IPI and Scan results

This topic has 51 replies, 14 voices, and was last updated 11 years, 6 months ago by killmel.

Post

June 11, 2014 at 3:23 pm

Quote

Julie in SoCal

Participant

Dear Friends,

Thank you so much for asking about my scan results. Please celebrate with me! All is good! My scan came back "perfect", no funk, no hot spots and nothing to watch and see! It's all good. In addition, Rock Star Doc thinks I'm a complete responder to Ipi! The larger of my tumors is now pretty much down to nothing, and the three smaller ones are now smaller than rice grain size.

We also talked about the lingering side effects from Ipi. Mostly this is a more active immune system, so I'm much more sensitive to everything, like bug bites, flu, bad food… But probably the most annoying of these is "arthritis like" symptoms in my hands, wrists and shoulders. RS Doc said that this is from the IPI, and it should burn itself out in 6 months or so. RS Doc said I could do a 5 day course of prednisone to take care of my hands and arms, but I'm not sure what is worse- 6 months of sore hands and arms or 5 days of steroids (they make me crazy!!). Don't get me wrong this is is no fun, but after hearing the "complete responder" news, I pretty much didn't care about my hands and would gladly power through stiff mornings with a hotter shower and ibuprofen for kicking Mel to the curb!

And to add good news to good news, Rock Star Doc also said that I can be planning to go back to Asia! So the plan is for me to get scans in 3 months and in 6 months, and anticipating that everything will be fine, return to Asia sometime in the new year. Yea 2015!!

Some of the other things I learned from RS Doc: If you're an Ipi responder, you're probably not going to have a recurrence, but if you do, it's in the first two years. And if you're an ipi responder and get past 2 years with out a recurrence, he said he's never seen someone recur. Essentially you're cured (ok he didn't use the "cured" word"). Life is good!

Thank you friends for your wisdom and support and standing beside me in this!!

Julie

Viewing 23 reply threads

Replies

- - June 11, 2014 at 4:19 pm
  - Quote
  MoCedar
  Participant
  :)!!!!
- - June 11, 2014 at 4:19 pm
  - Quote
  MoCedar
  Participant
  :)!!!!
- - June 11, 2014 at 4:19 pm
  - Quote
  MoCedar
  Participant
  :)!!!!
- - June 11, 2014 at 4:38 pm
  - Quote
  Mat
  Participant
  Julie, great news! Thanks for sharing.
  - June 11, 2014 at 5:03 pm
    
    Quote
    killmel
    Participant
    
    SOOOOOOOOOOOOOOO HAPPY for you.
    
    Enjoy ..life is good
  - June 11, 2014 at 5:03 pm
    
    Quote
    killmel
    Participant
    
    SOOOOOOOOOOOOOOO HAPPY for you.
    
    Enjoy ..life is good
  - June 11, 2014 at 5:03 pm
    
    Quote
    killmel
    Participant
    
    SOOOOOOOOOOOOOOO HAPPY for you.
    
    Enjoy ..life is good
- - June 11, 2014 at 4:38 pm
  - Quote
  Mat
  Participant
  Julie, great news! Thanks for sharing.
- - June 11, 2014 at 4:38 pm
  - Quote
  Mat
  Participant
  Julie, great news! Thanks for sharing.
- - June 11, 2014 at 5:10 pm
  - Quote
  Gene_S
  Participant
  Great News. Keep your vitamin D3 levels up is a message from my husband.
  
  My husband is a responder to Ipi as well.
  
  I have a nurse friend that uses curcurmin for arthritis she takes 1000 at night and 650 in the morning and says she has no problem with her arthritis. Might be worth the try.
  
  Judy (loving wife to Gene Stage IV and now NED) thank you Ipi
  - June 11, 2014 at 8:32 pm
    
    Quote
    Gene_S
    Participant
    
    On to the Prednisone, Ipi made my husbands body stop producing Prednisone so he was placed on the medication while still taking the Ipi. He takes 7.5 mg a day to replace what your body naturally makes. This small amount might be what the doctor has in mind for you.
    
    Judy (loving wife to Gene Stage IV and now NED)
  - June 11, 2014 at 8:32 pm
    
    Quote
    Gene_S
    Participant
    
    On to the Prednisone, Ipi made my husbands body stop producing Prednisone so he was placed on the medication while still taking the Ipi. He takes 7.5 mg a day to replace what your body naturally makes. This small amount might be what the doctor has in mind for you.
    
    Judy (loving wife to Gene Stage IV and now NED)
  - June 11, 2014 at 8:32 pm
    
    Quote
    Gene_S
    Participant
    
    On to the Prednisone, Ipi made my husbands body stop producing Prednisone so he was placed on the medication while still taking the Ipi. He takes 7.5 mg a day to replace what your body naturally makes. This small amount might be what the doctor has in mind for you.
    
    Judy (loving wife to Gene Stage IV and now NED)
- - June 11, 2014 at 5:10 pm
  - Quote
  Gene_S
  Participant
  Great News. Keep your vitamin D3 levels up is a message from my husband.
  
  My husband is a responder to Ipi as well.
  
  I have a nurse friend that uses curcurmin for arthritis she takes 1000 at night and 650 in the morning and says she has no problem with her arthritis. Might be worth the try.
  
  Judy (loving wife to Gene Stage IV and now NED) thank you Ipi
- - June 11, 2014 at 5:10 pm
  - Quote
  Gene_S
  Participant
  Great News. Keep your vitamin D3 levels up is a message from my husband.
  
  My husband is a responder to Ipi as well.
  
  I have a nurse friend that uses curcurmin for arthritis she takes 1000 at night and 650 in the morning and says she has no problem with her arthritis. Might be worth the try.
  
  Judy (loving wife to Gene Stage IV and now NED) thank you Ipi
- - June 11, 2014 at 5:11 pm
  - Quote
  BrianP
  Participant
  Awesome news Julie!!!
  
  If you do decide to take Prednisone ask your rock star doc if he has any concerns about the steriods negatively impacting your immune system. I haven't done a lot of research on that myself but I have heard that concern before. That may be another reason for trying to power through the painful joints for a while. Congrats on the great news.
  - June 11, 2014 at 6:07 pm
    
    Quote
    RJoeyB
    Participant
    
    Congratulations Julie, that's awesome!
    
    On the steroids front, I concur with Brian. I received two full courses of IL-2 and TIL as part of a trial at NIH back in 2010-11. After my first round of IL-2, I was given a bracelet and wallet card that read "No Steroids Unless Medical Emergency" that I wear and carry with me for the rest of my life. Steroids dampen the immune response and, while there's no hard data that says how long TIL cells (for example) remain active in the system, I look at it as anything I can do to keep my immune system "in the fight" is a good thing. I had a brain met in early 2013 and was on dexamethasone to control swelling starting the day we found the tumor on the PET, through surgery five days later, and then for another few weeks after that, but I worked with my doctors to get off of them as soon as I could. They were "medically necessary" and I wasn't conflicted about using them when I had to, but just tried to manage it. To this day with any procedure I have, when asked about allergies, I have to note the bracelet and basically just tell whoever is asking, "I'm not allergic to steroids, and they won't hurt me, but they can dampen the effect of my previous treatments, so please use them only if you have to."
    
    I think you're taking a good approach to at least try to manage through without them.
    
    Best wishes,
    
    Joe
  - June 11, 2014 at 6:24 pm
    
    Quote
    Mat
    Participant
    
    On this topic of steroids and ipi, I was on high dose Prednisone for ~10 weeks as a result of ipi-related colitis. While I don't have any citations at my fingertips, I recall reading that folks (researchers) think that Prednisone does not adversely effect the ipi response. Folks are less certain about Remicade (which I avoided). That said, I may not be an ipi-responder, so I'm not an ideal example of someone who took Prednisone. In any case, my guess is that Julie would be on low dose Prednisone for a week, which shouldn't be a concern at all.
  - June 11, 2014 at 10:22 pm
    
    Quote
    Brendan
    Participant
    
    Great news, Julie! Enjoy:)
  - June 11, 2014 at 10:22 pm
    
    Quote
    Brendan
    Participant
    
    Great news, Julie! Enjoy:)
  - June 11, 2014 at 11:13 pm
    
    Quote
    vivian
    Participant
    
    This is just fabulous news, Julie! Hope you are having a celebratory evening!
    
    Lear
  - June 11, 2014 at 11:13 pm
    
    Quote
    vivian
    Participant
    
    This is just fabulous news, Julie! Hope you are having a celebratory evening!
    
    Lear
  - June 11, 2014 at 11:13 pm
    
    Quote
    vivian
    Participant
    
    This is just fabulous news, Julie! Hope you are having a celebratory evening!
    
    Lear
  - June 11, 2014 at 10:22 pm
    
    Quote
    Brendan
    Participant
    
    Great news, Julie! Enjoy:)
  - June 11, 2014 at 6:24 pm
    
    Quote
    Mat
    Participant
    
    On this topic of steroids and ipi, I was on high dose Prednisone for ~10 weeks as a result of ipi-related colitis. While I don't have any citations at my fingertips, I recall reading that folks (researchers) think that Prednisone does not adversely effect the ipi response. Folks are less certain about Remicade (which I avoided). That said, I may not be an ipi-responder, so I'm not an ideal example of someone who took Prednisone. In any case, my guess is that Julie would be on low dose Prednisone for a week, which shouldn't be a concern at all.
  - June 11, 2014 at 6:24 pm
    
    Quote
    Mat
    Participant
    
    On this topic of steroids and ipi, I was on high dose Prednisone for ~10 weeks as a result of ipi-related colitis. While I don't have any citations at my fingertips, I recall reading that folks (researchers) think that Prednisone does not adversely effect the ipi response. Folks are less certain about Remicade (which I avoided). That said, I may not be an ipi-responder, so I'm not an ideal example of someone who took Prednisone. In any case, my guess is that Julie would be on low dose Prednisone for a week, which shouldn't be a concern at all.
  - June 11, 2014 at 6:07 pm
    
    Quote
    RJoeyB
    Participant
    
    Congratulations Julie, that's awesome!
    
    On the steroids front, I concur with Brian. I received two full courses of IL-2 and TIL as part of a trial at NIH back in 2010-11. After my first round of IL-2, I was given a bracelet and wallet card that read "No Steroids Unless Medical Emergency" that I wear and carry with me for the rest of my life. Steroids dampen the immune response and, while there's no hard data that says how long TIL cells (for example) remain active in the system, I look at it as anything I can do to keep my immune system "in the fight" is a good thing. I had a brain met in early 2013 and was on dexamethasone to control swelling starting the day we found the tumor on the PET, through surgery five days later, and then for another few weeks after that, but I worked with my doctors to get off of them as soon as I could. They were "medically necessary" and I wasn't conflicted about using them when I had to, but just tried to manage it. To this day with any procedure I have, when asked about allergies, I have to note the bracelet and basically just tell whoever is asking, "I'm not allergic to steroids, and they won't hurt me, but they can dampen the effect of my previous treatments, so please use them only if you have to."
    
    I think you're taking a good approach to at least try to manage through without them.
    
    Best wishes,
    
    Joe
  - June 11, 2014 at 6:07 pm
    
    Quote
    RJoeyB
    Participant
    
    Congratulations Julie, that's awesome!
    
    On the steroids front, I concur with Brian. I received two full courses of IL-2 and TIL as part of a trial at NIH back in 2010-11. After my first round of IL-2, I was given a bracelet and wallet card that read "No Steroids Unless Medical Emergency" that I wear and carry with me for the rest of my life. Steroids dampen the immune response and, while there's no hard data that says how long TIL cells (for example) remain active in the system, I look at it as anything I can do to keep my immune system "in the fight" is a good thing. I had a brain met in early 2013 and was on dexamethasone to control swelling starting the day we found the tumor on the PET, through surgery five days later, and then for another few weeks after that, but I worked with my doctors to get off of them as soon as I could. They were "medically necessary" and I wasn't conflicted about using them when I had to, but just tried to manage it. To this day with any procedure I have, when asked about allergies, I have to note the bracelet and basically just tell whoever is asking, "I'm not allergic to steroids, and they won't hurt me, but they can dampen the effect of my previous treatments, so please use them only if you have to."
    
    I think you're taking a good approach to at least try to manage through without them.
    
    Best wishes,
    
    Joe
- - June 11, 2014 at 5:11 pm
  - Quote
  BrianP
  Participant
  Awesome news Julie!!!
  
  If you do decide to take Prednisone ask your rock star doc if he has any concerns about the steriods negatively impacting your immune system. I haven't done a lot of research on that myself but I have heard that concern before. That may be another reason for trying to power through the painful joints for a while. Congrats on the great news.
- - June 11, 2014 at 5:11 pm
  - Quote
  BrianP
  Participant
  Awesome news Julie!!!
  
  If you do decide to take Prednisone ask your rock star doc if he has any concerns about the steriods negatively impacting your immune system. I haven't done a lot of research on that myself but I have heard that concern before. That may be another reason for trying to power through the painful joints for a while. Congrats on the great news.
- - June 11, 2014 at 11:24 pm
  - Quote
  JoshF
  Participant
  Great to hear!!! So happy for you!!
- - June 11, 2014 at 11:24 pm
  - Quote
  JoshF
  Participant
  Great to hear!!! So happy for you!!
- - June 11, 2014 at 11:24 pm
  - Quote
  JoshF
  Participant
  Great to hear!!! So happy for you!!
- - June 12, 2014 at 12:20 am
  - Quote
  jbronicki
  Participant
  Wonderful, wonderful news, makes me smile! Thank you for sharing.
- - June 12, 2014 at 12:20 am
  - Quote
  jbronicki
  Participant
  Wonderful, wonderful news, makes me smile! Thank you for sharing.
  - June 12, 2014 at 3:59 am
    
    Quote
    Marianne quinn
    Participant
    
    I am so happy for you. Who is rock star doc? Gorgeous and smart it sounds like.
  - June 12, 2014 at 3:59 am
    
    Quote
    Marianne quinn
    Participant
    
    I am so happy for you. Who is rock star doc? Gorgeous and smart it sounds like.
  - June 12, 2014 at 3:00 pm
    
    Quote
    Julie in SoCal
    Participant
    
    Hi Marianne,
    
    Gorgeous, I'm sure Mrs Rock Star Doc thinks so 😉 Smart absolutely!
    
    Rock Star Doc is Dr. Steven O'Day at the Beverly Hills Cancer Center. He's a top shelf Mel Dr and very kind person at that.
    
    Julie
  - June 12, 2014 at 3:00 pm
    
    Quote
    Julie in SoCal
    Participant
    
    Hi Marianne,
    
    Gorgeous, I'm sure Mrs Rock Star Doc thinks so 😉 Smart absolutely!
    
    Rock Star Doc is Dr. Steven O'Day at the Beverly Hills Cancer Center. He's a top shelf Mel Dr and very kind person at that.
    
    Julie
  - June 12, 2014 at 3:00 pm
    
    Quote
    Julie in SoCal
    Participant
    
    Hi Marianne,
    
    Gorgeous, I'm sure Mrs Rock Star Doc thinks so 😉 Smart absolutely!
    
    Rock Star Doc is Dr. Steven O'Day at the Beverly Hills Cancer Center. He's a top shelf Mel Dr and very kind person at that.
    
    Julie
  - June 12, 2014 at 3:59 am
    
    Quote
    Marianne quinn
    Participant
    
    I am so happy for you. Who is rock star doc? Gorgeous and smart it sounds like.
- - June 12, 2014 at 12:20 am
  - Quote
  jbronicki
  Participant
  Wonderful, wonderful news, makes me smile! Thank you for sharing.
- - June 12, 2014 at 4:42 am
  - Quote
  Swanee
  Participant
  Great report, uplifting to all of us and I am so very excited for you! Feeling your joy tonight and celebrating your news! Wishing you continued good health and an end to your journey with melanoma!
  
  Swanee
- - June 12, 2014 at 4:42 am
  - Quote
  Swanee
  Participant
  Great report, uplifting to all of us and I am so very excited for you! Feeling your joy tonight and celebrating your news! Wishing you continued good health and an end to your journey with melanoma!
  
  Swanee
- - June 12, 2014 at 4:42 am
  - Quote
  Swanee
  Participant
  Great report, uplifting to all of us and I am so very excited for you! Feeling your joy tonight and celebrating your news! Wishing you continued good health and an end to your journey with melanoma!
  
  Swanee
- - June 12, 2014 at 5:23 am
  - Quote
  DZnDef
  Participant
  Julie – Great news! I'm very happy for you. I am also seeing Rock Star Doc. I think he used the phrase "homerun" while dancing around the "cure" word when I met him. Glad the Ipi has worked so well for you!
  
  Maggie
- - June 12, 2014 at 5:23 am
  - Quote
  DZnDef
  Participant
  Julie – Great news! I'm very happy for you. I am also seeing Rock Star Doc. I think he used the phrase "homerun" while dancing around the "cure" word when I met him. Glad the Ipi has worked so well for you!
  
  Maggie
  - June 12, 2014 at 3:34 pm
    
    Quote
    killmel
    Participant
    
    Hi Maggie,
    
    I read your profile. Are you receiving any treatment? Are you still working with Naturopath. I live in S.California so please tell me more about Naturopath. I am very interested.
    
    Thanks,
    
    Marybeth
  - June 12, 2014 at 3:34 pm
    
    Quote
    killmel
    Participant
    
    Hi Maggie,
    
    I read your profile. Are you receiving any treatment? Are you still working with Naturopath. I live in S.California so please tell me more about Naturopath. I am very interested.
    
    Thanks,
    
    Marybeth
  - June 12, 2014 at 3:34 pm
    
    Quote
    killmel
    Participant
    
    Hi Maggie,
    
    I read your profile. Are you receiving any treatment? Are you still working with Naturopath. I live in S.California so please tell me more about Naturopath. I am very interested.
    
    Thanks,
    
    Marybeth
- - June 12, 2014 at 5:23 am
  - Quote
  DZnDef
  Participant
  Julie – Great news! I'm very happy for you. I am also seeing Rock Star Doc. I think he used the phrase "homerun" while dancing around the "cure" word when I met him. Glad the Ipi has worked so well for you!
  
  Maggie