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No help

Forums General Melanoma Community No help

  • Post
    Nebr78
    Participant

    I have Melanoma stage 4 , male, 78, heart disease.  I have had my limit of Temodar.  Took a CT scan and lab reported nothing growing. I asked about a particular lymph node and they couldn't answer anything about it.  Dr. contacted lab again and now they said it had grown 30%.  Will never use that lab again.  I have been sitting here for about 2 months and no one is doing anything.  I have changed Dr. once and will not again.  I will not spend my estate searching for help.  I am going for one more Dr.

    I have Melanoma stage 4 , male, 78, heart disease.  I have had my limit of Temodar.  Took a CT scan and lab reported nothing growing. I asked about a particular lymph node and they couldn't answer anything about it.  Dr. contacted lab again and now they said it had grown 30%.  Will never use that lab again.  I have been sitting here for about 2 months and no one is doing anything.  I have changed Dr. once and will not again.  I will not spend my estate searching for help.  I am going for one more Dr. visit and if they have no plan, I will just probably quit going back.  I have said it before and will say it again, Cancer is just too big a business to try to cure someone.  They just seem to not want to treat older patients.  Not much pain, I have lump in front of ear, lymph node by armpit size of golf ball almost. Don't know what the spots in lung and spine are doing.   I take pain pills when pain comes.  I really don't know what is going to happen from now on with no treatment.

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      Rodensir
      Participant

      Sorry you are finding treatment so hard to get being a stage IV survivor I understand the frustration.

      One choice at this point would be research studies and the place for you check that out would be Cancer.gov and follow the menu items telling you how to find studies. As I advanced though the stages that is what I did.   My experience is that the standard doctors are not good at doing this research for patients and you have to very proactive, looking for sites, studies and calling in.  

      It also sounds like a heart to heart with your doctor is in order.  If you are thinking of no treatment which is legitimate choice try talking to  a hospice.  I know that this was possibility for me so I spent sometime volunteering for one in my area and it was a good experience for me and for the patients I visited with. The benefits is that people are treated a whole unit treating the mind, body and sprite that helped with finding peace solving problems, and usually all the costs are covered for everything.  

      My thoughts are with you.

      Allan

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      Rodensir
      Participant

      Sorry you are finding treatment so hard to get being a stage IV survivor I understand the frustration.

      One choice at this point would be research studies and the place for you check that out would be Cancer.gov and follow the menu items telling you how to find studies. As I advanced though the stages that is what I did.   My experience is that the standard doctors are not good at doing this research for patients and you have to very proactive, looking for sites, studies and calling in.  

      It also sounds like a heart to heart with your doctor is in order.  If you are thinking of no treatment which is legitimate choice try talking to  a hospice.  I know that this was possibility for me so I spent sometime volunteering for one in my area and it was a good experience for me and for the patients I visited with. The benefits is that people are treated a whole unit treating the mind, body and sprite that helped with finding peace solving problems, and usually all the costs are covered for everything.  

      My thoughts are with you.

      Allan

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      Rodensir
      Participant

      Sorry you are finding treatment so hard to get being a stage IV survivor I understand the frustration.

      One choice at this point would be research studies and the place for you check that out would be Cancer.gov and follow the menu items telling you how to find studies. As I advanced though the stages that is what I did.   My experience is that the standard doctors are not good at doing this research for patients and you have to very proactive, looking for sites, studies and calling in.  

      It also sounds like a heart to heart with your doctor is in order.  If you are thinking of no treatment which is legitimate choice try talking to  a hospice.  I know that this was possibility for me so I spent sometime volunteering for one in my area and it was a good experience for me and for the patients I visited with. The benefits is that people are treated a whole unit treating the mind, body and sprite that helped with finding peace solving problems, and usually all the costs are covered for everything.  

      My thoughts are with you.

      Allan

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      Rodensir
      Participant

      Sorry you are finding treatment so hard to get being a stage IV survivor I understand the frustration.

      One choice at this point would be research studies and the place for you check that out would be Cancer.gov and follow the menu items telling you how to find studies. As I advanced though the stages that is what I did.   My experience is that the standard doctors are not good at doing this research for patients and you have to very proactive, looking for sites, studies and calling in.  

      It also sounds like a heart to heart with your doctor is in order.  If you are thinking of no treatment which is legitimate choice try talking to  a hospice.  I know that this was possibility for me so I spent sometime volunteering for one in my area and it was a good experience for me and for the patients I visited with. The benefits is that people are treated a whole unit treating the mind, body and sprite that helped with finding peace solving problems, and usually all the costs are covered for everything.  

      My thoughts are with you.

      Allan

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      Rodensir
      Participant

      Sorry you are finding treatment so hard to get being a stage IV survivor I understand the frustration.

      One choice at this point would be research studies and the place for you check that out would be Cancer.gov and follow the menu items telling you how to find studies. As I advanced though the stages that is what I did.   My experience is that the standard doctors are not good at doing this research for patients and you have to very proactive, looking for sites, studies and calling in.  

      It also sounds like a heart to heart with your doctor is in order.  If you are thinking of no treatment which is legitimate choice try talking to  a hospice.  I know that this was possibility for me so I spent sometime volunteering for one in my area and it was a good experience for me and for the patients I visited with. The benefits is that people are treated a whole unit treating the mind, body and sprite that helped with finding peace solving problems, and usually all the costs are covered for everything.  

      My thoughts are with you.

      Allan

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        KellieSue
        Participant

        I'm so sorry you are dealing with dr's who don't really seem to care. That is ridiculous!

        You should really try to find a dr. that can look at you and formulate a plan if that is what you desire!

        I agree with Allan about being proactive and looking for dr's, sites and studies.

        Kellie(from Iowa) Stage IV

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        KellieSue
        Participant

        I'm so sorry you are dealing with dr's who don't really seem to care. That is ridiculous!

        You should really try to find a dr. that can look at you and formulate a plan if that is what you desire!

        I agree with Allan about being proactive and looking for dr's, sites and studies.

        Kellie(from Iowa) Stage IV

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      Rodensir
      Participant

      Sorry you are finding treatment so hard to get being a stage IV survivor I understand the frustration.

      One choice at this point would be research studies and the place for you check that out would be Cancer.gov and follow the menu items telling you how to find studies. As I advanced though the stages that is what I did.   My experience is that the standard doctors are not good at doing this research for patients and you have to very proactive, looking for sites, studies and calling in.  

      It also sounds like a heart to heart with your doctor is in order.  If you are thinking of no treatment which is legitimate choice try talking to  a hospice.  I know that this was possibility for me so I spent sometime volunteering for one in my area and it was a good experience for me and for the patients I visited with. The benefits is that people are treated a whole unit treating the mind, body and sprite that helped with finding peace solving problems, and usually all the costs are covered for everything.  

      My thoughts are with you.

      Allan

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      Jim in Denver
      Participant

      I have posted to you before, and recall your frustration.  Maybe the Docs in Lincoln are not the best when it comes to melanoma?  Why not look at neighboring states, like Kansas or Colorado?  Have you ruled out even considering Ipilimumab (Ipi)?  You would seem to be eligible for the "compassionate use" trial in Hutchison KS or Denver CO.  I dont' think age is really a negative, although I know you have some heart issues.  Here is some information:

      http://www.clinicaltrials.gov/ct2/show/NCT00495066?term=ipilimumab&recr=Open&rank=8

      Best Wishes,

      Jim

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      Jim in Denver
      Participant

      I have posted to you before, and recall your frustration.  Maybe the Docs in Lincoln are not the best when it comes to melanoma?  Why not look at neighboring states, like Kansas or Colorado?  Have you ruled out even considering Ipilimumab (Ipi)?  You would seem to be eligible for the "compassionate use" trial in Hutchison KS or Denver CO.  I dont' think age is really a negative, although I know you have some heart issues.  Here is some information:

      http://www.clinicaltrials.gov/ct2/show/NCT00495066?term=ipilimumab&recr=Open&rank=8

      Best Wishes,

      Jim

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