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I need some positive feedback

Forums General Melanoma Community I need some positive feedback

  • Post
    KAF
    Participant

      I've been on the Opdivo/Yervoy combo since Early June.  I have stage 4 melanoma (to liver) w/BRAF.  I did great on the first two doses. After the 2nd dose I became hyperthyroid after being hypothyroid for over 10 years. I loved all the energy and was feeling amazing.  I did fine  on my third dose last Tuesday.  On friday night I got a headache – not a big deal.  Was with teen daughter and old friends all day at the Mall of America which can give anyone a headache. Thought nothing of it.  Headache got worse over the weekend and by Monday nothing would make it better (advil, aleve, etc…) By yesterday i was in so much pain and couldn't take it anymore so I contacted my oncolgist.  Went in for MRI & labs today and within 15 minutes of the MRI being done (I wasnt' even home yet) she called to say my pituitary was swollen and I had to go on predinosone immediately and had to stop treatment. She didn't say whether that was permanent but that we would reevaluate once the swelling went own.  I'm so angry that after feeling so amazing after the 2nd dose that a week after my 3rd I'm now on steroids and in essence cancelling the treatment.  I'm trying not to be down but this is the first day I've cried.  I'm trying to not let my daughter see and told her that I'm a fighter and I don't let a headache get the best of me.  Has anyone had positive results after only 2 treatments and when did you know?  What are my options now?  Single dose Opdivo or Keytruda maybe?  BRAF drugs?

      I'm a fighter and I hate feeling helpless.  I was prepared for the rashes (which I had one and Atarax helped) and the stomach issue (which never came).  I wasn't prepared for this one.

      Any words of advice or encouragement are needed!!!

      thank you all.

      karen

    Viewing 20 reply threads
    • Replies
        MoiraM
        Participant

          I was treated with Yervoy (Ipi)  and ended up with inflamation of the anterior pituitary gland (Ipilimumab-induced hypophysitis), so I would not be surprised if it is the Yervory (Ipi) component of your treatment that caused tis side effect.

          I had four infusions, at 3mg/kg, and I am a responder with my tumours shrinking (they could not be seen on a CT scan).

          I know there have been other people who did not finish all four doses of Yervoy (Ipi) and yet have responded.

          As far as I understand it, the steroids will not surpress any effect the Yervoy has had but may save your pituitray gland.

          MoiraM
          Participant

            I was treated with Yervoy (Ipi)  and ended up with inflamation of the anterior pituitary gland (Ipilimumab-induced hypophysitis), so I would not be surprised if it is the Yervory (Ipi) component of your treatment that caused tis side effect.

            I had four infusions, at 3mg/kg, and I am a responder with my tumours shrinking (they could not be seen on a CT scan).

            I know there have been other people who did not finish all four doses of Yervoy (Ipi) and yet have responded.

            As far as I understand it, the steroids will not surpress any effect the Yervoy has had but may save your pituitray gland.

            MoiraM
            Participant

              I was treated with Yervoy (Ipi)  and ended up with inflamation of the anterior pituitary gland (Ipilimumab-induced hypophysitis), so I would not be surprised if it is the Yervory (Ipi) component of your treatment that caused tis side effect.

              I had four infusions, at 3mg/kg, and I am a responder with my tumours shrinking (they could not be seen on a CT scan).

              I know there have been other people who did not finish all four doses of Yervoy (Ipi) and yet have responded.

              As far as I understand it, the steroids will not surpress any effect the Yervoy has had but may save your pituitray gland.

              Lee Parlier
              Participant

                I do feel your frustration. This disease is the worst thing I have ever gone through. There are so many hurdles. Insurance coverage, toxicity of treatments, melanoma unpredictability, bad news with scans. I get used to hearing, I have bad news. Every bit of bad news engulfs you with a helpless feeling, what next? When will I catch a break? Why can't this treatment work for me? The list goes on for everyone. But you are battling! The treatments keep getting better! Take a break and get strong to take your next course! This disease sucks but never will it suck out determination and hope. NEVER. 

                Lee Parlier
                Participant

                  I do feel your frustration. This disease is the worst thing I have ever gone through. There are so many hurdles. Insurance coverage, toxicity of treatments, melanoma unpredictability, bad news with scans. I get used to hearing, I have bad news. Every bit of bad news engulfs you with a helpless feeling, what next? When will I catch a break? Why can't this treatment work for me? The list goes on for everyone. But you are battling! The treatments keep getting better! Take a break and get strong to take your next course! This disease sucks but never will it suck out determination and hope. NEVER. 

                  Lee Parlier
                  Participant

                    I do feel your frustration. This disease is the worst thing I have ever gone through. There are so many hurdles. Insurance coverage, toxicity of treatments, melanoma unpredictability, bad news with scans. I get used to hearing, I have bad news. Every bit of bad news engulfs you with a helpless feeling, what next? When will I catch a break? Why can't this treatment work for me? The list goes on for everyone. But you are battling! The treatments keep getting better! Take a break and get strong to take your next course! This disease sucks but never will it suck out determination and hope. NEVER. 

                    Aaron
                    Participant

                      Karen,  well… I would take this as a sign that you are a responder (let's hope at least). You still have a good chance of being good to go. I had my third treatment the same day you did. During treatment I had an allergic reaction and dice I have experience mild fever (99.8) and sore forearms that lasted 4-5 days and I have a very mild headache that I really only experience if I bend over or cough/sneeze. I notified my doctors nurse and was basically told to keep hydrated and if it got worse or affected my vision to call back.  Again, pretty strange that we are on same schedule and not too long ago we talking about our lack of experiences and now we have similar experience though yours sound a bit worse than mine. Agai, I know it's difficult but try to take it in stride that this is a sign that something is working.  

                      Aaron
                      Participant

                        Karen,  well… I would take this as a sign that you are a responder (let's hope at least). You still have a good chance of being good to go. I had my third treatment the same day you did. During treatment I had an allergic reaction and dice I have experience mild fever (99.8) and sore forearms that lasted 4-5 days and I have a very mild headache that I really only experience if I bend over or cough/sneeze. I notified my doctors nurse and was basically told to keep hydrated and if it got worse or affected my vision to call back.  Again, pretty strange that we are on same schedule and not too long ago we talking about our lack of experiences and now we have similar experience though yours sound a bit worse than mine. Agai, I know it's difficult but try to take it in stride that this is a sign that something is working.  

                          KAF
                          Participant

                            Hi Aaron.  I've been wondering how you were doing after your infusion issues.  Keep an eye on that headache.  Mine never affected my vision at all.  It was mild over the weekend but by today it felt like someone was stabbing me in my head.  I knew it was the pituitary.  Unlike migraines my eyes were fine and it didn't get worse with sunlight or while working and nothing helped to get rid of it.  Took prednisone as soon as I got the scrip and now I feel like I never had it.  I feel good again.  If it is the yervoy that did it I really hope the  swelling goes down fast and that maybe I can do the opdivo part.  Sounds like the days of no symptoms are gone.  

                            KAF
                            Participant

                              Hi Aaron.  I've been wondering how you were doing after your infusion issues.  Keep an eye on that headache.  Mine never affected my vision at all.  It was mild over the weekend but by today it felt like someone was stabbing me in my head.  I knew it was the pituitary.  Unlike migraines my eyes were fine and it didn't get worse with sunlight or while working and nothing helped to get rid of it.  Took prednisone as soon as I got the scrip and now I feel like I never had it.  I feel good again.  If it is the yervoy that did it I really hope the  swelling goes down fast and that maybe I can do the opdivo part.  Sounds like the days of no symptoms are gone.  

                              KAF
                              Participant

                                Hi Aaron.  I've been wondering how you were doing after your infusion issues.  Keep an eye on that headache.  Mine never affected my vision at all.  It was mild over the weekend but by today it felt like someone was stabbing me in my head.  I knew it was the pituitary.  Unlike migraines my eyes were fine and it didn't get worse with sunlight or while working and nothing helped to get rid of it.  Took prednisone as soon as I got the scrip and now I feel like I never had it.  I feel good again.  If it is the yervoy that did it I really hope the  swelling goes down fast and that maybe I can do the opdivo part.  Sounds like the days of no symptoms are gone.  

                              Aaron
                              Participant

                                Karen,  well… I would take this as a sign that you are a responder (let's hope at least). You still have a good chance of being good to go. I had my third treatment the same day you did. During treatment I had an allergic reaction and dice I have experience mild fever (99.8) and sore forearms that lasted 4-5 days and I have a very mild headache that I really only experience if I bend over or cough/sneeze. I notified my doctors nurse and was basically told to keep hydrated and if it got worse or affected my vision to call back.  Again, pretty strange that we are on same schedule and not too long ago we talking about our lack of experiences and now we have similar experience though yours sound a bit worse than mine. Agai, I know it's difficult but try to take it in stride that this is a sign that something is working.  

                                Cathy M
                                Participant
                                  Karen, Sorry that you are having difficulties with your treatment. Keep your head held high. There are other options to try. My husband, stage4 since 2013, just completed a year of single Keytruda…ONE WHOLE YEAR!! I think that is fantastic!! Scan last Thursday showed pregression though so we are regrouping and moving on to try something else. Science has made such strides with melanoma treatments over the past several years…keep your spirit up and good luck with your treatment(s) !!
                                  Cathy M
                                  Participant
                                    Karen, Sorry that you are having difficulties with your treatment. Keep your head held high. There are other options to try. My husband, stage4 since 2013, just completed a year of single Keytruda…ONE WHOLE YEAR!! I think that is fantastic!! Scan last Thursday showed pregression though so we are regrouping and moving on to try something else. Science has made such strides with melanoma treatments over the past several years…keep your spirit up and good luck with your treatment(s) !!
                                      KAF
                                      Participant

                                        Thanks.  My mom was diagnosed with breast cancer a year ago.  She had a double mastectomy, chemo and radiation. She's cancer free right now and the worst news she got at her doc appt last week was that she had ear wax in her left year.  Hers was one year and done.  Sounds like melanoma is going to be a much longer battle but for my daughter I will battle how ever long it takes and show her I can do it with a sense of humor and dignity (even while going through a contentious divorce).  I used to think I was a chump but hopefully quickly going from chump to bad ass!!

                                        KAF
                                        Participant

                                          Thanks.  My mom was diagnosed with breast cancer a year ago.  She had a double mastectomy, chemo and radiation. She's cancer free right now and the worst news she got at her doc appt last week was that she had ear wax in her left year.  Hers was one year and done.  Sounds like melanoma is going to be a much longer battle but for my daughter I will battle how ever long it takes and show her I can do it with a sense of humor and dignity (even while going through a contentious divorce).  I used to think I was a chump but hopefully quickly going from chump to bad ass!!

                                          KAF
                                          Participant

                                            Thanks.  My mom was diagnosed with breast cancer a year ago.  She had a double mastectomy, chemo and radiation. She's cancer free right now and the worst news she got at her doc appt last week was that she had ear wax in her left year.  Hers was one year and done.  Sounds like melanoma is going to be a much longer battle but for my daughter I will battle how ever long it takes and show her I can do it with a sense of humor and dignity (even while going through a contentious divorce).  I used to think I was a chump but hopefully quickly going from chump to bad ass!!

                                            KAF
                                            Participant

                                              Oh I forgot to say that I'm sorry to hear about your husband and the progression.  Damn.  I hope there's another option that does an even better job then the keytruda. I'm keeping my fingers crossed!!

                                              KAF
                                              Participant

                                                Oh I forgot to say that I'm sorry to hear about your husband and the progression.  Damn.  I hope there's another option that does an even better job then the keytruda. I'm keeping my fingers crossed!!

                                                KAF
                                                Participant

                                                  Oh I forgot to say that I'm sorry to hear about your husband and the progression.  Damn.  I hope there's another option that does an even better job then the keytruda. I'm keeping my fingers crossed!!

                                                Cathy M
                                                Participant
                                                  Karen, Sorry that you are having difficulties with your treatment. Keep your head held high. There are other options to try. My husband, stage4 since 2013, just completed a year of single Keytruda…ONE WHOLE YEAR!! I think that is fantastic!! Scan last Thursday showed pregression though so we are regrouping and moving on to try something else. Science has made such strides with melanoma treatments over the past several years…keep your spirit up and good luck with your treatment(s) !!
                                                  Kristi Alfaro
                                                  Participant

                                                    I have never posted before but I wanted to give you some hope. I was diagnosed in late March with stage 4 melanoma to the lungs, bones and stomach. I'm braf positive.  I started the Yervoy/Opdivo combo on April 6. After my first dose my tumors swelled and I became severely dehydrated so I was admitted to the hospital for 2 days and put on pain medication. After my 2nd dose I developed a high fever, a slight rash and unbelievably severe headaches with vomiting.  I was admitted once again but this time for 8 days. I had swelling in the lining of my brain which is why the headaches were so severe. I also had my gallbladder removed while I was hospitalized, but that was pretty random and don't think it was tied to the immunotherapy. I was put on 60mg of prednisone and eventually tapered off for my next dose. After my 3rd dose I developed the fever again, joint pain and bad fatigue, so once again I was placed on prednisone.  This is when my oncologist took me off the combo and said I would just continue with the Opdivo due to the side effects I was having.  As for knowing if it was working, I found out my tumors were shrinking withing a few weeks because my visible ones were getting smaller. I also had a CT scan done while I was hospitalized the 2nd time and they informed me that my tumors were in fact shrinking. I just got my 1st dose of just Opdivo on July 1st, but I developed acute colitis 7 days after and was put back on prednisone. So, for right now I am slowly tapering off the steroids and I am down to 30mg a day. They are hoping to have me get my next treatment in about 2 weeks.  Now for the good news…my pet scan on July 13th show almost a complete response.  All those terrible side effects meant the combo is working. I hope the combo works for you. And don't lose hope even if you don't get all four combo doses. 

                                                     

                                                    Kristi Alfaro
                                                    Participant

                                                      I have never posted before but I wanted to give you some hope. I was diagnosed in late March with stage 4 melanoma to the lungs, bones and stomach. I'm braf positive.  I started the Yervoy/Opdivo combo on April 6. After my first dose my tumors swelled and I became severely dehydrated so I was admitted to the hospital for 2 days and put on pain medication. After my 2nd dose I developed a high fever, a slight rash and unbelievably severe headaches with vomiting.  I was admitted once again but this time for 8 days. I had swelling in the lining of my brain which is why the headaches were so severe. I also had my gallbladder removed while I was hospitalized, but that was pretty random and don't think it was tied to the immunotherapy. I was put on 60mg of prednisone and eventually tapered off for my next dose. After my 3rd dose I developed the fever again, joint pain and bad fatigue, so once again I was placed on prednisone.  This is when my oncologist took me off the combo and said I would just continue with the Opdivo due to the side effects I was having.  As for knowing if it was working, I found out my tumors were shrinking withing a few weeks because my visible ones were getting smaller. I also had a CT scan done while I was hospitalized the 2nd time and they informed me that my tumors were in fact shrinking. I just got my 1st dose of just Opdivo on July 1st, but I developed acute colitis 7 days after and was put back on prednisone. So, for right now I am slowly tapering off the steroids and I am down to 30mg a day. They are hoping to have me get my next treatment in about 2 weeks.  Now for the good news…my pet scan on July 13th show almost a complete response.  All those terrible side effects meant the combo is working. I hope the combo works for you. And don't lose hope even if you don't get all four combo doses. 

                                                       

                                                        KAF
                                                        Participant

                                                          Hi Anonymous.

                                                          I'm sitting here bawling so much I can hardly type.  Thank you for making your first post on this forum a response to my plea for positive feedback.  You have been through hell with not just the diagnosis but everything you have gone through with each and every dose.  I can't imagine what you and your family must be going through but YOU ARE MIGHTY!!!  If you can go through all of this and still continue on and fight then I'm not going to complain about my headache one bit.  I have an appointment with my oncologist on Tuesday and we will be discussing my options.  I've been on predinisone just a little over 24hrs and the heacache is almost gone. I didn't think I could continue this treatment after this but my endocrinologist called today and said that may not be the case.  I may just have to wait for a couple of weeks for the ptiuitary swelling to go down, go off the prednisone and then continue taking my synthroid for my thyroid but I was actually had a little hypothyroidsm for years so I'll just be taking a higher dose of the med that I've already been taking.  i keep tearing up every time I read that after all you went through that your PET scan showed such an amazing result.  Continue the fight and please post again and let me know how you are doing.  thank you thank you thank you!!!

                                                          KAF
                                                          Participant

                                                            Hi Anonymous.

                                                            I'm sitting here bawling so much I can hardly type.  Thank you for making your first post on this forum a response to my plea for positive feedback.  You have been through hell with not just the diagnosis but everything you have gone through with each and every dose.  I can't imagine what you and your family must be going through but YOU ARE MIGHTY!!!  If you can go through all of this and still continue on and fight then I'm not going to complain about my headache one bit.  I have an appointment with my oncologist on Tuesday and we will be discussing my options.  I've been on predinisone just a little over 24hrs and the heacache is almost gone. I didn't think I could continue this treatment after this but my endocrinologist called today and said that may not be the case.  I may just have to wait for a couple of weeks for the ptiuitary swelling to go down, go off the prednisone and then continue taking my synthroid for my thyroid but I was actually had a little hypothyroidsm for years so I'll just be taking a higher dose of the med that I've already been taking.  i keep tearing up every time I read that after all you went through that your PET scan showed such an amazing result.  Continue the fight and please post again and let me know how you are doing.  thank you thank you thank you!!!

                                                            KAF
                                                            Participant

                                                              Hi Anonymous.

                                                              I'm sitting here bawling so much I can hardly type.  Thank you for making your first post on this forum a response to my plea for positive feedback.  You have been through hell with not just the diagnosis but everything you have gone through with each and every dose.  I can't imagine what you and your family must be going through but YOU ARE MIGHTY!!!  If you can go through all of this and still continue on and fight then I'm not going to complain about my headache one bit.  I have an appointment with my oncologist on Tuesday and we will be discussing my options.  I've been on predinisone just a little over 24hrs and the heacache is almost gone. I didn't think I could continue this treatment after this but my endocrinologist called today and said that may not be the case.  I may just have to wait for a couple of weeks for the ptiuitary swelling to go down, go off the prednisone and then continue taking my synthroid for my thyroid but I was actually had a little hypothyroidsm for years so I'll just be taking a higher dose of the med that I've already been taking.  i keep tearing up every time I read that after all you went through that your PET scan showed such an amazing result.  Continue the fight and please post again and let me know how you are doing.  thank you thank you thank you!!!

                                                            Kristi Alfaro
                                                            Participant

                                                              I have never posted before but I wanted to give you some hope. I was diagnosed in late March with stage 4 melanoma to the lungs, bones and stomach. I'm braf positive.  I started the Yervoy/Opdivo combo on April 6. After my first dose my tumors swelled and I became severely dehydrated so I was admitted to the hospital for 2 days and put on pain medication. After my 2nd dose I developed a high fever, a slight rash and unbelievably severe headaches with vomiting.  I was admitted once again but this time for 8 days. I had swelling in the lining of my brain which is why the headaches were so severe. I also had my gallbladder removed while I was hospitalized, but that was pretty random and don't think it was tied to the immunotherapy. I was put on 60mg of prednisone and eventually tapered off for my next dose. After my 3rd dose I developed the fever again, joint pain and bad fatigue, so once again I was placed on prednisone.  This is when my oncologist took me off the combo and said I would just continue with the Opdivo due to the side effects I was having.  As for knowing if it was working, I found out my tumors were shrinking withing a few weeks because my visible ones were getting smaller. I also had a CT scan done while I was hospitalized the 2nd time and they informed me that my tumors were in fact shrinking. I just got my 1st dose of just Opdivo on July 1st, but I developed acute colitis 7 days after and was put back on prednisone. So, for right now I am slowly tapering off the steroids and I am down to 30mg a day. They are hoping to have me get my next treatment in about 2 weeks.  Now for the good news…my pet scan on July 13th show almost a complete response.  All those terrible side effects meant the combo is working. I hope the combo works for you. And don't lose hope even if you don't get all four combo doses. 

                                                               

                                                              Maria C
                                                              Participant

                                                                Hi Karen – 

                                                                So sorry your treatment has derailed a bit, but just want to encourage you to hang in there and let the steroids do their work. I was knocked off my 4-infusion ipi/nivo combo 3 times, with many months in between to resolve some rather severe side effects (retina detachment, pneumenitis), but in the end got all 4 infusions in my system doing their work. I am very grateful my oncologist watched me closely and got me through it all. 

                                                                I've been battling my mel a little over a year and still in a whirlwind of treament/recovery, but am noticing that the steroids are like a life raft sometimes – they help us float to our next treatment, whatever that might be. So grab the life raft and hang in, but don't give in!!

                                                                 

                                                                  KAF
                                                                  Participant

                                                                    Thank you for reaching out Maria.  I really thought the steroirds were going to be the end of this treatment but I'm hopeful its just a bump and I'll be able to continue on.  I had no idea I could continue if the ipi/nivo combo caused issues bad enough to need the steroids.  How are your scans?  Is the treatment helping enough for you to go through with the all the side effects?  Are you on something else now?

                                                                    Maria C
                                                                    Participant

                                                                      Body scans have been ok but the mets activity is still active in the brain. I am recovering right now from back-to-back craniotomies, and am tapering off steroids from that (should end this Wednesday). I took a break from the immunotherapy after the 4 combo infusions many months ago, but re-started a couple weeks ago with just pembro and no side effects from that yet. Wed. I'll have my 2nd infusion of pembro. The immunotherapy seems to be working in that no new mets have appeared (in the brain or elsewhere) since February. We're really just still dealing with the 5 brain mets that appeared awhile back (the initial gamma knife only seemed to work on one of the 5!).

                                                                      Will you find out this week if you can get back on the ipi/nivo combo?

                                                                      Maria C
                                                                      Participant

                                                                        Body scans have been ok but the mets activity is still active in the brain. I am recovering right now from back-to-back craniotomies, and am tapering off steroids from that (should end this Wednesday). I took a break from the immunotherapy after the 4 combo infusions many months ago, but re-started a couple weeks ago with just pembro and no side effects from that yet. Wed. I'll have my 2nd infusion of pembro. The immunotherapy seems to be working in that no new mets have appeared (in the brain or elsewhere) since February. We're really just still dealing with the 5 brain mets that appeared awhile back (the initial gamma knife only seemed to work on one of the 5!).

                                                                        Will you find out this week if you can get back on the ipi/nivo combo?

                                                                        Maria C
                                                                        Participant

                                                                          Body scans have been ok but the mets activity is still active in the brain. I am recovering right now from back-to-back craniotomies, and am tapering off steroids from that (should end this Wednesday). I took a break from the immunotherapy after the 4 combo infusions many months ago, but re-started a couple weeks ago with just pembro and no side effects from that yet. Wed. I'll have my 2nd infusion of pembro. The immunotherapy seems to be working in that no new mets have appeared (in the brain or elsewhere) since February. We're really just still dealing with the 5 brain mets that appeared awhile back (the initial gamma knife only seemed to work on one of the 5!).

                                                                          Will you find out this week if you can get back on the ipi/nivo combo?

                                                                          KAF
                                                                          Participant

                                                                            Thank you for reaching out Maria.  I really thought the steroirds were going to be the end of this treatment but I'm hopeful its just a bump and I'll be able to continue on.  I had no idea I could continue if the ipi/nivo combo caused issues bad enough to need the steroids.  How are your scans?  Is the treatment helping enough for you to go through with the all the side effects?  Are you on something else now?

                                                                            KAF
                                                                            Participant

                                                                              Thank you for reaching out Maria.  I really thought the steroirds were going to be the end of this treatment but I'm hopeful its just a bump and I'll be able to continue on.  I had no idea I could continue if the ipi/nivo combo caused issues bad enough to need the steroids.  How are your scans?  Is the treatment helping enough for you to go through with the all the side effects?  Are you on something else now?

                                                                            Maria C
                                                                            Participant

                                                                              Hi Karen – 

                                                                              So sorry your treatment has derailed a bit, but just want to encourage you to hang in there and let the steroids do their work. I was knocked off my 4-infusion ipi/nivo combo 3 times, with many months in between to resolve some rather severe side effects (retina detachment, pneumenitis), but in the end got all 4 infusions in my system doing their work. I am very grateful my oncologist watched me closely and got me through it all. 

                                                                              I've been battling my mel a little over a year and still in a whirlwind of treament/recovery, but am noticing that the steroids are like a life raft sometimes – they help us float to our next treatment, whatever that might be. So grab the life raft and hang in, but don't give in!!

                                                                               

                                                                              Maria C
                                                                              Participant

                                                                                Hi Karen – 

                                                                                So sorry your treatment has derailed a bit, but just want to encourage you to hang in there and let the steroids do their work. I was knocked off my 4-infusion ipi/nivo combo 3 times, with many months in between to resolve some rather severe side effects (retina detachment, pneumenitis), but in the end got all 4 infusions in my system doing their work. I am very grateful my oncologist watched me closely and got me through it all. 

                                                                                I've been battling my mel a little over a year and still in a whirlwind of treament/recovery, but am noticing that the steroids are like a life raft sometimes – they help us float to our next treatment, whatever that might be. So grab the life raft and hang in, but don't give in!!

                                                                                 

                                                                                ImMark
                                                                                Participant

                                                                                  Hi Karen,

                                                                                  I am also Stage 4 (enlarged lymph node under my arm and met on my thigh) and started my first combo treatment of ipilimumab and nivolumab on June 22nd. A couple of weeks afterwards I started feeling fatigued, then had high fever and headaches. I was kept in hospital for a week for observation and then discharged.

                                                                                  Since then my treatment has been delayed due to liver inflammation. I have been prescribed steroids, but then at the 11th hour the inflammation seems to come down again and the steroids put on hold.

                                                                                  I hope to get my second dose this week. But from what I have been told and read from other clinical trial results is that people who cannot complete the treatment have a response rate equal to those who complete the full treatment.

                                                                                  And steroids doesnt mean that the treatment is cancelled. It just means you have to put it on hold for  awhile. My Oncologist said that a delay in treatment wont make a difference. So if you have to stop for a while to get the side effects under control its not the worst thing to happen

                                                                                  So don't be disheartened if you have to stop. It doesnt mean that all hope is lost.

                                                                                  Aaron

                                                                                  ImMark
                                                                                  Participant

                                                                                    Hi Karen,

                                                                                    I am also Stage 4 (enlarged lymph node under my arm and met on my thigh) and started my first combo treatment of ipilimumab and nivolumab on June 22nd. A couple of weeks afterwards I started feeling fatigued, then had high fever and headaches. I was kept in hospital for a week for observation and then discharged.

                                                                                    Since then my treatment has been delayed due to liver inflammation. I have been prescribed steroids, but then at the 11th hour the inflammation seems to come down again and the steroids put on hold.

                                                                                    I hope to get my second dose this week. But from what I have been told and read from other clinical trial results is that people who cannot complete the treatment have a response rate equal to those who complete the full treatment.

                                                                                    And steroids doesnt mean that the treatment is cancelled. It just means you have to put it on hold for  awhile. My Oncologist said that a delay in treatment wont make a difference. So if you have to stop for a while to get the side effects under control its not the worst thing to happen

                                                                                    So don't be disheartened if you have to stop. It doesnt mean that all hope is lost.

                                                                                    Aaron

                                                                                    ImMark
                                                                                    Participant

                                                                                      Hi Karen,

                                                                                      I am also Stage 4 (enlarged lymph node under my arm and met on my thigh) and started my first combo treatment of ipilimumab and nivolumab on June 22nd. A couple of weeks afterwards I started feeling fatigued, then had high fever and headaches. I was kept in hospital for a week for observation and then discharged.

                                                                                      Since then my treatment has been delayed due to liver inflammation. I have been prescribed steroids, but then at the 11th hour the inflammation seems to come down again and the steroids put on hold.

                                                                                      I hope to get my second dose this week. But from what I have been told and read from other clinical trial results is that people who cannot complete the treatment have a response rate equal to those who complete the full treatment.

                                                                                      And steroids doesnt mean that the treatment is cancelled. It just means you have to put it on hold for  awhile. My Oncologist said that a delay in treatment wont make a difference. So if you have to stop for a while to get the side effects under control its not the worst thing to happen

                                                                                      So don't be disheartened if you have to stop. It doesnt mean that all hope is lost.

                                                                                      Aaron

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