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have to repeat PET/CT in 6 to 8 weeks

Forums General Melanoma Community have to repeat PET/CT in 6 to 8 weeks

  • Post
    Vermont_Donna
    Participant

    Hi,

    Hi,

    My PET/CT scans of a week ago lit up everywhere in my leg (the leg where melanoma has been found over the last 4 years). I was three weeks out of radiation when the scans were done…..so too soon they said….(although I didnt make the appt, and it had been 4 months since a oncology checkup)….but now I'll know for next time! My oncologist said he has sent my tumor off to be analyzed more in case other treatments are needed, but he wants to wait another 6 to 8 weeks before scanning again. If I notice anything new pop up then I will call right away. I have read all the posts about BRAF and C KIT etc but I have had a hard time absorbing the information as I havent had to think about other treatment options for me up until, possibly now……so not to be coming off sounding stupid or not taking an active enough role in my melanoma cancer care, would people be so kind as to tell me, when he says he is sending the tumor off to be analyzed, what is he looking for and what treatments might that lead too? If needed, as I said after my next scans. There are so many drugs and options and trials etc that are discussed here I do feel a bit overwhelmed with even where to start my own research.

    Thanks so much.

     

    Vermont_Donna, stage 3a, post 11 months interferon, post 7 months Gm CSF (leukine), post ILP a year ago, and post TWO different rounds of radiation (basically now my whole leg has been radiated, from ankle to groin)

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  • Replies
      Sharyn
      Participant

      Hi Donna!

      It's quite possible he's sending your tumors off for a genetic profiling, but not being a doctor myself, I'm sure there's a myriad of other things he could be looking for. If it is genetic profiling, it will be helpful to know if you have a gene mutation, like BRAF, C-KIT, NRAS, etc. That way you can find a treatment that targets your specific mutation, if you wanted to go that route. It's always best to have a few back-up plans in your back pocket. :>)

      We still haven't gotten together in Montreal, and I'm not forgetting about that. It's just that Jim can't take too much time off work these days, so our trips are up and back, with no time for fun or weekend stays. But when that changes, I'll let you know. I'm sure you'd love to meet Val too. She's doing the Ipi trial, started on Tues, and I'm starting next Thurs.

      Good luck and keep in touch.

      Hugs

      Sharyn

      Stage IV

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      Sharyn
      Participant

      Hi Donna!

      It's quite possible he's sending your tumors off for a genetic profiling, but not being a doctor myself, I'm sure there's a myriad of other things he could be looking for. If it is genetic profiling, it will be helpful to know if you have a gene mutation, like BRAF, C-KIT, NRAS, etc. That way you can find a treatment that targets your specific mutation, if you wanted to go that route. It's always best to have a few back-up plans in your back pocket. :>)

      We still haven't gotten together in Montreal, and I'm not forgetting about that. It's just that Jim can't take too much time off work these days, so our trips are up and back, with no time for fun or weekend stays. But when that changes, I'll let you know. I'm sure you'd love to meet Val too. She's doing the Ipi trial, started on Tues, and I'm starting next Thurs.

      Good luck and keep in touch.

      Hugs

      Sharyn

      Stage IV

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      ValinMtl
      Participant

      Hi Donna,

      Hope your next round of scans are better.  I tested negative for B-RAF (as did Sharyn), that's why I went with the compassionate ipi trial.  B-RAF would have been my first choice, although some of the recent comments on this board might have made be a little hesistant, I'm sure you have read those as well, best to speak to your oncologist for his thoughts.

      Would love to meet you.  As I said I'm right near the Champlain border in Canada. When Sharyn is available for a longer time in Montreal, we could meet up near there and then go in together for  a rendez-vous.  Val

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      ValinMtl
      Participant

      Hi Donna,

      Hope your next round of scans are better.  I tested negative for B-RAF (as did Sharyn), that's why I went with the compassionate ipi trial.  B-RAF would have been my first choice, although some of the recent comments on this board might have made be a little hesistant, I'm sure you have read those as well, best to speak to your oncologist for his thoughts.

      Would love to meet you.  As I said I'm right near the Champlain border in Canada. When Sharyn is available for a longer time in Montreal, we could meet up near there and then go in together for  a rendez-vous.  Val

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      SusanE
      Participant

      Hi Donna. Hey hang in there. I can tell by your posts that this melanoma crap, treatment etc is wearing on you. It is so hard, but you can do it. Keep going. I really hope you find a treatment that works for you.

      Jerry's leg has always lit up on scans for the past year. Yesterday marked the 1 year out from his ILP. We are happy to report that we are still Stage III. He may lose his foot though. It has not recovered from the ILP, loss of function, still not healed, bone infection, etc. They will take care of his intransits at the same time. We did chemo based on a scan that he had a tumor in his thigh. It seems to have kept the intransits from popping up all the time. He had a surgical biopsy to confirm it is not a tumor!

      Jerryfromfauq was the one who told us about ckit being common for acral melanoma and one other type. If you are positive then you can be treated with Gleevac (possibly also know as Sorafinib or something like that).

      My Jerry had Ckit and Braf wild type so we can't go either route. I don't know the other mutations that they test for which is something I need to figure out. I know there is NRAS, but I don't know what treatments are used for it.

      Take care and I hope to see some posts that give more info on the mutations etc.

      Sending hugs your way,

      Susan wife of Jerry

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        Vermont_Donna
        Participant

        Thanks Sharyn, Val and Susan! Today is my one year anniversary (I think) from my ILP!!!! I am not so much weary as I feel confused and anxious……but I thank you for all your kind words of support and suggestions. Sharyn and Val, we will meet in Montreal as soon as we can all coordinate our schedules!!!!

        Love,

        Vermont_Donna

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        Vermont_Donna
        Participant

        Thanks Sharyn, Val and Susan! Today is my one year anniversary (I think) from my ILP!!!! I am not so much weary as I feel confused and anxious……but I thank you for all your kind words of support and suggestions. Sharyn and Val, we will meet in Montreal as soon as we can all coordinate our schedules!!!!

        Love,

        Vermont_Donna

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      SusanE
      Participant

      Hi Donna. Hey hang in there. I can tell by your posts that this melanoma crap, treatment etc is wearing on you. It is so hard, but you can do it. Keep going. I really hope you find a treatment that works for you.

      Jerry's leg has always lit up on scans for the past year. Yesterday marked the 1 year out from his ILP. We are happy to report that we are still Stage III. He may lose his foot though. It has not recovered from the ILP, loss of function, still not healed, bone infection, etc. They will take care of his intransits at the same time. We did chemo based on a scan that he had a tumor in his thigh. It seems to have kept the intransits from popping up all the time. He had a surgical biopsy to confirm it is not a tumor!

      Jerryfromfauq was the one who told us about ckit being common for acral melanoma and one other type. If you are positive then you can be treated with Gleevac (possibly also know as Sorafinib or something like that).

      My Jerry had Ckit and Braf wild type so we can't go either route. I don't know the other mutations that they test for which is something I need to figure out. I know there is NRAS, but I don't know what treatments are used for it.

      Take care and I hope to see some posts that give more info on the mutations etc.

      Sending hugs your way,

      Susan wife of Jerry

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      King
      Participant

      Thinking of  you,  Donna!  One step at a time.  I'm sure the waiting for the next round of scans has to be very difficult.  It will give you time to do research and get some plans in place (just in case they are needed).  Keep us posted.  And I agree that it's tough to keep up with all the latest trials and responses but we know the MPIP family will share all they know.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Thinking of  you,  Donna!  One step at a time.  I'm sure the waiting for the next round of scans has to be very difficult.  It will give you time to do research and get some plans in place (just in case they are needed).  Keep us posted.  And I agree that it's tough to keep up with all the latest trials and responses but we know the MPIP family will share all they know.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      Rocklove
      Participant

      Donna I am sorry to hear what is going on. I think we have followed each other for some time. I remember I went through radiation in my groin and it beat my body down so bad… The melanoma kicked in a spread to the lymph nodes and liver. Have you discussed bio-chemo with your doctor's. It is brutal.. but if you are a responder it is worth the trouble.

      I have heard that the BRAF and C Kit in many cases do not last long. Hopefully someone on the board will get you the information you need. All of us are so different with treatments.

      Always Praying For You Donna.

      Rocky (Stage IV Liver Mets)

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      Rocklove
      Participant

      Donna I am sorry to hear what is going on. I think we have followed each other for some time. I remember I went through radiation in my groin and it beat my body down so bad… The melanoma kicked in a spread to the lymph nodes and liver. Have you discussed bio-chemo with your doctor's. It is brutal.. but if you are a responder it is worth the trouble.

      I have heard that the BRAF and C Kit in many cases do not last long. Hopefully someone on the board will get you the information you need. All of us are so different with treatments.

      Always Praying For You Donna.

      Rocky (Stage IV Liver Mets)

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      Hi Donna,

      I am sorry to hear about your latest PET/CT.  I would assume that "sending the tumors off" means to get it genetically tested.  But then again, I'm not a doctor.  

      If you have any questions about the Braf trial, I would be happy to answer anything I could from my perspective.  (Did you get my email last week?)

      Sounds like there are a lot of us Northeasterners with this melanoma beast…  boy do I long for Vermont right now!  

      Take care.  You are in my thoughts and prayers. 

      Peace and light,

      Shelly in SW

       

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      Hi Donna,

      I am sorry to hear about your latest PET/CT.  I would assume that "sending the tumors off" means to get it genetically tested.  But then again, I'm not a doctor.  

      If you have any questions about the Braf trial, I would be happy to answer anything I could from my perspective.  (Did you get my email last week?)

      Sounds like there are a lot of us Northeasterners with this melanoma beast…  boy do I long for Vermont right now!  

      Take care.  You are in my thoughts and prayers. 

      Peace and light,

      Shelly in SW

       

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