Marci Posted October 3, 2008 Share Posted October 3, 2008 Hi All, I have noticed alot of people on this site that take Tarceva. I had inquired with my mom's Oncologist and he knocked it down right away saying that studies show that only Asian descent women had benefited from this and that he didn't recommend it. I feel very frustrated b/c I see others who are not of that ethnicity group on this drug and I feel like he may not be aware of how many others are on this. I noticed on Ned's and Sandra's posts that they have or will be taking it. Just frustrated that he may not be aware as a professional of what is working for others. Any advice or comments? Marci Quote Link to comment Share on other sites More sharing options...
Patti B Posted October 3, 2008 Share Posted October 3, 2008 Marci- I have been on Tarceva for about 6 weeks now. What your doctor is talking about is that STATISTICALLY it works best in Asian never-smoking women. Apparently that was a statistic they came up with during trials. I know of no oncologists, though, who actually base whether they put someone on Tarceva or not with those statistics. There are MANY non-Asian women and a lot of men who take Tarceva and it has been the magic bullet for them. We have one member here who went from Stage 4 to NED on Tarceva. Maybe its time for a second opinion???????????????? Keep us posted. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Marci Posted October 3, 2008 Author Share Posted October 3, 2008 Patti, Thank you, yeah I think it is time for a 2nd opinion. He knocks down everything that we researched even Radio Frequency Ablation. I cannot believe someone went from 4 to NED. Thank is wonderful!!! Hope these days find you feeling well and happy! Marci Quote Link to comment Share on other sites More sharing options...
Andrea Posted October 3, 2008 Share Posted October 3, 2008 I agree to go for the second opinion Also I believe it depends on what type of LC you have. Tarceva has proven to be more beneficial for certain types of LC, like I know it is a main treatment in BAC, but with other types of LC chemo is used before Tarceva. Quote Link to comment Share on other sites More sharing options...
JB Posted October 3, 2008 Share Posted October 3, 2008 Col did chemo before tarceva, but has been on tarceva and stable for over a year now. I think the stats are actually for 3 categories, women, non-smoker, and Asians...As in if you any one of thsoe three it will work a little better, but who cares.. It can work for anyone, and if you feel it's an option, argue for it, and make the doctor argue his or her position, they may have a legitimat reason and explanation, or they may just not like you telling them what to try. 2nd opinion is always a good idea. Quote Link to comment Share on other sites More sharing options...
cat127 Posted October 3, 2008 Share Posted October 3, 2008 Well first it is different for non-smoking Asian women, not one of those three groups but someone who fits that description. Clinical trials showed that there was a significantly greater likelihood that a non-smoking Asian woman would have a strong response to Tarceva. However it didn't show that they are the only ones that will respond. But in addition to the subset of patients (about 10-15%) who have a strong response, ie the tumor measurably shrinks due to tarceva, there is a larger subset of patients that will have stable disease for a significant period of time and a noticeable increase in survival. So while we all want to hear significant response/shrinkage, we also LOVE the sound of stable disease. I do think on average, the results with stable disease have been in the 3-6 months range. But when trying any of these drugs, you aren't doing it in hopes of being the average, you are aiming to be in the right hand of the bell curve, to be the person who is stable for 5 yrs, not 5 months. My sister smoked and did so heavily for 40+ yrs. And obviously she is a female but as she told the Dr., she isn't an Asian non-smoker unless there was something our mother never told us. And she has been on Tarceva for about 8 months and each scan shows the size of the tumor about the same, but the activity is less and less each time. SHe's had a tough time with the toxicity, but she's also had a very nice response. All this is to say - your dr is wrong here. I don't think this is one of those things where there is room for different opinions. If it were so that only non-smoking Asian women responded, then the FDA would label the drug for the indication of treating only that group of patients. It just isn't true, it is just that the odds are way better for a strong response in that subset of patients. This board alone is proof of how people in different subsets can still benefit from Tarceva. Quote Link to comment Share on other sites More sharing options...
Muriel Posted October 3, 2008 Share Posted October 3, 2008 In my opinion, you need more than just a second opinion. I think you need a new oncologist. Muriel Quote Link to comment Share on other sites More sharing options...
KaytieP Posted October 3, 2008 Share Posted October 3, 2008 Marci - From your timeline, it looks like your mom is on Carbo/Gemzar, and has only had two treatments so far. The onc may just want to wait and see how it works, as usually 4-6 rounds of chemo are given, with scans in the middle to see how things are going. Tarceva isn't given with chemos (outside of a clinical trial), so that wouldn't be an option for her right now. Also, it it is a second line drug. My mom (not Asian) is a never-smoker, and she was given Carbo/Gemzar to start. I could see why Tarceva would be kept for later, as generally it is more tolerable, and easier on patients who have been on treatments for a while. Also, it is sometimes used as maintenance for peopel who have been stabilized on traditional chemo. Despite that, a second opinion would certainly be a good idea. Her current treatment may turn out great, but (from personal experience) it is a lot less stressful getting a second opinion if you are not in "we must do something RIGHT NOW" mode. Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 3, 2008 Share Posted October 3, 2008 Marci, I agree that your mom needs another opinion and most likely another oncologist. As others have pointed out, her current doctor has a very distorted view of the evidence and does not appear ready to learn. Tarceva has proved effective for many people in addition to the "ideal" group of Asian women who have never smoked. I'd like to emphasize this point from cat127: ...in addition to the subset of patients (about 10-15%) who have a strong response, ie the tumor measurably shrinks due to tarceva, there is a larger subset of patients that will have stable disease for a significant period of time and a noticeable increase in survival. This describes me. I've been on Tarceva 12 months so far, and my tumor has not shrunk, therefore by definition I have not responded to it. But what was left of my pleural effusion has continued to resolve, and by every other measure I'm in better condition than I was a year ago. Even if the new 4mm nodule that we're now watching becomes worrisome and I have to switch to something else, the Tarceva will have given me at least a year of quality life free of major side effects, and at my age a year is nothing to be sneezed at! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Marci Posted October 3, 2008 Author Share Posted October 3, 2008 Hi All, How thankful I am to have all of you here, although I would have chosen a healthier reason as to why we are all here together. I do agree for a 2nd opinion and yes my mom is currently on the gemzar/carbo cocktail right now but I always try to think ahead for the next game plan sort of like a real nasty game of chess before your opponent jumps you. I feel as if I have had to educate myself through this process without any help from her oncologist. I am not angry that he may not want to do something right now but to know that he is not aware of all this is what makes me angry. My mom always cringes at thought of having to go and start over with someone new , the energy that drains from her just thinking of preparing to go is overwhelming. I am sure you all know what I mean. What takes a healthy person to get ready and dread going to appointment after appointment is 50 times harder for her and others with this disease debilatating her day in and day out. Again, thanks guys for all your support and advice I don't know how I would have managed so far without any of you. Hope life finds you well these days. Marci Quote Link to comment Share on other sites More sharing options...
RandyW Posted October 3, 2008 Share Posted October 3, 2008 Maybe he needs top do some fact checking I believe that ws the case for irresa and that has something to do with thte smoking asian women!!! at leas that is what I was told when Deb was taken off Iressa!!!! Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 3, 2008 Share Posted October 3, 2008 Marci, one more thing. If you're not already a member, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. I use the site and Q&A with Dr. West something like a second opinion in advance, so when I go in to see my own oncologist I'm well prepared to discuss my situation and any treatment changes that may be indicated. That appears to be your intent as well. Of course my onc respects my input and allows me to be a partner in my own treatment, and if he didn't he wouldn't be my onc. But I know what you mean about the energy needed to just think of making a switch. Depending on how the clinic or center your mom uses is set up, it might not be that difficult to change doctors. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Wendy Posted October 3, 2008 Share Posted October 3, 2008 I am another long term survivor with Tarceva for 2yrs 9 months. I was also on Iressa for 9 months before I took Tarceva. I am a woman, caucasian, limited smoker (8 years in my 20) diagnosed at 39. I was Stage IIIa after surgery where they removed my left lung and 21 Positive lymph modes - in other words a "sick puppy" cancer wise but heather if you forget about the cancer. Definetly seek another opinion on the Tarceva One thing I might also suggest is to ask the current oncologist if the reason is only because of the ethnic group. I wonder if any of the docs decision could be related to the abdomin/bowel issues that your mom has suffered recently. Unfortunately Tarceva can be tough on the bowels/abdomin. Just a thought. Keep pushing for answers, Tarceva has done wonders for many of us. Wendy Quote Link to comment Share on other sites More sharing options...
Yorktown Linda Posted October 4, 2008 Share Posted October 4, 2008 Marci, I have an excellent oncologist in Mount Kisco. PM me if you want the info. Linda Quote Link to comment Share on other sites More sharing options...
cat127 Posted October 4, 2008 Share Posted October 4, 2008 Wendy makes a good point. I guess I jumped to the conclusion that the dr didn't agree with tarceva due to the patient subset. If that is true, he is wrong. But he could have other reasons why he thinks for your mother, it is not a good fit. So best to find out exactly why. And while I do understand how tough it is to seek out another dr, how emotionally draining. I also have to say there is something so very comforting in finding the right fit. My sister really loves her dr. We think he is a kind and compassionate man, but a very good dr who is totally up on all the latest news, willing to listen to our input and letting my sister dictate how aggressive he should be. The right fit of Dr:patient is a tremendous help during a really horrible journey. Best of luck to you and your mother! Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted October 4, 2008 Share Posted October 4, 2008 Marci, I have had success with Tarceva for over 3 1/2 years. I am a woman but not Asian and I was a former smoker. I was originally diagnosed Stage IIIB NSCLC God Bless, Jamie Quote Link to comment Share on other sites More sharing options...
Janet B Posted October 4, 2008 Share Posted October 4, 2008 Marci I have been on Tarceva for 19 months - I was diagnosed at stage 4 and am now considered NED - with just scar tissue remaining. I am a Caucasian woman - I never smoked. My first oncologist also would not consider Tarceva - I went for a second and third opinion who both agreed it was the treatment for me. Thank God for second opinions! Tarceva does not work for everybody - but to discount it just because your mother is not Asian is wrong. Prayers being said for you Janet Quote Link to comment Share on other sites More sharing options...
SandraL Posted October 6, 2008 Share Posted October 6, 2008 Hi Marci. I see you have received lots of good information here. We are smarter than the docs! I just started Tarceva last Thursday. I am sure you are following up on it as an option. I wish you success with that or whatever other options are available. Sandra Quote Link to comment Share on other sites More sharing options...
Marci Posted October 7, 2008 Author Share Posted October 7, 2008 Hi Everyone, Wow, thank you so much for sharing with me. Yes, another opinion is what is needed I think in this. We are going to Chemo on Wed. 10/8 and I will speak to him on this again for his recommendation on it. I also spoke to my mom and although sometimes I am her voice when she is weak she too most importantly make him aware of her needs/requests for treatments. I guess I am just her funnel of information since she is to down to research herself. I just want her to be informed because to me it seems informed patients have a longer survival time and more quality of life than those who are less fortunate to have access or have someone to keep up looking for things out there. Again, thank you from the bottom of my heart. I will keep u guys updated after the trip to drs tomorrow. Best to you all and hope you are all doing ok. Marci Quote Link to comment Share on other sites More sharing options...
Marci Posted October 10, 2008 Author Share Posted October 10, 2008 Thank you to those of you who replied after my last message. I showed my mom the replies and she had such a feeling of hope after that. Thank you for giving her that. Marci Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.