JohnA
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.

JohnA

Forum Replies Created

Viewing 2 reply threads
1 2 3 … 5 6 7
  • Replies
      • August 21, 2016 at 2:17 am
      JohnA
      Participant

      Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.

      we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.

      her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?

      She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.

      With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…

      • August 21, 2016 at 2:17 am
      JohnA
      Participant

      Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.

      we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.

      her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?

      She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.

      With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…

      • August 21, 2016 at 2:17 am
      JohnA
      Participant

      Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.

      we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.

      her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?

      She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.

      With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…

      • February 28, 2017 at 2:57 pm
      JohnA
      Participant

      Our oncologist only agreed to work with us if we understand that all medical care for my wife would be run by him first. She gets a cold, they want to know. They ask her to check in regularly by calling the office.  I don't know how they manage it, honestly.  But, I'm just saying this b/c that standard of care is out there.  I think you're in the DC area – if so, if I were you I'd drive over to Hopkins and see Dr. Sharfman.

      • February 28, 2017 at 2:52 pm
      JohnA
      Participant

      We had a great experience with Dr. Bill Sharfman at Hopkins.  Very knowledgable, kind and responsive.

      Also, if you're willing to travel to Sloan, Paul Chapman is fantastic. The initial clinical trials for combo therapy were generated there. Or, a little further for you, Dr. Hodi at Dana Farber who has also fostered clinical trials. 

      We have really benefitted from being at a place working with a doc who has run lots of patients through immunotherapy protocols as part of the Keynote and other trials, since we belive it's the clinical judgement that has truly made a difference in my wife's care.  We asked how many patients the doc has treated with the therapy recommended for my wife and found people whose judgement we really respected.

       

      • August 27, 2016 at 5:23 am
      JohnA
      Participant

      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

       

      • August 27, 2016 at 5:23 am
      JohnA
      Participant

      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

       

      • August 27, 2016 at 5:23 am
      JohnA
      Participant

      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

       

      • August 27, 2016 at 5:23 am
      JohnA
      Participant

      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

       

      • August 27, 2016 at 5:23 am
      JohnA
      Participant

      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

       

      • August 27, 2016 at 5:23 am
      JohnA
      Participant

      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

       

      • August 27, 2016 at 5:19 am
      JohnA
      Participant

      Gamma knife is a type of srs, yes. Srs is stereotactic radiosurgery.  

      • August 27, 2016 at 5:19 am
      JohnA
      Participant

      Gamma knife is a type of srs, yes. Srs is stereotactic radiosurgery.  

      • August 27, 2016 at 5:19 am
      JohnA
      Participant

      Gamma knife is a type of srs, yes. Srs is stereotactic radiosurgery.  

      • August 18, 2016 at 6:37 pm
      JohnA
      Participant

      Thanks Kyle – we just met the radiation onc and they will use a mask here instead of a frame. Not user if we should be concerned about that or not.

Viewing 2 reply threads
1 2 3 … 5 6 7
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