BridgetO Posted July 10, 2021 Share Posted July 10, 2021 Wonderful pics, thanks! I'd be willing to bet your hair doesn't come back in quite as it was. You may be in for a surprise! Link to comment Share on other sites More sharing options...
LexieCat Posted July 12, 2021 Author Share Posted July 12, 2021 Appreciate the thought, Bridget, but I seriously want it to come back as it was. I got more compliments on the gray hair than I ever got with the (colored) red. FWIW, most of the sites I've read say any changes in color/texture are usually temporary. Also, I think most people are on chemo for a much longer period of time before re-growth begins. I was on this course of chemo for only a week, and my last infusion of the chemo drugs was a month ago. Supposedly part of the reason for changes in color/texture is how long the hair follicles are out of commission. So we shall see--if this trial works, I'd be fine with being bald for the rest of my life. Link to comment Share on other sites More sharing options...
Good Bro Posted July 12, 2021 Share Posted July 12, 2021 Hey there Lex, just out of curiosity, do you know which drug caused you to lose your hair? My brother just started his triplet treatment for his mNSCLC and the docs told him that he would NOT lose his hair this time. "This time" meaning, he did lose his hair 35 years ago when he had chemo for his Hogkins. Hope your hair comes back exactly how you liked it but most importantly, really hoping the trial works for you. Link to comment Share on other sites More sharing options...
LexieCat Posted July 12, 2021 Author Share Posted July 12, 2021 4 hours ago, Good Bro said: Hey there Lex, just out of curiosity, do you know which drug caused you to lose your hair? Cyclophosphamide and fludarabine were the two drugs. To my knowledge they are NOT prescribed for treatment of NSCLC, but rather to deplete the lymphocytes in the immune system--essentially, to knock it out in preparation for infusion with the newly grown tumor-infiltrating lymphocytes. I had no hair loss at all from the triplet. Link to comment Share on other sites More sharing options...
BridgetO Posted July 12, 2021 Share Posted July 12, 2021 My hair came back the same color but much curlier. Over the years (almost 10) it has gone back almost to its pre-chemo curl level. From the pics you've posted, your gray hair is really flattering--I see why you'd want it back. Link to comment Share on other sites More sharing options...
Judy M2 Posted July 13, 2021 Share Posted July 13, 2021 Great pics and documentation of your trial experience, @LexieCat. Glad you're coming back nicely. FWIW, my hair grew back coarse and very curly after chemo and is about 5 different colors, including gray. But since I keep it short now, I no longer have use for my blow dryer and curling iron! Hope you get the hair you want. Link to comment Share on other sites More sharing options...
LexieCat Posted July 13, 2021 Author Share Posted July 13, 2021 So this press release from Iovance on June 29 is pretty encouraging: https://ir.iovance.com/news-releases/news-release-details/iovance-biotherapeutics-announces-clinical-data-ln-145-non-small. Among other things, the release notes it had "just dosed the first patient" for the IOV-LUN-202 trial--the one I'm in. So I'm either the first or among the first in this trial, which they are relying on to support FDA registration. Link to comment Share on other sites More sharing options...
LouT Posted July 13, 2021 Share Posted July 13, 2021 Lexie, I'm glad to hear you are doing well. I look forward to hearing good news in the future. Lou Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 14, 2021 Share Posted July 14, 2021 Well the most encouraging news here is that oncogene driven cancers post TKI therapies were included. Hope for mutants after the pill. The same size is relatively small so hopefully they will learn more about those who had responded to the trial. It takes someone with a lot of guts, strong willed to want to sign up for this trial- hoping future enrollment can continue to expand! Link to comment Share on other sites More sharing options...
LexieCat Posted July 14, 2021 Author Share Posted July 14, 2021 Just saw the doc running the study. Just a checkup--I had labs drawn, but not till after the doctor visit, so I gotta wait for results. He DID confirm I'm the first patient in this trial, which is kinda cool. I asked him about the first scan in a couple of weeks and he said not to get too hung up on the scan--that the first one doesn't really tell you much. I had to get jabbed in both arms for the labs today and repeated my rant about not using the port. The nurse and phlebotomists (I wound up going through three phlebotomists today) were all cringing. Link to comment Share on other sites More sharing options...
BridgetO Posted July 14, 2021 Share Posted July 14, 2021 You are a pioneer for sure! It's the pits, though, that they won't use your port for blood draws. Link to comment Share on other sites More sharing options...
TJM Posted July 15, 2021 Share Posted July 15, 2021 Hey Rock star. Maybe a new string is in order. Post trial experiences? BTW...those pictures of petica brought back memories of my sons battle. First clue we saw was petica. Your doing great it sounds like! Peace Tom PS: Do you give autographs? 😁 Link to comment Share on other sites More sharing options...
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