MRF-Logo2019-Horizontal-RGB
IPPI or Vemurafenib to start?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

IPPI or Vemurafenib to start?

› Forums › Cutaneous Melanoma Community › IPPI or Vemurafenib to start?

  • Post
    • February 1, 2012 at 7:45 pm
    Maxximom
    Participant

      Hello.. I am new here and I need some help. First some personal info. I am a 80 year ols. I had a CT scan in December for a totally different reason and the results came back showing a mass in my upper left lung consistant with lung Cancer.. I never smoked..so this was a shock,,the follow up Pet scan lit up where the mass was along with one node. A core biopsy of my lung came back with Metastatic Melanoma..even a bigger shock..since I have never had any type of skin lesions, of any kind. I met with a Melanoma specialist at OSU, James Cancer Center in Columbus last Thursday.

      Hello.. I am new here and I need some help. First some personal info. I am a 80 year ols. I had a CT scan in December for a totally different reason and the results came back showing a mass in my upper left lung consistant with lung Cancer.. I never smoked..so this was a shock,,the follow up Pet scan lit up where the mass was along with one node. A core biopsy of my lung came back with Metastatic Melanoma..even a bigger shock..since I have never had any type of skin lesions, of any kind. I met with a Melanoma specialist at OSU, James Cancer Center in Columbus last Thursday. The skin check reveled NO skin lesions of any kind..so the Primary site is unknown. I was given 3 treatment options..Temodor,Ipi or possibly Vemurafenib if I am B=Raf positive. I want to be as aggressive as possible..so I have pretty much decided not to go with the Temodor..the doctor wants to start me on the Ipi as she feels it has longer lasting  efects. I have tried to research as much as I can..and I am wondering if that is the way to go or not. The doctor feels that since the mass in my lung is causing no problems and I am having no symptoms that the Ipi should be the first line trestment. My thoughts are.. that I may or may not respond to the Ipi and it would ytake 4 or 5 months to know that..meanwhile this mass could grow and start to cause me problems..why not start first with the Vemurafenib..and shrink the mass..I would know very quikly..within a month or so if it works..and then try the Ipi (if possible) for long lasting results. Of course I am a total novice at this and the doctor has a lot more experience than I have. I have not built up a relationship with her or a feeling of trust as yst..I  did like her. I have not gone for a second opinion as yet..the nearest place for me to go would be Cleveland Clinic.. but franly when I looked on line..they didn't seen to be to big on Melanoma. I spoke with Johns Hoplkins and since my Son lives one hour away..it is a option. But I would have to stay here in Columbus for trestment. I live alone (daughter near by) I lost my Husband of 60 years 18 months ago and had been a full time caregiver and advocate for him. I caught so many medical mistakes and devrloped such a servere distast for doctors during that time..it is hard for me not to be a "control freak" when it comes to medical issues. My issticts have always been to go where I have to to get the best possible treatment..but the reality is// I am no longer a young as I was or as independent and traveling all over the country is no longer an option.I  really need to get some input here..so many of you have been on the journey that I am setting out on..can you help me? I have a appointment tomorrow at OSU to tell them of my decision…of course if I turn out to be B=Raf negative..then it's the Ippi..I look forward to replies.God bless you all

      Joan

       

       

    Viewing 5 reply threads
    • Replies
        • February 1, 2012 at 10:28 pm
        jmmm
        Participant
          Welcome to the crappiest club:). My husband is 38 and has been stage 4 since January 2011. We see a melanoma specialist and have done lots of research on treatment options. I know that from what we’ve read, Yervoy/Ipi would probably be the first option. Most people (if they respond) will see a response within 3 months. With only 1 met and no symptoms, you should have time for it to work. Zelboraf is typically used to reduce the tumor load so that the Yervoy can work. Yervoy is the only thing (that is FDA approved) that can give long term effects. Temador isn’t usually effective with melanoma. There are some real and scary side effects from Yervoy, but if you stay on top of them, they’re typically manageable. My. Hubby did Yervoy last summer with no side effects. It worked within weeks, but stopped working within 3 months. He’s on Zelboraf now and has had a horrible time with side effects. You definately need to see a doctor who has used Yervoy and knows how to handle the side effects. Best wishes.
          • February 1, 2012 at 10:28 pm
          jmmm
          Participant
            Welcome to the crappiest club:). My husband is 38 and has been stage 4 since January 2011. We see a melanoma specialist and have done lots of research on treatment options. I know that from what we’ve read, Yervoy/Ipi would probably be the first option. Most people (if they respond) will see a response within 3 months. With only 1 met and no symptoms, you should have time for it to work. Zelboraf is typically used to reduce the tumor load so that the Yervoy can work. Yervoy is the only thing (that is FDA approved) that can give long term effects. Temador isn’t usually effective with melanoma. There are some real and scary side effects from Yervoy, but if you stay on top of them, they’re typically manageable. My. Hubby did Yervoy last summer with no side effects. It worked within weeks, but stopped working within 3 months. He’s on Zelboraf now and has had a horrible time with side effects. You definately need to see a doctor who has used Yervoy and knows how to handle the side effects. Best wishes.
              • February 2, 2012 at 12:28 am
              Maxximom
              Participant

                Jmmm..thank you so much ffor your reply.. I am so sorry to hear about your husband…To go through this when you are so young and with children must be very hard to bear. I hope that he gets good results with his Zelboraf treatment. I have heard such hopeful things about it.That is why I am second guesing my doctors suggestions that I start with the Yervoy. I am aware of the side effects of both treatments..and since I live alone and need to function independently,,I worry about side effects and how I will manage. I am not even sure that the Zelboraf is available at OSU as it is still not FDA approved..so perhaps that is why she is suggesting the Yervoy. The first thing of course is to find out if I am even B-Raf positive. Are you aware of any other members of this forum that have been treated at the James Cancer Center at OSU..it is a comprehensive Cancer center..but I don't hear much about it as a Melanoma treatment center..what about Cleveland clinic..any feedback about them? Yes! this is a crappy club to become a menber of.. I never thought that I would become a member at my advanced age..who woulda thunk it?

                Joan

                 

                • February 2, 2012 at 1:47 am
                EmilyandMike
                Participant
                  Just wanted to add quickly that Zelboraf is definately FDA approved..Ipi takes longer to work so if the tumor burden is high they usually go with BRAF first. If the Tumor burden is low then yervoy.
                  • February 2, 2012 at 1:47 am
                  EmilyandMike
                  Participant
                    Just wanted to add quickly that Zelboraf is definately FDA approved..Ipi takes longer to work so if the tumor burden is high they usually go with BRAF first. If the Tumor burden is low then yervoy.
                    • February 2, 2012 at 1:47 am
                    EmilyandMike
                    Participant
                      Just wanted to add quickly that Zelboraf is definately FDA approved..Ipi takes longer to work so if the tumor burden is high they usually go with BRAF first. If the Tumor burden is low then yervoy.
                      • February 2, 2012 at 11:54 am
                      jmmm
                      Participant
                        Definately try to find a melanoma specialist. We started with a general oncologist and wish we started with the specialist. Unless you have horrible side effects from Yervoy, you should be able to function at home on your own. My husband could have driven himself to and from the hospital for treatment, if he had wanted to. Zelboraf is a temporary fix- it typically slows things down for 4-7 months. My husband started progressing at his 8 week scan. He’s still on Zelborf while we try to figure out what to do…we were hoping for a PD-1 tial but that’s not going to happen. Another thing that could be a possibility is Gleevec, if you are c-kit possitive. My husband started on that (the general oncologist messed up the pathology results and he’s really not c-kit positive, so it didn’t work). What we had read, it has a fairly high success rate. You need a biopsy for it, but if they’re testing for b-RAF, maybe they have enough sample left to test fo c-Kit?
                        • February 2, 2012 at 11:54 am
                        jmmm
                        Participant
                          Definately try to find a melanoma specialist. We started with a general oncologist and wish we started with the specialist. Unless you have horrible side effects from Yervoy, you should be able to function at home on your own. My husband could have driven himself to and from the hospital for treatment, if he had wanted to. Zelboraf is a temporary fix- it typically slows things down for 4-7 months. My husband started progressing at his 8 week scan. He’s still on Zelborf while we try to figure out what to do…we were hoping for a PD-1 tial but that’s not going to happen. Another thing that could be a possibility is Gleevec, if you are c-kit possitive. My husband started on that (the general oncologist messed up the pathology results and he’s really not c-kit positive, so it didn’t work). What we had read, it has a fairly high success rate. You need a biopsy for it, but if they’re testing for b-RAF, maybe they have enough sample left to test fo c-Kit?
                          • February 2, 2012 at 11:54 am
                          jmmm
                          Participant
                            Definately try to find a melanoma specialist. We started with a general oncologist and wish we started with the specialist. Unless you have horrible side effects from Yervoy, you should be able to function at home on your own. My husband could have driven himself to and from the hospital for treatment, if he had wanted to. Zelboraf is a temporary fix- it typically slows things down for 4-7 months. My husband started progressing at his 8 week scan. He’s still on Zelborf while we try to figure out what to do…we were hoping for a PD-1 tial but that’s not going to happen. Another thing that could be a possibility is Gleevec, if you are c-kit possitive. My husband started on that (the general oncologist messed up the pathology results and he’s really not c-kit positive, so it didn’t work). What we had read, it has a fairly high success rate. You need a biopsy for it, but if they’re testing for b-RAF, maybe they have enough sample left to test fo c-Kit?
                            • February 2, 2012 at 1:38 pm
                            Gene_S
                            Participant

                              Hello Joan,

                              So sorry you had to join the club but some help from this site is very good and helpful.

                              My husband is on a trial with Ipi (10 mg/kg which is higher than the FDA approved amount) and GM-CSF and he is doing his 40 week scans tomorrow.  We go to University Hospital in Cleveland (Seidman Cancer Center) and his oncologist does seminars on melanoma cancer.  His sub-qs we watched shrink and he also had them in his liver, lungs plus a large one on his head in the back that was pressing on his spine and inoperable.  The one on the head is totally gone and even shows new tissue growing back where it was.  His treatments were very doable with only a small amount of side effects.

                              Hope all goes well for you.

                              Judy (loving wife and caregiver to Gene Stage IV)

                              • February 2, 2012 at 1:38 pm
                              Gene_S
                              Participant

                                Hello Joan,

                                So sorry you had to join the club but some help from this site is very good and helpful.

                                My husband is on a trial with Ipi (10 mg/kg which is higher than the FDA approved amount) and GM-CSF and he is doing his 40 week scans tomorrow.  We go to University Hospital in Cleveland (Seidman Cancer Center) and his oncologist does seminars on melanoma cancer.  His sub-qs we watched shrink and he also had them in his liver, lungs plus a large one on his head in the back that was pressing on his spine and inoperable.  The one on the head is totally gone and even shows new tissue growing back where it was.  His treatments were very doable with only a small amount of side effects.

                                Hope all goes well for you.

                                Judy (loving wife and caregiver to Gene Stage IV)

                                • February 2, 2012 at 1:38 pm
                                Gene_S
                                Participant

                                  Hello Joan,

                                  So sorry you had to join the club but some help from this site is very good and helpful.

                                  My husband is on a trial with Ipi (10 mg/kg which is higher than the FDA approved amount) and GM-CSF and he is doing his 40 week scans tomorrow.  We go to University Hospital in Cleveland (Seidman Cancer Center) and his oncologist does seminars on melanoma cancer.  His sub-qs we watched shrink and he also had them in his liver, lungs plus a large one on his head in the back that was pressing on his spine and inoperable.  The one on the head is totally gone and even shows new tissue growing back where it was.  His treatments were very doable with only a small amount of side effects.

                                  Hope all goes well for you.

                                  Judy (loving wife and caregiver to Gene Stage IV)

                                  • February 2, 2012 at 12:28 am
                                  Maxximom
                                  Participant

                                    Jmmm..thank you so much ffor your reply.. I am so sorry to hear about your husband…To go through this when you are so young and with children must be very hard to bear. I hope that he gets good results with his Zelboraf treatment. I have heard such hopeful things about it.That is why I am second guesing my doctors suggestions that I start with the Yervoy. I am aware of the side effects of both treatments..and since I live alone and need to function independently,,I worry about side effects and how I will manage. I am not even sure that the Zelboraf is available at OSU as it is still not FDA approved..so perhaps that is why she is suggesting the Yervoy. The first thing of course is to find out if I am even B-Raf positive. Are you aware of any other members of this forum that have been treated at the James Cancer Center at OSU..it is a comprehensive Cancer center..but I don't hear much about it as a Melanoma treatment center..what about Cleveland clinic..any feedback about them? Yes! this is a crappy club to become a menber of.. I never thought that I would become a member at my advanced age..who woulda thunk it?

                                    Joan

                                     

                                    • February 2, 2012 at 12:28 am
                                    Maxximom
                                    Participant

                                      Jmmm..thank you so much ffor your reply.. I am so sorry to hear about your husband…To go through this when you are so young and with children must be very hard to bear. I hope that he gets good results with his Zelboraf treatment. I have heard such hopeful things about it.That is why I am second guesing my doctors suggestions that I start with the Yervoy. I am aware of the side effects of both treatments..and since I live alone and need to function independently,,I worry about side effects and how I will manage. I am not even sure that the Zelboraf is available at OSU as it is still not FDA approved..so perhaps that is why she is suggesting the Yervoy. The first thing of course is to find out if I am even B-Raf positive. Are you aware of any other members of this forum that have been treated at the James Cancer Center at OSU..it is a comprehensive Cancer center..but I don't hear much about it as a Melanoma treatment center..what about Cleveland clinic..any feedback about them? Yes! this is a crappy club to become a menber of.. I never thought that I would become a member at my advanced age..who woulda thunk it?

                                      Joan

                                       

                                    • February 1, 2012 at 10:28 pm
                                    jmmm
                                    Participant
                                      Welcome to the crappiest club:). My husband is 38 and has been stage 4 since January 2011. We see a melanoma specialist and have done lots of research on treatment options. I know that from what we’ve read, Yervoy/Ipi would probably be the first option. Most people (if they respond) will see a response within 3 months. With only 1 met and no symptoms, you should have time for it to work. Zelboraf is typically used to reduce the tumor load so that the Yervoy can work. Yervoy is the only thing (that is FDA approved) that can give long term effects. Temador isn’t usually effective with melanoma. There are some real and scary side effects from Yervoy, but if you stay on top of them, they’re typically manageable. My. Hubby did Yervoy last summer with no side effects. It worked within weeks, but stopped working within 3 months. He’s on Zelboraf now and has had a horrible time with side effects. You definately need to see a doctor who has used Yervoy and knows how to handle the side effects. Best wishes.
                                      • February 2, 2012 at 2:45 am
                                      LynnLuc
                                      Participant

                                        I did Temodar and the shelf life of that stuff was only about 6-7 months before it stops working. It doesn't shrink it or kill anything, but basically makes you stable for a very short while. I think if it was me I would hold of on th B raf –Vemurafenib ( if you have the mutation that is required to take it in the first place) and go for Ipi ( Yervoy)-

                                        Lynn ( I am in a vaccine trial using Anti-PD-1 and vaccine). 

                                          • February 2, 2012 at 2:55 am
                                          LynnLuc
                                          Participant

                                            I won't put down Cleveland Clinic, however I am a born and raised Buckeye getting treatment at Moffitt Cancer Center in Tampa Florida.  I would look to PA for a comprehensive melanoma center is you are a mid westerner. Also about Vemurafenib – it has failed a lot of people after a short while  and they are  using Vemurafenib  it with MEK , Ipi and other drugs hoping  for a more durable response….Ipi I think is your best bet.

                                            • February 2, 2012 at 2:55 am
                                            LynnLuc
                                            Participant

                                              I won't put down Cleveland Clinic, however I am a born and raised Buckeye getting treatment at Moffitt Cancer Center in Tampa Florida.  I would look to PA for a comprehensive melanoma center is you are a mid westerner. Also about Vemurafenib – it has failed a lot of people after a short while  and they are  using Vemurafenib  it with MEK , Ipi and other drugs hoping  for a more durable response….Ipi I think is your best bet.

                                              • February 2, 2012 at 2:55 am
                                              LynnLuc
                                              Participant

                                                I won't put down Cleveland Clinic, however I am a born and raised Buckeye getting treatment at Moffitt Cancer Center in Tampa Florida.  I would look to PA for a comprehensive melanoma center is you are a mid westerner. Also about Vemurafenib – it has failed a lot of people after a short while  and they are  using Vemurafenib  it with MEK , Ipi and other drugs hoping  for a more durable response….Ipi I think is your best bet.

                                                • February 4, 2012 at 10:29 pm
                                                Maxximom
                                                Participant

                                                  Thank you Lynn and to all the others who replied. I met with Dr Kari Kendra at The James Cancer Center at Osu on thursday. Kr. Kendra is a Melanoma specialist. She has not got the B=Raf test back as yet. I decided to go forward with the Ipi.  Dr Kendra feels that in my situation..whether I am B=Raf positive or not the Ipi would be my best option.I will have my first infusion next Thursday.. the day before my 81st Birthday.. Happy Birthday to mesmiley

                                                  I have even a better gift coming up on Monday. Last week I got a reminder in the mail the I am due for my 5 year Colonoscopy check..Dr Kendra wants that done before Thursday.. because of the possible Colitis side effects of the Ippi..she wants to make sure that there is nothing else going on. The Prep has me totally freaked ou..so you know where I will be sitting and watching the half time show of the superbowl tomorrow.

                                                  Glad to see there are other Buckeyes on the forum. I am a native New Yorker..but once you live here in Ohio..it is required that you become a Buckeys.

                                                  Lynn..how do you manage to live in Florida to receive treatment..do you have family there? I have a Son in the DC area and another Daughter in the Berkley Ca area..so I am pretty much stuck in Ohio or where my children are to get treatment. How and where do people manage to get treatment in area other than there home towns? I have another question..since I am so new to this disease and trying to learn some of the "lingo" What is meant buy "tumor load?

                                                  Thank you for your help. I know that you do not miss the winter weather here in Ohio.

                                                  Joan

                                                  • February 4, 2012 at 10:29 pm
                                                  Maxximom
                                                  Participant

                                                    Thank you Lynn and to all the others who replied. I met with Dr Kari Kendra at The James Cancer Center at Osu on thursday. Kr. Kendra is a Melanoma specialist. She has not got the B=Raf test back as yet. I decided to go forward with the Ipi.  Dr Kendra feels that in my situation..whether I am B=Raf positive or not the Ipi would be my best option.I will have my first infusion next Thursday.. the day before my 81st Birthday.. Happy Birthday to mesmiley

                                                    I have even a better gift coming up on Monday. Last week I got a reminder in the mail the I am due for my 5 year Colonoscopy check..Dr Kendra wants that done before Thursday.. because of the possible Colitis side effects of the Ippi..she wants to make sure that there is nothing else going on. The Prep has me totally freaked ou..so you know where I will be sitting and watching the half time show of the superbowl tomorrow.

                                                    Glad to see there are other Buckeyes on the forum. I am a native New Yorker..but once you live here in Ohio..it is required that you become a Buckeys.

                                                    Lynn..how do you manage to live in Florida to receive treatment..do you have family there? I have a Son in the DC area and another Daughter in the Berkley Ca area..so I am pretty much stuck in Ohio or where my children are to get treatment. How and where do people manage to get treatment in area other than there home towns? I have another question..since I am so new to this disease and trying to learn some of the "lingo" What is meant buy "tumor load?

                                                    Thank you for your help. I know that you do not miss the winter weather here in Ohio.

                                                    Joan

                                                    • February 4, 2012 at 10:29 pm
                                                    Maxximom
                                                    Participant

                                                      Thank you Lynn and to all the others who replied. I met with Dr Kari Kendra at The James Cancer Center at Osu on thursday. Kr. Kendra is a Melanoma specialist. She has not got the B=Raf test back as yet. I decided to go forward with the Ipi.  Dr Kendra feels that in my situation..whether I am B=Raf positive or not the Ipi would be my best option.I will have my first infusion next Thursday.. the day before my 81st Birthday.. Happy Birthday to mesmiley

                                                      I have even a better gift coming up on Monday. Last week I got a reminder in the mail the I am due for my 5 year Colonoscopy check..Dr Kendra wants that done before Thursday.. because of the possible Colitis side effects of the Ippi..she wants to make sure that there is nothing else going on. The Prep has me totally freaked ou..so you know where I will be sitting and watching the half time show of the superbowl tomorrow.

                                                      Glad to see there are other Buckeyes on the forum. I am a native New Yorker..but once you live here in Ohio..it is required that you become a Buckeys.

                                                      Lynn..how do you manage to live in Florida to receive treatment..do you have family there? I have a Son in the DC area and another Daughter in the Berkley Ca area..so I am pretty much stuck in Ohio or where my children are to get treatment. How and where do people manage to get treatment in area other than there home towns? I have another question..since I am so new to this disease and trying to learn some of the "lingo" What is meant buy "tumor load?

                                                      Thank you for your help. I know that you do not miss the winter weather here in Ohio.

                                                      Joan

                                                    • February 2, 2012 at 2:45 am
                                                    LynnLuc
                                                    Participant

                                                      I did Temodar and the shelf life of that stuff was only about 6-7 months before it stops working. It doesn't shrink it or kill anything, but basically makes you stable for a very short while. I think if it was me I would hold of on th B raf –Vemurafenib ( if you have the mutation that is required to take it in the first place) and go for Ipi ( Yervoy)-

                                                      Lynn ( I am in a vaccine trial using Anti-PD-1 and vaccine). 

                                                      • February 2, 2012 at 2:45 am
                                                      LynnLuc
                                                      Participant

                                                        I did Temodar and the shelf life of that stuff was only about 6-7 months before it stops working. It doesn't shrink it or kill anything, but basically makes you stable for a very short while. I think if it was me I would hold of on th B raf –Vemurafenib ( if you have the mutation that is required to take it in the first place) and go for Ipi ( Yervoy)-

                                                        Lynn ( I am in a vaccine trial using Anti-PD-1 and vaccine). 

                                                    Viewing 5 reply threads

                                                    Tagged: ,

                                                    • You must be logged in to reply to this topic.
                                                    About the MRF Patient Forum

                                                    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.

                                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                    Popular Topics