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Leukine Question
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Leukine Question

› Forums › General Melanoma Community › Leukine Question

  • Post
    • May 13, 2013 at 5:01 pm
    buckytom
    Participant

      Working through my doc at Mayo I started the 14 day on/14 day off Leukine treatment on April 23 – last of the first round treatments was on May 6. Did not have any side effects the first week – started to feel it second week – but the worst was the week AFTER i was done with treatments, still feeling very fatiged/achy/headache yet today – 6 days after my last treatment. Does anyone have any experience where their side effects came after their last treatment? Just trying to gauge when I can expect to feel a little better – and what the next round of treatment might be like.

      Working through my doc at Mayo I started the 14 day on/14 day off Leukine treatment on April 23 – last of the first round treatments was on May 6. Did not have any side effects the first week – started to feel it second week – but the worst was the week AFTER i was done with treatments, still feeling very fatiged/achy/headache yet today – 6 days after my last treatment. Does anyone have any experience where their side effects came after their last treatment? Just trying to gauge when I can expect to feel a little better – and what the next round of treatment might be like.

      Any help would be appreciated!

      Tom

    Viewing 5 reply threads
    • Replies
        • May 13, 2013 at 7:29 pm
        Harry in Fair Oaks
        Participant

          I did almost 3 years of this regimen.  There were side effects (large welts at sites of injection, also some fatigue) after first 2 or 3 cycles.  Then the side effects mostly went away.  I hope this will happen to you too.

          Best regards,

          Harry

          • May 13, 2013 at 7:29 pm
          Harry in Fair Oaks
          Participant

            I did almost 3 years of this regimen.  There were side effects (large welts at sites of injection, also some fatigue) after first 2 or 3 cycles.  Then the side effects mostly went away.  I hope this will happen to you too.

            Best regards,

            Harry

            • May 13, 2013 at 7:29 pm
            Harry in Fair Oaks
            Participant

              I did almost 3 years of this regimen.  There were side effects (large welts at sites of injection, also some fatigue) after first 2 or 3 cycles.  Then the side effects mostly went away.  I hope this will happen to you too.

              Best regards,

              Harry

              • May 13, 2013 at 10:43 pm
              triciad
              Participant

                Hi Tom,

                I'm sorry to hear about your side effects.  I have been on Leukine (14 days on/14 days off) since October.  I haven't had any major side effects, but I think my hair is thinning out now.  Initially, my doctor said side effects were likely around day nine of injections.  She has me take 2 Benadryl and 2 Tylenol one hour prior to injection.  So far, it's working like a charm.  I would definitely contact your doctor about the side effects and let him/her know just to be safe…it could just be a virus that's going around and have nothing to do with the drug.  As with any medication, side effects vary greatly from person to person.  I hope you feel better soon. 

                All the best,

                Tricia

                  • May 13, 2013 at 11:30 pm
                  maryb-z
                  Participant

                    Hi Tom,

                    I currently see Dr. Mark Albertini at UW Health in Madison. He had me do the Leukine injections from 2009-2010 after Interferon failed me. I went 2 years NED but had recurences in 2012 and recently February of this year. Compared to Interferon I handled Leukine very well. As some one else posted I did get large welts at the injection site and fatigue. I am a school teacher of young kids and could onky handle part time that year of Leukine. Interestingly, at my last appointment in April I asked Dr. Albertini if there was anything I could do (clinical trial, supplements, etc) since I hate this watching and waiting and then ultimately surgery he said there isn't anything he would prescribe as I am NED. I don't qualifiy for the Yervoy trial as I already did Interferon. So I proceeded to say what about more Leukine since it gave me 2 years of continuous NED status and he shocked me with,"New evidence is suggesting Leukine has no overall effect on a person's survival rate."  I don't want to discourage you but you may want to ask your doctor. Of course I was told the same thing about Interferon but I elected to do that anyway as I couln't stand "doing nothing". I don't regret the Leukiine as I said, Interferon was so much worse. No matter what your decision, don't stop believing. If you are on Facebook there is a closed group called, Bad Ass Melanoma Warriors and people are really quick to respond and give support. You have to "friend" a member in order to join. Feel free to look me up on FB (Mary Benesh-Zoeller). 

                    Take care fellow melanoma warrior!

                     

                    Mary

                    • May 13, 2013 at 11:30 pm
                    maryb-z
                    Participant

                      Hi Tom,

                      I currently see Dr. Mark Albertini at UW Health in Madison. He had me do the Leukine injections from 2009-2010 after Interferon failed me. I went 2 years NED but had recurences in 2012 and recently February of this year. Compared to Interferon I handled Leukine very well. As some one else posted I did get large welts at the injection site and fatigue. I am a school teacher of young kids and could onky handle part time that year of Leukine. Interestingly, at my last appointment in April I asked Dr. Albertini if there was anything I could do (clinical trial, supplements, etc) since I hate this watching and waiting and then ultimately surgery he said there isn't anything he would prescribe as I am NED. I don't qualifiy for the Yervoy trial as I already did Interferon. So I proceeded to say what about more Leukine since it gave me 2 years of continuous NED status and he shocked me with,"New evidence is suggesting Leukine has no overall effect on a person's survival rate."  I don't want to discourage you but you may want to ask your doctor. Of course I was told the same thing about Interferon but I elected to do that anyway as I couln't stand "doing nothing". I don't regret the Leukiine as I said, Interferon was so much worse. No matter what your decision, don't stop believing. If you are on Facebook there is a closed group called, Bad Ass Melanoma Warriors and people are really quick to respond and give support. You have to "friend" a member in order to join. Feel free to look me up on FB (Mary Benesh-Zoeller). 

                      Take care fellow melanoma warrior!

                       

                      Mary

                      • May 13, 2013 at 11:30 pm
                      maryb-z
                      Participant

                        Hi Tom,

                        I currently see Dr. Mark Albertini at UW Health in Madison. He had me do the Leukine injections from 2009-2010 after Interferon failed me. I went 2 years NED but had recurences in 2012 and recently February of this year. Compared to Interferon I handled Leukine very well. As some one else posted I did get large welts at the injection site and fatigue. I am a school teacher of young kids and could onky handle part time that year of Leukine. Interestingly, at my last appointment in April I asked Dr. Albertini if there was anything I could do (clinical trial, supplements, etc) since I hate this watching and waiting and then ultimately surgery he said there isn't anything he would prescribe as I am NED. I don't qualifiy for the Yervoy trial as I already did Interferon. So I proceeded to say what about more Leukine since it gave me 2 years of continuous NED status and he shocked me with,"New evidence is suggesting Leukine has no overall effect on a person's survival rate."  I don't want to discourage you but you may want to ask your doctor. Of course I was told the same thing about Interferon but I elected to do that anyway as I couln't stand "doing nothing". I don't regret the Leukiine as I said, Interferon was so much worse. No matter what your decision, don't stop believing. If you are on Facebook there is a closed group called, Bad Ass Melanoma Warriors and people are really quick to respond and give support. You have to "friend" a member in order to join. Feel free to look me up on FB (Mary Benesh-Zoeller). 

                        Take care fellow melanoma warrior!

                         

                        Mary

                        • May 13, 2013 at 11:30 pm
                        maryb-z
                        Participant

                          Hi Tom,

                          I currently see Dr. Mark Albertini at UW Health in Madison. He had me do the Leukine injections from 2009-2010 after Interferon failed me. I went 2 years NED but had recurences in 2012 and recently February of this year. Compared to Interferon I handled Leukine very well. As some one else posted I did get large welts at the injection site and fatigue. I am a school teacher of young kids and could onky handle part time that year of Leukine. Interestingly, at my last appointment in April I asked Dr. Albertini if there was anything I could do (clinical trial, supplements, etc) since I hate this watching and waiting and then ultimately surgery he said there isn't anything he would prescribe as I am NED. I don't qualifiy for the Yervoy trial as I already did Interferon. So I proceeded to say what about more Leukine since it gave me 2 years of continuous NED status and he shocked me with,"New evidence is suggesting Leukine has no overall effect on a person's survival rate."  I don't want to discourage you but you may want to ask your doctor. Of course I was told the same thing about Interferon but I elected to do that anyway as I couln't stand "doing nothing". I don't regret the Leukiine as I said, Interferon was so much worse. No matter what your decision, don't stop believing. If you are on Facebook there is a closed group called, Bad Ass Melanoma Warriors and people are really quick to respond and give support. You have to "friend" a member in order to join. Feel free to look me up on FB (Mary Benesh-Zoeller). 

                          Take care fellow melanoma warrior!

                           

                          Mary

                          • May 14, 2013 at 4:23 pm
                          buckytom
                          Participant

                            Thank you for all of the information Mary! It is very helpful to hear your experiences. I did find you on Facebook…just let me know how to find the group….sounds like it would be helpful. 

                            Thanks!

                            • May 14, 2013 at 4:23 pm
                            buckytom
                            Participant

                              Thank you for all of the information Mary! It is very helpful to hear your experiences. I did find you on Facebook…just let me know how to find the group….sounds like it would be helpful. 

                              Thanks!

                              • May 14, 2013 at 4:23 pm
                              buckytom
                              Participant

                                Thank you for all of the information Mary! It is very helpful to hear your experiences. I did find you on Facebook…just let me know how to find the group….sounds like it would be helpful. 

                                Thanks!

                                • May 13, 2013 at 11:30 pm
                                maryb-z
                                Participant

                                  Hi Tom,

                                  I currently see Dr. Mark Albertini at UW Health in Madison. He had me do the Leukine injections from 2009-2010 after Interferon failed me. I went 2 years NED but had recurences in 2012 and recently February of this year. Compared to Interferon I handled Leukine very well. As some one else posted I did get large welts at the injection site and fatigue. I am a school teacher of young kids and could onky handle part time that year of Leukine. Interestingly, at my last appointment in April I asked Dr. Albertini if there was anything I could do (clinical trial, supplements, etc) since I hate this watching and waiting and then ultimately surgery he said there isn't anything he would prescribe as I am NED. I don't qualifiy for the Yervoy trial as I already did Interferon. So I proceeded to say what about more Leukine since it gave me 2 years of continuous NED status and he shocked me with,"New evidence is suggesting Leukine has no overall effect on a person's survival rate."  I don't want to discourage you but you may want to ask your doctor. Of course I was told the same thing about Interferon but I elected to do that anyway as I couln't stand "doing nothing". I don't regret the Leukiine as I said, Interferon was so much worse. No matter what your decision, don't stop believing. If you are on Facebook there is a closed group called, Bad Ass Melanoma Warriors and people are really quick to respond and give support. You have to "friend" a member in order to join. Feel free to look me up on FB (Mary Benesh-Zoeller). 

                                  Take care fellow melanoma warrior!

                                   

                                  Mary

                                  • May 13, 2013 at 11:30 pm
                                  maryb-z
                                  Participant

                                    Hi Tom,

                                    I currently see Dr. Mark Albertini at UW Health in Madison. He had me do the Leukine injections from 2009-2010 after Interferon failed me. I went 2 years NED but had recurences in 2012 and recently February of this year. Compared to Interferon I handled Leukine very well. As some one else posted I did get large welts at the injection site and fatigue. I am a school teacher of young kids and could onky handle part time that year of Leukine. Interestingly, at my last appointment in April I asked Dr. Albertini if there was anything I could do (clinical trial, supplements, etc) since I hate this watching and waiting and then ultimately surgery he said there isn't anything he would prescribe as I am NED. I don't qualifiy for the Yervoy trial as I already did Interferon. So I proceeded to say what about more Leukine since it gave me 2 years of continuous NED status and he shocked me with,"New evidence is suggesting Leukine has no overall effect on a person's survival rate."  I don't want to discourage you but you may want to ask your doctor. Of course I was told the same thing about Interferon but I elected to do that anyway as I couln't stand "doing nothing". I don't regret the Leukiine as I said, Interferon was so much worse. No matter what your decision, don't stop believing. If you are on Facebook there is a closed group called, Bad Ass Melanoma Warriors and people are really quick to respond and give support. You have to "friend" a member in order to join. Feel free to look me up on FB (Mary Benesh-Zoeller). 

                                    Take care fellow melanoma warrior!

                                     

                                    Mary

                                  • May 13, 2013 at 10:43 pm
                                  triciad
                                  Participant

                                    Hi Tom,

                                    I'm sorry to hear about your side effects.  I have been on Leukine (14 days on/14 days off) since October.  I haven't had any major side effects, but I think my hair is thinning out now.  Initially, my doctor said side effects were likely around day nine of injections.  She has me take 2 Benadryl and 2 Tylenol one hour prior to injection.  So far, it's working like a charm.  I would definitely contact your doctor about the side effects and let him/her know just to be safe…it could just be a virus that's going around and have nothing to do with the drug.  As with any medication, side effects vary greatly from person to person.  I hope you feel better soon. 

                                    All the best,

                                    Tricia

                                    • May 13, 2013 at 10:43 pm
                                    triciad
                                    Participant

                                      Hi Tom,

                                      I'm sorry to hear about your side effects.  I have been on Leukine (14 days on/14 days off) since October.  I haven't had any major side effects, but I think my hair is thinning out now.  Initially, my doctor said side effects were likely around day nine of injections.  She has me take 2 Benadryl and 2 Tylenol one hour prior to injection.  So far, it's working like a charm.  I would definitely contact your doctor about the side effects and let him/her know just to be safe…it could just be a virus that's going around and have nothing to do with the drug.  As with any medication, side effects vary greatly from person to person.  I hope you feel better soon. 

                                      All the best,

                                      Tricia

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