Tough case here… I am a non smoker fighting a non small cells lung adenocarcinome since Mar 2010.
After left lung lobectomy and coadjuvant chemo (cisplatines + gencitabin), cleaned in Oct 2010 until Jan 2012. Controls every two months.
Surgery showed a risk factor with nodule sticked to the pleura.
PETTC Jan 2012 showed 6 nodules around the lung, pleura densification. More 2 lines of chemo (cisplatines+pemetrexed, erlotinib). 2 Toracentesis to remove pleural infiltration (500ml first time loaded with adenocarcinome cells, second time 500ml showing no cells), pleuradesis in Dec 2012.
In Dec 2012 PETTC showing metastasis in spleen, suprarenal, vertebrae, femur and extensive pleura densification. Alk and efgr negative.
Checked Her2 in Jan 2013, showing a mutated gene, seccioned in half. Started Herceptin+Docetaxel. After three sessions, metastasis disappeared and disease is residual in pleura.
Recently finished more three sessions, doing my checking exams (PET TC, analysis, Ecocardiogram for FEV) this week,
My question: If this continues going well, should I continue with Herceptin? If yes for how long? If not, what?
I am in great shape, gaining weight, recently run terry Fox’s 4,5 km race, gym 3 times a week.
But Herceptin is very very expensive in this country 5k euro/session and my insurance is waisted…
Thank you so much.
Best regards
Manuel
Reply # - May 20, 2013, 01:30 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
Hi Manuel, I'm very sorry you're going through this and have such questions about money. On the other hand how wonderful it is to know you're doing well now.
When you say your insurance is wasted do you mean they intend to stop paying for herceptin? That's a very scary thought but know that the type of thing happens. US insurance is set up to pay chemo as long as it's given through IV. Tarceva and other pill form targeted therapies are payed through the "'drug plan" wing of the insurance which is wholly different and often won't pay. In these cases the manufacturer of the drug often steps in and helps with paying. I don't know that that would be an option for you but it would be worth some calls.
I will ask a doctor to comment on your questions about how you might work around a very expensive drug.
I hope you find a way to stay healthy for a very long time,
Janine
forum moderator
Reply # - May 20, 2013, 01:34 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
Hi Manuel,
Welcome to GRACE. It's great to hear how well you're doing with Herceptin.
For legal reasons, the doctors here can't tell you what you should do, since you're not a patient of theirs. But you're question has been discussed with regard to other targeted therapies. It's always tough trying to decide how long to continue such a regimen, not knowing whether the treatment is what's keeping the cancer at bay or if the cancer is just not active at all. What's not well tested is whether it makes a difference to continue uninterrupted use of the drug or stop and resume if there is progression. I'm sorry that the cost of the drug is a factor.
As Dr. West has written previously in the context of the targeted therapy Tarceva:
"There is no information to answer that question. I don't prefer to have patients stay on a treatment indefinitely in the absence of evidence that it's treating anything. Most people aren't on tarceva for a matter of years, so we don't have a lot of information about the long-term side effects. It's probably worth the risk if someone has a cancer that is clearly being treated very effectively by the Tarceva, but if it's being continued and may be adding nothing, it's hard to justify staying on something indefinitely that may have real risks for unnecessary side effects.
I can't say how many scans or how long is long enough, but I've given many of my patients a break from treatment if they've been stable for 6-12 months, largely to clarify whether they'd do just as well without it. It's possible to resume a treatment later if the cancer progresses while someone is off of a treatment, and at least by testing with a break you can get a sense of whether the treatment is doing anything or it's really the underlying situation itself." - http://cancergrace.org/forums/index.php?topic=3840.msg22616#msg22616
JimC
Forum moderator
Reply # - May 20, 2013, 02:50 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
First of all, I'm very glad to hear that you feel well and the combination of chemotherapy and herceptin worked so well! Your case is very unusual, and while HER2 mutations are described in lung cancer there is not much evidence that drugs like herceptin work as well as they do in breast cancer with amplified HER2. In your case, it isn't clear if it is the herceptin or the docetaxel that is most important, but it certainly could be either or both.
In the United States, we often continue chemotherapy or targeted therapies indefinitely if we know they are helping. For example, if a patient's cancer has an EGFR mutation that responds to erlotinib, we usually will continue the erlotinib as long as the side effects are tolerable. However, if the side effects are too harsh, or the patient is struggling to afford the medication, it is reasonable to take a break and restart it if the cancer regrows. Will it be equally effective if stopped and restarted? There is no way to know, but sometimes you simply have to do what you have to do.
It is reasonable to consider continuing the herceptin since it may be helping, but there is no evidence that it would be worse to stop it and restart it if the cancer starts to regrow. Certainly with chemotherapy we usually have to eventually give patients a break since the side effects tend to build up over time. Good luck in whatever you decide to do!
Reply # - May 20, 2013, 03:50 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
Dr. Janine,
Portugal is facing a bad economic crisis and I have two problems here, the herceptin-for-lung-adenocarcinome is mot protocolized in the free health public service , so I have to do it a private hospital; no Public Health System available for non-protocol treatments, even with miraculous, at least short term, results; my insurance is waisted because it was limited to 18k euros yearly, spent already, and each herceptin+docetaxel sessions costs a bundle;
I guess the problem with pharma's interest in my case is very reduced, since herceptin is about to lose its patent....2014?
Dr. Jim I understand that doctors can not offer their advice for their non patients; and Dr.Janine I have much cheaper options in other countries in the world that even with travel costs still put the price down to 1/3 of what is costs here; so options, less convenient for sure, are still available;
Dr. Jim my main technical question is: lets imagine that herceptin is the pharma working in my cocktail; by the way I have no side effects whatsoever (FEV fine, appetite, weight, breathing, etc, all is well, except losing "body" fur, but amazingly with my hair growing stronger than ever); :-)
If a patient like me stops herceptin, can the gene remutate so that is more prepared if metastasis come back and I restart herceptin? Is there any downsize with the gene mutation if i temporarily stop the treatment?
Dr Pennell, I am in the middle of a divide.
My main doctor wants to keep me on herceptin, because it is working, and becauseit is the prescribed protocol for breast cancer when her2 mutates; on the other hand, another doctor says that there is no evidence off the continued treatment added value; any literature/research/expert I should read and follow? Or am I the only case and no learning available?
PS: Do not know if it is a relevant information but my brother died at 50 of nsc adenocarcinome, although heavy smoker in March 2011, and my father had cancer also!
Reply # - May 20, 2013, 04:34 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
Hi Manuel,
Just to be clear, neither Janine nor I are doctors; we both came to this site to learn about lung cancer to help our spouses and we've learned a few things because we've both been here a while. But thanks for the attempt to make me a doctor without all those years of medical school!
It's not known for certain whether either continued treatment or a break from treatment leads to further mutations, although with targeted therapies most patients' cancers eventually develop other mutations which make them resistant to that targeted treatment. There is speculation that perhaps taking breaks from targeted therapies prolongs their effectiveness by delaying the emergence of new, resistant mutations but there is no conclusive proof of that.
JimC
Forum moderator
Reply # - May 20, 2013, 04:40 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
Thanks again Jim and Janine and congratulations for your great contribution.
You know that university when started was just a bunch of citizens around savants, discussing freely random or topicked issues....:-)...but I guess studying all those years makes the doc sufix a week deserved one. I heard of these break therapy studies also. But the argument of keeping the same trastuzumab / (herceptin) protocol as used in breastcancer is also a powerful one. If it works in other cases with one year therapies, why changing in the lung adenocarcinome ignorance circumstance?
Best regards
mf
Reply # - May 20, 2013, 06:47 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
I want to point out a couple of things Dr. Pennell said, " In your case, it isn’t clear if it is the herceptin or the docetaxel that is most important, but it certainly could be either or both." and ..."Will it be equally effective if stopped and restarted? There is no way to know,..."
These are a couple of ideas that aren't unique, oncologists have to consider both daily when making decisions with their patients. I just wanted to point out that it would not be unusual to try treatment without the herceptin to see what effects it has on your cancer no matter what the financial obstacles. So it may be worthwhile to stay put and try it.
Please keep us posted what you decide.
Janine
Reply # - May 20, 2013, 09:14 PM
Reply To: Treating Lung Cancer Adenocarcinome her2 mutated, with
Herceptin (trastuzumab) is not well studied in lung cancer, so there is really no evidence to guide any recommendations. As Dr. Pennell suggested, we can't know an answer to how best to proceed and need to rely on our judgment and the realities and limitations of cost, availability of drugs, etc. But as of today there is no research to tell us a right answer to your questions, unfortunately.
-Dr. West