New York Times interview about my melanoma journey and my success with Ipi

This topic has 28 replies, 8 voices, and was last updated 13 years, 8 months ago by Vermont_Donna.

Post

- March 24, 2011 at 7:01 pm
- Quote
Vermont_Donna
Participant
Hi,

I responded to a survey MRF posted and was selected to be interviewed by a New York Times reporter about my experience with Ipilimumab, and he actually wanted to know about my journey with melanoma (5 years) and other treatments. I dont know how much, if any, of my "story" he will arite up in the New York Times, but just to interview was exciting! The reporter called me at home last night. He said he will send me a copy of the article when he is finished.

Hi,

I responded to a survey MRF posted and was selected to be interviewed by a New York Times reporter about my experience with Ipilimumab, and he actually wanted to know about my journey with melanoma (5 years) and other treatments. I dont know how much, if any, of my "story" he will arite up in the New York Times, but just to interview was exciting! The reporter called me at home last night. He said he will send me a copy of the article when he is finished.

I know I dont have much experience with Ipi, just having started it December 1, 2010, but I have had really good success with it. I am hoping it keep on working for me and I start my next round mid-May.

Just wanted to let people here know.

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi

Viewing 11 reply threads

Replies

- - March 24, 2011 at 8:10 pm
  - Quote
  jim Breitfeller
  Participant
  Donna,
  
  Congrats on your NED with Ipilimumab (Yervoy)
  
  Remember us little guys when you become famous for Slaying the Beast. You derseve the credit in finding the right path for you. "Just follow the Yellow Brick Road" The roadmap to Recovery.
  
  Warm Regards,
  
  Jimmy B
  - March 25, 2011 at 12:02 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Jimmy,
    
    You are too funny! My journey would never have been so "miraculous" without the support of the MPIP board of wonderful people over the last 4 and 1/2 years. I did convey to the reporter how wonderful I thought the MRF site is, with the knowledge about melanoma contained on the site, the news updates, and most importantly, the bulletin board. Through MRF and the bulletin board I learned the "language" of cancer and specifically melanoma, I learned about treatments, and people's responses to them, and I have interacted with many people on the board and have become "friends" with several. The lady from MRF who spoke to me before the interview, said that people dont often remember drug names or other medical things but they DO remember a person's "STORY", and that is why, of the people who responded to the survey, they thought mine showed my many trials and tribulations and then great success (so far) with Ipi and the HOPE that I now feel that I can live at least a few more years if not many many more years!!! I do not know if other people were interviewed or not. I thought the reporter was well informed about melanoma.
    
    Jimmy, thanks so much for ALL your support to me. I do appreciate it so much.
    
    Hugs from Vermont,
    
    Vermont_Donna, stage 3a
    
    Stable (NED) after 4 infusions of Ipi
  - March 25, 2011 at 12:02 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Jimmy,
    
    You are too funny! My journey would never have been so "miraculous" without the support of the MPIP board of wonderful people over the last 4 and 1/2 years. I did convey to the reporter how wonderful I thought the MRF site is, with the knowledge about melanoma contained on the site, the news updates, and most importantly, the bulletin board. Through MRF and the bulletin board I learned the "language" of cancer and specifically melanoma, I learned about treatments, and people's responses to them, and I have interacted with many people on the board and have become "friends" with several. The lady from MRF who spoke to me before the interview, said that people dont often remember drug names or other medical things but they DO remember a person's "STORY", and that is why, of the people who responded to the survey, they thought mine showed my many trials and tribulations and then great success (so far) with Ipi and the HOPE that I now feel that I can live at least a few more years if not many many more years!!! I do not know if other people were interviewed or not. I thought the reporter was well informed about melanoma.
    
    Jimmy, thanks so much for ALL your support to me. I do appreciate it so much.
    
    Hugs from Vermont,
    
    Vermont_Donna, stage 3a
    
    Stable (NED) after 4 infusions of Ipi
- - March 24, 2011 at 8:10 pm
  - Quote
  jim Breitfeller
  Participant
  Donna,
  
  Congrats on your NED with Ipilimumab (Yervoy)
  
  Remember us little guys when you become famous for Slaying the Beast. You derseve the credit in finding the right path for you. "Just follow the Yellow Brick Road" The roadmap to Recovery.
  
  Warm Regards,
  
  Jimmy B
- - March 25, 2011 at 12:12 pm
  - Quote
  MichaelFL
  Participant
  Hi Donna,
  
  Glad your story is being told so that others can learn from it.
  
  Keep up the good work with the IPI, and congrats on the new grandbaby on April 11th.
  
  My grandbaby will be one on April 9th, so let the board know when the birth is. Maybe they can even share the same day.
  
  Michael
- - March 25, 2011 at 12:12 pm
  - Quote
  MichaelFL
  Participant
  Hi Donna,
  
  Glad your story is being told so that others can learn from it.
  
  Keep up the good work with the IPI, and congrats on the new grandbaby on April 11th.
  
  My grandbaby will be one on April 9th, so let the board know when the birth is. Maybe they can even share the same day.
  
  Michael
  - March 25, 2011 at 12:23 pm
    
    Quote
    Laurie from maine
    Participant
    
    Hi Donna,
    
    How exciting!! you have to let us know when it appears in the times. You are a celebrity and for a good cause even better 🙂 – next you will be scheduling your autograph signings up there in vermont. I am so glad the New York times has been running so many articles on melanoma – it is great to get the word out there and show the stories of those battling.
    
    I was thrilled to see your treatment is working well for you, keep it up!!
    
    let us know – hows the snow in vermont? we are almost rid of ours in my part of maine but slow process.
    
    laurie from maine 🙂
  - March 25, 2011 at 12:23 pm
    
    Quote
    Laurie from maine
    Participant
    
    Hi Donna,
    
    How exciting!! you have to let us know when it appears in the times. You are a celebrity and for a good cause even better 🙂 – next you will be scheduling your autograph signings up there in vermont. I am so glad the New York times has been running so many articles on melanoma – it is great to get the word out there and show the stories of those battling.
    
    I was thrilled to see your treatment is working well for you, keep it up!!
    
    let us know – hows the snow in vermont? we are almost rid of ours in my part of maine but slow process.
    
    laurie from maine 🙂
  - March 25, 2011 at 2:53 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Laurie,
    
    SNOW!!!!! We just got another 5-8 inches yesterday in Upstate NY. A total of 127 inches for the year. I hope Spring comes soon.
    
    Warm regards
    
    Jimmy B
  - March 25, 2011 at 2:53 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Laurie,
    
    SNOW!!!!! We just got another 5-8 inches yesterday in Upstate NY. A total of 127 inches for the year. I hope Spring comes soon.
    
    Warm regards
    
    Jimmy B
  - March 26, 2011 at 12:06 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Laurie,
    
    We have lots of snow still left here where I live and the beginnings of mud season!
    
    Happy Spring!
    
    Vermont_Donna
  - March 26, 2011 at 12:06 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Laurie,
    
    We have lots of snow still left here where I live and the beginnings of mud season!
    
    Happy Spring!
    
    Vermont_Donna
- - March 25, 2011 at 4:54 pm
  - Quote
  EmilyandMike
  Participant
  Donna – I am so excited to read this. That is so awesome. I am still confused by how you got Ipi at Stage 3a. My husband is 3a and he could not get into the blind adjuvant trial – which was all that was available for that stage at the time. I dont think you are on the adjuvant trial so could you refer me to the trial that you got into? Thanks
  
  Emily
  - March 26, 2011 at 12:04 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Emily,
    
    I was able to get into an Ipi trial for stage 3 and stage 4 patients with unresectable melanoma. My melanoma oncologist at Dartmouth Hitchcock Medical Center was a participating doctor and DHMC is where I was enrolled. I doubt that with FDA approval ther wont be any more Ipi trials. My trial was not a blind trial. I am glad it has worked, so far. Good luck in your treatment search, or hopefully your husband can now get ipi.
    
    Vermont_Donna, stage 3a
    
    currentlly stable after 4 infusions of Ipi
  - March 26, 2011 at 3:48 pm
    
    Quote
    EmilyandMike
    Participant
    
    Donna – thanks for the explanatoin and the NY Times article was great – how exciting! I think I was just confused that you said stage 3a and you got Ipi. But if you had mets that were unsresectable that qualifies you for other trials. I thought Stage 3a doesnt include sattelite/intransit mets (but 3b/3c does). I just hope that people with Stage 3a will be able to get Ipi now that it is FDA approved. It is so frusterating to be excluded from most everything.
    
    All my best
    
    Emily
  - March 26, 2011 at 11:13 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Emily,
    
    To clarify further, I did have intransit mets, 50 to 60 of them…..all in my leg….they were not resectable because of the number of them and because I have two poorly healing wounds on my lower leg that are 10 months and 5 months old of being raw, open oozing wounds!! My leg is therefore considered "unresectable". My oncologist originally diagnosed me with stage 3a melanoma cancer and said that they would not change the stage even with all the mets, unless I went to stage 4..their attitude was why bother?? So I dont know about whether I am really stage 3b or 3c, it never really mattered much to me, and I wasnt looking for any clinical trials until they offered me this one with Ipi, and I was accepted.
    
    Hope this helps,
    
    Vermont_Donna
  - March 26, 2011 at 11:13 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Emily,
    
    To clarify further, I did have intransit mets, 50 to 60 of them…..all in my leg….they were not resectable because of the number of them and because I have two poorly healing wounds on my lower leg that are 10 months and 5 months old of being raw, open oozing wounds!! My leg is therefore considered "unresectable". My oncologist originally diagnosed me with stage 3a melanoma cancer and said that they would not change the stage even with all the mets, unless I went to stage 4..their attitude was why bother?? So I dont know about whether I am really stage 3b or 3c, it never really mattered much to me, and I wasnt looking for any clinical trials until they offered me this one with Ipi, and I was accepted.
    
    Hope this helps,
    
    Vermont_Donna
  - March 26, 2011 at 3:48 pm
    
    Quote
    EmilyandMike
    Participant
    
    Donna – thanks for the explanatoin and the NY Times article was great – how exciting! I think I was just confused that you said stage 3a and you got Ipi. But if you had mets that were unsresectable that qualifies you for other trials. I thought Stage 3a doesnt include sattelite/intransit mets (but 3b/3c does). I just hope that people with Stage 3a will be able to get Ipi now that it is FDA approved. It is so frusterating to be excluded from most everything.
    
    All my best
    
    Emily
  - March 26, 2011 at 12:04 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Emily,
    
    I was able to get into an Ipi trial for stage 3 and stage 4 patients with unresectable melanoma. My melanoma oncologist at Dartmouth Hitchcock Medical Center was a participating doctor and DHMC is where I was enrolled. I doubt that with FDA approval ther wont be any more Ipi trials. My trial was not a blind trial. I am glad it has worked, so far. Good luck in your treatment search, or hopefully your husband can now get ipi.
    
    Vermont_Donna, stage 3a
    
    currentlly stable after 4 infusions of Ipi
- - March 25, 2011 at 4:54 pm
  - Quote
  EmilyandMike
  Participant
  Donna – I am so excited to read this. That is so awesome. I am still confused by how you got Ipi at Stage 3a. My husband is 3a and he could not get into the blind adjuvant trial – which was all that was available for that stage at the time. I dont think you are on the adjuvant trial so could you refer me to the trial that you got into? Thanks
  
  Emily
- - March 25, 2011 at 7:04 pm
  - Quote
  ValinMtl
  Participant
  Good news and an excellent candidate….after all the trials and tribulations you went through!! Wow…New York Times came calling….let me know when the article is posted so I dash out and buy one (live next to the border)…finally back from Florida where I had limited access to a computer (and laptops and I just don't really like each other, give me my old stand alone.) I'm posting now about my second round started yesterday. Val
- - March 25, 2011 at 7:04 pm
  - Quote
  ValinMtl
  Participant
  Good news and an excellent candidate….after all the trials and tribulations you went through!! Wow…New York Times came calling….let me know when the article is posted so I dash out and buy one (live next to the border)…finally back from Florida where I had limited access to a computer (and laptops and I just don't really like each other, give me my old stand alone.) I'm posting now about my second round started yesterday. Val
- - March 26, 2011 at 3:02 pm
  - Quote
  Sharyn
  Participant
  Hi Donna,
  
  New York Times!!?? Impressive!! I thought I was a big deal when I was interviewed for the local newspaper in Bethlehem, PA, but you've certainly topped me with an article in the NYT. I'm thrilled for you! Not just for the noteriety, but for all your success with ipi too. Keep it up!
  
  Hugs
  
  Sharyn, Stage IV
- - March 26, 2011 at 3:02 pm
  - Quote
  Sharyn
  Participant
  Hi Donna,
  
  New York Times!!?? Impressive!! I thought I was a big deal when I was interviewed for the local newspaper in Bethlehem, PA, but you've certainly topped me with an article in the NYT. I'm thrilled for you! Not just for the noteriety, but for all your success with ipi too. Keep it up!
  
  Hugs
  
  Sharyn, Stage IV
- - March 27, 2011 at 6:18 am
  - Quote
  CKasper
  Participant
  donna,
  
  I was on this page in 2006 and I remember you. I haven't been on in 4 years. I remember you managed to do the year of Interferon Therapy….I could only get through a 5 days as it really messed with my brain. My infusions were given to me at home by a visiting nurse….so after 5 infusions my family decided to take me to the Emergency Dept and the flushed the stuff out of me. Because of the severity of side effect from INF, I was ruled out of any other type of immuno therapy. and Since then I have nothing but autoimmune problems. No active disease but a host of other conditions some life threatening.
  
  I'm glad to see you are still here and I hope your new treatment with stop the beast.
  
  C
- - March 27, 2011 at 6:18 am
  - Quote
  CKasper
  Participant
  donna,
  
  I was on this page in 2006 and I remember you. I haven't been on in 4 years. I remember you managed to do the year of Interferon Therapy….I could only get through a 5 days as it really messed with my brain. My infusions were given to me at home by a visiting nurse….so after 5 infusions my family decided to take me to the Emergency Dept and the flushed the stuff out of me. Because of the severity of side effect from INF, I was ruled out of any other type of immuno therapy. and Since then I have nothing but autoimmune problems. No active disease but a host of other conditions some life threatening.
  
  I'm glad to see you are still here and I hope your new treatment with stop the beast.
  
  C
  - March 27, 2011 at 3:01 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    Thanks for posting a hello……I am sorry that you have had such a bad time with severe side effects……be well…
    
    Vermont_Donna
  - March 27, 2011 at 3:01 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    Thanks for posting a hello……I am sorry that you have had such a bad time with severe side effects……be well…
    
    Vermont_Donna