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Onc said Eric has 2-3 months

Forums General Melanoma Community Onc said Eric has 2-3 months

  • Post
    EricNJill
    Participant

      Eric had a Craniotomy on 11/6/10 due to a 3CM tumor that hemmorhaged.  Eric was hospitalized on Monday & Tuesday from swelling in his brain.  At the hospital they took blood cultures because his white blood cell count was high.  We got a call late last night that the culture great Gram Positve Cocci.  Wednesay and Thursday Eric started to decline.  Saying things that didn't make sence, cold sweats, he vomitted once, and is very confused as well as physically exhausted.  So we saw his Oncologist today and they took new cultures.  Eric's Oncologi

      Eric had a Craniotomy on 11/6/10 due to a 3CM tumor that hemmorhaged.  Eric was hospitalized on Monday & Tuesday from swelling in his brain.  At the hospital they took blood cultures because his white blood cell count was high.  We got a call late last night that the culture great Gram Positve Cocci.  Wednesay and Thursday Eric started to decline.  Saying things that didn't make sence, cold sweats, he vomitted once, and is very confused as well as physically exhausted.  So we saw his Oncologist today and they took new cultures.  Eric's Oncologist is not wanting us to follow through with the Gamma Knife on the tumor bed that is HIGHLY recommended by the Neurosurgeon.  The Neurosurgeon said if he does not have it, the tumor WILL grow back.

      Dr. Haluschak doesn't not want us to treat the brain, instead he wants Eric to have Isolated Limb Perfusion because he has so many tumors in the Right leg. He said if we do not get the tumors in Eric's leg controlled that he will only live 2-3 months.  We are very concerned about not treating the brain. We know that God is in control of how long Eric has. We pray that God will lead us in the right decision to make about Eric's treatment. Eric wants to continue to fight. We are so conflicted because different doctors are telling us different advice.

      God help us.  This is so hard.   JillNEric in OH

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        Laurie from maine
        Participant

          I am so sorry, I am afraid I have no words to help you, except for you both to know you are in my prayers.

          stay strong

          laurie from maine

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          Laurie from maine
          Participant

            I am so sorry, I am afraid I have no words to help you, except for you both to know you are in my prayers.

            stay strong

            laurie from maine

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            W.
            Participant

              Jill,

              did the oncologist explain, why the ILP is more urgent than Gamma Knife?  

              I'm not  a doctor, but my  gut instinct is to treat the brain first. As far is  I know, recovery from Gamma Knife is usually fast (a  few  days)!

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                EricNJill
                Participant

                  If he does Gamma Knife he will have to wait two months from 11/29 to start a BRAF trial instead of 11/6 when he had the Craniotomy.  He said he is more concerned about the extensive disease that Eric has in his right leg and if we don't get it under control it is going to spread like wildfire.  Eric has over 100 sub-cutaneous and vascular tumors.  This was taken a few weeks ago and they are actually much worse now.  They drain and bleed all the time.  He has them all in his right leg.

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                  EricNJill
                  Participant

                    If he does Gamma Knife he will have to wait two months from 11/29 to start a BRAF trial instead of 11/6 when he had the Craniotomy.  He said he is more concerned about the extensive disease that Eric has in his right leg and if we don't get it under control it is going to spread like wildfire.  Eric has over 100 sub-cutaneous and vascular tumors.  This was taken a few weeks ago and they are actually much worse now.  They drain and bleed all the time.  He has them all in his right leg.

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                  W.
                  Participant

                    Jill,

                    did the oncologist explain, why the ILP is more urgent than Gamma Knife?  

                    I'm not  a doctor, but my  gut instinct is to treat the brain first. As far is  I know, recovery from Gamma Knife is usually fast (a  few  days)!

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                    killmel
                    Participant

                      Hi Jill,

                       

                      I am so sorry for what you both are going through. Please take time and understand the ILP procedure. The outcome of ILP procedures are not very good. Do a search or post for comments & opinions of those who have experienced ILP.

                      Do not rush into this ILP procedure without knowing the side effects and success rate.

                       

                      Good Luck & May God watch over you both!

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                        Vermont_Donna
                        Participant

                          Hi Jill and Eric,

                             I am so sorry that you both are going through this. I can hardly look at the pictures of Eric's leg, I have never seen melanoma so up front and close. I wish you success with whatever path you take, and I do not know the merits over doing one first and then the other.

                          I can tell you a little bit about my ILP, done 14 months ago at Mass General. I had a heart transplant surgeon do the surgery (thats who specializes in melanoma and ILP's there). He believes that the ILP has an 85% cure rate although I dont know who that is for. My melanoma came back 7 or so months after my ILP. Maybe it would have re-occured sooner, who knows. The procedure went well, the recovery fine, for the first 10 days, then I developed severe neuropathy in my lower right leg and foot. I ended up in the hospital and on meds to manage the pain. My right foot is pretty numb and my lower right leg is too. Would I do it again knowing what I know about it and knowing the risk melanoma presents?? Yes I would. 85% is a high cure rate. it just didnt work for me. I dont know if there are better known parameters at this time as to who is a better surgical candidate. Eric may be someone who responds. Check it out. I know the other Jill and Eric have had a hard time. That Eric has had part of his leg/foot amputated. Sharyn also has had an ILP and her cancer came back a year later. We are individuals who experienced complications and re-occurences after having an ILP. Maybe the ones who have benefited have not written in, or even been on this board, Dont let our stories scare you away from what might be a good treatment for Eric. Talk to your doctors and ask lots of questions. Contact me if you want to know more!

                          Hugs and positive thoughts coming from Vermont,

                          Vermont_Donna

                          stage 3a

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                          Vermont_Donna
                          Participant

                            Hi Jill and Eric,

                               I am so sorry that you both are going through this. I can hardly look at the pictures of Eric's leg, I have never seen melanoma so up front and close. I wish you success with whatever path you take, and I do not know the merits over doing one first and then the other.

                            I can tell you a little bit about my ILP, done 14 months ago at Mass General. I had a heart transplant surgeon do the surgery (thats who specializes in melanoma and ILP's there). He believes that the ILP has an 85% cure rate although I dont know who that is for. My melanoma came back 7 or so months after my ILP. Maybe it would have re-occured sooner, who knows. The procedure went well, the recovery fine, for the first 10 days, then I developed severe neuropathy in my lower right leg and foot. I ended up in the hospital and on meds to manage the pain. My right foot is pretty numb and my lower right leg is too. Would I do it again knowing what I know about it and knowing the risk melanoma presents?? Yes I would. 85% is a high cure rate. it just didnt work for me. I dont know if there are better known parameters at this time as to who is a better surgical candidate. Eric may be someone who responds. Check it out. I know the other Jill and Eric have had a hard time. That Eric has had part of his leg/foot amputated. Sharyn also has had an ILP and her cancer came back a year later. We are individuals who experienced complications and re-occurences after having an ILP. Maybe the ones who have benefited have not written in, or even been on this board, Dont let our stories scare you away from what might be a good treatment for Eric. Talk to your doctors and ask lots of questions. Contact me if you want to know more!

                            Hugs and positive thoughts coming from Vermont,

                            Vermont_Donna

                            stage 3a

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                            Nancy
                            Participant

                              Jill, After the brain surgery for Buddy, Dr. Sharfman (Johns Hopkins) said no more gamma knife, etc. so Buddy could get into the IPI treatment at Philly.  The brain surgeon wanted to radiate the tumor beds.  We did the IPI – however, it did not work for Buddy.  Would the radiation have helped, I don't know.  His white blood cells were racing, the malanoma had gone to both lungs, liver, bladder so I don't think there was a cure for him at  that point.  The tumors came back to the brain, and they did 5 days of radiation to try to stop the bleeding, so he could enjoy the grandkids a while longer.  He was alert enough to make the decision of radiation, as well as all the other decisions along the way.  So he made the right decision himself.  But I know tumors that keep returning to the brain can't be good…If the ones in the brain can't be controlled, can you control the others.  In Buddy's case, the brain tumors returned and the tumors on the torso continued to increase in size, as well as new growth, so I feel God wanted to care for him….It's a tough decision to make-God Bless..

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                              Nancy
                              Participant

                                Jill, After the brain surgery for Buddy, Dr. Sharfman (Johns Hopkins) said no more gamma knife, etc. so Buddy could get into the IPI treatment at Philly.  The brain surgeon wanted to radiate the tumor beds.  We did the IPI – however, it did not work for Buddy.  Would the radiation have helped, I don't know.  His white blood cells were racing, the malanoma had gone to both lungs, liver, bladder so I don't think there was a cure for him at  that point.  The tumors came back to the brain, and they did 5 days of radiation to try to stop the bleeding, so he could enjoy the grandkids a while longer.  He was alert enough to make the decision of radiation, as well as all the other decisions along the way.  So he made the right decision himself.  But I know tumors that keep returning to the brain can't be good…If the ones in the brain can't be controlled, can you control the others.  In Buddy's case, the brain tumors returned and the tumors on the torso continued to increase in size, as well as new growth, so I feel God wanted to care for him….It's a tough decision to make-God Bless..

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                              killmel
                              Participant

                                Hi Jill,

                                 

                                I am so sorry for what you both are going through. Please take time and understand the ILP procedure. The outcome of ILP procedures are not very good. Do a search or post for comments & opinions of those who have experienced ILP.

                                Do not rush into this ILP procedure without knowing the side effects and success rate.

                                 

                                Good Luck & May God watch over you both!

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                                BethA in VA
                                Participant

                                  I'm very sorry you are in such a critical place right now.  How brave of you to post the picture.  It makes it so real, many people do not realize how bad MM is.  I am keeping you both in my thoughts and prayers.  Eric is very lucky to have you with him…you are doing a great job.  Hugs and Prayers.  Beth 3/B

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                                  BethA in VA
                                  Participant

                                    I'm very sorry you are in such a critical place right now.  How brave of you to post the picture.  It makes it so real, many people do not realize how bad MM is.  I am keeping you both in my thoughts and prayers.  Eric is very lucky to have you with him…you are doing a great job.  Hugs and Prayers.  Beth 3/B

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                                    jag
                                    Participant

                                      In my opinion his number one priority would be to get that bacterial infection under control.  At the same time I would try to schedule both at the same time ( you never know how long you might have to wait for either procedure).  If the ILP isn't going to happen until 2-3 weeks from now then do the SRS, If there are no openings for the SRS, do ILP etc.  If they can be scheduled at the same time, try for that.  One doesn't necessarily preclude the other.  One doctor may thing the priority is his leg, while the other might think his brain is more important.  It is likely that his confusion is due to a systemic infection rather than results from a recurrent tumor.  The tumor may grow back even if he does have the SRS, although SRS tends to be more effective on smaller sized tumors.  Ask the surgeon if he can go back in and get the whole thing if and when it does occur. .  

                                      I will pray that God gives you and Eric a peaceful life together (no matter how long it lasts)

                                      God Bless

                                      John

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                                      jag
                                      Participant

                                        In my opinion his number one priority would be to get that bacterial infection under control.  At the same time I would try to schedule both at the same time ( you never know how long you might have to wait for either procedure).  If the ILP isn't going to happen until 2-3 weeks from now then do the SRS, If there are no openings for the SRS, do ILP etc.  If they can be scheduled at the same time, try for that.  One doesn't necessarily preclude the other.  One doctor may thing the priority is his leg, while the other might think his brain is more important.  It is likely that his confusion is due to a systemic infection rather than results from a recurrent tumor.  The tumor may grow back even if he does have the SRS, although SRS tends to be more effective on smaller sized tumors.  Ask the surgeon if he can go back in and get the whole thing if and when it does occur. .  

                                        I will pray that God gives you and Eric a peaceful life together (no matter how long it lasts)

                                        God Bless

                                        John

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