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carbo taxol temodar trial 1 week in.

Forums General Melanoma Community carbo taxol temodar trial 1 week in.

  • Post
    Carmon in NM
    Participant

      I'm about ten daysinto the carbo taxol temodar trial I'm participating in at UNM Cancer Research Center and thought I would share how it's going in case anyone else is possibly going to do this type of study. Stage IV after two brain mets found 6/2010 (craniotomy & gamma knife) followed by an adrenal tumor showing up on scans 9/2010.

      I'm about ten daysinto the carbo taxol temodar trial I'm participating in at UNM Cancer Research Center and thought I would share how it's going in case anyone else is possibly going to do this type of study. Stage IV after two brain mets found 6/2010 (craniotomy & gamma knife) followed by an adrenal tumor showing up on scans 9/2010.

      I've been lucky to have had zero nausea but they had me on a very precise supportive protocol for that. I'm losing weight but not for lack of eating! The biggest problem I'm having with food is that my taste is changing and a lot of things don't taste right. I'm making sure to keep a lot of quick and easy foods on hand so that I can eat constant small snacks through the day. Creamy soups are really great for that and still taste good.

      The worst so far was day 4 and 5 of oral temodar which they warned me would cause bone and joint pain. I've never been one to get viruses or the flu so I wasn't prepared for the bone deep grating pain mostly in my hips and legs. As they also told me, it only lasted about 48 hours which helped me to get through it. Hot bathes and staying warm helped too. Now I'm dealing with neuorpathy which can be pretty intense too. For some reason it is mostly in the left side of my body and follows the major nerve meridians down my left leg. The only thing that really seems to help when it gets bad is the oxycodone I was prescribed for the intense pain I had after the adrenal biopsy.

      We live at nearly 8,000' altitude so I'm also starting to feel the affects on my bone marrow with fatigue and shortness of breath. I guess it's a good thing I'm adapted to a high altitude! They told me the low point on my blood counts would occur around day 15, November 8th, so I'm already being very careful about staying away from public places and washing my hands constantly. My hair is due to start falling out then too so I'm taking a preemptive strike and a friend is coming over later this week to shear me!

      So I guess my main message for anyone else is – don't be afraid! It is all very manageable. I have good friends who are coming and helping as needed but I'm still going out and feeding 6 horses every day, taking care of my house and dogs, and my husband is being a dear by helping with the cooking etc. If there were something I wish I had known about in advance, it is that my emotions would be so fragile and on the surface. I'm a very happy and optomistic person so it's a bit shocking to always be on the edge of tears. Just be prepared to be kind to yourself and for heaven's sake, surround yourself with happy, positive people! I've cut off quite a few people who insist on sharing the 'horrors of chemo' that they have read about on the net and about how many people are dying from melanoma!

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        lhaley
        Participant

          Carmon,

          So good to hear that your tolerating everything pretty well.  I know that neurapathy can be a real issue. Have you asked your Dr about possible treatments for it? I realize that some respond and some don't but…. worth a chance!  When I had my nerves cut during a surgery they put me on Lyrica along with a mild pain killer (I'm allergic to the heavy duty ones). The Lyrica helped to sooth the nerve endings much better than anything else I had tried in the past. 

          Glad you have friends that are willing to help out, and do stay away from the negative naysayers!!

          Hugs,

          Linda

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          lhaley
          Participant

            Carmon,

            So good to hear that your tolerating everything pretty well.  I know that neurapathy can be a real issue. Have you asked your Dr about possible treatments for it? I realize that some respond and some don't but…. worth a chance!  When I had my nerves cut during a surgery they put me on Lyrica along with a mild pain killer (I'm allergic to the heavy duty ones). The Lyrica helped to sooth the nerve endings much better than anything else I had tried in the past. 

            Glad you have friends that are willing to help out, and do stay away from the negative naysayers!!

            Hugs,

            Linda

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            King
            Participant

              Carmon,

               

              Great post.  Thanks for sharing.  We can learn so much from one another.  One day at a time.  Keeping you in my thoughts.  Keep us posted.

               

              Stay Strong
              King

              Stage IV 7/05 Liver mets

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              King
              Participant

                Carmon,

                 

                Great post.  Thanks for sharing.  We can learn so much from one another.  One day at a time.  Keeping you in my thoughts.  Keep us posted.

                 

                Stay Strong
                King

                Stage IV 7/05 Liver mets

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                  Linda/Kentucky
                  Participant

                    This message is for King.  You have liver mets, what did you do for yours that was effective?  and did you have many of them.  My husband has "innumerable" mets in his lungs and liver.  Did or do you have alot of fatigue from them?  We've been told that his liver mets is why he has debilitating fatigue?  Just wondering.  He did high dose IL-2 in Feb no response and finished Ipi in July no response.  We are probably at the stage of "quality of life" he is unable to tolerate harsh tx at this time due to weakness.  Thanks

                    Linda/Kentucky

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                    King
                    Participant

                      Hi Linda,

                       

                      I'm so sorry to hear about your husband's current status.  I advanced to Stage IV with liver mets in July 2005.  I had a liver resection (70% of my liver removed) and also my gall bladder just because it was nearby.  I had one known tumor in the liver…4.5 cm at the time of surgery.  A "little" tumor was found nearby during the surgery…it was too small to be seen on the scans.  My surgeon was very aggressive.  At that time, that was my only area of mets so I was a surgical candidate.  I had a recurrence around my pancreas in 2008.

                       

                      I admire your thinking that it might be time to consider "quality of life".  I'm a big believer in that way of thinking.   Have you considered a consult with Hospice?  You don't have to sign up but just talk about what their services could do for you, your husband and your family (now or in the future)

                       

                      Stay Strong
                      King

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                      King
                      Participant

                        Hi Linda,

                         

                        I'm so sorry to hear about your husband's current status.  I advanced to Stage IV with liver mets in July 2005.  I had a liver resection (70% of my liver removed) and also my gall bladder just because it was nearby.  I had one known tumor in the liver…4.5 cm at the time of surgery.  A "little" tumor was found nearby during the surgery…it was too small to be seen on the scans.  My surgeon was very aggressive.  At that time, that was my only area of mets so I was a surgical candidate.  I had a recurrence around my pancreas in 2008.

                         

                        I admire your thinking that it might be time to consider "quality of life".  I'm a big believer in that way of thinking.   Have you considered a consult with Hospice?  You don't have to sign up but just talk about what their services could do for you, your husband and your family (now or in the future)

                         

                        Stay Strong
                        King

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                        Linda/Kentucky
                        Participant

                          This message is for King.  You have liver mets, what did you do for yours that was effective?  and did you have many of them.  My husband has "innumerable" mets in his lungs and liver.  Did or do you have alot of fatigue from them?  We've been told that his liver mets is why he has debilitating fatigue?  Just wondering.  He did high dose IL-2 in Feb no response and finished Ipi in July no response.  We are probably at the stage of "quality of life" he is unable to tolerate harsh tx at this time due to weakness.  Thanks

                          Linda/Kentucky

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