Deb

Hi Katie, Have they checked to see if your dad is a candidate for targeted therapy (i.e., done genetic testing of the tumor)? I am on Tarceva, targeted therapy, and have no side effects but much effect on the cancer. That's great that your dad is feeling good—treatment is supposed to keep him feeling that way! Debbie

Sharon, What an awful story!!!!!! I don't understand why so little seems to be known about Trousseau's. Apparently, quite often it is the first sign that someone has lung cancer, as happened with you. But what you went through before they actually figured it all out!!!! I hope you live in a fairly cool area since those pressure stockings sure get to feeling hot in the summer. I'm using "sport" compression socks (up to my knees) that I bought on line. They're hot, but not as bad as the usual ones. I find that after wearing lesser (thinner) compression stockings for about a day, I my ankles disappear. After a few months on lovenox twice a day, mine was reduced to once a day injections (higher dose). Still get the knots and bruising, but half as many seems like a tremendous improvement. Just don't let them take you off of the stuff! So glad they got the clotting issues solved so now they can tend to the primary problem. Best of luck with that!! Debbie

I was diagnosed (finally) with Trousseau's not long after my diagnosis of NSCLC. Thought I would write in a "heads up" from my experience. Apparently, Trousseau's syndrome has been recognized since the late 1800's as a complication of lung and a few other cancers. I don't understand then why it seems to be low on the radar of treating physicians. I complained of symptoms numerous times, saw my oncologist and my internist, and visited ER's 3 times before the problem was finally discovered—and all through that time I was having horrendous symptoms and could have died suddenly. In addition to having extreme difficulty breathing, primarily due to severe coughing, my ankles and lower legs were increasingly swollen despite having been up continuously for over a month and wearing pressure stockings. I had already been diagnosed and treated for a pulmonary embolism, but my legs and breathing got worse again as soon as I was off heparin and on Warfarin (the usual post-PE progression). Since my INR's kept going extremely high, no one thought to check for additional blood clot problems until after I arrived again at an ER in screaming leg pain and unable to walk. Even then, the doctors felt sure they would not find new clots. How mistaken they were. . . . With Trousseau's, there are changes in the blood clotting mechanisms that are not addressed by Warfarin—someone with Trousseau's is likely to fail on Warfarin but needs to stay on heparin to prevent widespread blood clotting, with all of the associated problems (like deep vein thrombosis, pulmonary embolism, periferral vein thrombi, vein inflammation, swollen legs, fluid retention in the tissues but systemic dehydration, etc). So, if you or your loved one with NSCLC is having increasing difficulties with fluid retention, inflamed veins, etc., perhaps they should be checked for blood clots, e.g., via ultrasound of the legs. Don't rely on Warfarin to solve the problem.

Hi to Everyone, Thank you for all your kind thoughts. I'm doing better every day—even able to do minimal outside chores and use a shovel on snow, or whatever, a couple of times. Not clear yet whether my improvement is due to just the return of a functioning circulatory system (Lovenox) or also to the effects of Tarceva. I've been on the latter over a month but have developed no side effects, i.e., no rash. No imaging scheduled for a few more weeks. Kind of worrisome. But, on a brighter note, my horse is assured to be going to a good home on Friday, my remaining llamas are also going to be moving Friday, and some people are coming over Saturday to meet one of the dogs. Finding good homes for my dependents will make everything else easier. Today, the sun is sparkling off the several inches of new snow and it really is very pretty (I dislike winter). Hope things are going reasonably well or better for everyone else. Deb

Just introducing myself to this most special group: I noticed swollen neck glands early in October and guessed maybe I had lymphoma. Did the initial "wait and see" before my first medical appointment towards the end of the month, after the harvest was pretty much done (southern WI). But just a couple of days after that appointment, I ended up lying down in the pasture instead of shoveling out the barn—just couldn't do it. And a day later, started coughing instead of breathing. The month of November included ER visits and hospitalization with a pulmonary embolism. Things weren't much better after discharge the end of the month, but I was disappointed the diagnosis I had chosen was not the one determined by the pathologist. So then I was on numerous antibiotics that got rid of various respiratory infections while raising my INR's (on Warfarin) to new heights while I still couldn't stop coughing nor start breathing and my ankles totally disappeared. I was still trying to find homes for livestock, caged birds, dogs, and cats when I realized outdoor chores were no longer possible because the pain in one leg had become more than I could handle. With an INR near 6, the doctors didn't bother with an ultrasound of my leg for blood clots, instead focusing on what, for me, were incidentals. Two days later, the pain in my leg was too great even for lying around doing nothing so I was back again at the ER. Oops! 2 DVT's in the large veins of that leg. So I was inpatient again but no longer on Warfarin. Evidently, those mucous-producing cancer cells had clogged up my whole system with "snot" (no big surprise to those who know me) that Warfarin was no match for. But it was found that I have the chromosome 21 nonsense mutation, finally got started on Tarceva, oxygen at home and, 2 1/2 weeks later, I'm doing very well. Even lost 20 pounds (fluid) over the Christmas holiday instead of my usual pattern of gaining 10 pounds of fat! No side effects from the Tarceva yet. I'm sure I will be able to learn lots from all of you more experienced folks. So far, I've been amazed at how effective the medication has been for some—I had figured I only had around 3 months (tumor widespread throughout both lungs, in the pleurae, the pericardium, and lots of lymph nodes and probably elsewhere too). I feel so lucky to have been diagnosed when I could get Tarceva as a first line treatment. And I have the most supportive friends (mostly within the women farmers community) and neighbors!!! Anyone want a really sweet horse?