Background:
My 80 yr. old mom was diagnosed with Stage IV NSCLC in 2007. (adenocarcinoma, both lungs, chest, esophagus) Never smoked. No gene testing then. She had Taxol and Avastin for 6 months. Developed numbness, so weak she couldn't walk. Started 150mgTarceva early 2008. Cancer shrunk immediately and she has been on Tarceva since. Great results.Resumed normal life. Has managed side effects but recently she has had two bouts of rash on her legs that have been beyond severe. Both times her oncologist took her off Tarceva (1 month, then 5 weeks) After the first bout she went to 100mg. The last time the dermatologist thought she had staph infection, her legs were weeping sores that looked like a burn victim. Cleared after being off for 5 weeks. Wednesday oncologist reduced her meds to 100mg every other day because we begged him to do something. (She also takes coumadin) But most recent scan (3.25.13) showed very slight increase in plural effusion in one lung. First increase ever since on Tarceva. which could be from stopping for 5 weeks.
Question:
1aAre there any other options of inhibitors that have been used effectively if she can't tolerate Tarceva?
1bOr are there any maintenance drugs that reduce the rash and can be used with Coumadin? Dr. has used Doxyclycline which doesn't help any more, prednisone, and antibiotics that merely control the infection. (We have read home remedies but they don't help any more)
We are blessed to have mom 6 years when they predicted 6 months, but don't want to give in now.
Thank you for your help.
Reply # - April 20, 2013, 07:59 AM
Reply To: New treatments for Stage IV NSCLC that replace Tarceva
Hi jeannielee, I'm very sorry your mom is suffering so with that ghastly rash.
When the rash or other side effects become too much for people on tarceva many doctors move the dose down even more than 100mg. Some do very well on as low as 25mg in both keeping cancer stabilized and managing side effects.
It's very possible that the 5 week break may have destabilized her. A slight plural effusion suggest that. I know it's difficult to do so but it isn't reason to start thinking about next treatments. It sounds like she still has a lot of mileage left on tarceva.
It may be worthwhile to have the infections tested so they can be targeted more closely. Certain spring, a member of Grace had very similar problems until specific testing for her odd ball type of infection.
I hope this is helpful and your mom is around for much longer.
Janine
Here’s the list of videos done at the International Association for the Study of Lung Cancer (IASLC) 13th Annual Targeted Therapies in Lung Cancer meeting. http://cancergrace.org/general/2013/02/20/iaslc-vids/
Reply # - April 20, 2013, 10:36 AM
Reply To: New treatments for Stage IV NSCLC that replace Tarceva
Your poor mum. These staph infections can be horrible.
Unfortunately I think the short answer to your question is "no". The next-generation version of Tarceva, afatinib, seems to have even worse effects on the skin.
A couple of years ago Dr Mario Lacouture, a dermatologist, did a series of posts and Q&As for GRACE. Here he recommends sending samples off for culturing in a lab so that, as Janine was saying, you can get the right antibiotic treatment for your mother (p. 5):
http://cancergrace.org/cancer-treatments/files/2011/09/dr-lacouture-on-…
and here he mentions a couple of antibiotics that might be helpful (p. 5):
http://cancergrace.org/cancer-treatments/files/2011/09/qa-dr-lacouture-…
Dr Lacouture has found that a common culprit is staph aureus, so it might be worth mentioning that as a possibility to your mother's doctors. It can be really nasty.
Hope your mother continues to do well, even if she needs a lower dose of Tarceva. All best.
Reply # - April 20, 2013, 12:37 PM
Reply To: New treatments for Stage IV NSCLC that replace Tarceva
Congratulations on her doing so well for so long. I'm sorry it's been so difficult lately.
I think the best resources are the links provided by certain spring and Janine's summary that 100 mg daily isn't the lowest that can be done, so an alternative with fewer side effects than 100 mg of Tarceva daily is a lower dose of Tarceva daily: it comes in 25 mg tablets, in addition to 100 mg and 150 mg tablets, since some people need that flexibility.
You can certainly try to take oral antibiotics and/or steroids and hope to limp through at a current dose that is leading to a lot of difficulty now, but my experience has been that this tends to be a fool's errand that rarely works well with ongoing treatment.
-Dr. West
Reply # - April 30, 2013, 11:56 AM
Reply To: New treatments for Stage IV NSCLC that replace Tarceva
Thank you all so much for your responses. My mom was sent by her ONC to a dermatologist who knew nothing about Tarceva. Onc never had her come to see him despite the severity of her condition. Derm. questioned her for about 1 1/2 hours about the rash. Then they did a biopsy. My mom called and called for results but it took 6 weeks to get the results back to the Oncologist. She never received a copy herself to this date. (The nurse told her she had a staph infection on the phone which was false, thankfully.) If she did it could have been really serious. So six weeks after this horrible infection, she finally saw her oncologist. I am not local so it is very difficult to deal with what sometimes looks like incompetence. So now I am trying to find out on my own if her care is adequate. I appreciated the link about treatment and prevention of skin problems. Her oncologist in not a specialist in Lung Cancer and does not seem familiar with Tarceva, so this information is invaluable to us.
It is difficult because she is on Coumadin which somehow doesn't work well with Doxycycline. Now Doxycycline doesn't seem to help anyway. The last time the doctor tried Prednisone, also. I am mainly concerned about secondary infections, which the article mentioned. Her doctor and dermatologist were so slow to act that next time I want to be prepared with information to help her deal with it quicker.
Reply # - April 30, 2013, 09:04 PM
Reply To: New treatments for Stage IV NSCLC that replace Tarceva
There are a lot of things written in discussion forums and some posts here about rash management, but this doesn't substitute for access to an oncologist with plenty of experience with lung cancer and Tarceva, and/or a dermatologist who has some familiarity with managing this kind of rash (however, there aren't very many of those, I must admit). Dr. Lacouture's content is really among the best resources out there.
-Dr. West
Reply # - May 1, 2013, 12:52 AM
Reply To: New treatments for Stage IV NSCLC that replace Tarceva
JeannieLee, Did they find out what the bacteria was? Mine actually was a staph infection.- I ended up with a boil on the back of my neck (sorry, all). I still get the same bacteria inside and out - for eg in my nose as Dr Lacouture describes. In retrospect I wish they had cultured it earlier and clobbered it with flucloxicillin, which is what I take for it.
You might suggest to your mother that she keeps an eye out for infections in the fingernails/toenails ("paronychia") - those can also be a trial and need to be stamped on (sorry, wrong choice of metaphor) as soon as they appear.