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Hi, I have been lurking here for a few months (I'm shy) I have BAC stage 3-4. I have recently started on Tarceva and was wondering when the rash usually starts. Also have any of you purchased a Moss report? http://www.ralphmoss.com/
Thanks
Jim
I wasn't on Tarceva and I haven't purchased a Moss report, but I wanted to welcome you to the board! Thanks for coming out of lurkdom! We're looking forward to getting to know you better. :)
Hugs!
Lorie
I am VERY leary of anyone who charges anything for his cancer information, especially $350.00. Info is available for free on the internet from NCI, NIH and other reputable institutions. Also, I agree this board is most helpful...........M.C.
Thank you for the warm welcome. I am glad I left the shadows of lurkdom.
It is strange that I am hoping for a reaction to Tarceva but it is my understanding that if you don't get the side effects your don't get the benefit. This is the first thing in this adventure that almost seems fair!
Jim
Sorry you are here but welcome and glad you came out of the woodwork! When I was on Tarceva last year the rash started almost right away - they lowered the dosage and gave me antibiotic cream but didn't work. Don't worry about not getting the rash - I got it and the Tarceva didn't work on me. Hoping it will work great for you. Take care.
Sylvia
My wife started Tarceva in January. It took two weeks for her rash to start. Our Doctor has told us that there is not a 100% correlation between getting a rash and having Tarceva work for you. Some people do not get a rash and Tarceva still works for them.
Last May she had her first Pet/Scan since starting Tarceva, and the Tarceva had gotten rid of the cancer in her backbone, and reduced the cancer SUV Level of her lung tumor from a 3.9 to a 2.0. SUV is a Pet/Scan rating to measure cancer activity. The lower the number, the better.
I looked at the Moss Report web site but did not spend money on it. The site states that this person is an expert on alternative treatments. I am more interested in main stream treatments and the new treatments that are being developed at research centers.
Eric
Thanks Sylvia and Eric. Reading your posts together defines the lung cancer experience.
The future is unknowable
Attitude is everything
Jim
My skin was very dry at first, I did not devlop a rash for 9 months. Tarceva reduced my tumor to a spiculated scar. Unfortunately, after 2 years on it I developed resistance.
Pam
Hi Jim --
The Moss Report is a joke. I had decided to buy their "new" study on lung cancer for $19 to gain insight into whether or not their main product could conceivably be worth $297. I have called them about 6 times since middle of last week. They don't answer, nor do they return calls. I've had it with them and I totally agree with the observations above regarding the likely value of their reports.
Muddy
hI, WHAT TYPE OF CANCER DO YOU HAVE, i MEAN DO YOU HAVE BAC, THEY SAY THAT IS WHAT TO USE FOR BAC ..
SO NOW THAT IT HAS STOPPED WORKING, WHAT ARE YOU DOING?
I HOPE YOU ARE OK AND DOING WELL...
DIANE
I have adenocarcinoma, primarily BAC. Since tarceva I have been in a clinical trial with perifosine (tumors doubled in size), then Alimta (worked for a few months then progression), now on gemzar since sept 15. Cat scan on dec1 showed reduction in tumors!!!
Pam
well thanks for the info. What stage are you in? I dont know much at all about the drugs for the BAC , but I am sure glad that this one is working for you. I have heard pro's and cons about the pill, I am so hoping that I dont have to resort to take anything when they do my 1st scan, I am 2 mos post op. How long have you had BAC.
diane
I was diagnosed in Sept 2005 and am stage IV. Was originally diagnosed as 3B, then they thought they saw something in my spine. i had a malignant pleural effusion. Hopefully, the surgery will work for you for a long, long time!!!
Pam
Diane,
Welcome to the frustration that is lung cancer. As much as the good doctors try, their is much they don’t know. What works for one patient may not for the next. I have BAC and the only thing that has worked for me is surgery. But the stuff that didn't work for me may work great for you. We have some long term survivors on this site. You may be one of them, I hope you are.
I have gotten to the point that I have stopped chemo and am going to try LDN. I am sure the Dr. can keep me on chemo until it kills me but I have other plans for what is left of my life. I don't want to discourage you. Just prepare you for the lack of knowledge. Lots of information around but very little knowledge.
One of the great things about this site is the help dealing with the side effects of the procedures. The folks here are great and understand what you are going through. When life is difficult the people here will be more helpful then the folks that love you but don't share the experience.
Jim
thanks so much and I hope that this works for you. This cancer thing is something i never thought i would be dealing with I have to much to live for, so I am going to make it. have to. and so are you. hang in there .
diane
Well you have to do what you feel is best for you, and sometimes you just never know. Thats why I am on the survivors support group and not the one where everyone is just so down and it gets to you after awhile. My doctor said to be careful what sites you get on, cause some can get you down. This is a wonderful site and theh people all seem very nice and hopeful and your going to do just fine.
diane
bronchoalveolar carcinoma , its a non small lung type of cancer and its different than the other cancers, it can be very slow growing, but yet the doctors dont know that much about it yet, its just been in the last 10 years of so that its starting to get attention.
diane
My husband got a rash but it didnot work for him. Everyone is different just think positive untill otherwise.
Prayers for you that Tarceval works. I have always heard that having the rash shows that the drug is working. However, I have known people that got the rash and the cancer didnt' respond and people that never got the rash and did respond. You should pose this question to Dr. West at Grace Index.
God Bless!
J-me
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