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Please Help

Forums General Melanoma Community Please Help

  • Post
    DeniseK
    Participant

      OK, so most of you know my story.   I get my 4th and final infusion of Yervoy day after tomorrow and I am taking Dabrafenib full dose.

      Zelboraf quit working for me around the 6th month.  

      Anyway, I know my melanoma is getting worse.  I can feel subq's on my neck and back that are new.  The sub q on my arm is getting pretty big and I am going to talk to my doctor about removing it due to pain.  I am not sure if I can have surgery while on the medication.  I can quit the Dab cuz it's not working anyway but what about Ipi?  

      OK, so most of you know my story.   I get my 4th and final infusion of Yervoy day after tomorrow and I am taking Dabrafenib full dose.

      Zelboraf quit working for me around the 6th month.  

      Anyway, I know my melanoma is getting worse.  I can feel subq's on my neck and back that are new.  The sub q on my arm is getting pretty big and I am going to talk to my doctor about removing it due to pain.  I am not sure if I can have surgery while on the medication.  I can quit the Dab cuz it's not working anyway but what about Ipi?  

      Also I don't think I have the time for Ipi to kick in.  I can feel my body getting weaker and my back and chest are hurting more and more.  I know I only have a short time.  So I haven't got an MRI yet to see if my brain is stable but I have a feeling it's not.  I'm really hoping I'm wrong but I am having dizzy spells and pains in my head.  My question is what is left for me if I can't get into the PD-1 trial?  I was thinking temodar or IL2?  Are there any other options?  Is IL2 the one you have to go to the hospital for?  Is it Interleukin combined with what?  I am completely scared at this point and need some help.

      Thanks everyone

      Denise

       

       

       

       

    Viewing 35 reply threads
    • Replies
        BrianP
        Participant

          Denise,

          I'm so sorry you are having such a tough time.  I'm sure some of our smart folks will chime in with some great advice.  I'm not sure if you have seen the thread on MIF from Jonathan but he is enrolled in a very promising ADC clinical trial.  This might be another option for you.  Not sure of the eligibility requirements in regards to stable brain mets but I believe it has a fairly liberal eligiblity on previous treatments.  The results seem to be pretty quick if you are a responder and the side effects don't seem to be too bad.  The biggest negative now is it's only phase I so openings are scarce and the only locations I know are Detroit, Nashville, and LA. 

          http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

          Prayers for you Denise.

          Brian

          BrianP
          Participant

            Denise,

            I'm so sorry you are having such a tough time.  I'm sure some of our smart folks will chime in with some great advice.  I'm not sure if you have seen the thread on MIF from Jonathan but he is enrolled in a very promising ADC clinical trial.  This might be another option for you.  Not sure of the eligibility requirements in regards to stable brain mets but I believe it has a fairly liberal eligiblity on previous treatments.  The results seem to be pretty quick if you are a responder and the side effects don't seem to be too bad.  The biggest negative now is it's only phase I so openings are scarce and the only locations I know are Detroit, Nashville, and LA. 

            http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

            Prayers for you Denise.

            Brian

            BrianP
            Participant

              Denise,

              I'm so sorry you are having such a tough time.  I'm sure some of our smart folks will chime in with some great advice.  I'm not sure if you have seen the thread on MIF from Jonathan but he is enrolled in a very promising ADC clinical trial.  This might be another option for you.  Not sure of the eligibility requirements in regards to stable brain mets but I believe it has a fairly liberal eligiblity on previous treatments.  The results seem to be pretty quick if you are a responder and the side effects don't seem to be too bad.  The biggest negative now is it's only phase I so openings are scarce and the only locations I know are Detroit, Nashville, and LA. 

              http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

              Prayers for you Denise.

              Brian

              NYKaren
              Participant
                Hi Denise,
                So sorry you’re having a rough time.
                If you do wind up on a PD1 trial and wind up with the chemo option, Temodar is usually one of the mildest chemo choices. I don,t know what time frame you’d be looking at–4 weeks, 8 weeks, etc.
                Yes, IL2 is given in a hospital setting; either an ICU or other similar dedicated unit. As you’ve probably heard, it’s a very rough treatment, and most people recommend that a family member accompanies you.

                FYI, I am getting a lot of skin tags and squamous cell stuff from the Trafilnar, but I was told that once they resolve, they generally stay gone after about a month or two.
                What is your doctor saying about the options you’ve outlined?
                Karen

                NYKaren
                Participant
                  Hi Denise,
                  So sorry you’re having a rough time.
                  If you do wind up on a PD1 trial and wind up with the chemo option, Temodar is usually one of the mildest chemo choices. I don,t know what time frame you’d be looking at–4 weeks, 8 weeks, etc.
                  Yes, IL2 is given in a hospital setting; either an ICU or other similar dedicated unit. As you’ve probably heard, it’s a very rough treatment, and most people recommend that a family member accompanies you.

                  FYI, I am getting a lot of skin tags and squamous cell stuff from the Trafilnar, but I was told that once they resolve, they generally stay gone after about a month or two.
                  What is your doctor saying about the options you’ve outlined?
                  Karen

                  NYKaren
                  Participant
                    Hi Denise,
                    So sorry you’re having a rough time.
                    If you do wind up on a PD1 trial and wind up with the chemo option, Temodar is usually one of the mildest chemo choices. I don,t know what time frame you’d be looking at–4 weeks, 8 weeks, etc.
                    Yes, IL2 is given in a hospital setting; either an ICU or other similar dedicated unit. As you’ve probably heard, it’s a very rough treatment, and most people recommend that a family member accompanies you.

                    FYI, I am getting a lot of skin tags and squamous cell stuff from the Trafilnar, but I was told that once they resolve, they generally stay gone after about a month or two.
                    What is your doctor saying about the options you’ve outlined?
                    Karen

                    NYKaren
                    Participant
                      Yes, I had forgotten about Jonathan’s trial–that’s definitely worth checking out!
                      awillett1991
                      Participant
                        Denise,

                        I’m sorry you are having such a hard time, be sure you are getting lots of clear fluids, low bp could be causing the dizziness. I had that on Ipi. I’ve heard of temodar given with other Chemos, like avastin, and others, but what does your dr say? IL2 is usually given on its own, inpatient. A few centers still combine it w chemo ( biochemo) .

                        I have heard of people getting surgery while on Ipi or PD1, definitely.

                        Hang in there and keep fighting! I continue to pray for you.

                        Amy

                        awillett1991
                        Participant
                          Denise,

                          I’m sorry you are having such a hard time, be sure you are getting lots of clear fluids, low bp could be causing the dizziness. I had that on Ipi. I’ve heard of temodar given with other Chemos, like avastin, and others, but what does your dr say? IL2 is usually given on its own, inpatient. A few centers still combine it w chemo ( biochemo) .

                          I have heard of people getting surgery while on Ipi or PD1, definitely.

                          Hang in there and keep fighting! I continue to pray for you.

                          Amy

                          awillett1991
                          Participant
                            Denise,

                            I’m sorry you are having such a hard time, be sure you are getting lots of clear fluids, low bp could be causing the dizziness. I had that on Ipi. I’ve heard of temodar given with other Chemos, like avastin, and others, but what does your dr say? IL2 is usually given on its own, inpatient. A few centers still combine it w chemo ( biochemo) .

                            I have heard of people getting surgery while on Ipi or PD1, definitely.

                            Hang in there and keep fighting! I continue to pray for you.

                            Amy

                            doro
                            Participant

                              Denise,

                               

                              I don't have more to add to the other responses but just want to say I'll be sending good thoughts your way!!! I do not post on here much but check the board frequently. Your positive energy and strength have impressed and inspired me to remain hopeful many times. I hope you and your doctor are able to quickly identify some good next steps for you.

                               

                              Best,

                              Doro

                              doro
                              Participant

                                Denise,

                                 

                                I don't have more to add to the other responses but just want to say I'll be sending good thoughts your way!!! I do not post on here much but check the board frequently. Your positive energy and strength have impressed and inspired me to remain hopeful many times. I hope you and your doctor are able to quickly identify some good next steps for you.

                                 

                                Best,

                                Doro

                                doro
                                Participant

                                  Denise,

                                   

                                  I don't have more to add to the other responses but just want to say I'll be sending good thoughts your way!!! I do not post on here much but check the board frequently. Your positive energy and strength have impressed and inspired me to remain hopeful many times. I hope you and your doctor are able to quickly identify some good next steps for you.

                                   

                                  Best,

                                  Doro

                                  DeniseK
                                  Participant

                                    Thank you all very much for the information, I haven't seen my doctor in about 7 weeks since he went on vacation at my normal 3 week check in.  I have to call and get an appointment with my specialist, I might be able to get in next week.  I see my regular onc next week too so I can discuss my options with them then.  I hope low BP is the cause of the dizziness.    Blood work tomorrow and last infusion Thursday.  I'm hoping the Ipi kicks in after that.  AARRGGHHH!!  I hate having melanoma!!   I know one of the treatments I get is bound to work, I just gotta find the right one.

                                    My specialist didn't want me to do IL2 before because of my brain mets and all the radiation I've had but he may change his mind now that I'm getting worse.  I think I'm strong enough for it but I don't know.  Has anyone with brain mets and radiation ever done IL2?

                                    Oh and what makes IL2 so rough?  What kind of side effects?  Do they keep you drugged up in the hospital?  

                                    So many thoughts going on right now.

                                    Thanks again

                                    Denise

                                    POW
                                    Participant

                                      Oh, Denise! I hope you're wrong. I SO hope you're wrong and that the ipi is working even if it doesn't seem that way to you now. It is not at all unusual for it to take 3 or 4 months to have an effect. You're still trying to keep the melanoma at bay long enough for the ipi to work. Try not to get too rattled and discouraged yet. 

                                      By all means, do get yourself to drink lots of fluids. I agree that some of your symptoms could be dehydration. Try to keep eating healthfully. If you don't feel like eating, try finding some combination of fruits and veggies that you like and drink a couple of "green smoothies" each day– that's a good way to get fluids, too.

                                      You won't know for sure what is going on with you, especially in your brain, until the next set of scans. Do you know when they are scheduled? 

                                      Even though I am not convinced that the dabrafenib + ipi is not working, I think you are smart to be thinking of a Plan B. A Phase 1 clinical trial might be your best bet. True, Phase 1 trials mean they don't know if the drug will work or not. The good news is that you are certain of getting the drug, not a placebo. So check what Phase 1 trials might be available to you with brain mets and make contact with the trial coordinators. You might even put their phone numbers on "speed dial" in case you really do need them some day.smiley

                                      Your other option might be biochemo, which is a combination of several different drugs and chemicals including cisplatin, temodar, IL-2 and some others. Different treatment centers use different "recipes". I think that Dr. Minor has had success with biochemo, so you should ask him about it. 

                                      Biochemo is a very rough treatment and it doesn't work in most people. But when it does work it can work for a long time. Search this site for "biochemo" and you will see a lot of posts about it. 

                                      I know that you are feeling frightened and discouraged just now. But you do not KNOW exactly what is going on with your tumors. Try your best to hang onto your normal Positive Mental Attitude and start looking into a Plan B. Maybe just knowing what you will do IF you need to do something else will help you feel calmer.  

                                      POW
                                      Participant

                                        Oh, Denise! I hope you're wrong. I SO hope you're wrong and that the ipi is working even if it doesn't seem that way to you now. It is not at all unusual for it to take 3 or 4 months to have an effect. You're still trying to keep the melanoma at bay long enough for the ipi to work. Try not to get too rattled and discouraged yet. 

                                        By all means, do get yourself to drink lots of fluids. I agree that some of your symptoms could be dehydration. Try to keep eating healthfully. If you don't feel like eating, try finding some combination of fruits and veggies that you like and drink a couple of "green smoothies" each day– that's a good way to get fluids, too.

                                        You won't know for sure what is going on with you, especially in your brain, until the next set of scans. Do you know when they are scheduled? 

                                        Even though I am not convinced that the dabrafenib + ipi is not working, I think you are smart to be thinking of a Plan B. A Phase 1 clinical trial might be your best bet. True, Phase 1 trials mean they don't know if the drug will work or not. The good news is that you are certain of getting the drug, not a placebo. So check what Phase 1 trials might be available to you with brain mets and make contact with the trial coordinators. You might even put their phone numbers on "speed dial" in case you really do need them some day.smiley

                                        Your other option might be biochemo, which is a combination of several different drugs and chemicals including cisplatin, temodar, IL-2 and some others. Different treatment centers use different "recipes". I think that Dr. Minor has had success with biochemo, so you should ask him about it. 

                                        Biochemo is a very rough treatment and it doesn't work in most people. But when it does work it can work for a long time. Search this site for "biochemo" and you will see a lot of posts about it. 

                                        I know that you are feeling frightened and discouraged just now. But you do not KNOW exactly what is going on with your tumors. Try your best to hang onto your normal Positive Mental Attitude and start looking into a Plan B. Maybe just knowing what you will do IF you need to do something else will help you feel calmer.  

                                        POW
                                        Participant

                                          Oh, Denise! I hope you're wrong. I SO hope you're wrong and that the ipi is working even if it doesn't seem that way to you now. It is not at all unusual for it to take 3 or 4 months to have an effect. You're still trying to keep the melanoma at bay long enough for the ipi to work. Try not to get too rattled and discouraged yet. 

                                          By all means, do get yourself to drink lots of fluids. I agree that some of your symptoms could be dehydration. Try to keep eating healthfully. If you don't feel like eating, try finding some combination of fruits and veggies that you like and drink a couple of "green smoothies" each day– that's a good way to get fluids, too.

                                          You won't know for sure what is going on with you, especially in your brain, until the next set of scans. Do you know when they are scheduled? 

                                          Even though I am not convinced that the dabrafenib + ipi is not working, I think you are smart to be thinking of a Plan B. A Phase 1 clinical trial might be your best bet. True, Phase 1 trials mean they don't know if the drug will work or not. The good news is that you are certain of getting the drug, not a placebo. So check what Phase 1 trials might be available to you with brain mets and make contact with the trial coordinators. You might even put their phone numbers on "speed dial" in case you really do need them some day.smiley

                                          Your other option might be biochemo, which is a combination of several different drugs and chemicals including cisplatin, temodar, IL-2 and some others. Different treatment centers use different "recipes". I think that Dr. Minor has had success with biochemo, so you should ask him about it. 

                                          Biochemo is a very rough treatment and it doesn't work in most people. But when it does work it can work for a long time. Search this site for "biochemo" and you will see a lot of posts about it. 

                                          I know that you are feeling frightened and discouraged just now. But you do not KNOW exactly what is going on with your tumors. Try your best to hang onto your normal Positive Mental Attitude and start looking into a Plan B. Maybe just knowing what you will do IF you need to do something else will help you feel calmer.  

                                          aldakota22
                                          Participant

                                            Denise prayers sent your way.Hoping you get the right treatment or trial you need asap.You are a true fighter.Beat the Beast ……Al

                                            aldakota22
                                            Participant

                                              Denise prayers sent your way.Hoping you get the right treatment or trial you need asap.You are a true fighter.Beat the Beast ……Al

                                              aldakota22
                                              Participant

                                                Denise prayers sent your way.Hoping you get the right treatment or trial you need asap.You are a true fighter.Beat the Beast ……Al

                                                Swanee
                                                Participant

                                                  Denise,

                                                  Just letting you know I feel your despair and my heart goes out to you.  I don't have any suggestions for you other than the temodar might be right for you at this time.  Since I joined MPIP, I've seen many posts from other's whose options were shrinking and they chose temodar with good results/and or until they could get to the next trial/treatment option.  I will continue with positive thoughts and prayer for a treatment soon, that will renew your hope and restore your health.

                                                  You are such a fierce warrior in this fight and have shown amazing strength in your mindset and physical endurance. You are an inspiration to all of us who know your story and we continue to battle for and with you.  Stay strong, keep fighting!

                                                  Swanee

                                                  Swanee
                                                  Participant

                                                    Denise,

                                                    Just letting you know I feel your despair and my heart goes out to you.  I don't have any suggestions for you other than the temodar might be right for you at this time.  Since I joined MPIP, I've seen many posts from other's whose options were shrinking and they chose temodar with good results/and or until they could get to the next trial/treatment option.  I will continue with positive thoughts and prayer for a treatment soon, that will renew your hope and restore your health.

                                                    You are such a fierce warrior in this fight and have shown amazing strength in your mindset and physical endurance. You are an inspiration to all of us who know your story and we continue to battle for and with you.  Stay strong, keep fighting!

                                                    Swanee

                                                    Swanee
                                                    Participant

                                                      Denise,

                                                      Just letting you know I feel your despair and my heart goes out to you.  I don't have any suggestions for you other than the temodar might be right for you at this time.  Since I joined MPIP, I've seen many posts from other's whose options were shrinking and they chose temodar with good results/and or until they could get to the next trial/treatment option.  I will continue with positive thoughts and prayer for a treatment soon, that will renew your hope and restore your health.

                                                      You are such a fierce warrior in this fight and have shown amazing strength in your mindset and physical endurance. You are an inspiration to all of us who know your story and we continue to battle for and with you.  Stay strong, keep fighting!

                                                      Swanee

                                                      NYKaren
                                                      Participant
                                                        Hi Denise,

                                                        Here are some of my experiences with IL2:

                                                        I would check into the hospital early I’m Monday morning.

                                                        This was at Yale New Haven hospital. They do not use a n ICU unit, but a really nice, modern dedicated unit. Each room is private and has some sort of a fold-out recliner that a family-member can stay in.

                                                        First thing was Atavan. As soon as vital signs are taken, a pic line is set up. Everything that was done was done at my bedside–they used a fluoroscopy unit to get the line in.

                                                        After that, first bag of IL-2is given. (You’ll have to forgive me, I don’t remember how many they give, this was almost 2 years ago).

                                                        Many people have said they’ve gotten rigors after they start the drug; that didn’t happen to me.

                                                        As soon as the first bag started, my entire body would turn bright red and itchy. To answer your question, every symptom I had was treated with a drug. The itching was treated w/Benadryl or some other antihistamine. I had diarrhea most of the time, treated by lomotil or Imodium. I also gained about 20 lbs, as most people do, but it comes off in about a week.

                                                        After that, I had 2 bags of IL2 a day until Friday morning. Before every bag, they would ask me to count backwards from 100 by 7’s. I did a cheat sheet, but the doctor found it. It’s a good thing she had a sense of humor.

                                                        I’m pretty sure I’m telling you most things, but I’m sure I’ve forgotten a lot too. I did this for a total of 3 weeks, after determining that I was a partial responder.

                                                        Until I started taking Tranfilar, I was always a partial responder to every treatment, except Temodar, which didn’t help at all.

                                                        I hope this helps, Denise. If you want to PM me, I’ll be happy to answer any questions.

                                                        Take care,
                                                        Karen

                                                          NYKaren
                                                          Participant
                                                            Hi Denise,

                                                            Here are some of my experiences with IL2:

                                                            I would check into the hospital early I’m Monday morning.

                                                            This was at Yale New Haven hospital. They do not use a n ICU unit, but a really nice, modern dedicated unit. Each room is private and has some sort of a fold-out recliner that a family-member can stay in.

                                                            First thing was Atavan. As soon as vital signs are taken, a pic line is set up. Everything that was done was done at my bedside–they used a fluoroscopy unit to get the line in.

                                                            After that, first bag of IL-2is given. (You’ll have to forgive me, I don’t remember how many they give, this was almost 2 years ago).

                                                            Many people have said they’ve gotten rigors after they start the drug; that didn’t happen to me.

                                                            As soon as the first bag started, my entire body would turn bright red and itchy. To answer your question, every symptom I had was treated with a drug. The itching was treated w/Benadryl or some other antihistamine. I had diarrhea most of the time, treated by lomotil or Imodium. I also gained about 20 lbs, as most people do, but it comes off in about a week.

                                                            After that, I had 2 bags of IL2 a day until Friday morning. Before every bag, they would ask me to count backwards from 100 by 7’s. I did a cheat sheet, but the doctor found it. It’s a good thing she had a sense of humor.

                                                            I’m pretty sure I’m telling you most things, but I’m sure I’ve forgotten a lot too. I did this for a total of 3 weeks, after determining that I was a partial responder.

                                                            Until I started taking Tranfilar, I was always a partial responder to every treatment, except Temodar, which didn’t help at all.

                                                            I hope this helps, Denise. If you want to PM me, I’ll be happy to answer any questions.

                                                            Take care,
                                                            Karen

                                                            NYKaren
                                                            Participant
                                                              Hi Denise,

                                                              Here are some of my experiences with IL2:

                                                              I would check into the hospital early I’m Monday morning.

                                                              This was at Yale New Haven hospital. They do not use a n ICU unit, but a really nice, modern dedicated unit. Each room is private and has some sort of a fold-out recliner that a family-member can stay in.

                                                              First thing was Atavan. As soon as vital signs are taken, a pic line is set up. Everything that was done was done at my bedside–they used a fluoroscopy unit to get the line in.

                                                              After that, first bag of IL-2is given. (You’ll have to forgive me, I don’t remember how many they give, this was almost 2 years ago).

                                                              Many people have said they’ve gotten rigors after they start the drug; that didn’t happen to me.

                                                              As soon as the first bag started, my entire body would turn bright red and itchy. To answer your question, every symptom I had was treated with a drug. The itching was treated w/Benadryl or some other antihistamine. I had diarrhea most of the time, treated by lomotil or Imodium. I also gained about 20 lbs, as most people do, but it comes off in about a week.

                                                              After that, I had 2 bags of IL2 a day until Friday morning. Before every bag, they would ask me to count backwards from 100 by 7’s. I did a cheat sheet, but the doctor found it. It’s a good thing she had a sense of humor.

                                                              I’m pretty sure I’m telling you most things, but I’m sure I’ve forgotten a lot too. I did this for a total of 3 weeks, after determining that I was a partial responder.

                                                              Until I started taking Tranfilar, I was always a partial responder to every treatment, except Temodar, which didn’t help at all.

                                                              I hope this helps, Denise. If you want to PM me, I’ll be happy to answer any questions.

                                                              Take care,
                                                              Karen

                                                            Tina D
                                                            Participant

                                                              Denise, I am really sorry to see this news. I do know that you can have surgery while on the ipi ( I did) . Also… sometimes the ipi does not take too long to kick in…AND sometimes tumors actually increase a little in size before they start shrinking as a part of the whole immune response – so there is still hope that things can be working. I understand your fears, though, and am not trying to minimize those.. I do not know enough about what is currently out there trial-wise, I am sure others have much more info about that. When is your next scan? Also… there are other poss explanations for your symptoms – I had incredibly severe pains in my head, and dizziness when my pituitary got inflamed and swollen due to the ipi. When were your last labs and did they check thyroid AND cortisol levels? It took a few weeks while I had that headache for them to track down what was going on. Just a couple of ideas….

                                                              Tina

                                                              Tina D
                                                              Participant

                                                                Denise, I am really sorry to see this news. I do know that you can have surgery while on the ipi ( I did) . Also… sometimes the ipi does not take too long to kick in…AND sometimes tumors actually increase a little in size before they start shrinking as a part of the whole immune response – so there is still hope that things can be working. I understand your fears, though, and am not trying to minimize those.. I do not know enough about what is currently out there trial-wise, I am sure others have much more info about that. When is your next scan? Also… there are other poss explanations for your symptoms – I had incredibly severe pains in my head, and dizziness when my pituitary got inflamed and swollen due to the ipi. When were your last labs and did they check thyroid AND cortisol levels? It took a few weeks while I had that headache for them to track down what was going on. Just a couple of ideas….

                                                                Tina

                                                                Tina D
                                                                Participant

                                                                  Denise, I am really sorry to see this news. I do know that you can have surgery while on the ipi ( I did) . Also… sometimes the ipi does not take too long to kick in…AND sometimes tumors actually increase a little in size before they start shrinking as a part of the whole immune response – so there is still hope that things can be working. I understand your fears, though, and am not trying to minimize those.. I do not know enough about what is currently out there trial-wise, I am sure others have much more info about that. When is your next scan? Also… there are other poss explanations for your symptoms – I had incredibly severe pains in my head, and dizziness when my pituitary got inflamed and swollen due to the ipi. When were your last labs and did they check thyroid AND cortisol levels? It took a few weeks while I had that headache for them to track down what was going on. Just a couple of ideas….

                                                                  Tina

                                                                  Owl
                                                                  Participant

                                                                    Dear Denise,

                                                                    I am so sorry you are having such a hard time. I do not have another good advice, I think most options are said before. I hope Ipi will work finally for you, at least will slow things down. There are still options, you live in the states, actually the best place to live in with melanoma. You are so strong, go on and give melanoma a hard kick!

                                                                    My thaughts are with you! Jenny

                                                                    Owl
                                                                    Participant

                                                                      Dear Denise,

                                                                      I am so sorry you are having such a hard time. I do not have another good advice, I think most options are said before. I hope Ipi will work finally for you, at least will slow things down. There are still options, you live in the states, actually the best place to live in with melanoma. You are so strong, go on and give melanoma a hard kick!

                                                                      My thaughts are with you! Jenny

                                                                      Owl
                                                                      Participant

                                                                        Dear Denise,

                                                                        I am so sorry you are having such a hard time. I do not have another good advice, I think most options are said before. I hope Ipi will work finally for you, at least will slow things down. There are still options, you live in the states, actually the best place to live in with melanoma. You are so strong, go on and give melanoma a hard kick!

                                                                        My thaughts are with you! Jenny

                                                                        Janet Lee
                                                                        Participant

                                                                          Hi Denise,

                                                                          I haven't been on the Board too much lately, but you have been in my thoughts and prayers. Many of your melanoma experiences have mirrored my husband's, so I've felt a particular concern in hearing of your treatments and progress. I'm so sorry to hear that you are scared and think the Ipi might not be working. I don't have a lot of knowledge to share, but I have heard, like others on this Board, that the Ipi can make things worse before they get better. I do believe this was the case with my husband, Don. Actually, he was quite sick for the vast majority of the time he was on Ipi. It has now been 6 weeks since his last dose of Ipi, and the doctors have told us he is definitely responding. But it did take a long time before the improvements were noticeable. So don't give up!

                                                                          You continue to be in my thoughts. Stay strong. I hate this horrible disease!

                                                                          Janet

                                                                          Janet Lee
                                                                          Participant

                                                                            Hi Denise,

                                                                            I haven't been on the Board too much lately, but you have been in my thoughts and prayers. Many of your melanoma experiences have mirrored my husband's, so I've felt a particular concern in hearing of your treatments and progress. I'm so sorry to hear that you are scared and think the Ipi might not be working. I don't have a lot of knowledge to share, but I have heard, like others on this Board, that the Ipi can make things worse before they get better. I do believe this was the case with my husband, Don. Actually, he was quite sick for the vast majority of the time he was on Ipi. It has now been 6 weeks since his last dose of Ipi, and the doctors have told us he is definitely responding. But it did take a long time before the improvements were noticeable. So don't give up!

                                                                            You continue to be in my thoughts. Stay strong. I hate this horrible disease!

                                                                            Janet

                                                                            Janet Lee
                                                                            Participant

                                                                              Hi Denise,

                                                                              I haven't been on the Board too much lately, but you have been in my thoughts and prayers. Many of your melanoma experiences have mirrored my husband's, so I've felt a particular concern in hearing of your treatments and progress. I'm so sorry to hear that you are scared and think the Ipi might not be working. I don't have a lot of knowledge to share, but I have heard, like others on this Board, that the Ipi can make things worse before they get better. I do believe this was the case with my husband, Don. Actually, he was quite sick for the vast majority of the time he was on Ipi. It has now been 6 weeks since his last dose of Ipi, and the doctors have told us he is definitely responding. But it did take a long time before the improvements were noticeable. So don't give up!

                                                                              You continue to be in my thoughts. Stay strong. I hate this horrible disease!

                                                                              Janet

                                                                              casagrayson
                                                                              Participant

                                                                                Denise,

                                                                                You haven't checked in on the forum in a while.  How are things going?  Did you get in to see your doctor?

                                                                                Susan

                                                                                casagrayson
                                                                                Participant

                                                                                  Denise,

                                                                                  You haven't checked in on the forum in a while.  How are things going?  Did you get in to see your doctor?

                                                                                  Susan

                                                                                  casagrayson
                                                                                  Participant

                                                                                    Denise,

                                                                                    You haven't checked in on the forum in a while.  How are things going?  Did you get in to see your doctor?

                                                                                    Susan

                                                                                    NYKaren
                                                                                    Participant
                                                                                      Yes, I had forgotten about Jonathan’s trial–that’s definitely worth checking out!
                                                                                      NYKaren
                                                                                      Participant
                                                                                        Yes, I had forgotten about Jonathan’s trial–that’s definitely worth checking out!
                                                                                        DeniseK
                                                                                        Participant

                                                                                          Thank you all very much for the information, I haven't seen my doctor in about 7 weeks since he went on vacation at my normal 3 week check in.  I have to call and get an appointment with my specialist, I might be able to get in next week.  I see my regular onc next week too so I can discuss my options with them then.  I hope low BP is the cause of the dizziness.    Blood work tomorrow and last infusion Thursday.  I'm hoping the Ipi kicks in after that.  AARRGGHHH!!  I hate having melanoma!!   I know one of the treatments I get is bound to work, I just gotta find the right one.

                                                                                          My specialist didn't want me to do IL2 before because of my brain mets and all the radiation I've had but he may change his mind now that I'm getting worse.  I think I'm strong enough for it but I don't know.  Has anyone with brain mets and radiation ever done IL2?

                                                                                          Oh and what makes IL2 so rough?  What kind of side effects?  Do they keep you drugged up in the hospital?  

                                                                                          So many thoughts going on right now.

                                                                                          Thanks again

                                                                                          Denise

                                                                                          DeniseK
                                                                                          Participant

                                                                                            Thank you all very much for the information, I haven't seen my doctor in about 7 weeks since he went on vacation at my normal 3 week check in.  I have to call and get an appointment with my specialist, I might be able to get in next week.  I see my regular onc next week too so I can discuss my options with them then.  I hope low BP is the cause of the dizziness.    Blood work tomorrow and last infusion Thursday.  I'm hoping the Ipi kicks in after that.  AARRGGHHH!!  I hate having melanoma!!   I know one of the treatments I get is bound to work, I just gotta find the right one.

                                                                                            My specialist didn't want me to do IL2 before because of my brain mets and all the radiation I've had but he may change his mind now that I'm getting worse.  I think I'm strong enough for it but I don't know.  Has anyone with brain mets and radiation ever done IL2?

                                                                                            Oh and what makes IL2 so rough?  What kind of side effects?  Do they keep you drugged up in the hospital?  

                                                                                            So many thoughts going on right now.

                                                                                            Thanks again

                                                                                            Denise

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                                                                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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