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IL2

  • Post
    lisab60
    Participant
      I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have “No Evidnce of Disease”. My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for “PREVENTITIVE” measures? I would like to know what to expect. I know everyone is different but just curious. Thanks…..Lisa

      I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have “No Evidnce of Disease”. My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for “PREVENTITIVE” measures? I would like to know what to expect. I know everyone is different but just curious. Thanks…..Lisa

    Viewing 17 reply threads
    • Replies
        Janner
        Participant

          Biochemo is not done often as an "adjuvant" therapy – I've mostly seen it done here with younger individuals.  Just do a search on here for biochemo.  I'm a bit confused by your subject heading, though, because IL-2 is one of 5 drugs used in biochemo.  IL-2 alone has its own harsh protocol but its use in biochemo is less extreme than when done alone.

          Best wishes,

          Janner

          Janner
          Participant

            Biochemo is not done often as an "adjuvant" therapy – I've mostly seen it done here with younger individuals.  Just do a search on here for biochemo.  I'm a bit confused by your subject heading, though, because IL-2 is one of 5 drugs used in biochemo.  IL-2 alone has its own harsh protocol but its use in biochemo is less extreme than when done alone.

            Best wishes,

            Janner

            Janner
            Participant

              Biochemo is not done often as an "adjuvant" therapy – I've mostly seen it done here with younger individuals.  Just do a search on here for biochemo.  I'm a bit confused by your subject heading, though, because IL-2 is one of 5 drugs used in biochemo.  IL-2 alone has its own harsh protocol but its use in biochemo is less extreme than when done alone.

              Best wishes,

              Janner

                lisab60
                Participant
                  I’m sorry, it would be done in combination with other drugs…5 all together. My Dr.s at MD Anderson seemed to agree with my choice. They said because of my activity level and overall good health they thought this suited me. I am new to all this and I am confused and a bit nervous. I was glad to see that IL2 is not as harsh when used in combination with other drugs. I see a lot of people hear say they were in the hospital 5 days with bio/chemo, they told me I would be in for 7 days. Thanks so much for the information.
                  lisab60
                  Participant
                    I’m sorry, it would be done in combination with other drugs…5 all together. My Dr.s at MD Anderson seemed to agree with my choice. They said because of my activity level and overall good health they thought this suited me. I am new to all this and I am confused and a bit nervous. I was glad to see that IL2 is not as harsh when used in combination with other drugs. I see a lot of people hear say they were in the hospital 5 days with bio/chemo, they told me I would be in for 7 days. Thanks so much for the information.
                    lisab60
                    Participant
                      I’m sorry, it would be done in combination with other drugs…5 all together. My Dr.s at MD Anderson seemed to agree with my choice. They said because of my activity level and overall good health they thought this suited me. I am new to all this and I am confused and a bit nervous. I was glad to see that IL2 is not as harsh when used in combination with other drugs. I see a lot of people hear say they were in the hospital 5 days with bio/chemo, they told me I would be in for 7 days. Thanks so much for the information.
                    kathycmc
                    Participant

                      My daughter is 24 and finished 3 cycles of biochemotherapy about a month ago.  She is stage IIIb with her primary site a mole on her right neck and one lymph node involved.  She wasn't offerred any other treatment ( other than wait and see) as her doctor didn't feel interferon or radiation would be effective.  She was treated at Kaiser in Riverside under Dr. Gailani.  

                      Biochemoherapy is a pretty gruelling treatment with numerous side effects and you will be continuously monitored for heart function, blood pressure, temperature and daily blood work.  On the first day they will place a central line in your jugular vein.  You will get most of your medications through the central line.  One chemotherapy drug is a pill and interferon is a shot in your abdomen.  IL 2 will be a continuous drip and the other 2 chemotherapy drugs will be given IV on a set schedule.  The interferon is particularly nasty and 2-8 hours after getting it there may be rigors (muscle spasms that cause shaking), fever, flushing, and nausea.  The nurses are aware of all the side effects and will give medication and treatment immediately but still it is not pleasant.  Also the drugs seemed to have an effect on my daughter mentally as well and it took everything she had to get through the 5 days each time.

                      After you go home you may be nauseous and you will be super fatigued for about 7 days.  Then you will start to feel better and after another week will probably be back to normal.  My daughter took this time to eat and try to gain back the 5-6 pounds she lost each cycle.  They may not tell you, and you may not, but my daughter also started loosing her hair just before she started the second cycle.  She is now mostly bald and wears a wig.  

                      Her treatment was preventive/adjuvant.  It was a difficult decision but she felt she needed to be as aggressive as possible earlier rather than later.  I would suggest as large a support system as you can gather.  We made sure someone was with her while in the hospital day and night and for the first few days at home.  

                      My daughter got the results of her post treatment PET scan today and she remains NED.  I hope this information is helpful but, as you say, everyone is different.  In fact each cycle is different for the same person.  I saw from your profile that you are a teacher.  My daughter is a second year teacher and was able to return to work 2 weeks ago.  I wish you all the best as you begin treatment.  You can beat this.

                        lisab60
                        Participant
                          Thank you so much for the information. I am scared of doing this treatment but I do trust my doctors. I have not heard of PD1. They advised me against BRAF. I feel I made the right choice in therapy, I’m just very nervous. I pray your daughter will continue to get good reports.
                          lisab60
                          Participant
                            Thank you so much for the information. I am scared of doing this treatment but I do trust my doctors. I have not heard of PD1. They advised me against BRAF. I feel I made the right choice in therapy, I’m just very nervous. I pray your daughter will continue to get good reports.
                            lisab60
                            Participant
                              Thank you so much for the information. I am scared of doing this treatment but I do trust my doctors. I have not heard of PD1. They advised me against BRAF. I feel I made the right choice in therapy, I’m just very nervous. I pray your daughter will continue to get good reports.
                            kathycmc
                            Participant

                              My daughter is 24 and finished 3 cycles of biochemotherapy about a month ago.  She is stage IIIb with her primary site a mole on her right neck and one lymph node involved.  She wasn't offerred any other treatment ( other than wait and see) as her doctor didn't feel interferon or radiation would be effective.  She was treated at Kaiser in Riverside under Dr. Gailani.  

                              Biochemoherapy is a pretty gruelling treatment with numerous side effects and you will be continuously monitored for heart function, blood pressure, temperature and daily blood work.  On the first day they will place a central line in your jugular vein.  You will get most of your medications through the central line.  One chemotherapy drug is a pill and interferon is a shot in your abdomen.  IL 2 will be a continuous drip and the other 2 chemotherapy drugs will be given IV on a set schedule.  The interferon is particularly nasty and 2-8 hours after getting it there may be rigors (muscle spasms that cause shaking), fever, flushing, and nausea.  The nurses are aware of all the side effects and will give medication and treatment immediately but still it is not pleasant.  Also the drugs seemed to have an effect on my daughter mentally as well and it took everything she had to get through the 5 days each time.

                              After you go home you may be nauseous and you will be super fatigued for about 7 days.  Then you will start to feel better and after another week will probably be back to normal.  My daughter took this time to eat and try to gain back the 5-6 pounds she lost each cycle.  They may not tell you, and you may not, but my daughter also started loosing her hair just before she started the second cycle.  She is now mostly bald and wears a wig.  

                              Her treatment was preventive/adjuvant.  It was a difficult decision but she felt she needed to be as aggressive as possible earlier rather than later.  I would suggest as large a support system as you can gather.  We made sure someone was with her while in the hospital day and night and for the first few days at home.  

                              My daughter got the results of her post treatment PET scan today and she remains NED.  I hope this information is helpful but, as you say, everyone is different.  In fact each cycle is different for the same person.  I saw from your profile that you are a teacher.  My daughter is a second year teacher and was able to return to work 2 weeks ago.  I wish you all the best as you begin treatment.  You can beat this.

                              kathycmc
                              Participant

                                My daughter is 24 and finished 3 cycles of biochemotherapy about a month ago.  She is stage IIIb with her primary site a mole on her right neck and one lymph node involved.  She wasn't offerred any other treatment ( other than wait and see) as her doctor didn't feel interferon or radiation would be effective.  She was treated at Kaiser in Riverside under Dr. Gailani.  

                                Biochemoherapy is a pretty gruelling treatment with numerous side effects and you will be continuously monitored for heart function, blood pressure, temperature and daily blood work.  On the first day they will place a central line in your jugular vein.  You will get most of your medications through the central line.  One chemotherapy drug is a pill and interferon is a shot in your abdomen.  IL 2 will be a continuous drip and the other 2 chemotherapy drugs will be given IV on a set schedule.  The interferon is particularly nasty and 2-8 hours after getting it there may be rigors (muscle spasms that cause shaking), fever, flushing, and nausea.  The nurses are aware of all the side effects and will give medication and treatment immediately but still it is not pleasant.  Also the drugs seemed to have an effect on my daughter mentally as well and it took everything she had to get through the 5 days each time.

                                After you go home you may be nauseous and you will be super fatigued for about 7 days.  Then you will start to feel better and after another week will probably be back to normal.  My daughter took this time to eat and try to gain back the 5-6 pounds she lost each cycle.  They may not tell you, and you may not, but my daughter also started loosing her hair just before she started the second cycle.  She is now mostly bald and wears a wig.  

                                Her treatment was preventive/adjuvant.  It was a difficult decision but she felt she needed to be as aggressive as possible earlier rather than later.  I would suggest as large a support system as you can gather.  We made sure someone was with her while in the hospital day and night and for the first few days at home.  

                                My daughter got the results of her post treatment PET scan today and she remains NED.  I hope this information is helpful but, as you say, everyone is different.  In fact each cycle is different for the same person.  I saw from your profile that you are a teacher.  My daughter is a second year teacher and was able to return to work 2 weeks ago.  I wish you all the best as you begin treatment.  You can beat this.

                                Cooper
                                Participant

                                  Biochemo is a really old treatment that a lot of places stopped using,  good places like Moffitt and Sloan Kettering stopped offering it..  It is grueling and I regret we chose it because we recurred shortly after.. There are so many new things now, we are lucky. Do your homework and check out IPI, PD1 and the BRAF drug Zelborah. 

                                    NYKaren
                                    Participant
                                      FYI, my onc at Sloan felt that IL2 might be helpful to me, and since they don’t have the space for a dedicated unit to deal with IL2’s many and nuanced side-effects, he sent me to his close colleague, Dr Mario Sznol at Yale New-Haven’s Smilow Cancer Center. It’s a brand-new, top notch facility, and although i was not a complete responder to IL2, the treatment did get rid of several inoperable mets and buy me some time. If PD1 trials had been available at that time, that certainly would ( and still is!) my first choice. Also, at that time I was believed to be
                                      BRAF -, upon retesting this past December, I’ve been successfully on Zelbarof for5 months.
                                      Hope this helps,
                                      Karen
                                      NYKaren
                                      Participant
                                        FYI, my onc at Sloan felt that IL2 might be helpful to me, and since they don’t have the space for a dedicated unit to deal with IL2’s many and nuanced side-effects, he sent me to his close colleague, Dr Mario Sznol at Yale New-Haven’s Smilow Cancer Center. It’s a brand-new, top notch facility, and although i was not a complete responder to IL2, the treatment did get rid of several inoperable mets and buy me some time. If PD1 trials had been available at that time, that certainly would ( and still is!) my first choice. Also, at that time I was believed to be
                                        BRAF -, upon retesting this past December, I’ve been successfully on Zelbarof for5 months.
                                        Hope this helps,
                                        Karen
                                        NYKaren
                                        Participant
                                          FYI, my onc at Sloan felt that IL2 might be helpful to me, and since they don’t have the space for a dedicated unit to deal with IL2’s many and nuanced side-effects, he sent me to his close colleague, Dr Mario Sznol at Yale New-Haven’s Smilow Cancer Center. It’s a brand-new, top notch facility, and although i was not a complete responder to IL2, the treatment did get rid of several inoperable mets and buy me some time. If PD1 trials had been available at that time, that certainly would ( and still is!) my first choice. Also, at that time I was believed to be
                                          BRAF -, upon retesting this past December, I’ve been successfully on Zelbarof for5 months.
                                          Hope this helps,
                                          Karen
                                        Cooper
                                        Participant

                                          Biochemo is a really old treatment that a lot of places stopped using,  good places like Moffitt and Sloan Kettering stopped offering it..  It is grueling and I regret we chose it because we recurred shortly after.. There are so many new things now, we are lucky. Do your homework and check out IPI, PD1 and the BRAF drug Zelborah. 

                                          Cooper
                                          Participant

                                            Biochemo is a really old treatment that a lot of places stopped using,  good places like Moffitt and Sloan Kettering stopped offering it..  It is grueling and I regret we chose it because we recurred shortly after.. There are so many new things now, we are lucky. Do your homework and check out IPI, PD1 and the BRAF drug Zelborah. 

                                            thrashter
                                            Participant

                                              I am stage iv and have completed (3) rounds of biochemo at Kaiser Riverside. Like the other reply I too am under Gailani and was told interferon or radiation do not have much success. I have just gotten the word i am N.E.D i have to decide on a 4th treatment next week. It is tough i was sick the wwhole time in the hospital. I was the only person i think to have gained weight while in hte hospital. No hair loss. I was able to go back to work the secong day after going home. I worked for about 6hours a day. The second week after started feeling normal and got taste buds back. Then back in to hospital. Very tough but doable. Good luck with your decision

                                                lisab60
                                                Participant
                                                  How many days were you in the hospital? They told me 7 days. Did someone stay with you day and night? I wonder if this lowers your immune system, I work with young children who ALWAYS have something! Did you gain weight due to fluid build up or did you eat a lot ? If I loose hair it’s ok, it will grow back- but I’d rather not loose it.
                                                  lisab60
                                                  Participant
                                                    How many days were you in the hospital? They told me 7 days. Did someone stay with you day and night? I wonder if this lowers your immune system, I work with young children who ALWAYS have something! Did you gain weight due to fluid build up or did you eat a lot ? If I loose hair it’s ok, it will grow back- but I’d rather not loose it.
                                                    lisab60
                                                    Participant
                                                      How many days were you in the hospital? They told me 7 days. Did someone stay with you day and night? I wonder if this lowers your immune system, I work with young children who ALWAYS have something! Did you gain weight due to fluid build up or did you eat a lot ? If I loose hair it’s ok, it will grow back- but I’d rather not loose it.
                                                      lisab60
                                                      Participant
                                                        How many days were you in the hospital? They told me 7 days. Did someone stay with you day and night? I wonder if this lowers your immune system, I work with young children who ALWAYS have something! Did you gain weight due to fluid build up or did you eat a lot ? If I loose hair it’s ok, it will grow back- but I’d rather not loose it.
                                                        Phil S
                                                        Participant
                                                          Lisa, my husband did six rounds of biochemo at MDAnderson last year, you are usually discharged on day 7 if all your blood work looks okay! The way MDAnderson does it, you are admitted late day one and they don’t start the drugs until late evening, then it’s five days of the three chemos and interferon and continuous low dose IV IL2, then your body needs at least one more hospital day to recover. Yes, usually the patient has someone stay with them day and night, I slept in the chair/bed in his room the six or seven nights, I never left my husband!! You can’t leave the floor when on IL2, so we were always excited for the last recovery day because we could get in the elevator and finally walk around elsewhere. You gain weight because of IL2 and fluid, it comes off once you stop. You will eat very little after the first day, mostly you will want medications to make you sleep and not feel sick, Ativan works! Yes, your immune system is compromised, the chemos are strong, Cisplatin is a tough drug!! Your blood counts will be lower once treatment starts! I understand your nervousness, we have been there, but if you decide to do the treatment just don’t look back! No guarantees with melanoma treatments, no matter what any of us decide, just go with your gut! Good luck and let us know how you do! Valerie (Phil’s wife)
                                                          Phil S
                                                          Participant
                                                            Lisa, my husband did six rounds of biochemo at MDAnderson last year, you are usually discharged on day 7 if all your blood work looks okay! The way MDAnderson does it, you are admitted late day one and they don’t start the drugs until late evening, then it’s five days of the three chemos and interferon and continuous low dose IV IL2, then your body needs at least one more hospital day to recover. Yes, usually the patient has someone stay with them day and night, I slept in the chair/bed in his room the six or seven nights, I never left my husband!! You can’t leave the floor when on IL2, so we were always excited for the last recovery day because we could get in the elevator and finally walk around elsewhere. You gain weight because of IL2 and fluid, it comes off once you stop. You will eat very little after the first day, mostly you will want medications to make you sleep and not feel sick, Ativan works! Yes, your immune system is compromised, the chemos are strong, Cisplatin is a tough drug!! Your blood counts will be lower once treatment starts! I understand your nervousness, we have been there, but if you decide to do the treatment just don’t look back! No guarantees with melanoma treatments, no matter what any of us decide, just go with your gut! Good luck and let us know how you do! Valerie (Phil’s wife)
                                                            Cooper
                                                            Participant

                                                              I don't understand why you are not considering the new therapies that are proven to work, PD1, Yervoy, Zelboraf??  They really do work and don't hurt the immune system.  We are so lucky to have these new treatments.  Where are you going that they told you to stay away from Zelboraf?  It does a great job for getting rid of tumors!

                                                              Cooper
                                                              Participant

                                                                I don't understand why you are not considering the new therapies that are proven to work, PD1, Yervoy, Zelboraf??  They really do work and don't hurt the immune system.  We are so lucky to have these new treatments.  Where are you going that they told you to stay away from Zelboraf?  It does a great job for getting rid of tumors!

                                                                Janner
                                                                Participant

                                                                  She doesn't have any tumors right now, she is NED.  Zelboraf is not approved for "adjuvant" therapy or therapy when no tumors exist.  Zelboraf is a better choice when you have a lot of disease assuming you are BRAF positive in the first place.  Besides Interferon, there are no approved adjuvant therapies for stage III or stage IV NED (no evidence of disease).  So you basically have to be in a clinical trial to get those drugs when you are in her position.

                                                                  Janner
                                                                  Participant

                                                                    She doesn't have any tumors right now, she is NED.  Zelboraf is not approved for "adjuvant" therapy or therapy when no tumors exist.  Zelboraf is a better choice when you have a lot of disease assuming you are BRAF positive in the first place.  Besides Interferon, there are no approved adjuvant therapies for stage III or stage IV NED (no evidence of disease).  So you basically have to be in a clinical trial to get those drugs when you are in her position.

                                                                    lisab60
                                                                    Participant
                                                                      THANKS
                                                                      lisab60
                                                                      Participant
                                                                        THANKS
                                                                        lisab60
                                                                        Participant
                                                                          THANKS
                                                                          Janner
                                                                          Participant

                                                                            She doesn't have any tumors right now, she is NED.  Zelboraf is not approved for "adjuvant" therapy or therapy when no tumors exist.  Zelboraf is a better choice when you have a lot of disease assuming you are BRAF positive in the first place.  Besides Interferon, there are no approved adjuvant therapies for stage III or stage IV NED (no evidence of disease).  So you basically have to be in a clinical trial to get those drugs when you are in her position.

                                                                            lisab60
                                                                            Participant
                                                                              I go to MD Anderson. I have NO tumors right now. The said BRAFdid not have enough trails on patients who are NED. My doc said she would rather save that for a later date if needed. She also said if I choose that, I would be in a trail where half the patients get the drug and the other half get a placebo. I don’t know much about any of this, just trying my best to educate myself.
                                                                              lisab60
                                                                              Participant
                                                                                I go to MD Anderson. I have NO tumors right now. The said BRAFdid not have enough trails on patients who are NED. My doc said she would rather save that for a later date if needed. She also said if I choose that, I would be in a trail where half the patients get the drug and the other half get a placebo. I don’t know much about any of this, just trying my best to educate myself.
                                                                                lisab60
                                                                                Participant
                                                                                  I go to MD Anderson. I have NO tumors right now. The said BRAFdid not have enough trails on patients who are NED. My doc said she would rather save that for a later date if needed. She also said if I choose that, I would be in a trail where half the patients get the drug and the other half get a placebo. I don’t know much about any of this, just trying my best to educate myself.
                                                                                  Cooper
                                                                                  Participant

                                                                                    I don't understand why you are not considering the new therapies that are proven to work, PD1, Yervoy, Zelboraf??  They really do work and don't hurt the immune system.  We are so lucky to have these new treatments.  Where are you going that they told you to stay away from Zelboraf?  It does a great job for getting rid of tumors!

                                                                                    lisab60
                                                                                    Participant
                                                                                      Thank you so much, I hope your husband is doing well. I m very nervous, but so thankful fo your experience. At least now I know what to expect.
                                                                                      lisab60
                                                                                      Participant
                                                                                        Thank you so much, I hope your husband is doing well. I m very nervous, but so thankful fo your experience. At least now I know what to expect.
                                                                                        lisab60
                                                                                        Participant
                                                                                          Thank you so much, I hope your husband is doing well. I m very nervous, but so thankful fo your experience. At least now I know what to expect.
                                                                                          Phil S
                                                                                          Participant
                                                                                            Lisa, my husband did six rounds of biochemo at MDAnderson last year, you are usually discharged on day 7 if all your blood work looks okay! The way MDAnderson does it, you are admitted late day one and they don’t start the drugs until late evening, then it’s five days of the three chemos and interferon and continuous low dose IV IL2, then your body needs at least one more hospital day to recover. Yes, usually the patient has someone stay with them day and night, I slept in the chair/bed in his room the six or seven nights, I never left my husband!! You can’t leave the floor when on IL2, so we were always excited for the last recovery day because we could get in the elevator and finally walk around elsewhere. You gain weight because of IL2 and fluid, it comes off once you stop. You will eat very little after the first day, mostly you will want medications to make you sleep and not feel sick, Ativan works! Yes, your immune system is compromised, the chemos are strong, Cisplatin is a tough drug!! Your blood counts will be lower once treatment starts! I understand your nervousness, we have been there, but if you decide to do the treatment just don’t look back! No guarantees with melanoma treatments, no matter what any of us decide, just go with your gut! Good luck and let us know how you do! Valerie (Phil’s wife)
                                                                                            lisab60
                                                                                            Participant
                                                                                              How many days were you in the hospital? They told me 7 days. Did someone stay with you day and night? I wonder if this lowers your immune system, I work with young children who ALWAYS have something! Did you gain weight due to fluid build up or did you eat a lot ? If I loose hair it’s ok, it will grow back- but I’d rather not loose it.
                                                                                              lisab60
                                                                                              Participant
                                                                                                How many days were you in the hospital? They told me 7 days. Did someone stay with you day and night? I wonder if this lowers your immune system, I work with young children who ALWAYS have something! Did you gain weight due to fluid build up or did you eat a lot ? If I loose hair it’s ok, it will grow back- but I’d rather not loose it.
                                                                                              thrashter
                                                                                              Participant

                                                                                                I am stage iv and have completed (3) rounds of biochemo at Kaiser Riverside. Like the other reply I too am under Gailani and was told interferon or radiation do not have much success. I have just gotten the word i am N.E.D i have to decide on a 4th treatment next week. It is tough i was sick the wwhole time in the hospital. I was the only person i think to have gained weight while in hte hospital. No hair loss. I was able to go back to work the secong day after going home. I worked for about 6hours a day. The second week after started feeling normal and got taste buds back. Then back in to hospital. Very tough but doable. Good luck with your decision

                                                                                                thrashter
                                                                                                Participant

                                                                                                  I am stage iv and have completed (3) rounds of biochemo at Kaiser Riverside. Like the other reply I too am under Gailani and was told interferon or radiation do not have much success. I have just gotten the word i am N.E.D i have to decide on a 4th treatment next week. It is tough i was sick the wwhole time in the hospital. I was the only person i think to have gained weight while in hte hospital. No hair loss. I was able to go back to work the secong day after going home. I worked for about 6hours a day. The second week after started feeling normal and got taste buds back. Then back in to hospital. Very tough but doable. Good luck with your decision

                                                                                                  JerryfromFauq
                                                                                                  Participant

                                                                                                    i agree with your decision from the given chooses.  I went thru six weeks of IL-2 and would likely not be here except for it. 

                                                                                                    I have long pushed for the idea that some adjuvant treatment (possibly at a lower level than for one with active tumors) for NED people.  Glad to see trials going on in this area.  Do you know if they are using the full strengh treatments or a reduced level?

                                                                                                    I do recommend having someone stay with the one undergoing Biochem and/or IL-2.  The other thing to know is that BioChem is not JUST BioChem.  Biochem can be made up of various dosages of divverent treatments, not all BioChem is the same.  (All tend to be rough, but doable.)

                                                                                                    JerryfromFauq
                                                                                                    Participant

                                                                                                      i agree with your decision from the given chooses.  I went thru six weeks of IL-2 and would likely not be here except for it. 

                                                                                                      I have long pushed for the idea that some adjuvant treatment (possibly at a lower level than for one with active tumors) for NED people.  Glad to see trials going on in this area.  Do you know if they are using the full strengh treatments or a reduced level?

                                                                                                      I do recommend having someone stay with the one undergoing Biochem and/or IL-2.  The other thing to know is that BioChem is not JUST BioChem.  Biochem can be made up of various dosages of divverent treatments, not all BioChem is the same.  (All tend to be rough, but doable.)

                                                                                                        lisab60
                                                                                                        Participant
                                                                                                          Thanks so much for your input. It makes me feel like I am going in the right direction. I do not know if it low dosage or full strength. My husband is going and staying , but I did not expect him to stay with me. He reserved a room in the hotel connected to the hospital. Should we rethink this? I know he will stay with me, but I just think of how uncomfortable he will be in that little “chair bed”. Do you think I will be able to fly home the day I am released? It’s an hour flight.
                                                                                                          lisab60
                                                                                                          Participant
                                                                                                            Thanks so much for your input. It makes me feel like I am going in the right direction. I do not know if it low dosage or full strength. My husband is going and staying , but I did not expect him to stay with me. He reserved a room in the hotel connected to the hospital. Should we rethink this? I know he will stay with me, but I just think of how uncomfortable he will be in that little “chair bed”. Do you think I will be able to fly home the day I am released? It’s an hour flight.
                                                                                                            Phil S
                                                                                                            Participant
                                                                                                              Yes, when my husband was released, we went right from hospital to airport for our flight home. You may want to wear a mask, germs on planes are plentiful. They will give you whatever you need for flight home, and also medications for home to keep the side effects manageable. Your decision on the hotel for your husband, I never used one when my husband was inpatient, I didn’t mind being a little uncomfort, since he was the one taking all that chemo! Actually, I was so tired and emotionally spent, I slept pretty well, when he was sleeping anyway. It’s good to have someone there at night, if you need the bathroom,its nice to have help, as you are always attached to your medication pole. The chemos are usually cisplatin, decarbazine, vinblastine, and then interferon and a low dose IL2 drip. My husband had temodar instead of decarbazine because he had brain mets. My husband is doing well, after six rounds of biochemo and the TIL trial. The first round is the hardest because you don’t know what to expect, it’s very tough but doable! all the best, Valerie (Phil’s wife)
                                                                                                              Phil S
                                                                                                              Participant
                                                                                                                Yes, when my husband was released, we went right from hospital to airport for our flight home. You may want to wear a mask, germs on planes are plentiful. They will give you whatever you need for flight home, and also medications for home to keep the side effects manageable. Your decision on the hotel for your husband, I never used one when my husband was inpatient, I didn’t mind being a little uncomfort, since he was the one taking all that chemo! Actually, I was so tired and emotionally spent, I slept pretty well, when he was sleeping anyway. It’s good to have someone there at night, if you need the bathroom,its nice to have help, as you are always attached to your medication pole. The chemos are usually cisplatin, decarbazine, vinblastine, and then interferon and a low dose IL2 drip. My husband had temodar instead of decarbazine because he had brain mets. My husband is doing well, after six rounds of biochemo and the TIL trial. The first round is the hardest because you don’t know what to expect, it’s very tough but doable! all the best, Valerie (Phil’s wife)
                                                                                                                lisab60
                                                                                                                Participant
                                                                                                                  Thank you Valerie and Jerry , every bit of input helps. I have a little over a week before I start treatment. I will let you know how it goes. I wish anonymous woul post their name and a little background. Let me know if ou think of anything else I should be aware of. Lisa
                                                                                                                  lisab60
                                                                                                                  Participant
                                                                                                                    Thank you Valerie and Jerry , every bit of input helps. I have a little over a week before I start treatment. I will let you know how it goes. I wish anonymous woul post their name and a little background. Let me know if ou think of anything else I should be aware of. Lisa
                                                                                                                    lisab60
                                                                                                                    Participant
                                                                                                                      Thank you Valerie and Jerry , every bit of input helps. I have a little over a week before I start treatment. I will let you know how it goes. I wish anonymous woul post their name and a little background. Let me know if ou think of anything else I should be aware of. Lisa
                                                                                                                      Phil S
                                                                                                                      Participant
                                                                                                                        Yes, when my husband was released, we went right from hospital to airport for our flight home. You may want to wear a mask, germs on planes are plentiful. They will give you whatever you need for flight home, and also medications for home to keep the side effects manageable. Your decision on the hotel for your husband, I never used one when my husband was inpatient, I didn’t mind being a little uncomfort, since he was the one taking all that chemo! Actually, I was so tired and emotionally spent, I slept pretty well, when he was sleeping anyway. It’s good to have someone there at night, if you need the bathroom,its nice to have help, as you are always attached to your medication pole. The chemos are usually cisplatin, decarbazine, vinblastine, and then interferon and a low dose IL2 drip. My husband had temodar instead of decarbazine because he had brain mets. My husband is doing well, after six rounds of biochemo and the TIL trial. The first round is the hardest because you don’t know what to expect, it’s very tough but doable! all the best, Valerie (Phil’s wife)
                                                                                                                        JerryfromFauq
                                                                                                                        Participant
                                                                                                                          In general I have found it better is someone stays in the room with the patient most of the time. My wife did go shopping a couple of times during my week. UVA has a decent setup for someone to sleep in the private rooms. As long as the nausea and and any diarrhea are under control, I don’t see a problem with flying home the same day. (I had 1 1/2 car ride to get home.)
                                                                                                                          JerryfromFauq
                                                                                                                          Participant
                                                                                                                            In general I have found it better is someone stays in the room with the patient most of the time. My wife did go shopping a couple of times during my week. UVA has a decent setup for someone to sleep in the private rooms. As long as the nausea and and any diarrhea are under control, I don’t see a problem with flying home the same day. (I had 1 1/2 car ride to get home.)
                                                                                                                            Cooper
                                                                                                                            Participant

                                                                                                                              I would definitely rethink this and get another opinion.  This is very harsh treatment for stage 2-3 disease.  It is likely to cause immune system problems later on.  Watch and wait or find a clinical trial.  Biochemo just isn't given much anymore and it is for stage IV disease not any other. 

                                                                                                                              Cooper
                                                                                                                              Participant

                                                                                                                                I would definitely rethink this and get another opinion.  This is very harsh treatment for stage 2-3 disease.  It is likely to cause immune system problems later on.  Watch and wait or find a clinical trial.  Biochemo just isn't given much anymore and it is for stage IV disease not any other. 

                                                                                                                                Cooper
                                                                                                                                Participant

                                                                                                                                  I have gone through the treatment.  It is very harsh. New drugs don't require being in the hospital. The best melanoma places like Sloan Kettering don't offer it, especially for stage II or III disease.  It did not prevent recurrence in my experience.  Get another opinion on this at one of the top melanoma places like Sloan.

                                                                                                                                  Cooper
                                                                                                                                  Participant

                                                                                                                                    I have gone through the treatment.  It is very harsh. New drugs don't require being in the hospital. The best melanoma places like Sloan Kettering don't offer it, especially for stage II or III disease.  It did not prevent recurrence in my experience.  Get another opinion on this at one of the top melanoma places like Sloan.

                                                                                                                                    Theresa123
                                                                                                                                    Participant

                                                                                                                                      I agree.  I went through 3 bouts of biochemo 2 years ago with Dr. Gailani at Kaiser Riverside.  I don't think it is worth it.  Of course, I had growth of tumors so I wouldn't.  It is very, very toxic.  Watch out for the kidney and bladder problems, permanent damage to these organs.  I wouldn't do it again.

                                                                                                                                      Theresa123
                                                                                                                                      Participant

                                                                                                                                        I agree.  I went through 3 bouts of biochemo 2 years ago with Dr. Gailani at Kaiser Riverside.  I don't think it is worth it.  Of course, I had growth of tumors so I wouldn't.  It is very, very toxic.  Watch out for the kidney and bladder problems, permanent damage to these organs.  I wouldn't do it again.

                                                                                                                                        lisab60
                                                                                                                                        Participant
                                                                                                                                          Ok, I am getting very confused. I thought MD Anderson was a very good cancer treatment center, one of the top places in the country. Nothing was said to me about vaccines or any other drug other than interfuron, biochem, or braff. I was told that Braff was in a trial for stage 111…NED. I might get the drug or I may get a placebo. No mention of PB1 or anything else. I was just diagnosed in Feb. 2013. So I don’t know much about any of this. I thought I was doing the right thing to try to prevent any cancer coming back.
                                                                                                                                          lisab60
                                                                                                                                          Participant
                                                                                                                                            Ok, I am getting very confused. I thought MD Anderson was a very good cancer treatment center, one of the top places in the country. Nothing was said to me about vaccines or any other drug other than interfuron, biochem, or braff. I was told that Braff was in a trial for stage 111…NED. I might get the drug or I may get a placebo. No mention of PB1 or anything else. I was just diagnosed in Feb. 2013. So I don’t know much about any of this. I thought I was doing the right thing to try to prevent any cancer coming back.
                                                                                                                                            lisab60
                                                                                                                                            Participant
                                                                                                                                              Ok, I am getting very confused. I thought MD Anderson was a very good cancer treatment center, one of the top places in the country. Nothing was said to me about vaccines or any other drug other than interfuron, biochem, or braff. I was told that Braff was in a trial for stage 111…NED. I might get the drug or I may get a placebo. No mention of PB1 or anything else. I was just diagnosed in Feb. 2013. So I don’t know much about any of this. I thought I was doing the right thing to try to prevent any cancer coming back.
                                                                                                                                              JerryfromFauq
                                                                                                                                              Participant

                                                                                                                                                MD Anderson is definitely one of, if not the top Cancer Center in the USA (and the World).  Their Oncologists help many patients with Oncologists in other locations in the country.  Biggest problem is that no one knows just what will work on any individuals case.  Maybe someone could tell us if they have seen any trials for PD-1 treatment of NED Stage III or IV people.

                                                                                                                                                   It will be very interesting to see  what results come from each of the trials of the different treatments when offered to NED people.  Only way to learn is for people to undergo the different trials.  There is no data to show that any of the different options are the most likely to be successful.  I do havae a personal leaning toward trials with IL-2 involved since I owe my life to IL-2, even though I was not "cured" by it.  I would very much like to see trials of all the Stage IV treatments given at a reduced dosage to Stage III and Stage IV NED patients.  As you will see in my profile, I am not too wild about Interferon. 

                                                                                                                                                     I still have melanoma tumors and January of this year was the ten year anniversary of my first visit to the General Practicioner complianiing about what was found in 2006 to be a melanoma.  (I did not know what an Oncologist was until Dec 2006.)  I was told in March 2007 that it was likely I only had two months to live.  I  have done my own research and directed my Melanoma Specialist Oncologist on the path I felt was best for me.  What can I say?  I am still here now!

                                                                                                                                                     

                                                                                                                                                JerryfromFauq
                                                                                                                                                Participant

                                                                                                                                                  MD Anderson is definitely one of, if not the top Cancer Center in the USA (and the World).  Their Oncologists help many patients with Oncologists in other locations in the country.  Biggest problem is that no one knows just what will work on any individuals case.  Maybe someone could tell us if they have seen any trials for PD-1 treatment of NED Stage III or IV people.

                                                                                                                                                     It will be very interesting to see  what results come from each of the trials of the different treatments when offered to NED people.  Only way to learn is for people to undergo the different trials.  There is no data to show that any of the different options are the most likely to be successful.  I do havae a personal leaning toward trials with IL-2 involved since I owe my life to IL-2, even though I was not "cured" by it.  I would very much like to see trials of all the Stage IV treatments given at a reduced dosage to Stage III and Stage IV NED patients.  As you will see in my profile, I am not too wild about Interferon. 

                                                                                                                                                       I still have melanoma tumors and January of this year was the ten year anniversary of my first visit to the General Practicioner complianiing about what was found in 2006 to be a melanoma.  (I did not know what an Oncologist was until Dec 2006.)  I was told in March 2007 that it was likely I only had two months to live.  I  have done my own research and directed my Melanoma Specialist Oncologist on the path I felt was best for me.  What can I say?  I am still here now!

                                                                                                                                                       

                                                                                                                                                  JerryfromFauq
                                                                                                                                                  Participant

                                                                                                                                                    MD Anderson is definitely one of, if not the top Cancer Center in the USA (and the World).  Their Oncologists help many patients with Oncologists in other locations in the country.  Biggest problem is that no one knows just what will work on any individuals case.  Maybe someone could tell us if they have seen any trials for PD-1 treatment of NED Stage III or IV people.

                                                                                                                                                       It will be very interesting to see  what results come from each of the trials of the different treatments when offered to NED people.  Only way to learn is for people to undergo the different trials.  There is no data to show that any of the different options are the most likely to be successful.  I do havae a personal leaning toward trials with IL-2 involved since I owe my life to IL-2, even though I was not "cured" by it.  I would very much like to see trials of all the Stage IV treatments given at a reduced dosage to Stage III and Stage IV NED patients.  As you will see in my profile, I am not too wild about Interferon. 

                                                                                                                                                         I still have melanoma tumors and January of this year was the ten year anniversary of my first visit to the General Practicioner complianiing about what was found in 2006 to be a melanoma.  (I did not know what an Oncologist was until Dec 2006.)  I was told in March 2007 that it was likely I only had two months to live.  I  have done my own research and directed my Melanoma Specialist Oncologist on the path I felt was best for me.  What can I say?  I am still here now!

                                                                                                                                                         

                                                                                                                                                    Theresa123
                                                                                                                                                    Participant

                                                                                                                                                      Hi,  I was DX in June, 2009, and they gave me 3 months to live.  I set up my funeral and paid for it.  I am still here.  I don't know what did it but I was in the TIL trial in Maryland's NIH (it might have helped).    Nothing has actually worked.  I have grown tumors after Yervoy, Biochemo, interferon, and the TIL.  I have Stage IV tumors in me now.  I haven't had scans in a while.  I am doing the "wait and see" approach.  I hope it's not the  "wait and die" approach.  I am hoping something new comes out for Stage IV pts.  I am not eligible for any more clinical trials. 

                                                                                                                                                      good luck to you.  You are still here.  That is an inspiration.

                                                                                                                                                      Terri

                                                                                                                                                      Theresa123
                                                                                                                                                      Participant

                                                                                                                                                        Hi,  I was DX in June, 2009, and they gave me 3 months to live.  I set up my funeral and paid for it.  I am still here.  I don't know what did it but I was in the TIL trial in Maryland's NIH (it might have helped).    Nothing has actually worked.  I have grown tumors after Yervoy, Biochemo, interferon, and the TIL.  I have Stage IV tumors in me now.  I haven't had scans in a while.  I am doing the "wait and see" approach.  I hope it's not the  "wait and die" approach.  I am hoping something new comes out for Stage IV pts.  I am not eligible for any more clinical trials. 

                                                                                                                                                        good luck to you.  You are still here.  That is an inspiration.

                                                                                                                                                        Terri

                                                                                                                                                        Theresa123
                                                                                                                                                        Participant

                                                                                                                                                          Hi,  I was DX in June, 2009, and they gave me 3 months to live.  I set up my funeral and paid for it.  I am still here.  I don't know what did it but I was in the TIL trial in Maryland's NIH (it might have helped).    Nothing has actually worked.  I have grown tumors after Yervoy, Biochemo, interferon, and the TIL.  I have Stage IV tumors in me now.  I haven't had scans in a while.  I am doing the "wait and see" approach.  I hope it's not the  "wait and die" approach.  I am hoping something new comes out for Stage IV pts.  I am not eligible for any more clinical trials. 

                                                                                                                                                          good luck to you.  You are still here.  That is an inspiration.

                                                                                                                                                          Terri

                                                                                                                                                          Theresa123
                                                                                                                                                          Participant

                                                                                                                                                            I agree.  I went through 3 bouts of biochemo 2 years ago with Dr. Gailani at Kaiser Riverside.  I don't think it is worth it.  Of course, I had growth of tumors so I wouldn't.  It is very, very toxic.  Watch out for the kidney and bladder problems, permanent damage to these organs.  I wouldn't do it again.

                                                                                                                                                            Cooper
                                                                                                                                                            Participant

                                                                                                                                                              I have gone through the treatment.  It is very harsh. New drugs don't require being in the hospital. The best melanoma places like Sloan Kettering don't offer it, especially for stage II or III disease.  It did not prevent recurrence in my experience.  Get another opinion on this at one of the top melanoma places like Sloan.

                                                                                                                                                              Cooper
                                                                                                                                                              Participant

                                                                                                                                                                I would definitely rethink this and get another opinion.  This is very harsh treatment for stage 2-3 disease.  It is likely to cause immune system problems later on.  Watch and wait or find a clinical trial.  Biochemo just isn't given much anymore and it is for stage IV disease not any other. 

                                                                                                                                                                JerryfromFauq
                                                                                                                                                                Participant
                                                                                                                                                                  In general I have found it better is someone stays in the room with the patient most of the time. My wife did go shopping a couple of times during my week. UVA has a decent setup for someone to sleep in the private rooms. As long as the nausea and and any diarrhea are under control, I don’t see a problem with flying home the same day. (I had 1 1/2 car ride to get home.)
                                                                                                                                                                  lisab60
                                                                                                                                                                  Participant
                                                                                                                                                                    Thanks so much for your input. It makes me feel like I am going in the right direction. I do not know if it low dosage or full strength. My husband is going and staying , but I did not expect him to stay with me. He reserved a room in the hotel connected to the hospital. Should we rethink this? I know he will stay with me, but I just think of how uncomfortable he will be in that little “chair bed”. Do you think I will be able to fly home the day I am released? It’s an hour flight.
                                                                                                                                                                  JerryfromFauq
                                                                                                                                                                  Participant

                                                                                                                                                                    i agree with your decision from the given chooses.  I went thru six weeks of IL-2 and would likely not be here except for it. 

                                                                                                                                                                    I have long pushed for the idea that some adjuvant treatment (possibly at a lower level than for one with active tumors) for NED people.  Glad to see trials going on in this area.  Do you know if they are using the full strengh treatments or a reduced level?

                                                                                                                                                                    I do recommend having someone stay with the one undergoing Biochem and/or IL-2.  The other thing to know is that BioChem is not JUST BioChem.  Biochem can be made up of various dosages of divverent treatments, not all BioChem is the same.  (All tend to be rough, but doable.)

                                                                                                                                                                    TSchulz
                                                                                                                                                                    Participant

                                                                                                                                                                      I don't have experience with biochemo but do have one suggestion you may want to check into.  I recall reading that there are trials out there that are trialing Stage III patients with no evidence of disease and giving them ipilibumab.  If I were in your shoes I think I'd be looking into that as an option. 

                                                                                                                                                                      Good luck in making these difficult decisions.

                                                                                                                                                                      Troy

                                                                                                                                                                      TSchulz
                                                                                                                                                                      Participant

                                                                                                                                                                        I don't have experience with biochemo but do have one suggestion you may want to check into.  I recall reading that there are trials out there that are trialing Stage III patients with no evidence of disease and giving them ipilibumab.  If I were in your shoes I think I'd be looking into that as an option. 

                                                                                                                                                                        Good luck in making these difficult decisions.

                                                                                                                                                                        Troy

                                                                                                                                                                        TSchulz
                                                                                                                                                                        Participant

                                                                                                                                                                          I don't have experience with biochemo but do have one suggestion you may want to check into.  I recall reading that there are trials out there that are trialing Stage III patients with no evidence of disease and giving them ipilibumab.  If I were in your shoes I think I'd be looking into that as an option. 

                                                                                                                                                                          Good luck in making these difficult decisions.

                                                                                                                                                                          Troy

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