Good news to share – still NED! – Melanoma Research Foundation

This topic has 36 replies, 13 voices, and was last updated 13 years, 1 month ago by MRFUser2011.

Post

- March 12, 2011 at 9:43 pm
- Quote
MaryD
Participant
I feel very fortunate to say that my latest CT scan was still clear – 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2.

I feel very fortunate to say that my latest CT scan was still clear – 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2.

I have been very blessed to not only live with this disease with a decent quality of life, but also to have met amazing patients and health care professionals who have touched my life.

I volunteer at a local Children's Hospital and for the past year I have have been visiting a little 2 year old girl with neuroblastoma.   She has been hospitalized for 2 years, been through everything imaginable , and yet perseveres every day.   She is a daily reminder of how precious life is and what it means to fight for it.

Know that there is hope!

Best wishes to all ..

Mary

Viewing 23 reply threads

Replies

- - March 12, 2011 at 10:35 pm
  - Quote
  lhaley
  Participant
  So happy for you!!!! Life is precious.
  
  linda
  
  Stage IV since 06
  
  Stable
- - March 12, 2011 at 10:35 pm
  - Quote
  lhaley
  Participant
  So happy for you!!!! Life is precious.
  
  linda
  
  Stage IV since 06
  
  Stable
- - March 13, 2011 at 1:33 am
  - Quote
  akls
  Participant
  Mary,
  
  So happy for your news. Thanks for sharing about your volunteer experience. It really puts things into perspective. I wish you many more years of NED.
  
  Amy S. in Michigan
- - March 13, 2011 at 1:33 am
  - Quote
  akls
  Participant
  Mary,
  
  So happy for your news. Thanks for sharing about your volunteer experience. It really puts things into perspective. I wish you many more years of NED.
  
  Amy S. in Michigan
- - March 13, 2011 at 12:09 pm
  - Quote
  RMcLegal
  Participant
  Thanks for posting the good news. I'm just a Stage IIIc slacker and it's nice to hear from Stage IV survivors who are doing well. Best wishes to you.
- - March 13, 2011 at 12:09 pm
  - Quote
  RMcLegal
  Participant
  Thanks for posting the good news. I'm just a Stage IIIc slacker and it's nice to hear from Stage IV survivors who are doing well. Best wishes to you.
- - March 13, 2011 at 12:39 pm
  - Quote
  RMcLegal
  Participant
  Mary- I've blogged about the lighter side of my journey at http://www.hotelmelanoma.blogspot.com. You might enjoy it, but better yet please consider being a "guest blogger". I'd bet you have lots of stories to tell. Take care.
- - March 13, 2011 at 12:39 pm
  - Quote
  RMcLegal
  Participant
  Mary- I've blogged about the lighter side of my journey at http://www.hotelmelanoma.blogspot.com. You might enjoy it, but better yet please consider being a "guest blogger". I'd bet you have lots of stories to tell. Take care.
- - March 13, 2011 at 9:32 pm
  - Quote
  Erica A
  Participant
  Great news! I think it's so important for those that are Stage IV and living life to spread the hope. When my husband was stage IV I was desperate to hear about anyone who survived and now he too is one of the survivors. Great to hear the good news!
- - March 13, 2011 at 9:32 pm
  - Quote
  Erica A
  Participant
  Great news! I think it's so important for those that are Stage IV and living life to spread the hope. When my husband was stage IV I was desperate to hear about anyone who survived and now he too is one of the survivors. Great to hear the good news!
- - March 14, 2011 at 10:36 am
  - Quote
  Rocco
  Participant
  Hi Mary,
  
  Congratulations on the great news! Thank you for your posts over the years which have helped me and no doubt others on our journies with mel.
  
  Celebrate!
  
  Rocco – IV since Aug 2005
  - March 14, 2011 at 11:24 am
    
    Quote
    Vermont_Donna
    Participant
    
    Dear Mary,
    
    Very nice news indeed. I just read your profile, and you have been through so much. How nice of you to visit the little girl, and you are right, while this illness is devastating, my life is richer because of the people I have met through the course of treatments and my friends and family have stepped up with their support and everlasting affection and are doing so well in keeping in touch with me. I still get cards and calls and emails from people wanting to know how I am doing and giving me support. I am blessed as I bet you feel you are too!
    
    Keep staying NED!
    
    Vermont_Donna, stage 3a
    
    currently NED/stable after 4 infusions of Ipi
  - March 14, 2011 at 11:24 am
    
    Quote
    Vermont_Donna
    Participant
    
    Dear Mary,
    
    Very nice news indeed. I just read your profile, and you have been through so much. How nice of you to visit the little girl, and you are right, while this illness is devastating, my life is richer because of the people I have met through the course of treatments and my friends and family have stepped up with their support and everlasting affection and are doing so well in keeping in touch with me. I still get cards and calls and emails from people wanting to know how I am doing and giving me support. I am blessed as I bet you feel you are too!
    
    Keep staying NED!
    
    Vermont_Donna, stage 3a
    
    currently NED/stable after 4 infusions of Ipi
- - March 14, 2011 at 10:36 am
  - Quote
  Rocco
  Participant
  Hi Mary,
  
  Congratulations on the great news! Thank you for your posts over the years which have helped me and no doubt others on our journies with mel.
  
  Celebrate!
  
  Rocco – IV since Aug 2005
- - March 14, 2011 at 3:34 pm
  - Quote
  dian in spokane
  Participant
  congratulations Mary!
- - March 14, 2011 at 3:34 pm
  - Quote
  dian in spokane
  Participant
  congratulations Mary!
- - March 14, 2011 at 8:25 pm
  - Quote
  LynnLuc
  Participant
  Great News! NED is our best friend!
- - March 14, 2011 at 8:25 pm
  - Quote
  LynnLuc
  Participant
  Great News! NED is our best friend!
- - March 15, 2011 at 3:42 am
  - Quote
  NancyGM
  Participant
  Mary, Congrats on great scan results and I am so touched that you have reached out to a child with Neuroblastoma..Life IS precious and you are doing very brave work.
  
  I volunteer with an organization called Living Art of Montana which uses the arts to promote healing for cancer patients. I also feel very lucky to have enjoyed NED at stage IV . Best Wishes, Nancy
- - March 15, 2011 at 3:42 am
  - Quote
  NancyGM
  Participant
  Mary, Congrats on great scan results and I am so touched that you have reached out to a child with Neuroblastoma..Life IS precious and you are doing very brave work.
  
  I volunteer with an organization called Living Art of Montana which uses the arts to promote healing for cancer patients. I also feel very lucky to have enjoyed NED at stage IV . Best Wishes, Nancy
- - March 15, 2011 at 7:17 am
  - Quote
  MRFUser2011
  Participant
  Mary, thank you for sharing your good news! You mentioned you had a lung met in 2007. I just had lung met removed last month and am curious if you did in treatment after your surgery and if so, what kind? Thanks for any info you can pass on and thank you for sharing your joy with all of us. Life is indeed very precious.
  
  Blessings, Shari
  - March 16, 2011 at 4:42 am
    
    Quote
    MaryD
    Participant
    
    Hi Shari,
    
    Yes, after my lung met I was in an Ipilimumab clinical trial for resected melanoma. I actually chose to do a treatment after each of my recurrences as I just never trust this crazy disease.
    
    My melanoma recurred in my left arm several times, then skipped the lymph nodes and went to the lung. After the fourth treatment of Ipi, it finally popped up in a lymph node under my arm (but the lung has been clear for over 3 years!). Following the lymph node recurrence, I elected to do a 6 month course of IL-2 (not as intense as high dose). So now it's been 2 1/2 years since that last recurrence.
    
    Keeping my fingers crossed! 🙂
    
    Wishing you good luck with your treatment decisions,
    
    Mary
  - March 16, 2011 at 7:06 am
    
    Quote
    MRFUser2011
    Participant
    
    Thanks Mary for the info. How many days were you on Ipi? It is the one that requires you to be in ICU, is that right? IL-2, is that the same thing as interferon or something different? I have started a notebook where I am keeping track of what I learn because I have read so much and between post-op issues and pain meds, my brain is in a fog. Thanks for sharing your information, very much appreciated.
    
    Blessings, Shari
  - March 16, 2011 at 10:37 pm
    
    Quote
    MaryD
    Participant
    
    Hi Shari,
    
    Ipi was just a 90 minute infusion and did not require a stay in the ICU – but the IL-2 did. I found the Ipi very tolerable though I was in the trial for resected disease and the dose was given once ever 8 wees. For unresectable disease I believe it is comprised of 4 doses given once every two weeks or so.
    
    It's good you are going to JWCI – they are good and very experienced with melanoma. Are you considering Ipi after your VATs surgery?
    
    Good luck!!
    
    Mary
  - March 17, 2011 at 12:21 am
    
    Quote
    MRFUser2011
    Participant
    
    Hi Mary,
    
    I am not sure what I am going to do. Ipi has not been mentioned to me by any of my doctors but I keep reading about it here and it sounds like a pretty good treatment but I wasn't sure how hard it is to take. I have been told by my surgical oncologist that he advises I take Leukine injections, self-administered, 2 weeks on/2 weeks off for a year. Not something I am looking forward to and of fairly low success in preventing future occurences from what all my docs have said. Even the surgeon said it is about a 5% boost to non-reccurence. But at this point, I will take the 5% and do the treatment if no other options are available to me.
    
    I don't even know if Ipi is an option for me right now and will have to ask my doctors. I am well, no symptoms, my nodules were found on scans. My only melanoma complications are post-op stuff and all very manageable. I am still dealing with pleural effusion and my surgeon says no point in getting another PET/CT to follow the left nodule until I am completely recovered from first VATS and ready to face another surgery. I agree and am currently working on healing fully.
    
    Thanks for sharing your info. I appreciate it and send you many NED wishes!
    
    Blessings, Shari
  - March 17, 2011 at 12:21 am
    
    Quote
    MRFUser2011
    Participant
    
    Hi Mary,
    
    I am not sure what I am going to do. Ipi has not been mentioned to me by any of my doctors but I keep reading about it here and it sounds like a pretty good treatment but I wasn't sure how hard it is to take. I have been told by my surgical oncologist that he advises I take Leukine injections, self-administered, 2 weeks on/2 weeks off for a year. Not something I am looking forward to and of fairly low success in preventing future occurences from what all my docs have said. Even the surgeon said it is about a 5% boost to non-reccurence. But at this point, I will take the 5% and do the treatment if no other options are available to me.
    
    I don't even know if Ipi is an option for me right now and will have to ask my doctors. I am well, no symptoms, my nodules were found on scans. My only melanoma complications are post-op stuff and all very manageable. I am still dealing with pleural effusion and my surgeon says no point in getting another PET/CT to follow the left nodule until I am completely recovered from first VATS and ready to face another surgery. I agree and am currently working on healing fully.
    
    Thanks for sharing your info. I appreciate it and send you many NED wishes!
    
    Blessings, Shari
  - March 16, 2011 at 10:37 pm
    
    Quote
    MaryD
    Participant
    
    Hi Shari,
    
    Ipi was just a 90 minute infusion and did not require a stay in the ICU – but the IL-2 did. I found the Ipi very tolerable though I was in the trial for resected disease and the dose was given once ever 8 wees. For unresectable disease I believe it is comprised of 4 doses given once every two weeks or so.
    
    It's good you are going to JWCI – they are good and very experienced with melanoma. Are you considering Ipi after your VATs surgery?
    
    Good luck!!
    
    Mary
  - March 16, 2011 at 7:06 am
    
    Quote
    MRFUser2011
    Participant
    
    Thanks Mary for the info. How many days were you on Ipi? It is the one that requires you to be in ICU, is that right? IL-2, is that the same thing as interferon or something different? I have started a notebook where I am keeping track of what I learn because I have read so much and between post-op issues and pain meds, my brain is in a fog. Thanks for sharing your information, very much appreciated.
    
    Blessings, Shari
  - March 16, 2011 at 4:42 am
    
    Quote
    MaryD
    Participant
    
    Hi Shari,
    
    Yes, after my lung met I was in an Ipilimumab clinical trial for resected melanoma. I actually chose to do a treatment after each of my recurrences as I just never trust this crazy disease.
    
    My melanoma recurred in my left arm several times, then skipped the lymph nodes and went to the lung. After the fourth treatment of Ipi, it finally popped up in a lymph node under my arm (but the lung has been clear for over 3 years!). Following the lymph node recurrence, I elected to do a 6 month course of IL-2 (not as intense as high dose). So now it's been 2 1/2 years since that last recurrence.
    
    Keeping my fingers crossed! 🙂
    
    Wishing you good luck with your treatment decisions,
    
    Mary
- - March 15, 2011 at 7:17 am
  - Quote
  MRFUser2011
  Participant
  Mary, thank you for sharing your good news! You mentioned you had a lung met in 2007. I just had lung met removed last month and am curious if you did in treatment after your surgery and if so, what kind? Thanks for any info you can pass on and thank you for sharing your joy with all of us. Life is indeed very precious.
  
  Blessings, Shari
- - March 16, 2011 at 7:17 pm
  - Quote
  Lauren mom to Jenna
  Participant
  Mary, very happy to hear!! Coffee soon?
  
  Lauren
  - March 16, 2011 at 10:34 pm
    
    Quote
    MaryD
    Participant
    
    Thank you so much Lauren- and I would love to have coffee soon – I've been thinknig about you .
    
    I'll send you an email and we can target a good date!
    
    Mary
  - March 16, 2011 at 10:34 pm
    
    Quote
    MaryD
    Participant
    
    Thank you so much Lauren- and I would love to have coffee soon – I've been thinknig about you .
    
    I'll send you an email and we can target a good date!
    
    Mary
- - March 16, 2011 at 7:17 pm
  - Quote
  Lauren mom to Jenna
  Participant
  Mary, very happy to hear!! Coffee soon?
  
  Lauren
- - March 16, 2011 at 11:32 pm
  - Quote
  Jim M.
  Participant
  Mary,
  
  You've made my day hearing your news. You are so full of life and it is an honor to know you. I will never forget how you have helped me during the time we were on the same clinical trial and afterward. I trust you will be NED for a long time.
  
  God Bless you,
  
  Jim M.
- - March 16, 2011 at 11:32 pm
  - Quote
  Jim M.
  Participant
  Mary,
  
  You've made my day hearing your news. You are so full of life and it is an honor to know you. I will never forget how you have helped me during the time we were on the same clinical trial and afterward. I trust you will be NED for a long time.
  
  God Bless you,
  
  Jim M.