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TMCook

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      TMCook
      Participant

        Hello David,

        Sorry to hear you're dealing with this horrible disease but, rest assured, you are not alone. It's a scary time, and you're on the right path (educating yourself) aside from seeking the best medical attention that's available.

        I was diagnosed with Stage 3 Melanoma (T4B) in May, 2015. My tumor was 7.1 mm, ulcerated and vascular invasion was "present". I, too, had a resection done, a Sentinel Node Biopsy, and skin graft with assurance that my margins are clear. After having blood work, CT and PET scans, I had a PICC line inserted and started Interferon Alpha-2b in August. The side effects that I encountered was nausea, diarrhea, chills and fever. The chills started while I was getting my infusions, and continued for hours after getting home. I was instructed to take (2) Tylenol, 4 hours after getting the infustion but I didn't feel any of its effect. The chills would segue into a low-grade fever, which lasted 2-4 hours and then would finally break. During the infusion, continuing throught the chills/fever time frame, I would feel nauseous even though I was taking anti-nausea medicines. I would even get them along with the infusion, but still have to have a "special cocktail" added on the days I wasn't able to receive Interferon. In my case, I would have 2-3 infusions and then have to receive fluids/anti-nausea medicines only. My blood work would be within range, but because I was so sick (vomiting/diarrhea) I was losing weight, dehydrated and very weak. Sadly, I wasn't able to complete the 20 treatments, which was to be followed by 48 weeks of 3 Interferon shots/per week. Since there is no alternative (for me) at this time, I'm doing the "watch and see", along with seeing my Oncologist & Dermatologist, alternating with CT/PET scans, every 3 months.

        Not being able to complete the treatment was depressing for me, until I was reminded that only 7% realize long-term success, as well as the studies showed that the mortality rate was the same for both groups (those that received the drug vs those that didn't). After hearing that last little note, my spirits were raised considerably. I am glad that I at least tried doing it, as I would have always second-guessed myself if I didn't – but that is me.

        That being said, I am sure you'll arrive at the best decision for you. Just keep in mind that not everyone experiences the stated side-effects, and I was told that many found they subsided as the treatments progress (not in my case).

        I wish you the very best, David. God Bless.

         

        TMCook
        Participant

          Hello David,

          Sorry to hear you're dealing with this horrible disease but, rest assured, you are not alone. It's a scary time, and you're on the right path (educating yourself) aside from seeking the best medical attention that's available.

          I was diagnosed with Stage 3 Melanoma (T4B) in May, 2015. My tumor was 7.1 mm, ulcerated and vascular invasion was "present". I, too, had a resection done, a Sentinel Node Biopsy, and skin graft with assurance that my margins are clear. After having blood work, CT and PET scans, I had a PICC line inserted and started Interferon Alpha-2b in August. The side effects that I encountered was nausea, diarrhea, chills and fever. The chills started while I was getting my infusions, and continued for hours after getting home. I was instructed to take (2) Tylenol, 4 hours after getting the infustion but I didn't feel any of its effect. The chills would segue into a low-grade fever, which lasted 2-4 hours and then would finally break. During the infusion, continuing throught the chills/fever time frame, I would feel nauseous even though I was taking anti-nausea medicines. I would even get them along with the infusion, but still have to have a "special cocktail" added on the days I wasn't able to receive Interferon. In my case, I would have 2-3 infusions and then have to receive fluids/anti-nausea medicines only. My blood work would be within range, but because I was so sick (vomiting/diarrhea) I was losing weight, dehydrated and very weak. Sadly, I wasn't able to complete the 20 treatments, which was to be followed by 48 weeks of 3 Interferon shots/per week. Since there is no alternative (for me) at this time, I'm doing the "watch and see", along with seeing my Oncologist & Dermatologist, alternating with CT/PET scans, every 3 months.

          Not being able to complete the treatment was depressing for me, until I was reminded that only 7% realize long-term success, as well as the studies showed that the mortality rate was the same for both groups (those that received the drug vs those that didn't). After hearing that last little note, my spirits were raised considerably. I am glad that I at least tried doing it, as I would have always second-guessed myself if I didn't – but that is me.

          That being said, I am sure you'll arrive at the best decision for you. Just keep in mind that not everyone experiences the stated side-effects, and I was told that many found they subsided as the treatments progress (not in my case).

          I wish you the very best, David. God Bless.

           

          TMCook
          Participant

            Hello David,

            Sorry to hear you're dealing with this horrible disease but, rest assured, you are not alone. It's a scary time, and you're on the right path (educating yourself) aside from seeking the best medical attention that's available.

            I was diagnosed with Stage 3 Melanoma (T4B) in May, 2015. My tumor was 7.1 mm, ulcerated and vascular invasion was "present". I, too, had a resection done, a Sentinel Node Biopsy, and skin graft with assurance that my margins are clear. After having blood work, CT and PET scans, I had a PICC line inserted and started Interferon Alpha-2b in August. The side effects that I encountered was nausea, diarrhea, chills and fever. The chills started while I was getting my infusions, and continued for hours after getting home. I was instructed to take (2) Tylenol, 4 hours after getting the infustion but I didn't feel any of its effect. The chills would segue into a low-grade fever, which lasted 2-4 hours and then would finally break. During the infusion, continuing throught the chills/fever time frame, I would feel nauseous even though I was taking anti-nausea medicines. I would even get them along with the infusion, but still have to have a "special cocktail" added on the days I wasn't able to receive Interferon. In my case, I would have 2-3 infusions and then have to receive fluids/anti-nausea medicines only. My blood work would be within range, but because I was so sick (vomiting/diarrhea) I was losing weight, dehydrated and very weak. Sadly, I wasn't able to complete the 20 treatments, which was to be followed by 48 weeks of 3 Interferon shots/per week. Since there is no alternative (for me) at this time, I'm doing the "watch and see", along with seeing my Oncologist & Dermatologist, alternating with CT/PET scans, every 3 months.

            Not being able to complete the treatment was depressing for me, until I was reminded that only 7% realize long-term success, as well as the studies showed that the mortality rate was the same for both groups (those that received the drug vs those that didn't). After hearing that last little note, my spirits were raised considerably. I am glad that I at least tried doing it, as I would have always second-guessed myself if I didn't – but that is me.

            That being said, I am sure you'll arrive at the best decision for you. Just keep in mind that not everyone experiences the stated side-effects, and I was told that many found they subsided as the treatments progress (not in my case).

            I wish you the very best, David. God Bless.

             

            TMCook
            Participant

              Sorry I wasn't clearer with the "3 month" scenario. My scans will alternate, and they will be spaced 6 months apart (per my insurance coverage) so I'll have these 1x/year each. In between these, I will be seeing my Oncology Surgeon, Oncologist, and Oncology Dermatologist. My Oncologist orders the CT scan for checking pelvis, chest and abdomen (with contrast) for activity. The PET is to check the brain for activity, or "hot" spots. Reading other posts, I've noticed we're all over the place with what was recommended, or decided upon, so I'm only relaying my experince to-date. BTW, I refused to see the Dermatologist I'd been seeing for the last 20+ years, so I asked my Oncologist for a recommendation. Wow, what a difference between the two (past and present dermatologist)! I was checked head to toe, I mean really checked throughout my head, complete body scan down to, and between, my toes. Keep the Faith, stay strong and healthy!

              yes

              TMCook
              Participant

                Sorry I wasn't clearer with the "3 month" scenario. My scans will alternate, and they will be spaced 6 months apart (per my insurance coverage) so I'll have these 1x/year each. In between these, I will be seeing my Oncology Surgeon, Oncologist, and Oncology Dermatologist. My Oncologist orders the CT scan for checking pelvis, chest and abdomen (with contrast) for activity. The PET is to check the brain for activity, or "hot" spots. Reading other posts, I've noticed we're all over the place with what was recommended, or decided upon, so I'm only relaying my experince to-date. BTW, I refused to see the Dermatologist I'd been seeing for the last 20+ years, so I asked my Oncologist for a recommendation. Wow, what a difference between the two (past and present dermatologist)! I was checked head to toe, I mean really checked throughout my head, complete body scan down to, and between, my toes. Keep the Faith, stay strong and healthy!

                yes

                TMCook
                Participant

                  Sorry I wasn't clearer with the "3 month" scenario. My scans will alternate, and they will be spaced 6 months apart (per my insurance coverage) so I'll have these 1x/year each. In between these, I will be seeing my Oncology Surgeon, Oncologist, and Oncology Dermatologist. My Oncologist orders the CT scan for checking pelvis, chest and abdomen (with contrast) for activity. The PET is to check the brain for activity, or "hot" spots. Reading other posts, I've noticed we're all over the place with what was recommended, or decided upon, so I'm only relaying my experince to-date. BTW, I refused to see the Dermatologist I'd been seeing for the last 20+ years, so I asked my Oncologist for a recommendation. Wow, what a difference between the two (past and present dermatologist)! I was checked head to toe, I mean really checked throughout my head, complete body scan down to, and between, my toes. Keep the Faith, stay strong and healthy!

                  yes

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