- November 15, 2017 at 10:07 pm
I haven't been on the site in ages. I just haven't had the time with two jobs. I wanted to update you all that I started the trial for Pembro (Keytruda) back on Halloween in 2012 and I came off of the trial back in January 2017. I had a great response and am totally healthy. So lucky!
So I just wanted to check in and say hello and give a great update.
All the best, Laurie
sister of patientParticipant
- November 16, 2017 at 4:23 pm
Hi Laurie – I love these "anniversary posts" – it's so important to let people know. When I first came on here, in "blackest" times, I'd find success stories to read for myself and my sister – your was one of the very first I ever read. It helped tremendously!!!! Thank you and wishiing you the best, always!!
- November 16, 2017 at 5:26 pm
Holy wow you spent a long time on Keytruda! Awesome repsonse though! No lingering joint pain, rash, thyroid issues? Nada? You're a doctor's textbook case dream! : ) Congrats!
- November 17, 2017 at 1:41 am
Excellent questions Niki!
No more joint pain. I do still have the rash on the neck of my neck. It's come back with the cold weather like it has every winter since starting Keytruda. And I never had thyroid issues.
They still scan me and check my bloods every three months. And my bloods and scans are totally normal. And now that I'm off treatment, it's easier to forget that I was ever in deep trouble.
But of course I don't really forget. I help people every day with my story. I work as a surgical coordinator for breast cancer patients. So I am able to get those that are really scared, through this process.
And to your final note….yes, when I go into a Dermatologist's office….all the doctors and residents and nurses look at me like I'm a celebrity. They call me a celebrity for the fact that I was on Keytruda for so long.
All the best, Laurie
- November 21, 2017 at 9:41 pm
For me, the joint pain didn't start until after a couple years on Keytruda. And I never took anything for it.
And I was the one who decided it was time for a break. Nikki had asked the same question and I answered below.
I wish you amazing success and no pain. All light no stress….if possible.
Happy Thanksgiving! Laurie
- November 17, 2017 at 4:40 pm
Being off treatment is a pretty sweet feeling… super nerve wracking… but, you're right, it does make it a bit easier to push off the "wow was I a MESS!" memories. I started Keytruda a solid 2 years (early Nov) after you, and "began my break" (it's now a permanent break… HA!) in July 2016. Scans and blood still looking good! CT's have been pushed to 4 month intervals, and brain MRI's just went from 2 to 3 months between. My brain tried much harder to kill me than my body did. 🙂 I've been on arthritis meds since Nov 2016. I'm a little weary of going off of them, as they helped an old hockey injury that I had long before melanoma! HA! It would be nice to see if the other joints have stepped back in line now though. That's really my only lingering issue, other than the dead thyroid and some very typical surgical resection patchwork.
One more question if it's not too personal…… How did you and your docs come about deciding that "we're done with infusions" ?
- November 21, 2017 at 9:38 pm
I ended up deciding that I wanted the break. I had looked at the data. And now that Pembro has been approved and is commercially available as Keytruda…that changed things a bit. And with that approval, they were thinking that once the melanoma disappeared and there was no evidence of disease, that patients were okay to come off the drug after 6 months of no disease. So I started wondering why I was still on it then…if everyone else was able to come off. I had been fine and no evidence of disease for 3 years. So I really started worrying about how much is too much and what about side effects that can become irreversable. It started to consume me…the worry that I really felt it was time for a break. And I am thrilled with my decision. 🙂
If it comes back, then I go on Keytruda commercially this time, instead of on the trial.
Congrats to you for doing so well. And my joint pain is mostly all gone since coming off the drug. So maybe it could be the same for you too.
Happy Thanksgiving! I know we are two thankful people. 🙂 Laurie
- November 22, 2017 at 6:06 am
to the question, in my wifes's case (she was also in hte phase 1 trials at UCSF). After 50+ treatments and 2 1/2 years of no change to the scans (every 3 months). They just kinda decided she was done, that whatever they were seeing was probably just scar tissue and she could just stop.
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