Cancer related lymphangitis as progression to Tarceva.

Hi Vera,

I've read your thread with Jim and want to add my welcome.  I'm very sorry you're not doing well on tarceva any longer. 

Lung cancer related lymphangitis is a fairly rare complication of lung cancer and unfortunately there has been little headway in treatments to combat this complication beyond chemo (which hasn't proved to be very effective in PLC) and supportive care.  This is why there have been several top cancer publications that have reprinted an article on a small retrospective study of apatinib in people with lung cancer related lymphangitis.  At P46 it reads, "Conclusion: Pulmonary lymphangitic carcinomatosis is a disease of lymphatic spread in the advanced malignant tumor, Apatinib not only has good curative effect, but also brings obvious survival benefits, and the incidence of adverse reactions is low and the patient is well tolerated.  Apatininb has become the main treatment of PLC compared to the traditional treatment."  //www.jto.org/article/S1556-0864(18)30880-3/abstract

I hope you don't have PLC but if you do I hope you do well on the treatment that is chosen.

All the best,

Janine

Hi Vera,

I didn't note this in my previous post but should have.  In case you're like most of us you've entered into the world of cancer care unprepared with much to learn and quickly, it's why Dr. West started this site.  This study is far from proof of efficacy but is as close as we have and are likely to get.  If you want to talk to your oncologist about apatinib you're likely to fair better with the jto article in hand or on your phone, it's very possible she hasn't seen it because there is so so much info coming at med oncs every day. (again a reason Dr. West started this site and believes patients should be a partner in healthcare :) )  Too without clinically proven data the healthcare system or insurance may initially refuse payment.  But with the article from JTO and your oncologist's input insurance companies can often be swayed.  

Below there is specific info on studies

The study I mentioned above isn't proof that apatinib will have efficacy for most people with PLC but it might be as close to proof as it gets because complications that are uncommon often don't get in-depth studies because there aren't enough people to fill a trial.  This means oncologists are left to use the best info they can gather.   FYI, since cancer can and will do anything most people run into situations like this where there is little or no info on management.  

Large phase III clinical trials are needed to prove a treatment is effective but in the case of an uncommon complication like PLC there may not be enough patients for such a study.  Small studies like the apatinib study are used to gain a better understanding of whether or not to create larger more comprehensive trials that then lead to hard data about whether a treatment has efficacy.  Also retrospective studies are those that look at already completed studies that are testing something else.  In this case, there were a handful of people with PLC that were a subset of a larger study of nsclc and apatinib. 

Vera,

 In searching the literature there are only discussions of the existence of MET, exon 16, H1112R and that it is 1, germline meaning it's passed down from your parents and not acquired during treatment, 2, it is linked to a predisposition of renal cancer and 3, that if found one should be monitored.  I would assume a discussion with a physician to test and if found monitor closely any family members found to have the same mutation.  Unfortunately, there are no targeted drugs to combat cancer that is driven by that mutation. In a previous thread, Dr. West said he didn't have information on that specific met mutation.   Though trying a met inhibitor is a stab in the dark idea that has some merit, your ild and shortness of breath will need to be addressed asap. 

If your pulmonologist has not ruled out drug-induced ild there still seems to be the possibility that your pneumonitis/ild is drug-induced which means stopping tarceva and other egfr tki's should probably be permanent. 

 Avastin with a chemo doublet or singlet would be appropriate for adenocarcinoma in general.  It covers needing to stop tarceva in case your ild is drug-induced and it covers the possibility that VEGF might have efficacy on PLC if you have it.  The big picture is to treat the ild that's done by treating the underlying problem which is the cancer itself.  Immunotherapy isn't usually effective in those with egfr mutations so probably isn't the first option.  This is much too complicated a situation for anyone online to suggest what's best but I hope there are some facts here that will help you in the decision making process. 

Unfortunately, your situation is unusual and complicated with tons of moving parts which is why Dr. West isn't able to address yours specifically.  You need hands-on and eyes on your case which means your treatment team needs to help you make these decisions. 

I wish there were clear answers to the direction your treatment should move.  Please keep us posted.

Hoping for the best,

Janine