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Forums General Melanoma Community Need advice

  • Post
    stevecathy
    Participant
    My husband was dx July of 2015. Mel of 4th toe , ampution of toe , lymph node direction groin. 4 total nodes positive. Had yerovoy all 4 infusions then had Mets in transit on thigh. All removed, then started mekinist and taflinar. He suffered from fever and chills bad , reduced dosage twice. Before starting mek/taf scan showed nodule in lung measured 2-3 mm ,and lymph node by heart was large . Now today’s scan shows improved, nodule 2mm and lymph node smaller. So continue mek/taf but reduced to 75 mg twice day instead of 100mg. I’ve been researching nodule in lung being so small . What I’ve read of under 2 cm it’s likely to be benign. He’s is 2 mm. I’m curious of thoughts , wondering if going overboard with mek/taf and not giving yerovoy a chance . His is treated at ctca. We love them but my mind is getting the best of me wondering if he is getting toxins that maybe not needed. Please , welcome any thoughts and advice. Thank you
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      adriana cooper
      Participant

      Of Adriana's 20 lung mets all were less than 2cm, most less than 1. The one that was biopsied via VATS was 8mm I think and was confirmed as melanoma, certainly not benign, and continued to through 16 weeks of Yervoy. The BRAF combo reduced mets to very few in number. Now post Gamma Knife and Keytruda x5 none visable. So my opinion is not overboard. 

      Rob

      adriana cooper
      Participant

      Of Adriana's 20 lung mets all were less than 2cm, most less than 1. The one that was biopsied via VATS was 8mm I think and was confirmed as melanoma, certainly not benign, and continued to through 16 weeks of Yervoy. The BRAF combo reduced mets to very few in number. Now post Gamma Knife and Keytruda x5 none visable. So my opinion is not overboard. 

      Rob

        stevecathy
        Participant
        Thank you for the reply . My mind is on over load . I appreciate hearing from others and the advice. Thank you
        stevecathy
        Participant
        Thank you for the reply . My mind is on over load . I appreciate hearing from others and the advice. Thank you
        stevecathy
        Participant
        Thank you for the reply . My mind is on over load . I appreciate hearing from others and the advice. Thank you
      adriana cooper
      Participant

      Of Adriana's 20 lung mets all were less than 2cm, most less than 1. The one that was biopsied via VATS was 8mm I think and was confirmed as melanoma, certainly not benign, and continued to through 16 weeks of Yervoy. The BRAF combo reduced mets to very few in number. Now post Gamma Knife and Keytruda x5 none visable. So my opinion is not overboard. 

      Rob

      ed williams
      Participant

      Hi Cathy, I was wondering the time line between his Ipi treatments to when he started taking Mek/taf? Were there scans of lung done in the past to use as a comparison if so then something new usually would suggest progression of Melanoma? I was thinking that the only real way to be 100% sure is to do a biopsy which for something that small would be very difficult and not much fun at the best of times!!! Seems like the targeted therapy combination is working which is good news!!!! Best wishes!!! Ed

      ed williams
      Participant

      Hi Cathy, I was wondering the time line between his Ipi treatments to when he started taking Mek/taf? Were there scans of lung done in the past to use as a comparison if so then something new usually would suggest progression of Melanoma? I was thinking that the only real way to be 100% sure is to do a biopsy which for something that small would be very difficult and not much fun at the best of times!!! Seems like the targeted therapy combination is working which is good news!!!! Best wishes!!! Ed

      ed williams
      Participant

      Hi Cathy, I was wondering the time line between his Ipi treatments to when he started taking Mek/taf? Were there scans of lung done in the past to use as a comparison if so then something new usually would suggest progression of Melanoma? I was thinking that the only real way to be 100% sure is to do a biopsy which for something that small would be very difficult and not much fun at the best of times!!! Seems like the targeted therapy combination is working which is good news!!!! Best wishes!!! Ed

        stevecathy
        Participant
        The yerovoy finished in November, then dermatologist appt found Mets in transit on follow up in December. So started mek/taf in January. Scan in January compared to scan in September. They said it was too small for biopsy, they said clinical it would be metastasized. He actually had 2 in lung , one 5mm the other 3mm . The 5 mm was no longer seen in March the 3 was smaller and then scan this week showed 3 mm is now 2 mm . I guess I’m just trying to convince myself other is mel and just inflammation or something. He has had a lot of side effects with mek/ taf now is on 75mg taf due to side effects. He is strong and willing to fight through it though. He did so good on yerovoy, he literally had no side effects.
        stevecathy
        Participant
        The yerovoy finished in November, then dermatologist appt found Mets in transit on follow up in December. So started mek/taf in January. Scan in January compared to scan in September. They said it was too small for biopsy, they said clinical it would be metastasized. He actually had 2 in lung , one 5mm the other 3mm . The 5 mm was no longer seen in March the 3 was smaller and then scan this week showed 3 mm is now 2 mm . I guess I’m just trying to convince myself other is mel and just inflammation or something. He has had a lot of side effects with mek/ taf now is on 75mg taf due to side effects. He is strong and willing to fight through it though. He did so good on yerovoy, he literally had no side effects.
        stevecathy
        Participant
        The yerovoy finished in November, then dermatologist appt found Mets in transit on follow up in December. So started mek/taf in January. Scan in January compared to scan in September. They said it was too small for biopsy, they said clinical it would be metastasized. He actually had 2 in lung , one 5mm the other 3mm . The 5 mm was no longer seen in March the 3 was smaller and then scan this week showed 3 mm is now 2 mm . I guess I’m just trying to convince myself other is mel and just inflammation or something. He has had a lot of side effects with mek/ taf now is on 75mg taf due to side effects. He is strong and willing to fight through it though. He did so good on yerovoy, he literally had no side effects.
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