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July 31, 2013 at 4:44 am #21487dkmcParticipant
Well visit with oncologist today 5 weeks post colon resection. She looked into trials (as I have been doing) but as he now has no measurable disease(nooo complaints here) he just does not qualify. We would love to get him into an IPI/PD1 trial but unless someone knows of one he could do with no measurable tumor I think that is out for now. So reintroduction with IPI it is. We feel pretty good about that since he was so lucky to have been a total responder before. She wants another PET/brain MRI to have a baseline before starting. Don would almost rather not have the tests until after IPI completed. Of coarse first we have to get the a-ok from insurance company…which is a whole other incredible thought that his life is sort of in their hands. Or at least it feels that way sometimes. Feeling grateful for NED status once again…just wanting to stay that way for a while as we all do.
As for this journey we are all navigating …it all seems so surreal sometimes. I think about everyone so often & am thankful for the wisdom shared. Take care all, KarenJuly 31, 2013 at 12:29 pm #62016Catherine PooleKeymaster
Sounds good, especially the NED part. Pretty soon (hopefully) these drugs like Pd1 will be approved and it won’t require you having disease. Crazy but necessary rules for clinical trials. I agree the insurance industry is a bit out of control on how they say yea or nea to tests etc. I think reinduction of IPI is a good strategy for now and I hope the scans turn out great.August 1, 2013 at 2:56 pm #62017BNP68Participant Hey Karen,
Congratulations on the NED status again. That is fantastic!
Since you titled your thread “Any thoughts…” I will give you one just to think about. After my surgery a couple months ago I was also in a Stage IV NED status and did quite a bit of research on clinical trials. I narrowed my search down to two trials. One was a vaccine trial at UVA (NCT01585350) and the other was a vaccine trial at Moffitt (NCT01437605). I eventually decided on the Moffitt trial but unfortunately had a recurrence before I could start the trial. The trial is a MAGE Vaccine trial. The patient’s melanoma must have the MAGE trait in order to qualify (about 60% chance). The trial basically consist of a shot every 3 weeks for the first 3 months and after that 1 shot every 3 months for about 2 more years. I talked to a patient in the trial and the side effects were pretty mild (slight flu like symptoms for about 24 hours after the injection). One reason I was optimistic about the trial is that of about 12 patients in the trial as of about a month ago only 2 have had a recurrence. Granted the trial hasn’t been going on for a great deal of time but I still thought that was pretty impressive results. Dr. Weber who has been doing the trial has quite frankly been very pleasantly surprised at how well the trial is doing.
I think for you it is definitely something to consider. Since you know you are a IPI responder you can keep that in your back pocket. You never know which treatment may be your silverbullet in your fight against melanoma which is why I plan to try and many as it takes until I find my “cure”.
Best of luck to you. Enjoy your NED status!
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