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March 18, 2014 at 5:39 am #21876msue5Participant
I have been in Florida for a week now and missed a big snowstorm yesterday! I left for the drive here 15 minutes after my appt to go over scan results. I was praying I wouldn’t hear news that would cancel my trip. I finished Yervoy at the end of July and the December scan showed all tumors gone except there was a very active enlarged pelvic node. The scan on March 6th showed the pelvic node measuring 2.6 x2.0 cm with SUV of 16 unchanged from previous scan. I had an axillary node prior to Yervoy that had completely disappeared on Yervoy but showed on the scan at 0.7 cm with SUV of 2.2. I think my response to Yervoy is probably coming to an end but I had a good 8 months response. My Onc and I think repeating Yervoy is the next step but not quite yet. Nothing seems aggressive at this time and the axillary node was one I could feel so I will know when it enlarges. My only concern about repeating Yervoy is will I have the dramatic enlargement of neck nodes which were threatening my esophagus and airway? I had 20 radiation treatments that resolved it but if it happens again they can’t radiate this time. I would like to hear from anyone who has repeated Yervoy and whether they had the same reactions the 2nd time. I am not eligible for PD 1 due to Lupus but can probably have it after it is approved at my many Dr’s discretion. I would still like to hold off on Braf due to small tumor load and may need it later. Any thoughts? Looking forward to Safe from the Sun!
Mary SueMarch 18, 2014 at 12:18 pm #63838Catherine PooleKeymaster
I know that Jonathan had IPI as a reinduction and it worked pretty well for him. You might look back at his posts. I would think IPI and PD1 would be similar for lupus issues? I hope this is a choice for you. Enjoy Florida!! The weather here is still a mixed bag. Luckily we didn’t get much snow here but I am tired of the cold weather for sure. See you soon at the event!March 18, 2014 at 3:58 pm #63839msue5Participant The problem with Pd 1 is until it is approved I think they have to follow the guidelines and autoimmune disease would be excluded. When it is officially approved the dr’s can use it at their discretion. I know ..nobody can foresee what will happen but it was mentioned by BMS that my dramatic reaction of huge clusters of non melanoma neck nodes had never been reported and could have been caused by Lupus. BMS was very involved in my case as my Onc consulted them because I was the 1st Lupus patient that they were aware of. Is the rumor of approval in June still true? I have to say I am a little worried about reinduction but I will do it. My Yervoy experience was not easy due to neuro side effects and radiation and delaying doses due to needing Prednisone 100 mg with a very fast taper down. The fatigue was so bad there were days I could barely move. I was fortunate with no colitis and Yervoy was very successful. Only time will tell and being in FLA with my best friend of 35 years really help keeps me distracted which is great. Anyway my daughter is doing a great job with getting our team ready and we were able to raise the goal by double. Very excited to finally attend! My daughter has nothing but good things about Allison and you for your help with forming the team. Can’t wait till you meet our awesome family and friends.March 19, 2014 at 12:02 pm #63840PatWParticipant Wow, I can see your dilemma! It’s great that you responded so well to Yervoy, but that response almost killed you. Who knows what will happen the next time? The same would probably hold true for any checkpoint inhibitor. Tough call.
How about something that attacks melanoma cells directly without causing the tumors to swell? I’m thinking about the antibody-drug conjugate trials (ADCs) or clinical trials with the new IDO inhibitors ( see:
The fact that Yervoy worked for you and that you now have a very low tumor burden is great. And actually, you might do quite well on Yervoy reintroduction or on anti-PD1. But it would be nice to have a different approach to consider, too.
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