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My husband Jim
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My husband Jim

› Forums › General Melanoma Community › My husband Jim

  • Post
    • August 25, 2010 at 4:11 pm
    Sherron
    Participant

      Hi Everyone,

      Hi Everyone,

      Well Jim is the one who did not surgery, No WLE, no SNB….he has only done many alternative treatments.  He was diagnosed 07-11-2006 with Nodudlar Melanoma.   He has felt well, actually wonderful, not missed a day of work, and is all about QUALITY OF LIFE, rather than Quanity of Life….2 years ago, he had a local recurrence, and he left it there for 1 year, finally getting it removed once the grandkids started asking questions.  The VA removed it offering scans and wanting to removed the 1 lymph node involved.  He still refused surgery or scans.  Well, the right cervical node is quite large now, is hurting some, with sharp pains and some numbness…could not sleep one night this week.  He appears okay today…He does have a new lump on the right side in the breast area,  Now on the opposite side of the neck I see a lump in the neck….one on his back…and one on the left side appearing some under some bruising area…I am just sick.  Obviously , this is spreading.  He has had 4 years and 1 month wonderful time.  If by some chance I could talk  him into  ANY KIND of systemtic  trreatment that had few side affects, what would it be,??? And I don't even know if anyone would treat him.  We have to go to the VA.  I don't even know if they have any treatments like the other hospitals.  I am grasping….at something , anything, a word from someone.  I don't even know (probably not) if I can talk him into some type of treatment , with few side effects that might buy us a little more time.  I am not asking for him.  He made his decision…I am asking for myself.  I need more time with him.

      Thank you,

      Take Care,

      Sherron, wife to Jim

    Viewing 11 reply threads
    • Replies
        • August 25, 2010 at 4:12 pm
        Sherron
        Participant

          Also I want you to know he is a warrior, he has fought hard, just in a different manner.

          Take Care,

          Sherron, wife to Jim

            • August 25, 2010 at 5:01 pm
            washoegal
            Participant

              Sherron, you have been so brave though this whole thing.  I would think the only thing the VA would offer is Interferon and that has many side effects.  I so wish I could take away some of your  worry.  It's too bad Jim won't allow at least some surgery to remove tumors.  It would make him more comfortable and slow the spread.  Please know that we are with you.

              • August 25, 2010 at 5:01 pm
              washoegal
              Participant

                Sherron, you have been so brave though this whole thing.  I would think the only thing the VA would offer is Interferon and that has many side effects.  I so wish I could take away some of your  worry.  It's too bad Jim won't allow at least some surgery to remove tumors.  It would make him more comfortable and slow the spread.  Please know that we are with you.

              • August 25, 2010 at 4:12 pm
              Sherron
              Participant

                Also I want you to know he is a warrior, he has fought hard, just in a different manner.

                Take Care,

                Sherron, wife to Jim

                • August 25, 2010 at 5:31 pm
                dian in spokane
                Participant

                  Sherron,

                  I would urge you to look into vaccine trials. The one I am on is only available in california, but I am betting there is something similar back east (I know when I wanted to find trials, it always seemed like ALL of them were out there!) I know quality of life is important to Jim and the trial I am on now allows me plenty of that. I did interferon back in 03, so I know how tough it can be and my vaccine trial is a totally different deal. I have not missed one event, party or gig. I had a shot last week and flew to las vegas the same afternoon.

                  Not only that, the vaccine trial works on building one's own immune system to fight the cancer, using the tumor material to train the immune system to recognise and destroy the melanona. And..Jim's already shown that his own immune system can do some work!

                  Most likely, any trial he enters will require scans, so there's not much way around that, but maybe he'll be willing to try that if the side effects are low.

                  Good luck Sherron, I know you must be scared and heartsick

                  • August 25, 2010 at 5:31 pm
                  dian in spokane
                  Participant

                    Sherron,

                    I would urge you to look into vaccine trials. The one I am on is only available in california, but I am betting there is something similar back east (I know when I wanted to find trials, it always seemed like ALL of them were out there!) I know quality of life is important to Jim and the trial I am on now allows me plenty of that. I did interferon back in 03, so I know how tough it can be and my vaccine trial is a totally different deal. I have not missed one event, party or gig. I had a shot last week and flew to las vegas the same afternoon.

                    Not only that, the vaccine trial works on building one's own immune system to fight the cancer, using the tumor material to train the immune system to recognise and destroy the melanona. And..Jim's already shown that his own immune system can do some work!

                    Most likely, any trial he enters will require scans, so there's not much way around that, but maybe he'll be willing to try that if the side effects are low.

                    Good luck Sherron, I know you must be scared and heartsick

                      • August 25, 2010 at 5:43 pm
                      Sherron
                      Participant

                        Thanks Diane, I will print this out for him….We live in Texas, no insurance, except thru the VA…..so not sure what to do. if I can talk him into something.

                         

                        Take Care,

                        Sherron, wife to Jim

                        • August 26, 2010 at 2:42 pm
                        killmel
                        Participant

                          Hi,

                           

                          I am someone who believes in quality of life like your husband. However, reality set in when I sarted toget syptoms & not feeling well and had todo something. I could not ignore the "beast".

                          I think that  Dian makes a good suggestion about vaccines, but it  the vaccine is using the patient's melanoma tumors to make the vaccine, it takes a long time. If I remember correctly, it took Dian 1 year to start getting her vaccine. I do not think that your husband has that kind of time based on your description of his disease progression.

                           

                          I hope that you can talk him into a tratment or surgery, but you do have to respect his decision.

                          Best ofLuck

                          • August 26, 2010 at 2:42 pm
                          killmel
                          Participant

                            Hi,

                             

                            I am someone who believes in quality of life like your husband. However, reality set in when I sarted toget syptoms & not feeling well and had todo something. I could not ignore the "beast".

                            I think that  Dian makes a good suggestion about vaccines, but it  the vaccine is using the patient's melanoma tumors to make the vaccine, it takes a long time. If I remember correctly, it took Dian 1 year to start getting her vaccine. I do not think that your husband has that kind of time based on your description of his disease progression.

                             

                            I hope that you can talk him into a tratment or surgery, but you do have to respect his decision.

                            Best ofLuck

                            • August 25, 2010 at 5:43 pm
                            Sherron
                            Participant

                              Thanks Diane, I will print this out for him….We live in Texas, no insurance, except thru the VA…..so not sure what to do. if I can talk him into something.

                               

                              Take Care,

                              Sherron, wife to Jim

                            • August 25, 2010 at 5:43 pm
                            yensidw
                            Participant

                              Sherron, I don't have anything to offer but my prayers.  I know just how you feel about wanting more time with him. 

                              • August 25, 2010 at 5:43 pm
                              yensidw
                              Participant

                                Sherron, I don't have anything to offer but my prayers.  I know just how you feel about wanting more time with him. 

                                • August 25, 2010 at 5:54 pm
                                Janner
                                Participant

                                  Sharon,

                                  Is the VA Jim is at associated with another hospital?  My Dad went to the VA for his 3 cancers.  For his lung cancer, they sent him to the local cancer center for "4-D radiation".  This is state of the art technology.  The VA covered it.  I think the VA can and will cover stuff done at other centers IF they don't offer something similar in their own facility.   If I were you, I'd investigate IPI.  While it can have side effects, it's not in the same league as some of the big guns like biochemo and IL-2.  Baring that, maybe Temodar.  I think fatigue is the only real side effect with that one.

                                  Good luck,

                                  Janner

                                  • August 25, 2010 at 5:54 pm
                                  Janner
                                  Participant

                                    Sharon,

                                    Is the VA Jim is at associated with another hospital?  My Dad went to the VA for his 3 cancers.  For his lung cancer, they sent him to the local cancer center for "4-D radiation".  This is state of the art technology.  The VA covered it.  I think the VA can and will cover stuff done at other centers IF they don't offer something similar in their own facility.   If I were you, I'd investigate IPI.  While it can have side effects, it's not in the same league as some of the big guns like biochemo and IL-2.  Baring that, maybe Temodar.  I think fatigue is the only real side effect with that one.

                                    Good luck,

                                    Janner

                                    • August 25, 2010 at 6:03 pm
                                    Kevin from Atlanta
                                    Participant

                                      The VA offers all current treatments for melanoma. I looked to see how active the VA is in offering drug trials but really couldn't find a proper answer.

                                      • August 25, 2010 at 6:03 pm
                                      Kevin from Atlanta
                                      Participant

                                        The VA offers all current treatments for melanoma. I looked to see how active the VA is in offering drug trials but really couldn't find a proper answer.

                                        • August 27, 2010 at 6:04 pm
                                        Love_Monkey
                                        Participant

                                          God has been putting you on my heart for a week now.  Praying for you and Jim daily Sherron.

                                          Danielle

                                          • August 27, 2010 at 6:04 pm
                                          Love_Monkey
                                          Participant

                                            God has been putting you on my heart for a week now.  Praying for you and Jim daily Sherron.

                                            Danielle

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