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After ipi what’s next? Help

Forums Cutaneous Melanoma Community After ipi what’s next? Help

  • Post
    ValinMtl
    Participant

      My doctors believe that melanoma has now spread to my left groin (confirmed to me tonight)…was always on my right leg before.  The ipilimumab did a wonderful job of 'stopping' my cutaneous growth problem on my leg but now have several new subcutaneous growths on the right leg plus am swollen in the left groin area. Last scan in November showed 20% increase in left groin area and 30% decrease in right.

      My doctors believe that melanoma has now spread to my left groin (confirmed to me tonight)…was always on my right leg before.  The ipilimumab did a wonderful job of 'stopping' my cutaneous growth problem on my leg but now have several new subcutaneous growths on the right leg plus am swollen in the left groin area. Last scan in November showed 20% increase in left groin area and 30% decrease in right.  I have a Pet scan this Friday and – the 2nd CT scan on 21st to see if I am eligible to re-enter the ipi trial.  The only other option I have here is the Dicarbazine and IL-21 50/50..of course, I would like the IL-21  but with 2 arms of a trial you never know where you end up. They have B-RAF trial but I am negative, darn.

      I would like a back-up plan if I'm thrown off the ipi trial. Preferably IL-21 or biochem, is anybody aware of a trial that I could possibly be eligible for, having done ipi and interferon. In the meantime, I keep ploughing through the clinical trials.  Many thanks for any help offered.  Val

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    • Replies
        ChristineL
        Participant

          Hi Val,

          I wish I had some answers, but I don't know that much!  I just want you to know that I'm thinking of you.  We need to kill this beast!

          Best,

          ChristineL aka farmgirl

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          ChristineL
          Participant

            Hi Val,

            I wish I had some answers, but I don't know that much!  I just want you to know that I'm thinking of you.  We need to kill this beast!

            Best,

            ChristineL aka farmgirl

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              ValinMtl
              Participant

                Hi Christine,

                Thanks for the words of encouragement. I enjoyed meeting you and Jerry from Cape Code at the Boston symposium.  I pray that the beast stays away for you…all that good organic food should do the trick.  Yep, I'm struggling right now, hoping to stay on ipi but doesn't look too promising.  Val

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                ValinMtl
                Participant

                  Hi Christine,

                  Thanks for the words of encouragement. I enjoyed meeting you and Jerry from Cape Code at the Boston symposium.  I pray that the beast stays away for you…all that good organic food should do the trick.  Yep, I'm struggling right now, hoping to stay on ipi but doesn't look too promising.  Val

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                Lori C
                Participant

                  Hi Val,

                  Since you have cutaneous tumors, what about the Oncovex trial?  What is your HLA A2 status?

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                  Lori C
                  Participant

                    Hi Val,

                    Since you have cutaneous tumors, what about the Oncovex trial?  What is your HLA A2 status?

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                      ValinMtl
                      Participant

                        Hi Lori

                        Thanks for the suggestion but my cutaneous tumors seem to be under control thanks to ipi.  It's the subcutaneous and the new problem with lymph nodes in the left groin area that are my real dilemma.  I know several on the board including Jim B. suggest IL-21 which I would gladly (I know it's not a walk in the park) take here, if I don't get an o.k. for ipi again but it's a 50-50 (the other arm is dicarabazine) and I always think of poor Will and his inability to get ipi because of being in the wrong arm of the first trials…I'm afraid that will happen to me.  The other option could be biochem.

                        After last night's discussion with the doctor, who is certain it's in my left groin now…huge swelling, I'm feeling very worried.  PET scan on Friday will tell us everything, I guess.  Val

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                        ValinMtl
                        Participant

                          Hi Lori

                          Thanks for the suggestion but my cutaneous tumors seem to be under control thanks to ipi.  It's the subcutaneous and the new problem with lymph nodes in the left groin area that are my real dilemma.  I know several on the board including Jim B. suggest IL-21 which I would gladly (I know it's not a walk in the park) take here, if I don't get an o.k. for ipi again but it's a 50-50 (the other arm is dicarabazine) and I always think of poor Will and his inability to get ipi because of being in the wrong arm of the first trials…I'm afraid that will happen to me.  The other option could be biochem.

                          After last night's discussion with the doctor, who is certain it's in my left groin now…huge swelling, I'm feeling very worried.  PET scan on Friday will tell us everything, I guess.  Val

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                          Vermont_Donna
                          Participant

                            Dear sweet Val!!!!

                               I am SO SORRY to hear this news! Glad the ipi worked on the tumors though. I am confused as to what is the difference between the cutaneous and the subcutaneous tumors…….the cutaneous being the tumors you see on the surface of your skin and the subq's you feel the tumors as lumps under the skin?? Then you have a large swelling in your groin…does your doc think thats the lymph nodes catching the melanoma? Now you have found tumors in your right leg? Are they right up close to the groin? I am surprised that the melanoma would go from leg to leg. Geesh I hope that your back up plan is figured out really soon. I have heard of IL2…what is IL 21? I am hoping the melanoma has not gone to an organ. Val, you are such a special gal and I feel like we are friends…certainly we are practically neighbors and I would love to meet sometime!!!! I am thinking of you and praying hard. Please keep us up to date when you can!

                            Hugs,

                            Vermont_Donna, stage 3a, currently doing IPI

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                            Vermont_Donna
                            Participant

                              Dear sweet Val!!!!

                                 I am SO SORRY to hear this news! Glad the ipi worked on the tumors though. I am confused as to what is the difference between the cutaneous and the subcutaneous tumors…….the cutaneous being the tumors you see on the surface of your skin and the subq's you feel the tumors as lumps under the skin?? Then you have a large swelling in your groin…does your doc think thats the lymph nodes catching the melanoma? Now you have found tumors in your right leg? Are they right up close to the groin? I am surprised that the melanoma would go from leg to leg. Geesh I hope that your back up plan is figured out really soon. I have heard of IL2…what is IL 21? I am hoping the melanoma has not gone to an organ. Val, you are such a special gal and I feel like we are friends…certainly we are practically neighbors and I would love to meet sometime!!!! I am thinking of you and praying hard. Please keep us up to date when you can!

                              Hugs,

                              Vermont_Donna, stage 3a, currently doing IPI

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                              ValinMtl
                              Participant

                                Thanks for the kind words Donna.  Strange how the ipi worked so well on my lofty number of cutaneous tumors (that's what the doctors called them…surface dark black spots rather like freckles some bigger/some smaller) – have mostly dried up and faded away (well, at least a lot of them).  I really only had one subcutaneous in the beginning but now I have several and more are starting to grow in a specific area on my leg, one is huge rather like five times the size of a pimple but purplish which seems to grow from under the skin.  They are coming up in the area where my leg was actually turning purple just before the trial started (the waiting time took forever).  Maybe it is the ipi fighting back in that area and on the left groin side as well. 

                                Hopefully, there is not enough increase to kick me off the trial..I just felt so shaken when the doctor told me that she believes the tumors are now in the lymph nodes in left groin area meaning disease has spread.  I'm holding on to what Jerry has to say below and praying hard.  Scans are coming up, I hate this disease.  In the meantime, trying to find a back-up plan. I don't really know if IL-2 and IL-21 are the same…Montreal trial is definitely IL-21 yet like you I have seen IL-2 discussed on the board as well

                                Maybe next summer, we can get together in Burlington VT..I love that little town..so pretty.  Val xx

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                                ValinMtl
                                Participant

                                  Thanks for the kind words Donna.  Strange how the ipi worked so well on my lofty number of cutaneous tumors (that's what the doctors called them…surface dark black spots rather like freckles some bigger/some smaller) – have mostly dried up and faded away (well, at least a lot of them).  I really only had one subcutaneous in the beginning but now I have several and more are starting to grow in a specific area on my leg, one is huge rather like five times the size of a pimple but purplish which seems to grow from under the skin.  They are coming up in the area where my leg was actually turning purple just before the trial started (the waiting time took forever).  Maybe it is the ipi fighting back in that area and on the left groin side as well. 

                                  Hopefully, there is not enough increase to kick me off the trial..I just felt so shaken when the doctor told me that she believes the tumors are now in the lymph nodes in left groin area meaning disease has spread.  I'm holding on to what Jerry has to say below and praying hard.  Scans are coming up, I hate this disease.  In the meantime, trying to find a back-up plan. I don't really know if IL-2 and IL-21 are the same…Montreal trial is definitely IL-21 yet like you I have seen IL-2 discussed on the board as well

                                  Maybe next summer, we can get together in Burlington VT..I love that little town..so pretty.  Val xx

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                                Jerry from Cape Cod
                                Participant

                                  Hi Val,

                                  No answers just some thoughts. Have the groin nodes been biopsied?  Could it be that the groin nodes are swelling from helping to clean up the sub q's?  Keep a watchful eye, but don't jump to conclusions.

                                  Wait for the scans and talk with your doctors in detail.

                                  Jerry from Cape Cod

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                                  Jerry from Cape Cod
                                  Participant

                                    Hi Val,

                                    No answers just some thoughts. Have the groin nodes been biopsied?  Could it be that the groin nodes are swelling from helping to clean up the sub q's?  Keep a watchful eye, but don't jump to conclusions.

                                    Wait for the scans and talk with your doctors in detail.

                                    Jerry from Cape Cod

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                                      ValinMtl
                                      Participant

                                        Thanks Jerry…I needed to hear this…trouble is the last CT scan in November showed 20% increase in groin nodes on left and feels much bigger now..that's why the doctor believes it is spreading. I'll try to take a few deep breaths and wait for scan results before jumping to conclusions.  I pray that it is the ipi doing the job…Val …

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                                        ValinMtl
                                        Participant

                                          Thanks Jerry…I needed to hear this…trouble is the last CT scan in November showed 20% increase in groin nodes on left and feels much bigger now..that's why the doctor believes it is spreading. I'll try to take a few deep breaths and wait for scan results before jumping to conclusions.  I pray that it is the ipi doing the job…Val …

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                                        Jim in Denver
                                        Participant

                                          Hi Val,

                                          Have you seen this about IL 21 yet?

                                          http://www.fiercebiotech.com/press-releases/zymogenetics-reports-favorable-survival-data-il-21-phase-2a-clinical-trial-melanoma-0

                                          I am in a similar situation with small subq "bumps" popping up.  You may recall I have been on an i+Temador trial since last August.  I will go for scans again on the 14th, and the subqs will be a imary topic.  As for "Plan Bs" I have a bias against randomization.  Biochemo ( which is an IL2 combo) has shown greater efficacy vs straight IL2 in some studies ( like double the rate), so that option should your list.  Oncovex/Biovex looks promising, enough so that Amgen bought the company this week.  That trial is not open in Canada yet, however, and is randomized.  E7080 would be another option, although that trial is not available in Canada.  Another approach would be the personalized vaccine approach, which is done at the NCI (mostly) here in the States.  It can be very effective, but is technically a tricky thing to do and kind of a rough treatment as well.  Sending my best wishes and thoughts your way.

                                          Best,

                                          Jim

                                           

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                                          Jim in Denver
                                          Participant

                                            Hi Val,

                                            Have you seen this about IL 21 yet?

                                            http://www.fiercebiotech.com/press-releases/zymogenetics-reports-favorable-survival-data-il-21-phase-2a-clinical-trial-melanoma-0

                                            I am in a similar situation with small subq "bumps" popping up.  You may recall I have been on an i+Temador trial since last August.  I will go for scans again on the 14th, and the subqs will be a imary topic.  As for "Plan Bs" I have a bias against randomization.  Biochemo ( which is an IL2 combo) has shown greater efficacy vs straight IL2 in some studies ( like double the rate), so that option should your list.  Oncovex/Biovex looks promising, enough so that Amgen bought the company this week.  That trial is not open in Canada yet, however, and is randomized.  E7080 would be another option, although that trial is not available in Canada.  Another approach would be the personalized vaccine approach, which is done at the NCI (mostly) here in the States.  It can be very effective, but is technically a tricky thing to do and kind of a rough treatment as well.  Sending my best wishes and thoughts your way.

                                            Best,

                                            Jim

                                             

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                                              ValinMtl
                                              Participant

                                                Thank you Jim.  I was hoping you would read my concerns and comment.  I'm also sorry to hear that you are having the same problem with the sub-qs. I do hope that these are a result of the iplimumab doing combat…would really appreciate hearing what your doctors have to say about them. 

                                                The info about IL-21 sounds very interesting and I will contact them through the number mentioned, in the event they know of a trial in Canada that has only one arm..IL-21. Like you I'm not a big fan of randomization and that is my only choice up here so far  IL-2 vs dicarbazine.  Nick below has provided me with a contact for IL2 trial…so I am looking elsewhere, even the doctor here suggested doing so if I can.  

                                                 I did send my doctor the link the the seminar presented by Dr. Wolchok at Sloan Kettering that you discussed in an earlier bullet about ipi reacting later in a person. I'm keeping your comments on my file and praying that the sub-qs are only hiccups and that we both can continue on ipi, which I have not found too difficult so far. I've been off since end of October, would start again in March if I pass the criteria!!  In the meantime, searching for other options is a good idea!  Val xx

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                                                ValinMtl
                                                Participant

                                                  Thank you Jim.  I was hoping you would read my concerns and comment.  I'm also sorry to hear that you are having the same problem with the sub-qs. I do hope that these are a result of the iplimumab doing combat…would really appreciate hearing what your doctors have to say about them. 

                                                  The info about IL-21 sounds very interesting and I will contact them through the number mentioned, in the event they know of a trial in Canada that has only one arm..IL-21. Like you I'm not a big fan of randomization and that is my only choice up here so far  IL-2 vs dicarbazine.  Nick below has provided me with a contact for IL2 trial…so I am looking elsewhere, even the doctor here suggested doing so if I can.  

                                                   I did send my doctor the link the the seminar presented by Dr. Wolchok at Sloan Kettering that you discussed in an earlier bullet about ipi reacting later in a person. I'm keeping your comments on my file and praying that the sub-qs are only hiccups and that we both can continue on ipi, which I have not found too difficult so far. I've been off since end of October, would start again in March if I pass the criteria!!  In the meantime, searching for other options is a good idea!  Val xx

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                                                nickmac56
                                                Participant

                                                  My wife is Stage 4 and is coming off Ipi, so far it has not worked (after 12 week scan), but we are waiting for 16 week scan before declaring failure.  In meantime she has been put into instant menopause to see if hormones have any connection.  failing that at week 16 she will do IL-2 in March.  Our backup plan to that is this trial, non-randomized:

                                                  http://www.clinicaltrials.gov/ct2/show/NCT01106235?term=NCT01106235&rank=1

                                                  Nick

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                                                  nickmac56
                                                  Participant

                                                    My wife is Stage 4 and is coming off Ipi, so far it has not worked (after 12 week scan), but we are waiting for 16 week scan before declaring failure.  In meantime she has been put into instant menopause to see if hormones have any connection.  failing that at week 16 she will do IL-2 in March.  Our backup plan to that is this trial, non-randomized:

                                                    http://www.clinicaltrials.gov/ct2/show/NCT01106235?term=NCT01106235&rank=1

                                                    Nick

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                                                      ValinMtl
                                                      Participant

                                                        Nick, thank you for sending me the link for this trial.  I pray that ipi does kick in and provide your family with a miracle.  It did wonders for my cutaneous melanoma and I know Sharyn from Newfoundland has had good shrinkage as well so perhaps you wife is a late starter.  I'm still hoping it might be still doing battle against the sub-qs and lymph node problem in groin area!!!! I don't know if you have seen this link that Jim provided a while ago.

                                                        http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

                                                        Also, if your wife does decide to go with the IL-2, there is a wonderful list of 'to do's' for the treatment provided by Jane from Maine.  I have a copy if you should need it.   Val

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                                                        ValinMtl
                                                        Participant

                                                          Nick, thank you for sending me the link for this trial.  I pray that ipi does kick in and provide your family with a miracle.  It did wonders for my cutaneous melanoma and I know Sharyn from Newfoundland has had good shrinkage as well so perhaps you wife is a late starter.  I'm still hoping it might be still doing battle against the sub-qs and lymph node problem in groin area!!!! I don't know if you have seen this link that Jim provided a while ago.

                                                          http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

                                                          Also, if your wife does decide to go with the IL-2, there is a wonderful list of 'to do's' for the treatment provided by Jane from Maine.  I have a copy if you should need it.   Val

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                                                          nickmac56
                                                          Participant

                                                            thanks Val – I had looked at the webinar that Jim referred me to re: Ipilimumab. I talked it over with our clinical research nurse and oncologist and that is the reason we have decided to hold off until week 16 to declare. In the meantime she is still experiencing some of the side effects, so we know it is still in her and hopefully working.  Today she made a statement that she thought her 2 sub-cutaneous tumors were shrinking – not sure if it's just optimism or reality, but it's first time she hasn't said they are growing.  I've also seen the suggestions for IL-2 treatment, thanks.  The search function on this forum is awesome and the past discussions and insights are very helpful.

                                                            Good luck in your treatment search.  If you decide to do the Fred Hutchinson trial let me know, we are in Seattle and it's almost in our back yard.  Our oncologist knows the guy running the trial.

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                                                            nickmac56
                                                            Participant

                                                              thanks Val – I had looked at the webinar that Jim referred me to re: Ipilimumab. I talked it over with our clinical research nurse and oncologist and that is the reason we have decided to hold off until week 16 to declare. In the meantime she is still experiencing some of the side effects, so we know it is still in her and hopefully working.  Today she made a statement that she thought her 2 sub-cutaneous tumors were shrinking – not sure if it's just optimism or reality, but it's first time she hasn't said they are growing.  I've also seen the suggestions for IL-2 treatment, thanks.  The search function on this forum is awesome and the past discussions and insights are very helpful.

                                                              Good luck in your treatment search.  If you decide to do the Fred Hutchinson trial let me know, we are in Seattle and it's almost in our back yard.  Our oncologist knows the guy running the trial.

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