumor and removed all the fluid around the tumor. I had to stay in ICU for 2 days they did another Mri and it came back good. I was released from the hospital on Monday after being in there for 12 DAYS and was doing very good untill they took me off the steriods and then the headaches began. I am still pretty sick and weak. I will begin radation in 2 weeks I will have to have 4 weeks of that then I will go back to the IPPI treatments that I was doing before because of the METS on my lungs.  I am having trouble right now with my liver function but they think that it was the chemo and hope that it will return to normal in a week or to.  I started the steriods back again yesterday an started feeling normal again. I have faith that God and the drs are going to do all they can do for me. I just have to fight and not give up. and I  hope your friend also does not give up. I will be praying for him and the rest of us that we find a cure for this  cancer and NO ONE ever has to suffer they way that most of us have suffered.

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