CancerCompass message board discussion started by Dotty on 3/11/2007 http://www.cancercompass.com/message-board/message/all,10265,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi,I live in New Zealand and was diagnosed with nsclcstage 4 May 2006.  Since then I have had Chemo and had a remission of only 8 weeks.  So I started on Tarceva and have been on this for 6 weeks.  I had an awful face rash that drove me insane so my Oncologist said to stop taking the pills for 7 days and this has really worked well, although there is still a little scaring.  I have nodules in my neck on the left side and my Oncologist has said that these would go down if the Tarceva was working and measured them, so of course I am now obsessed with these darn things.,  I go back Wednesday to have them measured again to see if Tarceva is working.  Has anyone had this experience?  Also if you are on Tarceva how long was it before you were told that it was working for you.  I look forward to any reply thank you.   Dotty Sun, 11 Mar 2007 00:00:00 GMT  On 3/11/2007 Dotty wrote:Hi,I live in New Zealand and was diagnosed with nsclcstage 4 May 2006.  Since then I have had Chemo and had a remission of only 8 weeks.  So I started on Tarceva and have been on this for 6 weeks.  I had an awful face rash that drove me insane so my Oncologist said to stop taking the pills for 7 days and this has really worked well, although there is still a little scaring.  I have nodules in my neck on the left side and my Oncologist has said that these would go down if the Tarceva was working and measured them, so of course I am now obsessed with these darn things.,  I go back Wednesday to have them measured again to see if Tarceva is working.  Has anyone had this experience?  Also if you are on Tarceva how long was it before you were told that it was working for you.  I look forward to any reply thank you.   My wife has been on Tarceva since May, 2005. She was diagnosed in Nov. 2004 with non small cell lung cancer, adenocarcinoma and has never smoked. She had some chemo which shrank the tumors but then put on Tarceva when the chemo failed. Besides a tumor in the lung, it had spread to her lymph system and she had nodes in her neck. Within 6 months after starting Tarceva they classified her as having "no evidence of the disease" and she goes for CAT scans every four months. She has had skin irritations which if left untreated become very infected, but she has learned to quickly apply creams or take antibiotics when she has the first signs of these as it curbs the problem. She has had some lower bowel problems but seems to manage through the side effects much better with time. We only hope the drug will contnue to keep her cancer in check. We have two great oncologists. One who put her on Tarceva, is part of a cutting edge research center and monitors the disease's progress closely. Our other oncologist believes strongly in Tarceva but seems to have a more practical knowledge of how to treat the side effects. Perry Wed, 21 Mar 2007 00:00:00 GMT Thank you so much for your reply to my question on "lumps" I went last Friday to see my Oncologist and he measured the lumps and thought they hadn't grown but also unfortunatley hadn't shrunk.  I have been on Tarceva for 7 weeks, did it take this long before your wifes lumps went down?  I am once again off to the Oncologist on Friday for the result of a CT.Your wife sounds a strong person as I hope I am and seems to cope well with the side effects.  I too had chemo when diagnosed in May 2006 and it only worked for a little while hence the Tarceva.My very best wishes to you both.  Dotty Wed, 21 Mar 2007 00:00:00 GMT The nodes or lumps in her neck were reduced by the initial chemo treatments. When the chemo failed, there were signs it was spreading back to her lymph nodes and the lung tumor stopped shrinking. That's when they switched to Tarceva. The rash can get pretty severe but there are a lot of prescription creames her doctor gave her and when applied at the first sign of redness really made a difference. At first she had a hard time recognizining it was a side effect rash, always thinking something minor. Perry Wed, 21 Mar 2007 00:00:00 GMT Thank you for your useful information.  I have a rash which is pretty awful but I can cope with that.  I do get very very tired which I hate as I am an active person but if it is shrinking any tumours I don't mind.  Anyway tomorrow will be the telling time so fingers crossed for a good result.Best regards Dotty Wed, 21 Mar 2007 00:00:00 GMT I hope you get good news. A lot of the tired feeling was related to the chemo. Even though she got Nulasta and other booster shots, it took her six months after the chemo to get past the tired feeling and stuff like sensitivity at the ends of her fingers, some vision issues and reduced reflexes. She does not have issues with those things now that she has been only on Tarceva.. Perry Thu, 22 Mar 2007 00:00:00 GMT Had my oncologist appointment today and not good news.  The Tarceva is not working so I am coming off that.  They have suggested another type of chemo which may or may not help.  I am at the moment devasted as I thought the Tarceva was working.  Dotty Thu, 22 Mar 2007 00:00:00 GMT Dotty,I am so sorry to hear that Tarceva didn't work for you. I understand your frustrations. My mom is battleing nsclc and we had placed a lot of hope in Tarceva. However, after only three weeks a PET scan showed that there was a lot of new tumor growth that had only happened in the last 3-4 weeks - so they concluded that it wasn't working and took her off of it immediately. We were heart broken at first, just as you were devestated - however, now we are striding forward and looking for new treatments. What are they considering putting you on next? My mom has to undergo some radiation first - but then they are starting her on avastin mixed with chemo. I have read some good things about avastin - it works in a very similar way to Tarceva.Keep your hope up, okay? There are other options out there so please keep fighting strong! That's what we are telling my mom every day!!Take care,Nicole Nikiole Thu, 29 Mar 2007 00:00:00 GMT I am very sorry to hear about your situation. Please continue to be strong and fight!   My mom has stage IIIB which is treated as a stage IV lung cancer.  She's is/always has been a nonsmoker.  There is a doctor in the United States that has a cream for the rash that is associated with Tarceva.  His name is: Mario LaCouture, MD  at Northwestern University in Chicago,Illinois.I hope this helps!  Please keep me posted.. Tonimf3 Thu, 29 Mar 2007 00:00:00 GMT I am suffering with the severe rash can you tell me what kind of cream your wife is using my Candace1991 Thu, 12 Apr 2007 00:00:00 GMT Hi, I am sorry to hear about your rash.  I am not sure of the name of the cream b/c my Mom is doing a clinical trial and is not on Tarceva.  My sister was in touch with the doctor though and he is very personable and seems like a great guy.  I know that you could look him up and get a number to find out more about his product.  Good luck! Toni Tonimf3 Mon, 16 Apr 2007 00:00:00 GMT Hi there,My mother in law had stage 1 chemo early last year for LC which she responded OK to. Subsequent to the chemo she started to get chest pains in Nov/Dec 06. So she started on Tarceva in January, after about a week on the drug she felt a lot better. And she is still taking the drug now and her condition has seemed to stabilised. This may partly be because she is an Asian non-smoking female (the group that it apparently works best on). However she has had rashes and pimples come up on her face. The pimples went after the first few weeks but a deep red rash remains. She also has sun-burn like symptoms down her back and shoulders with the skin peeling off in places - as you would have with sunburn. So I think the nodules you have are quite typical - and my mother-in-laws oncologist has also said the same thing - they are an indication that the drug is working.  About a month ago she got a chest infection (unrelated to the LC) and she went into hospital - they did some tests and found elevated amounts of a chemical the name of which I cannot remember - apparently related to Tarceva. So for the past 1 month she has been dropped down to 100mg  - with no adverse affect.In any case you wrote well over a month ago - how is the situation coming along for you now? Have the side effects abated I hope the drug is working for you.Our main concern is the massive cost of Tarceva (3500 for 1 month of 100mg). We are really worried now that we may have to discontinue - and go to 2nd line Chemo - but it is really terrible to have to make such a decision because Tarceva is working so well for her.Kind regards,Wayne On 3/11/2007 Dotty wrote:Hi,I live in New Zealand and was diagnosed with nsclcstage 4 May 2006.  Since then I have had Chemo and had a remission of only 8 weeks.  So I started on Tarceva and have been on this for 6 weeks.  I had an awful face rash that drove me insane so my Oncologist said to stop taking the pills for 7 days and this has really worked well, although there is still a little scaring.  I have nodules in my neck on the left side and my Oncologist has said that these would go down if the Tarceva was working and measured them, so of course I am now obsessed with these darn things.,  I go back Wednesday to have them measured again to see if Tarceva is working.  Has anyone had this experience?  Also if you are on Tarceva how long was it before you were told that it was working for you.  I look forward to any reply thank you.    Wayne1949 Wed, 25 Apr 2007 00:00:00 GMT Hi my husband has been on tarceva for 4 months he had a bad rash on his face and back at first but it cleared up after about 3 weeks the doctor recommended  a lotion called Lindi Skin it was a life saver it is made just for people with cancer & radiation treatments You can order it on the internet the web site is www.lindiskin.com                               good luck    Carrie  Cbc0916 Fri, 11 May 2007 00:00:00 GMT  On 3/11/2007 Dotty wrote:Hi,I live in New Zealand and was diagnosed with nsclcstage 4 May 2006.  Since then I have had Chemo and had a remission of only 8 weeks.  So I started on Tarceva and have been on this for 6 weeks.  I had an awful face rash that drove me insane so my Oncologist said to stop taking the pills for 7 days and this has really worked well, although there is still a little scaring.  I have nodules in my neck on the left side and my Oncologist has said that these would go down if the Tarceva was working and measured them, so of course I am now obsessed with these darn things.,  I go back Wednesday to have them measured again to see if Tarceva is working.  Has anyone had this experience?  Also if you are on Tarceva how long was it before you were told that it was working for you.  I look forward to any reply thank you.  Hi.I am on tarceva.In sept 05 i was diagnosed with nsclc.I was immediately given 27 days of radiation,and had to wait 2 weeks befor i went on tarceva150mg In the following march the scan showed that my tumour had shrunk 70%.Brilliant. Not too sure if it was the tarceva or radiation or both.I had to wait another 3 months to have the scan and it showed the same response 70%.So now i am on tarceva every day,until my Ins Co stops paying this enormouse amount,of which i hope will not happen.The side affects i still find horendous,but i will not go into that.I wish you well Dotti,and hope the tarceva works for you, Goldfinger. goldfinger Mon, 17 Sep 2007 00:00:00 GMT  On 3/11/2007 Dotty wrote:Hi,I live in New Zealand and was diagnosed with nsclcstage 4 May 2006.  Since then I have had Chemo and had a remission of only 8 weeks.  So I started on Tarceva and have been on this for 6 weeks.  I had an awful face rash that drove me insane so my Oncologist said to stop taking the pills for 7 days and this has really worked well, although there is still a little scaring.  I have nodules in my neck on the left side and my Oncologist has said that these would go down if the Tarceva was working and measured them, so of course I am now obsessed with these darn things.,  I go back Wednesday to have them measured again to see if Tarceva is working.  Has anyone had this experience?  Also if you are on Tarceva how long was it before you were told that it was working for you.  I look forward to any reply thank you.  Hi.I am on tarceva.In sept 05 i was diagnosed with nsclc.I was immediately given 27 days of radiation,and had to wait 2 weeks befor i went on tarceva150mg In the following march the scan showed that my tumour had shrunk 70%.Brilliant. Not too sure if it was the tarceva or radiation or both.I had to wait another 3 months to have the scan and it showed the same response 70%.So now i am on tarceva every day,until my Ins Co stops paying this enormouse amount,of which i hope will not happen.The side affects i still find horendous,but i will not go into that.I wish you well Dotti,and hope the tarceva works for you, Goldfinger. goldfinger Mon, 17 Sep 2007 00:00:00 GMT  On 3/11/2007 Dotty wrote:Hi,I live in New Zealand and was diagnosed with nsclcstage 4 May 2006.  Since then I have had Chemo and had a remission of only 8 weeks.  So I started on Tarceva and have been on this for 6 weeks.  I had an awful face rash that drove me insane so my Oncologist said to stop taking the pills for 7 days and this has really worked well, although there is still a little scaring.  I have nodules in my neck on the left side and my Oncologist has said that these would go down if the Tarceva was working and measured them, so of course I am now obsessed with these darn things.,  I go back Wednesday to have them measured again to see if Tarceva is working.  Has anyone had this experience?  Also if you are on Tarceva how long was it before you were told that it was working for you.  I look forward to any reply thank you.  Hi.I am on tarceva.In sept 05 i was diagnosed with nsclc.I was immediately given 27 days of radiation,and had to wait 2 weeks befor i went on tarceva150mg In the following march the scan showed that my tumour had shrunk 70%.Brilliant. Not too sure if it was the tarceva or radiation or both.I had to wait another 3 months to have the scan and it showed the same response 70%.So now i am on tarceva every day,until my Ins Co stops paying this enormouse amount,of which i hope will not happen.The side affects i still find horendous,but i will not go into that.I wish you well Dotti,and hope the tarceva works for you, Goldfinger. goldfinger Mon, 17 Sep 2007 00:00:00 GMT