CancerCompass message board discussion started by Diana Y on 7/13/2008 http://www.cancercompass.com/message-board/message/all,26027,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I started Tarceva in February this year and I have not spoken to anyone that has been on it for any long length of time. I'm wondering about the "side effects" later on? Does the hair grow back in a year?? Does the rash always come and go? Does Tarceva usually keep on "working" or does the body get used to the pill and stop "holiding off" the cancer at some point?Thanks!Diana Diana Y Sun, 13 Jul 2008 00:00:00 GMT Hi DianaMy father has been on Tarceva for about 2.5 years. His hair looks great  and he is only bothered by a rash every once in a while and only very slight. I do remember  his doctor telling him in the beginning that the rash is sometimes a sign that it is in your body working. I see a big difference in my dad as far as stamina and general well being. This medication for him has been terrific. Sterling Mon, 14 Jul 2008 00:00:00 GMT  On 7/14/2008 Sterling wrote:Hi DianaMy father has been on Tarceva for about 2.5 years. His hair looks great  and he is only bothered by a rash every once in a while and only very slight. I do remember  his doctor telling him in the beginning that the rash is sometimes a sign that it is in your body working. I see a big difference in my dad as far as stamina and general well being. This medication for him has been terrific.Sterling,Thank you SO much for the reply. That DOES make me feel better! Did he lose a lot of hair in the beginning? Thank you again, I appreciate it!Diana Diana Y Mon, 14 Jul 2008 00:00:00 GMT Oh also - do you know if he takes 150mg. a day? Diana Y Mon, 14 Jul 2008 00:00:00 GMT He takes150. He said he can see a difference in his condition when he's walking. He used to get out of breath at times and is not finding this to be a  problem so much anymore. He said his hair did grow in slowly so don't get discouraged. I have to say it did grow in beautifully though. Sterling Mon, 14 Jul 2008 00:00:00 GMT My boyfriend has been on Tarceva since December 2006 (so over 1 1/2 years).  He takes 150 mg/day.  He did not lose any hair.  He developed sores (like really bad, deep pimples) on his shins and forearms about a year into his treatment.  It is extraordinarily important to keep the sores clean and drained.  Once he let them go and they got real deep.  A month long anti-biodic treatment worked to heal them up.  But be careful not to touch your eyes as he did get several eye infections until he learned how to manage the sores. What he found was that the sores travelled along his hair follicle, something the doctor's didn't figure out. So he started plucking his hair around / in the sores.  This has helped and the sores are so small now, he can wear shorts and short sleeves and not feel like "a very sick person/leper."His Stage IV Metastatic lung cancer is gone.  Well, that's what the onoclogist believes.  He has had no reoccurance of the cancer and he is able to do all the biking, walking, and sailing he wants to.  So that's our experience!  Wish you well.  All I know is that Tarceva is a miracle drug and worth every penny.  Jenicol Mon, 14 Jul 2008 00:00:00 GMT Thank you for your message! That's great news and very encouraging! I'm glad to hear he's doing so well on the medication. I'm still a little unclear on "why" I have to take Tarceva all my life now (there is only a very small spot on my left lung and it may be scar tissue). But it is a miracle drug.Thanks again for your response and I wish you both well!Diana Diana Y Tue, 15 Jul 2008 00:00:00 GMT Try to think of the Tarceva as almost like a vitamin that you take everyday to keep the cancer at bay. Sterling Tue, 15 Jul 2008 00:00:00 GMT My mother, now 82 years old started taking Tarceva  in 11/2005, 2 1/2 years ago.  Before that she did radiation and chemo for her stage IIIB lung cancer.  Last month in June, the doctor decided to do another pet scan because her tumors never seem to change.  She gets x-rays and ct scans every 3 months.  The pet scan indicated that there was no active cancer in her body and what shows on the x-rays is scar tissue.  Her doctor decided to take her off the Tarceva.  She is taking no treatment at all.  She will still have to regular ct scans to make sure the cancer does not return, and if it does she will have to start taking it again.  She lost her hair in the beginning from the chemo, but it all grew back just as thick as ever.  Good luck and I hope you get to the point where you can take a treatment holiday too.Rosey Rosey Wed, 16 Jul 2008 00:00:00 GMT  On 7/16/2008 Rosey wrote:My mother, now 82 years old started taking Tarceva  in 11/2005, 2 1/2 years ago.  Before that she did radiation and chemo for her stage IIIB lung cancer.  Last month in June, the doctor decided to do another pet scan because her tumors never seem to change.  She gets x-rays and ct scans every 3 months.  The pet scan indicated that there was no active cancer in her body and what shows on the x-rays is scar tissue.  Her doctor decided to take her off the Tarceva.  She is taking no treatment at all.  She will still have to regular ct scans to make sure the cancer does not return, and if it does she will have to start taking it again.  She lost her hair in the beginning from the chemo, but it all grew back just as thick as ever.  Good luck and I hope you get to the point where you can take a treatment holiday too.RoseyThank you SO much for your information. It gives me hope that maybe one day I will not have to be on Tarceva. My doctor tells me he wants me ALWAYS on it, but I don't quite understand why.Good luck to your mom and I am so happy tohear she is doing so well!!Diana Diana Y Wed, 16 Jul 2008 00:00:00 GMT Hi Diana!  I don't want to be the negative one about Tarceva, but I thought you should hear the other side of it.  My dad took it for 1 year and 5 months.  He has stage IV Small Cell Lung Cancer.  He had a tumor in his brain that was removed and radiation for the 7 tumors on his spine.  The doctor prescribed Tarceva to treat the cancer in his right lung.  Tarceva was working great!  It shrunk the cancer down until the doctor said he was in partial remission (this was in February).  He took another PET scan in July.  The Tarceva stopped working for him and spread to his left lung and there is activity in his hip joint.   Not to discourage you, but just look out for symptoms just in case it stops working for you.  I think it just depends on each person and how they react to each drug.My dad never lost any hair from the Tarceva.  At the beginning he had a little rash on his chest, but it went away.  Good luck taking this drug!  I think it is a great alternative to chemo!  God Bless!Nicole Cancersux Thu, 17 Jul 2008 00:00:00 GMT You have had such great success, I have to ask did you change anything else...diet, exercise, etc. I have been on Tarceva for only 2.5 mths, and will not get PET scan results for another couple weeks...I've read so much about diet being important to cancer survival, just wanted to know your experience. mark mmellingr Fri, 18 Jul 2008 00:00:00 GMT While I certainly won't discount the importance of diet and exercise, for Rick, the five most important elements to his "cancer free" state after being diagnosed with Stage IV Metastatic Lung Cancer in April 2005 are as follows: 1.  Cut out the tumors - Your doctors will say that this is futile as when you have metastatic lung cancer, the tumors will always show up somewhere so why go through surgery.  Well, I'm here to state from experience that removing the cancerous tumors has been critical to Rick's survival.  We got rid of the disease in it's most potent form.  These surgeries are no fun, in particular the lung resection was brutal but we got through it and it's a far away memory now.  He also had a tumor removed over his stomach.  A huge tumor on his adrenal gland (tendrals wrapped around his Vena Cava a major artery) disappeared with the Avastatin and Gemsar, Gemsitamim (spelling on all these is wrong but what Dr. Nagourney did was to subject Rick's specific tumors to various chemo therapies and found the ones that work on HIS DNA).  So get rid of the tumors and get on the right chemo. But I believe it is the Tarceva that has done the most good.  He is lucky as he is in the small group that benefit from Tarceva. 2.  Positive Mental Attitude - Rick is a Marine and he committed to fighting the disease to the end.  The best advice we ever got from a cancer survivor was "live like you're living."  Make plans, do activities, BELIEVE you'll live.  Now Rick was curled up in a sweating, feverish ball and weighed 148 (he's 6' 2") at one point, but we never gave up. Even when the VA doctors did.  We found Rational Therapueutics and Dr. Nagourney (Rick to be featured in the Long Beach Memorial Hospital Annual Report he is such a miracle).  He is now over 200 lbs and very active.   Keep fighting.  Stay positive. 3.   Quit smoking.  Duh, but when you think you're dieing and the great medical institutions like UCLA and Cedars Sinai tell you you're going to die in 9 months, you say "what the heck."  But quit anyway,. 4.   Get on Tarceva and stay on it no matter how bad the rashes/side effects.  Rick is STILL being told by the VA that he'll die but his outside oncologist believe the cancer is gone.  And this man admits that to cure Stage IV cancer is nothing short of a miracle.  Dr. Nagourney says that "either the cancer survivies you or you survive the cancer."  Well Rick appears to have survived the cancer.  No tumors for 2 years.  So get help with the cost if you can through Genentec, the US gov't just launched a $75 million bill which may provide support or if you're lucky enough to be a military vet you can get the generic form (elintrob) free.  No matter what don't go off it.  He has suffered with his sores for a year but we are finding how to combat them.  They appear to grow along the hair folicle so pull the hairs around the sores.  Keep clean.  And we found that the TENS unit which pushes electrical impulses through the sores kills the bacteria.  5.  Basic Genetics and Age.  Rick was 50 when he was diagnosed.  He is super strong and healthy (blood pressure, blood workup, fit) other than the cancer!  He is one of the lucky ones with a strong body. When we first learned of the cancer we got the books on diet and did try to eat better but frankly we haven't really followed that advice.  He's diet is similar to when he was normal:  cereal for breakfast, a peanut butter and jelly sandwich for lunch and dinner from a local restaurant.  Plus he loves ice cream.  That being said, there is no doubt that a good diet will benefit anyone but for us, Western medicine was a greater contributor to his health. Excercise, we try and walk at least 20 minutes each day for the physical benefits and the all important Vitamin D which is supposed to be the next miracle vitamin.  Plus it really helps with the mental attitude part.  So go ahead and do a short walk if you can.  Just know this:  miracles happen.  Rick should've died 2 years ago.  He is alive and well.  He prays a lot.  Not a big church goer but he "gave it to God" and I believe this has helped him.  It's his spiritual attitude inside that has helped him over the super tough spots.     Jenicol Sat, 19 Jul 2008 00:00:00 GMT  On 7/13/2008 Diana Y wrote:I started Tarceva in February this year and I have not spoken to anyone that has been on it for any long length of time. I'm wondering about the "side effects" later on? Does the hair grow back in a year?? Does the rash always come and go? Does Tarceva usually keep on "working" or does the body get used to the pill and stop "holiding off" the cancer at some point?Thanks!DianaDear Diana, I had Stage 3 NSCLC. I have been on Tarceva for 19 months and I am doing great! My hair grew back in really great-it is just kinda frizzy but hey, I am just grateful for hair. I've noticed that the rash was worse at the beginning but i'll notice some rash like stuff on my abdomen at times. I take 150 mg every day. I am so grateful for a drug like Tarceva. Best Wishes to you! Lisa Maddielover Sun, 20 Jul 2008 00:00:00 GMT