Jump to content

TracyD

Members
 View Profile  See their activity

  • Posts

    386

  • Joined

  • Last visited

 Content Type 

Posts posted by TracyD

    Stability again

    in MEMBER UPDATES

    Posted

    I just got my scan results today after eight weeks on this clinical trial and the results are "stable disease". For the first time in just over a year I have scans which show no growth, no spread, and some decrease in the pleural effusion. The cancer had been growing slowly and steadily for the past 13 months, and it has stopped dead in its tracks.

    Now comes the hard part of the trial, randomization. I will do another three cycles, six weeks, and then have scans again. If there is progression at any time the study will be unblinded, and, if I am getting the placebo, I will have the option of taking the drug again.

    This is going to be hard, as I will know in a few days, based on side effects, whether I'm getting the study drug or a placebo. If I'm getting the placebo I'm going to start to worry too much. At least it's only six weeks at the most.

    I am feeling good and living life to the fullest. Just ask my family, I think they have a hard time keeping up with me!!!

    Tracy

    Tarciva didn't work.

    in NSCLC GROUP

    Posted

    I was on alimta for four months last summer after avastin stopped working. I found it to be very tolerable and was able to live a very active life style. The infusion is very short, and other than being a bit tired at the end of the infusion day, I was good to go on day two. While I did not have any improvement, it did keep me stable for those four months.

    Good luck.

    Tracy

    Amazed to be Alive

    in MEMBER UPDATES

    Posted

    Hi Lilly,

    I'm so glad to hear from you, I think of you often and have been wondering what's going on. I'm sorry to hear that you've been through such a rough time, hopefully now the healing can begin.

    I'm praying for a speedy recovery for you.

    Tracy

    New Introduction

    in INTRODUCE YOURSELF!

    Posted

    Welcome!

    Two years ago this very month I was in your shoes, not feeling well and spending time at the docs trying to figure it out. It took a few months, but in the end it was adenocarcinoma, stage IIIb/IV. I know it feels a bit like an out of body experience right now, but I assure you that as you get more information, the feeling does go away.

    I would definitely recommend getting a second opinion, without it you will always wonder if you could have done something differently.

    It has been almost two years since my diagnosis and I am doing really well. There are many people who are living with this disease, as you will see.

    Please keep us posted on your progress and come here any time you need information, or just a pep talk.

    Good luck.

    Tracy

    new to boards

    in INTRODUCE YOURSELF!

    Posted

    Hi Colleen,

    I'm so glad you decided to check things out here for yourself. If I remember correctly you are currently on Tarceva??? Keep in mind I don't really remember anything anymore, it's all guesswork!

    Anyhow, welcome. I look forward to hearing more from you.

    Tracy

    Neutra Phos

    in GENERAL

    Posted

    Does anyone have any info or stories on this stuff? It was determined that my phosphorous is low so I am on this stuff four times a day. I was told that it is just a mineral supplement, however, it does come with side effects and I think I have all of them

    I googled it and found that what I am experiencing, kidney pain, SOB, fatigue, muscle weakness, and numbness and tingling in feet and hands, are all side effects of this stuff. I have told my nurse all about and I am waiting on results of labs to determine if my numbers are up. I have decided that I do not want to continue on this crap and I will make up for it in my diet somehow, but I am honestly feeling worse seven days after treatment then I ever did on chemo!

    Any personal stories and info would be much appreciated.

    Thanks,

    Tracy

    Enlisting in Clinical Trial

    in MEMBER UPDATES

    Posted

    Hi Rachel,

    Thank you and you go girl! I'm glad to hear that you've got a few options in the clinical trial area. I truly believe that the only we're going to change the stats on this beast is through new treaments, and the docs need us for that. In the end, if it doesn't work, what have we really lost? A couple months, maybe? But if it works ... oh if it works ... we might just get to grow old and see our children grow up.

    I know what you mean about the mental fight, I am battling that demon myself right now. In two years I have never been without hope, but for a couple days this past week I fell into a pretty dark place. I am happy to say that I have since bounced back, and I'm ready to fight.

    I know you are strong and a fighter, and that you too will rebound to fight again. Never stop fighting, right? As a wise person once said ..."Just keep on keepin' on"! :wink:

    Now put on those boxing gloves and get ready to kick some cancer!!!!!

    Tracy

    Results Are In

    in MEMBER UPDATES

    Posted

    Hi Aunt Kasey,

    I know I'm a little late to this party, but as I explained on the phone, I had been having some problems of my own and I just didn't know what to say.

    Now that I've had time to think, and to talk with you in person, I'm ready. I believe that this thing is going to turn out to be an artifact (whatever that is). However, if it's not, you and I are going to be kicking some cancer butt this spring.

    Love you, have a great night.

    BTW, it's almost 7 and I'm still feeling good. A little hyped up on steroids perhaps, but feeling good.

    Tracy

    Back on treatment

    in MEMBER UPDATES

    Posted

    Hi Suzie,

    I just loved the movie. Although, I think it had more to do with the fact that my daughter and I were snuggled together under a blanket and she kept hugging and kissing me and telling me she loved me.

    How is it that children just know when you need a hug?

    Tracy

    A little scared

    in LC SURVIVORS

    Posted

    Hi Lilly,

    I know what you mean about the fear, you would think that at some point we would be so used to living with fear that the fear would kind of take a back seat. Yet somehow it always manages to rear its ugly head.

    I have a good friend who is always reminding me that "it is what it is", and it's so true. Worry about what you know, not about what may be. At this point the cancer in you "is what it is", and worrying won't change that. Life is so precious we don't want to waste it with worrying about things out of our control. Hopefully they will find no other cancer and we can all head to the pub. And if they do find something, you are strong and you will deal with it then, and we all head to the pub.

    I'm praying that the surgery goes well and successfully with no surprises.

    Tracy

    Scan results

    in MEMBER UPDATES

    Posted

    You know, I just hate those mixed bags. You're up, you're down. Although I supposed its better than just being down, hmm?

    I have been on Avastin with carbo/taxol, and then Avastin alone. I found avastin to be very easy. No fatigue, aches or pains, just some intermittent nose bleeds which were bothersome, but certainly manageable.

    I was also on Alimta alone, and I found that fairly easy to tolerate. I was on it all last summer and I found that I had little to no fatigue, and that was it for side effects. I managed two vacations, two waterparks, two theme parks, and weekly trips to the ocean for some sun and fun. I'd say that my quality of life was quite good.

    As for Gemzar, I know nothing. I know that it is a possibility should I do another chemo. I have heard that it is mild, along the line of Alimta, but I have no personal experience.

    I'm sorry I can't be more help. It always amazes me the cocktail combinations doctors use, and it makes me wonder, should I have tried it? Can't waste time wondering what if.

    Good luck to you with this new treatment. I pray that it is easy on you and that is kicks some cancer butt.

    Tracy

    Back on treatment

    in MEMBER UPDATES

    Posted

    I got scan results today after four months off of treatment and the report says... signifiant interval progression. I had scans six weeks ago and much of the increase has occurred during that time.

    The primary tumor has doubled in size, and the pleural effusion has greatly increased. There are numberous nodules, and they all seem to be growing. My doctors comment...looks like it's time to get back on treatment.

    The new treatment is a phase 2 clinical trial with Selicicilib, a protein inhibitor. I was supposed to start today, but by the time I saw the doctor it was too late in the day, so I take the first pills tomorrow morning. The regimen calls for three pills, twice a day for three days, every two weeks. I'll get scans again in six weeks.

    This is a bit scary for me as this is the first time I have experienced any real symptoms. I have occasional SOB and the cough is back. They are all symptoms of the effusion and I am told that if it gets too uncomfortable they can drain it.

    We are trying to take this one day at a time. I picked up the kids from school just like I always do and I will enjoy our family movie night tonight, although I am saddened that it is no longer a movie with the whole family as the kids are growing up. Samantha is at a school dance and then to a friends house for a sleep over and Joe is at basketball practice with his teammates until 9. So that leaves me and Alex snuggling on the couch and watching Barbie as the Island Princess, seems like heaven to me.

    Tomorrow I will begin a new adventure in LC, perhaps it will be a long and wonderful ride.

    Tracy

    seliciclib

    in NSCLC GROUP

    Posted

    Has anyone been on this trial, or have any information on it? It's a phase IIb trial that I'm looking at. We're trying to plan our next move and we're thinking of this trial before trying another chemo.

    The doc has suggested that if we want to do a trial that it would be better to do it while I'm healthy, rather than waiting until I feel bad. This makes some sense to me.

    Any input would be appreciated.

    Tracy

    Could be worse

    in MEMBER UPDATES

    Posted

    I got scan results today. The bad news is that the cancer continues to grow, but the good news is that it's growing slowly and the doc says that we can hold off on treatment until after the new year if we want...which we do.

    The tumor is becoming more solid, but hasn't really grown. Various nodules have grown slightly, but no new ones. The only new thing is some slight effusion in the right side. Doc says that if it continues they can drain it, but at this point it's so little that they couldn't even do it.

    So...I'm feeling really good and still enjoying life to the fullest. Tomorrow night we are taking the kids to see the Transsiberian Orchestra, I hear it's an amazing show.

    I'll be posting later in the treatment section as we have been offered a few clinical trials should we decide not to go the chemo round next time around.

    Happy Thanksgiving Everyone!

    Tracy

    hi everybody

    in INTRODUCE YOURSELF!

    Posted

    Hi Christine,

    I was diagnosed at 39 years old with stage IV adenocarcinoma, that was almost two years ago. You'll find that there are a lot of young people with this disease. This is a wonderful place to come for support. I wish you all the best in your treatments.

    Tracy

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.

  I accept