› Forums › Cutaneous Melanoma Community › 22 month NEDaversay and misc
- This topic has 2 replies, 2 voices, and was last updated 4 years, 8 months ago by
Casitas1.
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- August 15, 2019 at 7:20 pm
Hi, Haven’t posted a lot lately but I monitor the forum frequently. Sometimes I just don’t know what to say that can help more than the family here has already provided. I’m always wishing the best for everyone, all of the time. I completed Keytruda infusion #27 along with CT’s of neck and of abdomen / Pelvis etc. yesterday and also tossed in ultrasound of thyroid for good measure. Got my results today and I am still NED after 22 months. This is also the 2 year anniversary of going to Stage 4.My doctors at MSK have been encouraging me to stop treatment since the end of January 2018 ( 18 months ago) because I had a very fast, complete response.In 2019 I did begin stretching out the Keytruda treatments from every three weeks, then four, six and now every 12 weeks. The Plan was to stop treatments at the two year mark. I realize a great deal of discussion has gone on regarding when to stop treatment. The melanoma doctors at MSK published a paper in June for the 2019 ASCO meeting, “Responders to anti-PD1 therapy: Long-term outcomes and responses to retreatment in melanoma (mel). 2019 ASCO. Warner, Palmer, Shoushtari, …Wolchok, Postow, et al. J Clin Oncol 37, 2019.”. You can find the paper and Celeste’s discussion of the paper on her site. To summarize the initial responders who later progressed had very low success rate when they were retreated which somewhat makes me question why I would want to stop. Celeste also noted that the people who progressed also weren’t on anti PD1 therapy very long . So I did discuss the paper with my oncologist this morning and my oncologist did note the short period time people were on the drug before going off, my CR , and it was stated that they are rethinking the amount of time we should stay on anti pd1 drugs before stopping because of response. Noting most clinical trials are between 1 and 2 years.
In previous discussions they have informed me that the half life of the drug is ~ 3 weeks but the anti pd1 molecule stays on the targeted receptor for over 3 months. So for now, I’m going to stay on a three month cycle. Look at Ed, he’s been on for over 5 years, Celeste was treated for 2.5 years.
Thanks again to everyone on the site for providing support to everyone!!!! but especially to Celeste and Ed. I do miss Jannner’s pathology report analyses and do hope she will come back and participate again.
To highlight The month of August I came down with shingles at the beginning of August. It was noted to me that it wasn’t related to my treatment. Made it all better.
Bill
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- August 16, 2019 at 12:33 am
Hey Bill!! Happy 22 month NEDaversary!! Toddlers are my fav people!! Hee hee!! Yes, when to stop immunotherapy is complicated and we have no absolutes, though I think we are gaining more clarity as we go along. Just to be clear, Jeffrey Weber who ran my trial (which took place very much in the “DARK AGES” of melanoma therapy – BEFORE any targeted therapy, ipi or the anti-PD-1 products were FDA approved as they are today!!!) told us at the time that he felt we had been treated “too long” noting that a certain amount of the drug will either help you (or not) and to take more than that will only put you at risk of side effects and offer no additional benefit. However, that is all easier said than acted upon – esp for folks who are not rendered completely NED – and the beneficial “amount” remains ill defined. I was happy to come off treatment and did not petition for additional therapy, though there were those in my trial who wanted to continue – but no matter what any of us wanted – BMS did not allow it. So it is a conundrum that we each have to navigate as we think is best for us. I am glad that you have settled on a plan for your care!Sorry about the shingles. Glad it wasn’t treatment related, but I’m not sure that made it better!! HA! Hope you are feeling much better now!!
Thanks for the shout out. But, it takes a village. c
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Tagged: cutaneous melanoma
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