Sandi721 Posted October 19, 2010 Share Posted October 19, 2010 Well here I am feeling like I have been run over by a truck, I went from finding a knot in my neck on Sept 23 to being diagnosed with NSCLC last Thursday, speaking with onocologist yesterday, getting a portcath tomorrow and trying to decide whether to participate in clinical trial or use conventional treatment. Am at least stage IIIb because was in lymph nodes. CT of abdomen and pelvis shows everything clear except a couple of small spots in liver. Having PET Scan Tuesday to confirm that, I have had cysts in liver for years. Actually had symptoms for months in the fatigue and slight shortness of breath,loss of appetite and weight loss but they found my b12 was extremely low and thyroid meds needed adjusting so was attributed to that. Even had a chest x ray in June which did not show any problem. Has anyone here been in the Clinical Trials, the two meds are the standard treatment Taxol, Carboplatin, and Avastin and the other one is Alimta and Carboplatin. Would get one of them just won't know which until right before I start which should be week after next. While I know this does not sound good, I am determined to fight this all the way. Quote Link to comment Share on other sites More sharing options...
Joppette Posted October 19, 2010 Share Posted October 19, 2010 Hi Sandi, It sounds like you have a positive attitude and that plays a huge part in recovery. Hang on tight to that, it really will help you. I was not in clinical trial, so can't give you advice there. But I did have Taxol and Carboplatin as my lovely cocktail. Just wanted to say hi, and welcome you to this place. None of us want to be here, but all of us are really glad there is a place like this to get and give support. Wishing you the best and looking forward to hearing more from you! Judy in MI Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 19, 2010 Share Posted October 19, 2010 Welcome Sandi I remember well how it felt to be newly diagnosed! I was not in a clinical trial. You can click below on my story and read about my journey. Please keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
ts Posted October 19, 2010 Share Posted October 19, 2010 Hi Sandi, Sorry to welcome you here. Have you had a biopsy? There is a saying, it's not cancer until it's proven to be cancer. Also, a biopsy should identify what type of NSCLC you have. Avastin is a no-no for squamous NCSLC, for instance. http://cancergrace.org/lung/2009/10/30/ ... -phase-ii/ For some straight poop on the medical side of things (and then some) you might be interested in www.cancergrace.org. The forums have been down the last two days, but thereis still a lot of information to be found. It looks like it is back up! Yay! Good luck making the decision - do you know what the best practice would be if you decide against the trial? Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted October 20, 2010 Author Share Posted October 20, 2010 Yeah I have had a biopsy so it is confirmed, I have NSCLC Adenocarcinoma in left lung. Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 20, 2010 Share Posted October 20, 2010 Hi, Sandi, welcome to the group. I've had both of those chemo combinations, and they're thought to be about equal in effectiveness. I guess the purpose of the trial is to narrow that down some. For most people, the Alimta/Carbo combination is somewhat easier to tolerate, but if you don't have a choice, we probably shouldn't dwell on that aspect. One good thing about clinical trials is that you'll be monitored very closely. I second ts's suggestion to check out cancergrace.org. You'll be impressed at the amount of reliable information that's freely shared. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fillise Posted October 21, 2010 Share Posted October 21, 2010 Welcome Sandi, Either of those chemo combinations would probably be fine. Looks like the trial is trying to determine which would be better as a first line treatment. If you did not respond to one you would still have the options of the other once you go off the trial. I don't see a down side as you will be getting treatments that have about the same level of effectiveness either way. You can ask the physicians at www.cancergrace.org. I cannot imagine having gone through this journey with my mom with out the support from the Lung Cancer Support Community (this message board) and GRACE. God bless you, Susan Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted October 21, 2010 Author Share Posted October 21, 2010 Thank you all that responded to my introduction. And for the input about the two different chemo treatments. I just had my port inserted yesterday so a bit sore today. I have just about decided definitely to go with the clinical trial as I will be getting one of the two treatments and like was said I will be monitored very carefully./ Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 21, 2010 Share Posted October 21, 2010 Sandi, welcome to the group no one wants to have to join. I'm also IIIb. I've been on treatment most of three years and am still doing well and considered otherwise healthy. I did carbo,taxol,avastin for six rounds then Alimta alone for 18 mos so agree with the others, either combo in the trial would be a good start. Keep us posted on how things go for you, o.k. Judy in KW Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted October 22, 2010 Share Posted October 22, 2010 Hi Sandi. I was stage II and had surgery, so mine was very different and I don't have a lot of help to offer. I just wanted to join everyone in welcoming you here. Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted October 27, 2010 Author Share Posted October 27, 2010 Hi all, just an update, had my pet scan yesterday, saw oncologist and got results today. Got mets in liver very small, and the original tumor in chest and lymph nodes in chest, brain is clear and thank you god so is the rest. So plan is to start in clinical research study, I will either get the Taxol/Carbo/Avastin or Alimta/Carbo, first treatment is Monday morning. He is also checking to see if I will benefit from Tarveca. I have done lots of research and been trying to keep positive thoughts and certainly lots of prayers and faith. I will get through this and all of you are such an inspiration, I have looked at your stories and journies and you have certainly hung in there and fought hard. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 28, 2010 Share Posted October 28, 2010 It all sounds very positive Sandi. Hang in there and keep us posted on your treatments. Judy in KW Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted November 2, 2010 Author Share Posted November 2, 2010 Good morning all, got to go back to the dr today to have blood drawn to make sure all my levels are ok to start chemo on Monday, seems like blood has to be drawn within 7 days of the chemo, guess I will learn all this as I go. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 2, 2010 Share Posted November 2, 2010 Yes, unfortunately you will. At MDA they were able to draw blood and analyze the same day as the chemo. Key West made me come in on Tue every week and then on Wednesday every three weeks. I felt like I lived there. Hang in and keep us posted. Judy in KW Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted November 4, 2010 Author Share Posted November 4, 2010 Hi all ok just learned I will be getting the Alimta/Carbo on a 21 day schedule. Man they took so much blood when I went in I wasn't sure they were gonna leave me any, lol. I also have to take another med that they are calling in for me the day before, the day of and the day after chemo. Quote Link to comment Share on other sites More sharing options...
fillise Posted November 10, 2010 Share Posted November 10, 2010 Sandi--good luck with the chemo. Let us know how it goes. Susan Quote Link to comment Share on other sites More sharing options...
eric byrne Posted November 10, 2010 Share Posted November 10, 2010 Hi Sandi, Just posting to wish you well on Monday,think of the chemo as an microscopic army of friends,coming to your aid,kicking the butts of any cancer cells encountered,leaving them stone dead,never to return.Hopefully your experience will mirror mine,in that I sailed through it all without incident,in fact I got to enjoy going to the chemo,mine lasted for nearly 12 hours per cycle,which actually whizzed past,with such lively conversations with other "inmates".There was always something going on to pass the time.I was careful in adhering to any instructions given to me by the medical staff eg,I was given a mouthwash to use to prevent mouth ulcers,I followed directions exactly,never suffered with ulcers etc.Looking forward to your post on Monday evening,confirming it was all a bit of a daudle,dont know what I was anxious about.(sorry about daudle checked with the oxford dictionary its not there,another one of the words in common use here,but its entirely Scottish,means without problem).Take care, bye for now. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted November 10, 2010 Share Posted November 10, 2010 Good luck, Sandi. I can identify with the blood taking sentiments. When they plug in that thing and just keep changing containers and taking more blood, I always fight the temptation to tell them to leave me a little. Let us know how it goes. Quote Link to comment Share on other sites More sharing options...
dianew Posted November 11, 2010 Share Posted November 11, 2010 Hi Sandi - I just want to say welcome and best of luck with the upcoming chemo. I had the same cocktail as a couple of others - Carbo/Taxol - but then joined a clinical trial after my treatment. Will keep you in my thoughts. Please keep us posted on how you are doing. Diane Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted November 15, 2010 Author Share Posted November 15, 2010 Hi all wanted to update, haven't been on for a few days. Had first treatment on Nov 8th, Nausea has been handled very well with the meds, appetite has been ok, managing to eat ok as long as I take my meds, coffee not great but I can certainly live without that. I think it was Thursday when I finally really came off the steroids and slept very well, think I even took a couple of naps. I work from home at night on the computer and phone and do consulting on an as needed basis so thankfully that is easily managed. Energy level is down but i expected that, biggest issue has been not being able to go to the bathroom, finally got past that yesterday, so I have certainly learned to take a stool softnerer next round. Go back to dr this afternoon to check labs. Hope all of you are doing well!! Quote Link to comment Share on other sites More sharing options...
dianew Posted November 16, 2010 Share Posted November 16, 2010 Sounds like you are doing really well and am glad the nausea is under control. I think having an "OK" appetite is about as good as it gets. I couldn't do the coffee either, and quit my first week. Haven't wanted to go back - figured it was one less "habit" I didn't need. It's great that you can work from home as that will sure make your life easier. As I remember, I got so I knew exactly what to expect each day after I'd had chemo, and so could schedule things pretty well for the days when I knew I'd be up to it. Diane Quote Link to comment Share on other sites More sharing options...
fillise Posted November 18, 2010 Share Posted November 18, 2010 Sandi, It sounds like you are doing really well. Chemo is never fun, but when you find out it is manageable, it becomes a lot less scary. Keep us posted. Susan Quote Link to comment Share on other sites More sharing options...
Van55 Posted November 18, 2010 Share Posted November 18, 2010 Sandi -- Welcome to the club no one in their right mind wants to join. I don't know how I missed your posts earlier, but I did. It sounds as if you may be participating in the same clinical trial that I am. The medical sponsor is US Oncology and they call the study "Point Break." This phase III study is to compare the efficacy of the standard of care treatment (Carboplatin + Taxol + Avastin) to the experimental treatment (Carboplatin + Alimta + Avastin). Whichever arm of the study you are randomly assigned to, you get four cycles of treatment on three week intervals followed by maintenance therapy -- in my case on Alimta and Avastin -- every three weeks indefinitely. I began my trail on May 26 and had a great response. I have had no progression of disease since. For me, the side effects have been quite manageable, with the worst being extreme fatigue. My white and red counts are knocked way down in the two weeks following chemo, but have rebounded to the point that I haven't missed a scheduled infusion. Best of luck to you and thanks for volunteering for the trial! My prayers are with you. Do I correctly assume that the biopsied tissue were sent for testing for the EGFR, ALK or K-RAS mutations? Quote Link to comment Share on other sites More sharing options...
Sandi721 Posted November 29, 2010 Author Share Posted November 29, 2010 Yes I am in the trial that is testing the Altima/Carbo vs Taxol/Carbo and I got the Altima. I am getting 4 rounds every 21 days like you said and then continue on the Altima. And yes am being test for EGFR, ALK or K-RAS mutations to see if Tarceva is a good second line for me. I didnt have any real problems with the first round, nausea was handled, had problems using the bathroom but this round will be taking a stool softener starting today to prepare for that, next round is tomorrow. My labs did drop so energy level dropped but that was expected. All in all think I did pretty well. Still have my hair, doctors have said I will lose it so expecting that anytime. But hey I can handle that too. Quote Link to comment Share on other sites More sharing options...
Joppette Posted November 29, 2010 Share Posted November 29, 2010 Good morning Sandi, Sounds like you are doing so good! Yes, stay on top of the constipation, it's very common. As for the Steroid "high", see if your doctor will give you Xanax or other like drug. I took that while still getting the infusion, and another when I got home, and it helped immensely when trying to go to sleep. As for the hair, my advice is when it starts to come out, just shave it and be done with it. I was on the computer one night, just playing with my hair, and a big clump of it came out. I went to the bathroom, and shaved my head clean. No more thinking about it. It was liberating for me because I was the one in control, not the chemo! Keep that positive attitude. That goes a long way in helping you heal from all of this. Judy in MI Quote Link to comment Share on other sites More sharing options...
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