-Cheryl- Posted December 7, 2004 Share Posted December 7, 2004 Hello All, I completed the trial today at Mary Crowley's Research Center. I am the only one left in the study. Others dropped out due to progression of disease or health problems. I don't know if that is a good thing. I was hoping for NED and only achieved stable. I am, on the contrary, quite grateful for that. No serious problems with the paclitaxel/carboplatin, except grade II neuropathy in my feet and low blood counts. Extra chemo has not proved to be beneficial, and could cause more harm than good. Next week, they will test my blood for 4 proteins to see if I am a candidate for the Epimmune trial. The proteins, called HLA-A2 bond with molecules in your DNA to kick up your own body's immune response to target the cancer. Now, there have been complete responses, but usually it just extends survival by a signifigant amount of time. There are other immune therapies on the horizon, which I can do in the future, but this will keep me alive to try them hopefully. There should be no side effects to it. I get one shot a month over 6 months. Only 40 % of the population are born with the HLA-A2 proteins to participate. Many will be tested. I recommend others on this board testing their blood to see if they are carriers to participate. Everybody carries at least one protein. No chemo side effects, missed work, hair loss, or neuropathy! I had a arnesp shot today due to low blood counts, but feel good considering. Take Care, Cheryl Quote Link to comment Share on other sites More sharing options...
Wendy Posted December 8, 2004 Share Posted December 8, 2004 Cheryl, Being the last one in the trial I would consider a blessing - must mean that your body is determined to fight this thing. I will be praying that you be a responder to the proteins. Good to hear that the aranesp shot was started. I had them every two weeks during my chemo and it made me feel so much better and not so run down. Wendy Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 8, 2004 Share Posted December 8, 2004 Congrats on completing the trial, Cheryl, and I wish for you that the new trial is one you can enter and also complete, with good results. Don Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 8, 2004 Share Posted December 8, 2004 I like Wendy's response and I feel the same way. I love that you are encouraged by this protein stuff and that you are a scrapper! I just love that about you, Cheryl. You do whatever it takes! That is what is making this a success for you. Love always, Cindi o'h Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 8, 2004 Share Posted December 8, 2004 Great news Cheryl. Will be watching you to see how things go with the new trial. You have such a wonderful attitude and a positive outlook. Thanks for sharing your experiences with us. Keep us posted. Hugs, sue Quote Link to comment Share on other sites More sharing options...
mayos Posted December 8, 2004 Share Posted December 8, 2004 Hello Cheryl.....Your strength is obvious and will take you far into trials and treatments. Living in Texas is also a plus when considering clinical trials.....there are so many well-known advanced cancer centers in your area. Keep up the good fight. Your odyssey gives the rest of us hope in continuing on with our own battles. Thanks.... Quote Link to comment Share on other sites More sharing options...
Nushka Posted December 8, 2004 Share Posted December 8, 2004 Cheryl, Stable is a really good thing. Congratulations on that and sticking with the trial. Now for the next step. I hope the proteins match up and that you get excellent results with this new trial. I really admire your attitude and to still be working is amazing to me. I hope you feel better soon (low blood counts) and get started with the new trial quickly. Nina Quote Link to comment Share on other sites More sharing options...
ken f. Posted December 8, 2004 Share Posted December 8, 2004 hi cheryl, that's one way to end a study! thanks for noting the Epimmune trial. i will ask about that. here's hoping and praying that vast benefit falls to you from it. love, ken Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 8, 2004 Share Posted December 8, 2004 Cheryl, It is wonderful that you were strong enough and your lc was well behaved enough to stay the course of this trial. Here's hoping that you qualify for the next step on this journey. Quote Link to comment Share on other sites More sharing options...
kimmek Posted December 8, 2004 Share Posted December 8, 2004 Cheryl: This is good news. Stable allows you to keep looking for that "perfect treatment". It must say something too that you were the only one left in the trial, what did the docs say about that? You are one heck of a fighter and determined lady, dont let anyone try to take that from you!! It will carry you far. Love, Kim Quote Link to comment Share on other sites More sharing options...
stand4hope Posted December 8, 2004 Share Posted December 8, 2004 Cheryl, Congratulations on stable and for finishing the trial! You are quite a fighter! Prayers for success for the next one as well! Love, Peggy Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 8, 2004 Share Posted December 8, 2004 Cheryl -- this sounds to me like one of those times when it's great to be last! The first time I met the wonderful Radiation Oncologist I see, he reminded me of all the people who came before me with this disease, and how their disease and treatments paved the way for us now, and how we will be doing the same for those who come after us. You are a true pioneer in that you are doing these things for your own survival, but are also providing valuable information so that someone else can benefit in the future. To paraphrase something Maya Angelou says: We can't say "I am" without first saying "They were." Di Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted December 8, 2004 Share Posted December 8, 2004 Cheryl, congratulations on being more of a survivor than ANYONE on reality TV. I hope you'll have those proteins that qualify you for the Epimmune trial, and that you'll have the best possible (complete!) response to that one, too. You're an inspiration. Go, Cheryl, go! BeckyCW Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 8, 2004 Share Posted December 8, 2004 Cheryl, That is so good, first of the class, the only one to graduate. Stable is only a step from NED. Wishing all the tests are good for the Epimmune trial. Hugs J.C. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 8, 2004 Share Posted December 8, 2004 WOW Cheryl. Congratulations. You are a tough cookie. I think you are going to kick butt on the next drug, too. Margaret Quote Link to comment Share on other sites More sharing options...
elnodel Posted December 9, 2004 Share Posted December 9, 2004 Good for you, Cheryl. Finishing off the trial and remaining stable, all good things. I'm keeping everything crossed for matching proteins. You certainly are a great example to the rest of us, with your positive attitude and fighting spirit. Ellen Quote Link to comment Share on other sites More sharing options...
paddy Posted December 9, 2004 Share Posted December 9, 2004 Congratulations on doing so well on the old trial and Good Luck with the new one. Will be keeping thoughtss for you Cheryl. Paddy Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 9, 2004 Share Posted December 9, 2004 Congratulations, Cheryl, on achieving stable with this trial. Good luck, dear girl, on the epimmune study. I hope you have all the "right stuff".... XOXOXOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
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